User login
Trading Kidneys: Innovative Program Could Save Thousands of Lives
While editing this month’s Renal Consult, I noted the mention of “paired kidney exchange” with particular interest. In 2005, I heard about a relatively new concept: matching two or more incompatible kidney donor-recipient pairs to create compatible matches. After conducting some research and interviewing experts, I wrote an article on paired kidney exchange for our sister publication, Clinician News. In the subsequent decade, the concept of paired exchange has expanded to the point that as many as 70 people have participated in a 35-kidney exchange. —AMH
Last year, almost 27,000 Americans received an organ transplant—a new national record, according to the US Department of Health and Human Services. Donations from living persons reached nearly 7,000, an increase of 2.3% from 2003. But despite these positive numbers, nearly 88,000 people are on the waiting list for an organ, and about 6,200 died last year before one became available.
But in some areas of the country, an innovative program is gaining momentum: paired kidney exchange, which puts together two or more incompatible donor-recipient pairs to create compatible matches. And while it will not close the gap between patients in need and those who receive, experts believe it could help thousands of people each year.
The real struggle is finding more willing donors. But Francis Delmonico, MD, Medical Director, New England Organ Bank, Newton, Massachusetts, says paired exchange is “an adjunct. When it can be of help, it’s helped a number of people already. And as with any of this, it’s a lot of work but it’s a tactic that we ought to try and apply anytime we can.”
“There are about 10,000 people who could be put into a program like this,” says Michael A. Rees, MD, PhD, Associate Professor, Department of Urology, Medical College of Ohio, Toledo. “Once you put them into the program, we would hope that 2,000 to 3,000 per year could be matched up and we could do that many extra kidney transplants a year. And that would certainly help to close the gap.”
Continue for how it works >>
HOW IT WORKS
Paired kidney exchange got its start in the US at Johns Hopkins Comprehensive Transplant Center, Baltimore, in 2001. The concept is simple: Recipient A needs a kidney and has a family member or friend, Donor A, who is willing to give. However, testing reveals that Donor A and Recipient A are incompatible. Meanwhile, Recipient B and Donor B find themselves with the same problem. But, it turns out, Donor B could give to Recipient A and Donor A could give to Recipient B. The patients and their donors are approached with the idea of an exchange, and if they agree, two people receive needed organs.
Twenty-two patients have received kidneys through the Johns Hopkins program, according to Robert A. Montgomery, MD, PhD, Director, Incompatible Kidney Transplant Programs (InKTP). Surgeons at Johns Hopkins have also expanded the exchange to three donor-recipient pairs; “triple swap” operations were performed at the hospital in 2003 and 2004.
“Everyone, when they come for an incompatible transplant, is offered the option of a paired exchange, because … if there’s any way to get a compatible kidney, that’s what you try for first,” says Janet Hiller, RN, MSN, Clinical Nurse Specialist, InKTP. “We’ve only had probably two out of a hundred [patients] who have thought, ‘No, I’d rather just get the kidney from my spouse or loved one.’”
“Patients are surprisingly open to this option, and almost all of them … request it when they are initially seen by me,” Montgomery told Clinician News via e-mail. “Some [recipients] have expressed apprehension about not knowing the donor and not being sure they have taken good care of their kidney. The donors have rarely expressed any concerns; they just want their loved one to receive a kidney…. It has universally been a positive experience.”
Ohio’s Rees first heard about paired exchange at a conference in 2001. He returned to his institution and consulted with the living donor coordinator to see if any pairs could be formed from people who had been willing to donate but unable due to blood type or other incompatibility problems. After identifying two pairs (out of 10 possibilities) for whom an exchange might work, Rees brought the patients and donors in for testing. But alas, the match wasn’t quite right.
“It became clear to me that if I really wanted to make this work, I needed a lot more than 10 pairs [to start with],” Rees says. “The numbers—if you try to match up people—go up logarithmically the more pairs that you have. So the chances you have of creating pairs go up exponentially.”
With this realization in mind, Rees set out to find someone willing to write a computer program that could identify potential matches from a larger bank of people pooled from several facilities. After some false starts—no computer programmer would work on the project for academic glory, the only reward Rees could offer—he convinced his father, Alan, to help. The senior Rees’ prototype was the basis for the current system, which links 10 transplant centers in Ohio.
Working with a larger pool of colleagues required numerous teleconference calls to iron out details for the statewide program. Among the questions were, “Are we going to make the donor travel, or are we going to cut the kidney out at home and ship the kidney in a box of ice to the place where it’s going to be transplanted?” he recalls. “And we decided that the donor has to travel.”
The first kidney exchange in the state of Ohio was performed in early November 2004. The third was scheduled for mid-April.
Creating one system to be shared by medical institutions that would normally be competitors took some work. “Trying to get us all to play in the same sandbox was very difficult,” Rees acknowledges. “But we did that; we stuck it out. And we all agreed to come up with something that we all think is a great idea and should help our patients.”
Delmonico, who is also a Professor of Surgery at Harvard Medical School and Visiting Surgeon in the Transplant Unit at Massachusetts General Hospital, Boston, has also seen the gratifying cooperation between medical professionals. “Institutions are competitive in terms of medical care—that’s no mystery,” he says. “But in this instance, the physicians have been simply magnificent in trying to help patients. Innovative programs can be developed and sustained through the kind of collaboration that is going on here.”
The New England paired exchange program, dating back to 2002, is a collaboration involving a dozen hospitals. It started with a paper-and-pen effort (blood type–incompatible patients would be brought to the attention of Delmonico, who would then contact each transplant center, seeking others) but now has its own computer system.
New England also has another variation on the exchange program that is unique to the region, according to Delmonico. “Let’s say I wanted to give to you but I can’t. I’ll give to somebody on the list, and as a result of that donation, you would get a priority for the next available deceased donor kidney in New England,” he explains. “We’ve done that about 20 times now.”
Continue for going national >>
GOING NATIONAL
So where does paired exchange go from here? Johns Hopkins’ Montgomery organized a consensus meeting in March to discuss the possibility of creating a national network; Hiller, Rees, and Delmonico attended.
“I think our goal should be to one day have a national program,” Rees says. “But shipping somebody from Toledo down to Cincinnati is a lot easier to sell to a patient than shipping somebody from Toledo to Los Angeles. And the logistics of trying to do that when you have a whole different set of insurance companies … would be a lot more complicated. So, I think the way to begin is to do it on a more regional basis and prove that the concept works, that people can be satisfied with it, and then begin to expand it.”
Delmonico also thinks a national program is essential. “We need to enlarge the possibility of paired donation and exchange,” he says. “It will not happen successfully in a regional system. There aren’t enough patients that can be identified.” Questions to be answered before such a program could exist, Delmonico notes, include where the system will be based and who will administer it.
“There was a lot of agreement—though not total consensus—on the fact that UNOS, the United Network for Organ Sharing, would be the most likely place to ‘house’ and to manage the data,” Hiller reports. “They have all those systems in place already [and] are capable of managing this large database.”
Delmonico, as Vice President of UNOS, points out, “We have no authority to do that yet. Whether or not the country wants us to do that also remains to be determined.” But the UNOS Board of Directors is open to the idea; last year, they endorsed the concept of establishing a national paired exchange program with the understanding that details would have to be worked out over time, according to a UNOS spokesperson.
Another obstacle to widespread paired donation may be perceptions of it in the eyes of the government and critics: Could it be construed as a violation of the 1984 National Organ Transplant Act, which says that an organ should not be transplanted for a “value consideration”? Legal experts have assured Delmonico that paired exchanges can be interpreted as a gift.
“The government is also, properly, not wanting to see this as a slope toward buying and selling organs,” Delmonico says. “And I am adamantly opposed to that. In the instances that we’ve done paired exchange here, that’s not in the mix. That’s not our motivation, nor has it been the motivation of these donors. We wouldn’t do it if we felt that was the case.”
Montgomery says it will take several years to get a national system set up. But the bottom line for transplant surgeons is that a national paired kidney exchange program would do a world of good, two people at a time. “This is clearly what is best for our patients,” Montgomery says.
“The bigger we can get, if we can spread it nationally, the more people it will help,” Rees says. “And so we have to think of a way to do this so that we’re all satisfied that it’s moving forward in a way that will make everyone happy.”
Reprinted from Clinician News. 2005;9(5):cover, 3, 15.
While editing this month’s Renal Consult, I noted the mention of “paired kidney exchange” with particular interest. In 2005, I heard about a relatively new concept: matching two or more incompatible kidney donor-recipient pairs to create compatible matches. After conducting some research and interviewing experts, I wrote an article on paired kidney exchange for our sister publication, Clinician News. In the subsequent decade, the concept of paired exchange has expanded to the point that as many as 70 people have participated in a 35-kidney exchange. —AMH
Last year, almost 27,000 Americans received an organ transplant—a new national record, according to the US Department of Health and Human Services. Donations from living persons reached nearly 7,000, an increase of 2.3% from 2003. But despite these positive numbers, nearly 88,000 people are on the waiting list for an organ, and about 6,200 died last year before one became available.
But in some areas of the country, an innovative program is gaining momentum: paired kidney exchange, which puts together two or more incompatible donor-recipient pairs to create compatible matches. And while it will not close the gap between patients in need and those who receive, experts believe it could help thousands of people each year.
The real struggle is finding more willing donors. But Francis Delmonico, MD, Medical Director, New England Organ Bank, Newton, Massachusetts, says paired exchange is “an adjunct. When it can be of help, it’s helped a number of people already. And as with any of this, it’s a lot of work but it’s a tactic that we ought to try and apply anytime we can.”
“There are about 10,000 people who could be put into a program like this,” says Michael A. Rees, MD, PhD, Associate Professor, Department of Urology, Medical College of Ohio, Toledo. “Once you put them into the program, we would hope that 2,000 to 3,000 per year could be matched up and we could do that many extra kidney transplants a year. And that would certainly help to close the gap.”
Continue for how it works >>
HOW IT WORKS
Paired kidney exchange got its start in the US at Johns Hopkins Comprehensive Transplant Center, Baltimore, in 2001. The concept is simple: Recipient A needs a kidney and has a family member or friend, Donor A, who is willing to give. However, testing reveals that Donor A and Recipient A are incompatible. Meanwhile, Recipient B and Donor B find themselves with the same problem. But, it turns out, Donor B could give to Recipient A and Donor A could give to Recipient B. The patients and their donors are approached with the idea of an exchange, and if they agree, two people receive needed organs.
Twenty-two patients have received kidneys through the Johns Hopkins program, according to Robert A. Montgomery, MD, PhD, Director, Incompatible Kidney Transplant Programs (InKTP). Surgeons at Johns Hopkins have also expanded the exchange to three donor-recipient pairs; “triple swap” operations were performed at the hospital in 2003 and 2004.
“Everyone, when they come for an incompatible transplant, is offered the option of a paired exchange, because … if there’s any way to get a compatible kidney, that’s what you try for first,” says Janet Hiller, RN, MSN, Clinical Nurse Specialist, InKTP. “We’ve only had probably two out of a hundred [patients] who have thought, ‘No, I’d rather just get the kidney from my spouse or loved one.’”
“Patients are surprisingly open to this option, and almost all of them … request it when they are initially seen by me,” Montgomery told Clinician News via e-mail. “Some [recipients] have expressed apprehension about not knowing the donor and not being sure they have taken good care of their kidney. The donors have rarely expressed any concerns; they just want their loved one to receive a kidney…. It has universally been a positive experience.”
Ohio’s Rees first heard about paired exchange at a conference in 2001. He returned to his institution and consulted with the living donor coordinator to see if any pairs could be formed from people who had been willing to donate but unable due to blood type or other incompatibility problems. After identifying two pairs (out of 10 possibilities) for whom an exchange might work, Rees brought the patients and donors in for testing. But alas, the match wasn’t quite right.
“It became clear to me that if I really wanted to make this work, I needed a lot more than 10 pairs [to start with],” Rees says. “The numbers—if you try to match up people—go up logarithmically the more pairs that you have. So the chances you have of creating pairs go up exponentially.”
With this realization in mind, Rees set out to find someone willing to write a computer program that could identify potential matches from a larger bank of people pooled from several facilities. After some false starts—no computer programmer would work on the project for academic glory, the only reward Rees could offer—he convinced his father, Alan, to help. The senior Rees’ prototype was the basis for the current system, which links 10 transplant centers in Ohio.
Working with a larger pool of colleagues required numerous teleconference calls to iron out details for the statewide program. Among the questions were, “Are we going to make the donor travel, or are we going to cut the kidney out at home and ship the kidney in a box of ice to the place where it’s going to be transplanted?” he recalls. “And we decided that the donor has to travel.”
The first kidney exchange in the state of Ohio was performed in early November 2004. The third was scheduled for mid-April.
Creating one system to be shared by medical institutions that would normally be competitors took some work. “Trying to get us all to play in the same sandbox was very difficult,” Rees acknowledges. “But we did that; we stuck it out. And we all agreed to come up with something that we all think is a great idea and should help our patients.”
Delmonico, who is also a Professor of Surgery at Harvard Medical School and Visiting Surgeon in the Transplant Unit at Massachusetts General Hospital, Boston, has also seen the gratifying cooperation between medical professionals. “Institutions are competitive in terms of medical care—that’s no mystery,” he says. “But in this instance, the physicians have been simply magnificent in trying to help patients. Innovative programs can be developed and sustained through the kind of collaboration that is going on here.”
The New England paired exchange program, dating back to 2002, is a collaboration involving a dozen hospitals. It started with a paper-and-pen effort (blood type–incompatible patients would be brought to the attention of Delmonico, who would then contact each transplant center, seeking others) but now has its own computer system.
New England also has another variation on the exchange program that is unique to the region, according to Delmonico. “Let’s say I wanted to give to you but I can’t. I’ll give to somebody on the list, and as a result of that donation, you would get a priority for the next available deceased donor kidney in New England,” he explains. “We’ve done that about 20 times now.”
Continue for going national >>
GOING NATIONAL
So where does paired exchange go from here? Johns Hopkins’ Montgomery organized a consensus meeting in March to discuss the possibility of creating a national network; Hiller, Rees, and Delmonico attended.
“I think our goal should be to one day have a national program,” Rees says. “But shipping somebody from Toledo down to Cincinnati is a lot easier to sell to a patient than shipping somebody from Toledo to Los Angeles. And the logistics of trying to do that when you have a whole different set of insurance companies … would be a lot more complicated. So, I think the way to begin is to do it on a more regional basis and prove that the concept works, that people can be satisfied with it, and then begin to expand it.”
Delmonico also thinks a national program is essential. “We need to enlarge the possibility of paired donation and exchange,” he says. “It will not happen successfully in a regional system. There aren’t enough patients that can be identified.” Questions to be answered before such a program could exist, Delmonico notes, include where the system will be based and who will administer it.
“There was a lot of agreement—though not total consensus—on the fact that UNOS, the United Network for Organ Sharing, would be the most likely place to ‘house’ and to manage the data,” Hiller reports. “They have all those systems in place already [and] are capable of managing this large database.”
Delmonico, as Vice President of UNOS, points out, “We have no authority to do that yet. Whether or not the country wants us to do that also remains to be determined.” But the UNOS Board of Directors is open to the idea; last year, they endorsed the concept of establishing a national paired exchange program with the understanding that details would have to be worked out over time, according to a UNOS spokesperson.
Another obstacle to widespread paired donation may be perceptions of it in the eyes of the government and critics: Could it be construed as a violation of the 1984 National Organ Transplant Act, which says that an organ should not be transplanted for a “value consideration”? Legal experts have assured Delmonico that paired exchanges can be interpreted as a gift.
“The government is also, properly, not wanting to see this as a slope toward buying and selling organs,” Delmonico says. “And I am adamantly opposed to that. In the instances that we’ve done paired exchange here, that’s not in the mix. That’s not our motivation, nor has it been the motivation of these donors. We wouldn’t do it if we felt that was the case.”
Montgomery says it will take several years to get a national system set up. But the bottom line for transplant surgeons is that a national paired kidney exchange program would do a world of good, two people at a time. “This is clearly what is best for our patients,” Montgomery says.
“The bigger we can get, if we can spread it nationally, the more people it will help,” Rees says. “And so we have to think of a way to do this so that we’re all satisfied that it’s moving forward in a way that will make everyone happy.”
Reprinted from Clinician News. 2005;9(5):cover, 3, 15.
While editing this month’s Renal Consult, I noted the mention of “paired kidney exchange” with particular interest. In 2005, I heard about a relatively new concept: matching two or more incompatible kidney donor-recipient pairs to create compatible matches. After conducting some research and interviewing experts, I wrote an article on paired kidney exchange for our sister publication, Clinician News. In the subsequent decade, the concept of paired exchange has expanded to the point that as many as 70 people have participated in a 35-kidney exchange. —AMH
Last year, almost 27,000 Americans received an organ transplant—a new national record, according to the US Department of Health and Human Services. Donations from living persons reached nearly 7,000, an increase of 2.3% from 2003. But despite these positive numbers, nearly 88,000 people are on the waiting list for an organ, and about 6,200 died last year before one became available.
But in some areas of the country, an innovative program is gaining momentum: paired kidney exchange, which puts together two or more incompatible donor-recipient pairs to create compatible matches. And while it will not close the gap between patients in need and those who receive, experts believe it could help thousands of people each year.
The real struggle is finding more willing donors. But Francis Delmonico, MD, Medical Director, New England Organ Bank, Newton, Massachusetts, says paired exchange is “an adjunct. When it can be of help, it’s helped a number of people already. And as with any of this, it’s a lot of work but it’s a tactic that we ought to try and apply anytime we can.”
“There are about 10,000 people who could be put into a program like this,” says Michael A. Rees, MD, PhD, Associate Professor, Department of Urology, Medical College of Ohio, Toledo. “Once you put them into the program, we would hope that 2,000 to 3,000 per year could be matched up and we could do that many extra kidney transplants a year. And that would certainly help to close the gap.”
Continue for how it works >>
HOW IT WORKS
Paired kidney exchange got its start in the US at Johns Hopkins Comprehensive Transplant Center, Baltimore, in 2001. The concept is simple: Recipient A needs a kidney and has a family member or friend, Donor A, who is willing to give. However, testing reveals that Donor A and Recipient A are incompatible. Meanwhile, Recipient B and Donor B find themselves with the same problem. But, it turns out, Donor B could give to Recipient A and Donor A could give to Recipient B. The patients and their donors are approached with the idea of an exchange, and if they agree, two people receive needed organs.
Twenty-two patients have received kidneys through the Johns Hopkins program, according to Robert A. Montgomery, MD, PhD, Director, Incompatible Kidney Transplant Programs (InKTP). Surgeons at Johns Hopkins have also expanded the exchange to three donor-recipient pairs; “triple swap” operations were performed at the hospital in 2003 and 2004.
“Everyone, when they come for an incompatible transplant, is offered the option of a paired exchange, because … if there’s any way to get a compatible kidney, that’s what you try for first,” says Janet Hiller, RN, MSN, Clinical Nurse Specialist, InKTP. “We’ve only had probably two out of a hundred [patients] who have thought, ‘No, I’d rather just get the kidney from my spouse or loved one.’”
“Patients are surprisingly open to this option, and almost all of them … request it when they are initially seen by me,” Montgomery told Clinician News via e-mail. “Some [recipients] have expressed apprehension about not knowing the donor and not being sure they have taken good care of their kidney. The donors have rarely expressed any concerns; they just want their loved one to receive a kidney…. It has universally been a positive experience.”
Ohio’s Rees first heard about paired exchange at a conference in 2001. He returned to his institution and consulted with the living donor coordinator to see if any pairs could be formed from people who had been willing to donate but unable due to blood type or other incompatibility problems. After identifying two pairs (out of 10 possibilities) for whom an exchange might work, Rees brought the patients and donors in for testing. But alas, the match wasn’t quite right.
“It became clear to me that if I really wanted to make this work, I needed a lot more than 10 pairs [to start with],” Rees says. “The numbers—if you try to match up people—go up logarithmically the more pairs that you have. So the chances you have of creating pairs go up exponentially.”
With this realization in mind, Rees set out to find someone willing to write a computer program that could identify potential matches from a larger bank of people pooled from several facilities. After some false starts—no computer programmer would work on the project for academic glory, the only reward Rees could offer—he convinced his father, Alan, to help. The senior Rees’ prototype was the basis for the current system, which links 10 transplant centers in Ohio.
Working with a larger pool of colleagues required numerous teleconference calls to iron out details for the statewide program. Among the questions were, “Are we going to make the donor travel, or are we going to cut the kidney out at home and ship the kidney in a box of ice to the place where it’s going to be transplanted?” he recalls. “And we decided that the donor has to travel.”
The first kidney exchange in the state of Ohio was performed in early November 2004. The third was scheduled for mid-April.
Creating one system to be shared by medical institutions that would normally be competitors took some work. “Trying to get us all to play in the same sandbox was very difficult,” Rees acknowledges. “But we did that; we stuck it out. And we all agreed to come up with something that we all think is a great idea and should help our patients.”
Delmonico, who is also a Professor of Surgery at Harvard Medical School and Visiting Surgeon in the Transplant Unit at Massachusetts General Hospital, Boston, has also seen the gratifying cooperation between medical professionals. “Institutions are competitive in terms of medical care—that’s no mystery,” he says. “But in this instance, the physicians have been simply magnificent in trying to help patients. Innovative programs can be developed and sustained through the kind of collaboration that is going on here.”
The New England paired exchange program, dating back to 2002, is a collaboration involving a dozen hospitals. It started with a paper-and-pen effort (blood type–incompatible patients would be brought to the attention of Delmonico, who would then contact each transplant center, seeking others) but now has its own computer system.
New England also has another variation on the exchange program that is unique to the region, according to Delmonico. “Let’s say I wanted to give to you but I can’t. I’ll give to somebody on the list, and as a result of that donation, you would get a priority for the next available deceased donor kidney in New England,” he explains. “We’ve done that about 20 times now.”
Continue for going national >>
GOING NATIONAL
So where does paired exchange go from here? Johns Hopkins’ Montgomery organized a consensus meeting in March to discuss the possibility of creating a national network; Hiller, Rees, and Delmonico attended.
“I think our goal should be to one day have a national program,” Rees says. “But shipping somebody from Toledo down to Cincinnati is a lot easier to sell to a patient than shipping somebody from Toledo to Los Angeles. And the logistics of trying to do that when you have a whole different set of insurance companies … would be a lot more complicated. So, I think the way to begin is to do it on a more regional basis and prove that the concept works, that people can be satisfied with it, and then begin to expand it.”
Delmonico also thinks a national program is essential. “We need to enlarge the possibility of paired donation and exchange,” he says. “It will not happen successfully in a regional system. There aren’t enough patients that can be identified.” Questions to be answered before such a program could exist, Delmonico notes, include where the system will be based and who will administer it.
“There was a lot of agreement—though not total consensus—on the fact that UNOS, the United Network for Organ Sharing, would be the most likely place to ‘house’ and to manage the data,” Hiller reports. “They have all those systems in place already [and] are capable of managing this large database.”
Delmonico, as Vice President of UNOS, points out, “We have no authority to do that yet. Whether or not the country wants us to do that also remains to be determined.” But the UNOS Board of Directors is open to the idea; last year, they endorsed the concept of establishing a national paired exchange program with the understanding that details would have to be worked out over time, according to a UNOS spokesperson.
Another obstacle to widespread paired donation may be perceptions of it in the eyes of the government and critics: Could it be construed as a violation of the 1984 National Organ Transplant Act, which says that an organ should not be transplanted for a “value consideration”? Legal experts have assured Delmonico that paired exchanges can be interpreted as a gift.
“The government is also, properly, not wanting to see this as a slope toward buying and selling organs,” Delmonico says. “And I am adamantly opposed to that. In the instances that we’ve done paired exchange here, that’s not in the mix. That’s not our motivation, nor has it been the motivation of these donors. We wouldn’t do it if we felt that was the case.”
Montgomery says it will take several years to get a national system set up. But the bottom line for transplant surgeons is that a national paired kidney exchange program would do a world of good, two people at a time. “This is clearly what is best for our patients,” Montgomery says.
“The bigger we can get, if we can spread it nationally, the more people it will help,” Rees says. “And so we have to think of a way to do this so that we’re all satisfied that it’s moving forward in a way that will make everyone happy.”
Reprinted from Clinician News. 2005;9(5):cover, 3, 15.
HIV: Still Epidemic After 30 Years
December 1st is World AIDS Day. This article, from June 2012, was inspired by a conversation I had with a friend who was pursuing her Masters in Public Health. For a group project in epidemiology, she had tested a survey mechanism among college undergrads—a disturbing number of whom responded that they did not understand what “HIV” meant. We began ruminating on how “young people” (not substantially younger than ourselves) could be so clueless about a disease that had had such a devastating impact within recent memory. My question: Would this lack of awareness eventually result in a resurgence of a disease that, in truth, has never really gone away? —AMH
In the 30 years since the first cases of HIV were diagnosed in the United States, almost 620,000 people have died of AIDS in this country. In a very short period in the early 1980s, HIV morphed from completely unknown to epidemic in its scope; at one point, an estimated 130,000 new infections occurred each year in the US.
Today, that number has decreased substantially, to about 50,000 new infections per year. (Data from 2000 indicated the annual rate of new infections was 56,300, while CDC surveillance data from 46 reporting states in 2010 put the number at around 47,000.) In addition, the development and use of highly effective antiretroviral therapy has meant that people with HIV can live longer, healthier lives—provided, of course, that they have access to and comply with treatment.
Despite these improvements, however, is it acceptable that 1.2 million people in the US are living with HIV (20% of whom don’t even know it)? “No, that number is certainly not satisfactory,” says Folusho E. Ogunfiditimi, MPH, PA-C, Director of Advanced Practice Providers at Henry Ford Health System in Detroit and a member of the American Academy of Physician Assistants Clinical and Health Affairs Commission. “We cannot take our foot off the pedal regarding education, prevention, looking at outcomes, and also looking at the impact of disparities and trying to eliminate those disparities.”
Continue for what HIV is >>
OMG, WHAT'S HIV?
It is possible that American success at reducing (though hardly eliminating) the spread of HIV has actually undermined awareness. It sometimes seems to be a national characteristic that if we don’t see people dying in droves before our very eyes, we don’t think there’s a problem. A Kaiser Family Foundation survey conducted in 2009 revealed that just 6% of Americans considered HIV/AIDS to be “the most urgent health problem facing the nation,” down from a high of 44% in 1995.
In the 1980s and early 1990s, HIV and AIDS were hot topics in the news; it was impossible not to hear tales of horror or fear on a daily basis. While the reduction in misinformation dissemination is probably a positive, the Kaiser survey indicated that only 45% of Americans reported hearing, seeing, or reading “a lot” or “some” about the domestic problem of HIV/AIDS in the previous year. This might not be deeply concerning—there are, after all, plenty of other issues to discuss—until you realize that 62% of Americans consider the media to be their prime source of information about HIV/AIDS (compared with just 13% who say their health care provider is).
While awareness is an issue across demographic groups, the most potentially concerning is younger adults. This is a generation who most likely cannot tell you who Ryan White was and whose members were not alive during (or were far too young to remember) the major crisis of the HIV/AIDS epidemic.
“Sexually, they’ve grown up in an era where we have really good treatments,” says Susan LeLacheur, DrPH, PA-C, Associate Professor of Physician Assistant Studies at the George Washington University in Washington, DC, and a national lecturer on infectious disease and HIV infection. “When they meet people with HIV, those people are healthy.”
“Because we have, for lack of a better term, taken our foot off the pedal regarding HIV/AIDS awareness,” says Ogunfiditimi, “we run the risk of having people coming out of high school and into college not being as aware as we might have been in that age-group in the ’80s and early ’90s.”
In the Kaiser survey, 45% of respondents ages 18 to 29 indicated they had never been tested for HIV. Of those, 70% gave as a reason “you don’t think you’re at risk” and 33%, “your doctor never recommended it.”
In 2008, the CDC estimated that 25% of new HIV infections occur among adolescents and young adults (ie, those ages 13 to 29). This is part of the reason Ogunfiditimi says a renewed focus on education is essential; he also thinks PAs and NPs are well suited to provide that information, given their reputation as patient educators and their frequent work at the community level.
“We need to take this message back to those [age-]groups, back to those communities and schools,” he says, “and conduct health education seminars and HIV/AIDS awareness programs in the schools so that we can start to educate our younger ones.”
Continue for targeted or universal screening? >>
TARGETED OR UNIVERSAL SCREENING?
Under the direction of President Obama, who has said the US “is at a crossroads” in terms of HIV/AIDS, facing “a domestic epidemic that demands a renewed commitment, increased public attention, and leadership,” the White House Office of National AIDS Policy (ONAP) has set ambitious goals for HIV prevention. Outlined in the National HIV/AIDS Strategy for the United States, those goals—with a deadline of 2015—include:
• Decrease the annual new HIV infection rate by 25%.
• Decrease the HIV transmission rate (currently 5 persons infected per year per 100 people living with HIV) by 30%.
• Increase the number of people living with HIV who know of their infection from 79% to 90%.
• Increase the number of people with newly diagnosed HIV who have regular health care within three months from 65% to 85%.
The strategy (available at www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf) was commissioned and developed in response to concern that without bold action, “we face a new era of rising infections, greater challenges in serving people living with HIV, and higher health care costs,” as stated in the executive summary of the report.
It may not help the cause that health care providers receive seemingly mixed messages about how to approach HIV screening. Since 2006, the CDC has recommended routine screening for HIV, stating that “HIV screening is recommended for patients in all health-care settings after the patient is notified that testing will be performed unless the patient declines (opt-out screening).” The CDC expressly recommended that separate written consent and prevention counseling should not be required, in part as an acknowledgement that busy practicing clinicians who have to screen for a multitude of conditions and often provide acute care during an office visit are under time constraints.
“That doesn’t mean you don’t do any counseling at all,” says Julie G. Stewart, DNP, MPH, MSN, FNP, Assistant Professor and Coordinator of the FNP Program at Sacred Heart University and an HIV NP at Southwest Community Health Center in Bridgeport, Connecticut, “but having discussions with your patients about their life and their health and their risk factors in every facet should include HIV testing.”
At the same time, both the CDC and ONAP emphasize that certain populations are at higher risk for HIV infection and therefore need to be targeted. These include:
• Gay, bisexual, and other men who have sex with men: 2% of the US population but 61% of new infections (2009 data)
• Black men and women: 14% of the population but 44% of new HIV infections
• Hispanic and Latino persons: 16% of the population but 20% of new HIV infections
• Injection-drug users: 9% of new HIV infections
The CDC also reports that heterosexual persons account for 27% of new HIV infections.
In a tough economic climate, when the US investment in response to the domestic HIV epidemic has risen to more than $19 billion per year, it makes sense to strategize how to most effectively utilize available resources to reduce disease burden. But do we run the risk of missing cases because we make too many assumptions about who is or is not likely to have this infection?
“The information that has been pushed out there has really tried to focus on these high-risk groups—and yes, we understand that those groups need to be identified,” says Ogunfiditimi. “But when you’re trying to increase the amount of testing, then the message needs to be more general so that practitioners who have natural biases won’t implement those biases into their decision as to whether to test someone.”
“What worries me is that the recommendation has been to test everyone at least once, and then again as indicated,” says LeLacheur. “‘As indicated’ means you have to ask. In parts of the country where HIV is not as prevalent as it is in DC, I can understand how it falls off the radar. But there are still a few [cases]—maybe not one in 20, maybe more like one or two in a clinician’s lifetime—and there is just no telling from the outside.”
“Perception of risk is huge,” adds Stewart. Her state was one of the first to mandate prenatal HIV testing, and she recalls instances in which a woman tested positive and the clinician was shocked because, Stewart says, “the perception was that ‘She is not at any risk at all,’ based on where she lives and her background. But the clinician didn’t really know.”
LeLacheur also points out that assumptions work both ways: “Oh, he’s a nice boy” and “Oh, he’s not a nice boy.” In one of her classes, a gay male student shared his experience seeking a diagnosis for what turned out to be Crohn’s disease. “The minute he told his clinician he was gay, all of a sudden he had AIDS and the clinician wouldn’t look anywhere else,” LeLacheur reports. “And that just wasn’t an issue; this was a kid who had been raised in an era of safer sex and had been very careful.”
Advocates say that implementing universal screening, per the CDC’s recommendation, would not only capture more cases but would also reduce the stigma associated with targeted screening.
Continue for truths and consequences >>
TRUTHS AND CONSEQUENCES
So perceptions and assumptions play important roles in how the US addresses HIV testing—both the perceptions of some patients that they are not at risk or that having HIV isn’t a big deal anymore, and the assumptions by health care providers that they don’t need to screen all patients for HIV. That faulty logic can have dire consequences, even if HIV is no longer an automatic death sentence.
“I think there’s a lot of passive testing, a lot of disease-induced or behavior-induced testing,” Ogunfiditimi says. “A patient comes in with complaints of what sounds like a sexually transmitted infection and that may spur a provider to initiate the discussion around HIV and subsequently do testing to back that up. But I don’t get the sense that HIV testing is promoted significantly.”
“They get sick” is how Stewart says many people learn their HIV status. “That is still frequently the way people become aware of their illness—they are sick in the hospital with an opportunistic infection…. If we can identify people who are HIV-infected earlier, we can capture them at higher CD4 counts, and then they have an improved life expectancy. We can start treatment, and that also impacts transmission.”
Echoing Stewart’s comments, LeLacheur also notes that the major pneumonia or other infection that leads to hospitalization and diagnosis of HIV can cause permanent damage. “I have a couple of patients who appear to be poststroke because of a viral infection in their brains that people get very late in HIV,” she says. “Now, their viral loads are undetectable and their CD4s are very high. Their immune systems are in good shape, and in every other way they’re healthy. But they can’t walk.”
For those misguided patients who think HIV isn’t such a big deal these days, LeLacheur has some hard facts clinicians can share. “You don’t realize until after you have HIV and someone explains it to you that the minute you get it, it essentially knocks out the entire immune system in your intestinal tract—which is more than half of your immune system—and that’s never coming back,” she says. “That infection in the gut is never going away; the medicines don’t touch it. So your digestion will never be right. There are things we can’t fix about HIV.”
And heaven help the patient who tries to rationalize that “you just take one pill a day.” First of all, that one pill ties up your liver, as LeLacheur points out, and second of all, HIV medications cost about $16,000 a year. Not many people can afford that on their own, and some states have 700-person-long waiting lists for assistance programs.
The consensus among clinicians who treat HIV-infected patients is that, yes, the US is much better off than it was at the height of the crisis. But there is still enough disease, still enough devastation, to warrant continued vigilance. And that starts with talking to all patients about HIV.
Ask the questions, they advise, do the test, and be prepared to refer patients to a specialist who can help them manage their illness. But don’t drop the ball on those patients even when they have specialty care; study up on drug interactions and know what you are prescribing to patients taking antiretroviral therapy.
“As PAs and NPs, we absolutely have to be the ones carrying that banner up front,” Ogunfiditimi says. “We’re the ones who have that opportunity to spend time with those patients and make sure we walk them through the urgency and the importance of being aware that this disease is still very rampant in our communities. I don’t want to say that we have taken it for granted, but we have definitely not paid as much attention as we used to in the ’80s and the ’90s, and we need to get back to that.”
“We can never forget,” Stewart concludes. “We spend a lot of time learning about and testing for breast cancer, prostate cancer, diabetes, and hypertension, all in an effort to take care of our patients the best we can. Screening for HIV should be in that same category.”
Reprinted from Clinician Reviews. 2012;22(6):cover, 11-14, 33-35.
December 1st is World AIDS Day. This article, from June 2012, was inspired by a conversation I had with a friend who was pursuing her Masters in Public Health. For a group project in epidemiology, she had tested a survey mechanism among college undergrads—a disturbing number of whom responded that they did not understand what “HIV” meant. We began ruminating on how “young people” (not substantially younger than ourselves) could be so clueless about a disease that had had such a devastating impact within recent memory. My question: Would this lack of awareness eventually result in a resurgence of a disease that, in truth, has never really gone away? —AMH
In the 30 years since the first cases of HIV were diagnosed in the United States, almost 620,000 people have died of AIDS in this country. In a very short period in the early 1980s, HIV morphed from completely unknown to epidemic in its scope; at one point, an estimated 130,000 new infections occurred each year in the US.
Today, that number has decreased substantially, to about 50,000 new infections per year. (Data from 2000 indicated the annual rate of new infections was 56,300, while CDC surveillance data from 46 reporting states in 2010 put the number at around 47,000.) In addition, the development and use of highly effective antiretroviral therapy has meant that people with HIV can live longer, healthier lives—provided, of course, that they have access to and comply with treatment.
Despite these improvements, however, is it acceptable that 1.2 million people in the US are living with HIV (20% of whom don’t even know it)? “No, that number is certainly not satisfactory,” says Folusho E. Ogunfiditimi, MPH, PA-C, Director of Advanced Practice Providers at Henry Ford Health System in Detroit and a member of the American Academy of Physician Assistants Clinical and Health Affairs Commission. “We cannot take our foot off the pedal regarding education, prevention, looking at outcomes, and also looking at the impact of disparities and trying to eliminate those disparities.”
Continue for what HIV is >>
OMG, WHAT'S HIV?
It is possible that American success at reducing (though hardly eliminating) the spread of HIV has actually undermined awareness. It sometimes seems to be a national characteristic that if we don’t see people dying in droves before our very eyes, we don’t think there’s a problem. A Kaiser Family Foundation survey conducted in 2009 revealed that just 6% of Americans considered HIV/AIDS to be “the most urgent health problem facing the nation,” down from a high of 44% in 1995.
In the 1980s and early 1990s, HIV and AIDS were hot topics in the news; it was impossible not to hear tales of horror or fear on a daily basis. While the reduction in misinformation dissemination is probably a positive, the Kaiser survey indicated that only 45% of Americans reported hearing, seeing, or reading “a lot” or “some” about the domestic problem of HIV/AIDS in the previous year. This might not be deeply concerning—there are, after all, plenty of other issues to discuss—until you realize that 62% of Americans consider the media to be their prime source of information about HIV/AIDS (compared with just 13% who say their health care provider is).
While awareness is an issue across demographic groups, the most potentially concerning is younger adults. This is a generation who most likely cannot tell you who Ryan White was and whose members were not alive during (or were far too young to remember) the major crisis of the HIV/AIDS epidemic.
“Sexually, they’ve grown up in an era where we have really good treatments,” says Susan LeLacheur, DrPH, PA-C, Associate Professor of Physician Assistant Studies at the George Washington University in Washington, DC, and a national lecturer on infectious disease and HIV infection. “When they meet people with HIV, those people are healthy.”
“Because we have, for lack of a better term, taken our foot off the pedal regarding HIV/AIDS awareness,” says Ogunfiditimi, “we run the risk of having people coming out of high school and into college not being as aware as we might have been in that age-group in the ’80s and early ’90s.”
In the Kaiser survey, 45% of respondents ages 18 to 29 indicated they had never been tested for HIV. Of those, 70% gave as a reason “you don’t think you’re at risk” and 33%, “your doctor never recommended it.”
In 2008, the CDC estimated that 25% of new HIV infections occur among adolescents and young adults (ie, those ages 13 to 29). This is part of the reason Ogunfiditimi says a renewed focus on education is essential; he also thinks PAs and NPs are well suited to provide that information, given their reputation as patient educators and their frequent work at the community level.
“We need to take this message back to those [age-]groups, back to those communities and schools,” he says, “and conduct health education seminars and HIV/AIDS awareness programs in the schools so that we can start to educate our younger ones.”
Continue for targeted or universal screening? >>
TARGETED OR UNIVERSAL SCREENING?
Under the direction of President Obama, who has said the US “is at a crossroads” in terms of HIV/AIDS, facing “a domestic epidemic that demands a renewed commitment, increased public attention, and leadership,” the White House Office of National AIDS Policy (ONAP) has set ambitious goals for HIV prevention. Outlined in the National HIV/AIDS Strategy for the United States, those goals—with a deadline of 2015—include:
• Decrease the annual new HIV infection rate by 25%.
• Decrease the HIV transmission rate (currently 5 persons infected per year per 100 people living with HIV) by 30%.
• Increase the number of people living with HIV who know of their infection from 79% to 90%.
• Increase the number of people with newly diagnosed HIV who have regular health care within three months from 65% to 85%.
The strategy (available at www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf) was commissioned and developed in response to concern that without bold action, “we face a new era of rising infections, greater challenges in serving people living with HIV, and higher health care costs,” as stated in the executive summary of the report.
It may not help the cause that health care providers receive seemingly mixed messages about how to approach HIV screening. Since 2006, the CDC has recommended routine screening for HIV, stating that “HIV screening is recommended for patients in all health-care settings after the patient is notified that testing will be performed unless the patient declines (opt-out screening).” The CDC expressly recommended that separate written consent and prevention counseling should not be required, in part as an acknowledgement that busy practicing clinicians who have to screen for a multitude of conditions and often provide acute care during an office visit are under time constraints.
“That doesn’t mean you don’t do any counseling at all,” says Julie G. Stewart, DNP, MPH, MSN, FNP, Assistant Professor and Coordinator of the FNP Program at Sacred Heart University and an HIV NP at Southwest Community Health Center in Bridgeport, Connecticut, “but having discussions with your patients about their life and their health and their risk factors in every facet should include HIV testing.”
At the same time, both the CDC and ONAP emphasize that certain populations are at higher risk for HIV infection and therefore need to be targeted. These include:
• Gay, bisexual, and other men who have sex with men: 2% of the US population but 61% of new infections (2009 data)
• Black men and women: 14% of the population but 44% of new HIV infections
• Hispanic and Latino persons: 16% of the population but 20% of new HIV infections
• Injection-drug users: 9% of new HIV infections
The CDC also reports that heterosexual persons account for 27% of new HIV infections.
In a tough economic climate, when the US investment in response to the domestic HIV epidemic has risen to more than $19 billion per year, it makes sense to strategize how to most effectively utilize available resources to reduce disease burden. But do we run the risk of missing cases because we make too many assumptions about who is or is not likely to have this infection?
“The information that has been pushed out there has really tried to focus on these high-risk groups—and yes, we understand that those groups need to be identified,” says Ogunfiditimi. “But when you’re trying to increase the amount of testing, then the message needs to be more general so that practitioners who have natural biases won’t implement those biases into their decision as to whether to test someone.”
“What worries me is that the recommendation has been to test everyone at least once, and then again as indicated,” says LeLacheur. “‘As indicated’ means you have to ask. In parts of the country where HIV is not as prevalent as it is in DC, I can understand how it falls off the radar. But there are still a few [cases]—maybe not one in 20, maybe more like one or two in a clinician’s lifetime—and there is just no telling from the outside.”
“Perception of risk is huge,” adds Stewart. Her state was one of the first to mandate prenatal HIV testing, and she recalls instances in which a woman tested positive and the clinician was shocked because, Stewart says, “the perception was that ‘She is not at any risk at all,’ based on where she lives and her background. But the clinician didn’t really know.”
LeLacheur also points out that assumptions work both ways: “Oh, he’s a nice boy” and “Oh, he’s not a nice boy.” In one of her classes, a gay male student shared his experience seeking a diagnosis for what turned out to be Crohn’s disease. “The minute he told his clinician he was gay, all of a sudden he had AIDS and the clinician wouldn’t look anywhere else,” LeLacheur reports. “And that just wasn’t an issue; this was a kid who had been raised in an era of safer sex and had been very careful.”
Advocates say that implementing universal screening, per the CDC’s recommendation, would not only capture more cases but would also reduce the stigma associated with targeted screening.
Continue for truths and consequences >>
TRUTHS AND CONSEQUENCES
So perceptions and assumptions play important roles in how the US addresses HIV testing—both the perceptions of some patients that they are not at risk or that having HIV isn’t a big deal anymore, and the assumptions by health care providers that they don’t need to screen all patients for HIV. That faulty logic can have dire consequences, even if HIV is no longer an automatic death sentence.
“I think there’s a lot of passive testing, a lot of disease-induced or behavior-induced testing,” Ogunfiditimi says. “A patient comes in with complaints of what sounds like a sexually transmitted infection and that may spur a provider to initiate the discussion around HIV and subsequently do testing to back that up. But I don’t get the sense that HIV testing is promoted significantly.”
“They get sick” is how Stewart says many people learn their HIV status. “That is still frequently the way people become aware of their illness—they are sick in the hospital with an opportunistic infection…. If we can identify people who are HIV-infected earlier, we can capture them at higher CD4 counts, and then they have an improved life expectancy. We can start treatment, and that also impacts transmission.”
Echoing Stewart’s comments, LeLacheur also notes that the major pneumonia or other infection that leads to hospitalization and diagnosis of HIV can cause permanent damage. “I have a couple of patients who appear to be poststroke because of a viral infection in their brains that people get very late in HIV,” she says. “Now, their viral loads are undetectable and their CD4s are very high. Their immune systems are in good shape, and in every other way they’re healthy. But they can’t walk.”
For those misguided patients who think HIV isn’t such a big deal these days, LeLacheur has some hard facts clinicians can share. “You don’t realize until after you have HIV and someone explains it to you that the minute you get it, it essentially knocks out the entire immune system in your intestinal tract—which is more than half of your immune system—and that’s never coming back,” she says. “That infection in the gut is never going away; the medicines don’t touch it. So your digestion will never be right. There are things we can’t fix about HIV.”
And heaven help the patient who tries to rationalize that “you just take one pill a day.” First of all, that one pill ties up your liver, as LeLacheur points out, and second of all, HIV medications cost about $16,000 a year. Not many people can afford that on their own, and some states have 700-person-long waiting lists for assistance programs.
The consensus among clinicians who treat HIV-infected patients is that, yes, the US is much better off than it was at the height of the crisis. But there is still enough disease, still enough devastation, to warrant continued vigilance. And that starts with talking to all patients about HIV.
Ask the questions, they advise, do the test, and be prepared to refer patients to a specialist who can help them manage their illness. But don’t drop the ball on those patients even when they have specialty care; study up on drug interactions and know what you are prescribing to patients taking antiretroviral therapy.
“As PAs and NPs, we absolutely have to be the ones carrying that banner up front,” Ogunfiditimi says. “We’re the ones who have that opportunity to spend time with those patients and make sure we walk them through the urgency and the importance of being aware that this disease is still very rampant in our communities. I don’t want to say that we have taken it for granted, but we have definitely not paid as much attention as we used to in the ’80s and the ’90s, and we need to get back to that.”
“We can never forget,” Stewart concludes. “We spend a lot of time learning about and testing for breast cancer, prostate cancer, diabetes, and hypertension, all in an effort to take care of our patients the best we can. Screening for HIV should be in that same category.”
Reprinted from Clinician Reviews. 2012;22(6):cover, 11-14, 33-35.
December 1st is World AIDS Day. This article, from June 2012, was inspired by a conversation I had with a friend who was pursuing her Masters in Public Health. For a group project in epidemiology, she had tested a survey mechanism among college undergrads—a disturbing number of whom responded that they did not understand what “HIV” meant. We began ruminating on how “young people” (not substantially younger than ourselves) could be so clueless about a disease that had had such a devastating impact within recent memory. My question: Would this lack of awareness eventually result in a resurgence of a disease that, in truth, has never really gone away? —AMH
In the 30 years since the first cases of HIV were diagnosed in the United States, almost 620,000 people have died of AIDS in this country. In a very short period in the early 1980s, HIV morphed from completely unknown to epidemic in its scope; at one point, an estimated 130,000 new infections occurred each year in the US.
Today, that number has decreased substantially, to about 50,000 new infections per year. (Data from 2000 indicated the annual rate of new infections was 56,300, while CDC surveillance data from 46 reporting states in 2010 put the number at around 47,000.) In addition, the development and use of highly effective antiretroviral therapy has meant that people with HIV can live longer, healthier lives—provided, of course, that they have access to and comply with treatment.
Despite these improvements, however, is it acceptable that 1.2 million people in the US are living with HIV (20% of whom don’t even know it)? “No, that number is certainly not satisfactory,” says Folusho E. Ogunfiditimi, MPH, PA-C, Director of Advanced Practice Providers at Henry Ford Health System in Detroit and a member of the American Academy of Physician Assistants Clinical and Health Affairs Commission. “We cannot take our foot off the pedal regarding education, prevention, looking at outcomes, and also looking at the impact of disparities and trying to eliminate those disparities.”
Continue for what HIV is >>
OMG, WHAT'S HIV?
It is possible that American success at reducing (though hardly eliminating) the spread of HIV has actually undermined awareness. It sometimes seems to be a national characteristic that if we don’t see people dying in droves before our very eyes, we don’t think there’s a problem. A Kaiser Family Foundation survey conducted in 2009 revealed that just 6% of Americans considered HIV/AIDS to be “the most urgent health problem facing the nation,” down from a high of 44% in 1995.
In the 1980s and early 1990s, HIV and AIDS were hot topics in the news; it was impossible not to hear tales of horror or fear on a daily basis. While the reduction in misinformation dissemination is probably a positive, the Kaiser survey indicated that only 45% of Americans reported hearing, seeing, or reading “a lot” or “some” about the domestic problem of HIV/AIDS in the previous year. This might not be deeply concerning—there are, after all, plenty of other issues to discuss—until you realize that 62% of Americans consider the media to be their prime source of information about HIV/AIDS (compared with just 13% who say their health care provider is).
While awareness is an issue across demographic groups, the most potentially concerning is younger adults. This is a generation who most likely cannot tell you who Ryan White was and whose members were not alive during (or were far too young to remember) the major crisis of the HIV/AIDS epidemic.
“Sexually, they’ve grown up in an era where we have really good treatments,” says Susan LeLacheur, DrPH, PA-C, Associate Professor of Physician Assistant Studies at the George Washington University in Washington, DC, and a national lecturer on infectious disease and HIV infection. “When they meet people with HIV, those people are healthy.”
“Because we have, for lack of a better term, taken our foot off the pedal regarding HIV/AIDS awareness,” says Ogunfiditimi, “we run the risk of having people coming out of high school and into college not being as aware as we might have been in that age-group in the ’80s and early ’90s.”
In the Kaiser survey, 45% of respondents ages 18 to 29 indicated they had never been tested for HIV. Of those, 70% gave as a reason “you don’t think you’re at risk” and 33%, “your doctor never recommended it.”
In 2008, the CDC estimated that 25% of new HIV infections occur among adolescents and young adults (ie, those ages 13 to 29). This is part of the reason Ogunfiditimi says a renewed focus on education is essential; he also thinks PAs and NPs are well suited to provide that information, given their reputation as patient educators and their frequent work at the community level.
“We need to take this message back to those [age-]groups, back to those communities and schools,” he says, “and conduct health education seminars and HIV/AIDS awareness programs in the schools so that we can start to educate our younger ones.”
Continue for targeted or universal screening? >>
TARGETED OR UNIVERSAL SCREENING?
Under the direction of President Obama, who has said the US “is at a crossroads” in terms of HIV/AIDS, facing “a domestic epidemic that demands a renewed commitment, increased public attention, and leadership,” the White House Office of National AIDS Policy (ONAP) has set ambitious goals for HIV prevention. Outlined in the National HIV/AIDS Strategy for the United States, those goals—with a deadline of 2015—include:
• Decrease the annual new HIV infection rate by 25%.
• Decrease the HIV transmission rate (currently 5 persons infected per year per 100 people living with HIV) by 30%.
• Increase the number of people living with HIV who know of their infection from 79% to 90%.
• Increase the number of people with newly diagnosed HIV who have regular health care within three months from 65% to 85%.
The strategy (available at www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf) was commissioned and developed in response to concern that without bold action, “we face a new era of rising infections, greater challenges in serving people living with HIV, and higher health care costs,” as stated in the executive summary of the report.
It may not help the cause that health care providers receive seemingly mixed messages about how to approach HIV screening. Since 2006, the CDC has recommended routine screening for HIV, stating that “HIV screening is recommended for patients in all health-care settings after the patient is notified that testing will be performed unless the patient declines (opt-out screening).” The CDC expressly recommended that separate written consent and prevention counseling should not be required, in part as an acknowledgement that busy practicing clinicians who have to screen for a multitude of conditions and often provide acute care during an office visit are under time constraints.
“That doesn’t mean you don’t do any counseling at all,” says Julie G. Stewart, DNP, MPH, MSN, FNP, Assistant Professor and Coordinator of the FNP Program at Sacred Heart University and an HIV NP at Southwest Community Health Center in Bridgeport, Connecticut, “but having discussions with your patients about their life and their health and their risk factors in every facet should include HIV testing.”
At the same time, both the CDC and ONAP emphasize that certain populations are at higher risk for HIV infection and therefore need to be targeted. These include:
• Gay, bisexual, and other men who have sex with men: 2% of the US population but 61% of new infections (2009 data)
• Black men and women: 14% of the population but 44% of new HIV infections
• Hispanic and Latino persons: 16% of the population but 20% of new HIV infections
• Injection-drug users: 9% of new HIV infections
The CDC also reports that heterosexual persons account for 27% of new HIV infections.
In a tough economic climate, when the US investment in response to the domestic HIV epidemic has risen to more than $19 billion per year, it makes sense to strategize how to most effectively utilize available resources to reduce disease burden. But do we run the risk of missing cases because we make too many assumptions about who is or is not likely to have this infection?
“The information that has been pushed out there has really tried to focus on these high-risk groups—and yes, we understand that those groups need to be identified,” says Ogunfiditimi. “But when you’re trying to increase the amount of testing, then the message needs to be more general so that practitioners who have natural biases won’t implement those biases into their decision as to whether to test someone.”
“What worries me is that the recommendation has been to test everyone at least once, and then again as indicated,” says LeLacheur. “‘As indicated’ means you have to ask. In parts of the country where HIV is not as prevalent as it is in DC, I can understand how it falls off the radar. But there are still a few [cases]—maybe not one in 20, maybe more like one or two in a clinician’s lifetime—and there is just no telling from the outside.”
“Perception of risk is huge,” adds Stewart. Her state was one of the first to mandate prenatal HIV testing, and she recalls instances in which a woman tested positive and the clinician was shocked because, Stewart says, “the perception was that ‘She is not at any risk at all,’ based on where she lives and her background. But the clinician didn’t really know.”
LeLacheur also points out that assumptions work both ways: “Oh, he’s a nice boy” and “Oh, he’s not a nice boy.” In one of her classes, a gay male student shared his experience seeking a diagnosis for what turned out to be Crohn’s disease. “The minute he told his clinician he was gay, all of a sudden he had AIDS and the clinician wouldn’t look anywhere else,” LeLacheur reports. “And that just wasn’t an issue; this was a kid who had been raised in an era of safer sex and had been very careful.”
Advocates say that implementing universal screening, per the CDC’s recommendation, would not only capture more cases but would also reduce the stigma associated with targeted screening.
Continue for truths and consequences >>
TRUTHS AND CONSEQUENCES
So perceptions and assumptions play important roles in how the US addresses HIV testing—both the perceptions of some patients that they are not at risk or that having HIV isn’t a big deal anymore, and the assumptions by health care providers that they don’t need to screen all patients for HIV. That faulty logic can have dire consequences, even if HIV is no longer an automatic death sentence.
“I think there’s a lot of passive testing, a lot of disease-induced or behavior-induced testing,” Ogunfiditimi says. “A patient comes in with complaints of what sounds like a sexually transmitted infection and that may spur a provider to initiate the discussion around HIV and subsequently do testing to back that up. But I don’t get the sense that HIV testing is promoted significantly.”
“They get sick” is how Stewart says many people learn their HIV status. “That is still frequently the way people become aware of their illness—they are sick in the hospital with an opportunistic infection…. If we can identify people who are HIV-infected earlier, we can capture them at higher CD4 counts, and then they have an improved life expectancy. We can start treatment, and that also impacts transmission.”
Echoing Stewart’s comments, LeLacheur also notes that the major pneumonia or other infection that leads to hospitalization and diagnosis of HIV can cause permanent damage. “I have a couple of patients who appear to be poststroke because of a viral infection in their brains that people get very late in HIV,” she says. “Now, their viral loads are undetectable and their CD4s are very high. Their immune systems are in good shape, and in every other way they’re healthy. But they can’t walk.”
For those misguided patients who think HIV isn’t such a big deal these days, LeLacheur has some hard facts clinicians can share. “You don’t realize until after you have HIV and someone explains it to you that the minute you get it, it essentially knocks out the entire immune system in your intestinal tract—which is more than half of your immune system—and that’s never coming back,” she says. “That infection in the gut is never going away; the medicines don’t touch it. So your digestion will never be right. There are things we can’t fix about HIV.”
And heaven help the patient who tries to rationalize that “you just take one pill a day.” First of all, that one pill ties up your liver, as LeLacheur points out, and second of all, HIV medications cost about $16,000 a year. Not many people can afford that on their own, and some states have 700-person-long waiting lists for assistance programs.
The consensus among clinicians who treat HIV-infected patients is that, yes, the US is much better off than it was at the height of the crisis. But there is still enough disease, still enough devastation, to warrant continued vigilance. And that starts with talking to all patients about HIV.
Ask the questions, they advise, do the test, and be prepared to refer patients to a specialist who can help them manage their illness. But don’t drop the ball on those patients even when they have specialty care; study up on drug interactions and know what you are prescribing to patients taking antiretroviral therapy.
“As PAs and NPs, we absolutely have to be the ones carrying that banner up front,” Ogunfiditimi says. “We’re the ones who have that opportunity to spend time with those patients and make sure we walk them through the urgency and the importance of being aware that this disease is still very rampant in our communities. I don’t want to say that we have taken it for granted, but we have definitely not paid as much attention as we used to in the ’80s and the ’90s, and we need to get back to that.”
“We can never forget,” Stewart concludes. “We spend a lot of time learning about and testing for breast cancer, prostate cancer, diabetes, and hypertension, all in an effort to take care of our patients the best we can. Screening for HIV should be in that same category.”
Reprinted from Clinician Reviews. 2012;22(6):cover, 11-14, 33-35.
Voices for Change: AANP Celebrates 25 Years
When I started editing Marie-Eileen Onieal’s editorial for this issue, her reference to the grassroots origins of the American Academy of Nurse Practitioners (now “Association”) reminded me of this article, which appeared in June 2010 to mark the organization’s 25th anniversary. Although five years have passed, I vividly recall the passion, enthusiasm, and wisdom of the founders, whose message about taking action to create positive change still resonates. They were inspiring to speak to, and never have I enjoyed working on an article more. —AMH
Picture it: Kansas City, 1984. At a meeting sponsored by the American Nurses Association (ANA), conversation among the NP attendees from across the United States focuses on the widely perceived need for “common representation” of their distinct interests. Who among the existing nursing organizations has the time, money, and/or inclination to serve as the voice of all NPs, providing a conduit for communication and leadership in legislative efforts to remove barriers to practice?
As it will turn out, the answer is no one—at least, not in the way these NPs envision. So they decide to do something about that … and since the result of their collaborative vision is the American Academy of Nurse Practitioners (AANP), you have a pretty good idea how it worked out.
AANP is celebrating its 25th anniversary this year—a milestone its founders probably never doubted would be reached, although others initially questioned the viability of such an organization.
“The feeling was that if it was needed, it would grow, and if it wasn’t needed, it wouldn’t grow,” recalls Jan Towers, PhD, NP-C, CRNP, FAANP, a founding member and past president who continues to serve AANP as Director of Health Policy. “And indeed it grew—so I think we know what our answer was!”
A SEPARATE BUT EQUAL NEED
Of course, creating a new professional organization was not as simple as a group of individuals putting their heads together. And yet, in a certain sense, it was that easy.
Shortly after those initial discussions in Kansas City, there was another conference in Washington, DC. During a panel discussion with executives from the insurance and advertising industries, it became evident that the biggest issue for NPs was “no one knew who we were,” says Clinician Reviews NP Editor-in-Chief Marie-Eileen Onieal, PhD, CPNP, FAANP, also a founder and past president of AANP. Clearly, that situation needed to be remedied—but how?
At that time, many NPs were members of ANA (and, it should be noted, many still are). However, since ANA represents all of nursing, the bulk of its resources could not be devoted to NPs. The organization had created a Council of Primary Care NPs in 1974, but the “renegade” NPs of 1984 felt that structure didn’t provide the latitude they wanted in their representation.
“We needed a way to really work together and have our undivided attention focused on NP issues,” Towers says. Onieal adds, “We weren’t abandoning our ‘nursing-ness,’ but clearly we had separate and distinctly different issues at hand than did the general populace of the nursing profession.”
The fact that NPs from across the country—remember, this is pre-Internet—shared this viewpoint added strength to the argument. If dozens of people who didn’t really know one another could see the same need, it must be real—and therefore, it had to be addressed.
“The [NP] role had been around since 1965, but nursing faculty were just beginning to define what NP education ought to look like,” says Carole Kain, DNS, ARNP, PNP-BC, a founding member and the first president of AANP. (She was Carole Kerwin then.) “A lot of things were changing in the profession, and we all wanted to be part of defining what that change meant. It was everybody coming together with a skill set that set us on this course.”
The time was certainly ripe. In her files, Kain still has a copy of a document discussing a referendum the American Medical Association passed in 1984, in which “they said they were actually going to try to inhibit the practice of NPs, PAs, nurse-midwives, and pharmacists, as to prescribing and taking care of patients.”
In addition to that restrictive attitude—a cause to rally around for NPs nationwide—the NP profession had reached a tipping point in terms of growth. “Enough of us had been prepared, but we were still small enough to be spread out [across the country],” Towers says. “We needed some way to connect.”
By the time they left Washington, DC, a steering committee had been formed to explore the need for an organization representing the nation’s approximately 24,000 NPs. They were expected to report back to the ANA one year later, at a meeting in Chicago. And so, the hard work began.
SO, YOU WANT TO START AN ORGANIZATION?
For a group of virtual strangers who had never started an organization before, they went about their business in a methodical and logical way. Different task forces were created, including one to look into how to do articles of incorporation and other “legalese” pieces, and another to develop a list of reasons why a separate organization was needed.
Onieal recalls a good deal of traveling that she and some other NPs did “to every NP meeting, every NP gathering, across the US for a year. We had a petition, and I’d say, ‘All I want to know is whether you think we should start an NP organization.’” The list grew over the course of the year.
In the meantime, contact was made with the handful of existing NP organizations, to see if any of them could meet the needs of the profession at large: the National Association of Pediatric NPs (1973), the National Association of NPs in Reproductive Health (which became the National Association of NPs in Women’s Health; 1980), and the National Conference of Gerontological NPs (1981). But obviously, since these groups had been tasked by their members with representing the interests of NPs in specific fields, their responses boiled down to “We can’t help you—but we wish you well.”
By the time the Chicago meeting rolled around in May 1985, about the only thing left to do was announce the new organization’s formation. Bylaws had already been drafted, and Onieal’s (now former) address in Lowell, Massachusetts, had been chosen as the original headquarters of the organization. (Trivia: AANP was originally incorporated in Lowell, before relocating to Austin, Texas.)
During a panel session in Chicago, Kain and Onieal told the assembled crowd, “This is what we need: We need to be heard as independent providers. We need to have some say in how our practice is regulated. We need … an organization that will allow us to learn from each other across the country,” as Kain recalls.
The official press release announcing AANP’s creation reads: “The overall purpose of the AANP is to promote high standards of health care as delivered by nurse practitioners and to act as a forum to enhance the identity and continuity of nurse practitioners. It is nationwide in scope and welcomes all nurse practitioners, regardless of specialty. The first year’s focus will be on networking and communications.”
AANP’s first elected officers were Kain (President), Towers (President-Elect), Onieal (Treasurer), Madeline D. Wiley, MSN, ARNP (Recording Secretary), and Robert T. Smithing, MSN, ARNP (Communications Secretary). Annual membership dues were $60.
25 YEARS OF PROGRESS
The leaders and members of the newly formed AANP wasted little time in setting out to accomplish their organizational goals. As Onieal says, “When we started, we had a five-year plan and a 10-year plan. And in five years, we got through all of that.”
With the initial focus on networking and communications, 10 geographical regions were established, based on the National Health Service Corps regions, and regional directors were found. So were individual reps from every state, each of whom then “started talking to people within their state,” Kain says.
For Towers, the focus was on legislative and regulatory issues, just as it is today. “One of the first things we started doing was finding ways to influence policy, both in Washington and in our states,” she says. “Early on, we started working on reimbursement.”
An early victory was getting NPs reimbursement through the Federal Employees Health Benefits Program (1986-1987). On the Medicare front, AANP had a significant impact in securing reimbursement for NPs working in rural areas and in long-term care facilities (1989-1990). Additional milestones include mandated Medicare payment for family and pediatric NPs regardless of supervision status (the early ’90s) and direct Medicare reimbursement for NPs regardless of setting (1997).
Seeing all that has been accomplished in 25 years is still a little amazing, even to the people who set the wheels in motion. “We’re funding research, and we have a foundation that gives scholarships,” Kain says. “Those are things we talked about as ‘someday’ dreams, but now they’re actualizations.”
She’s greeted every day by signs of how much has changed since 1985. “I can remember the initial discussions about having a certification program, talking to the psychometricians about how we’d start up the exam and which criteria we’d use,” she reflects. “And now, the NPs that I’m teaching are using that certification exam to get their licensure!”
As much as Onieal appreciates all the services that AANP has grown to offer its members, she also recognizes the core value of the organization. “One of our primary purposes was to let people know what NPs are all about—to clarify that we’re not LPNs, we’re not students, we’re not people who couldn’t go to medical school and decided to do this instead; this was our chosen profession,” she says. “I think we’ve been successful in doing that.”
THE ULTIMATE COLLABORATION
The founders of AANP never doubted that forming the organization was the right thing to do, which probably confirms that they were the best people to do the job. Instead of expending energy on doubts or infighting, they figured out what needed to be done and moved forward.
Kain still has a “vivid mental picture” of the early days in Kansas City and Washington, DC, when there was no organization and therefore no budget, so meetings were held in someone’s hotel room. “There would be people sitting on the bed, on the floor, standing up; we’re all crammed into the room,” she remembers with a laugh. “And people are talking, and we’re polite to one another, we’re respectful of one another. We’re passionate. We’re talking about the difficulties and why we need this. And if you could put that into a bottle, you could start a new organization right now!”
That spirit of collaboration is still a viable part of the organization, one that Onieal is proud of. “If anybody ever had an interest in doing something or being something within the organization, the doors were open,” she says. “Early on, a couple of students said, ‘But we have needs, too,’ so we said, ‘Fine, we’ll start a student special interest group. No problem.’” The point, after all, had always been to learn from one another.
If there is one lesson the AANP founders hope to pass along to future generations, it’s that great change can be brought about by a small group of (seemingly) ordinary people with extraordinary determination. They don’t want statues erected in their honor, but they do want others to be inspired to take an active role in the continuous evolution of the NP profession—especially since, as Towers observes, “There is still work to be done.”
“We need to get all the state practice acts on a level playing field,” she notes, “which we’re well on the way to doing now with our consensus document and the model rules and regulations. We need to have recognition within all the payment systems, and remove barriers within existing laws that prevent NPs from practicing to their fullest capability.”
The significant changes that have been brought about in the past 25 years can be difficult to fathom for those who did not witness them. In 2010, the NP profession is well established. (The same is true for PAs.) Students deciding their future choose these professions in part because of all they will be able to do and accomplish within their roles.
What they don’t always recognize is that it took hard work and continued vigilance on the part of those who have preceded them to achieve the privileges that today’s clinicians—and perhaps tomorrow’s—run the risk of taking for granted.
“We’re not done, and I don’t want anyone to think they can rest on the laurels of what has gone before or think that without their involvement it will continue,” says Kain. “It won’t. We need them. We need new blood, new thoughts, new ideas, to face the new challenges.”
When she reflects on how a group of near-strangers got together and made a mark on the history of their profession, she concludes, simply, “Others can do the same thing. They just have to want to, and see the need.”
Reprinted from Clinician Reviews. 2010;20(6):cover, 5-8.
When I started editing Marie-Eileen Onieal’s editorial for this issue, her reference to the grassroots origins of the American Academy of Nurse Practitioners (now “Association”) reminded me of this article, which appeared in June 2010 to mark the organization’s 25th anniversary. Although five years have passed, I vividly recall the passion, enthusiasm, and wisdom of the founders, whose message about taking action to create positive change still resonates. They were inspiring to speak to, and never have I enjoyed working on an article more. —AMH
Picture it: Kansas City, 1984. At a meeting sponsored by the American Nurses Association (ANA), conversation among the NP attendees from across the United States focuses on the widely perceived need for “common representation” of their distinct interests. Who among the existing nursing organizations has the time, money, and/or inclination to serve as the voice of all NPs, providing a conduit for communication and leadership in legislative efforts to remove barriers to practice?
As it will turn out, the answer is no one—at least, not in the way these NPs envision. So they decide to do something about that … and since the result of their collaborative vision is the American Academy of Nurse Practitioners (AANP), you have a pretty good idea how it worked out.
AANP is celebrating its 25th anniversary this year—a milestone its founders probably never doubted would be reached, although others initially questioned the viability of such an organization.
“The feeling was that if it was needed, it would grow, and if it wasn’t needed, it wouldn’t grow,” recalls Jan Towers, PhD, NP-C, CRNP, FAANP, a founding member and past president who continues to serve AANP as Director of Health Policy. “And indeed it grew—so I think we know what our answer was!”
A SEPARATE BUT EQUAL NEED
Of course, creating a new professional organization was not as simple as a group of individuals putting their heads together. And yet, in a certain sense, it was that easy.
Shortly after those initial discussions in Kansas City, there was another conference in Washington, DC. During a panel discussion with executives from the insurance and advertising industries, it became evident that the biggest issue for NPs was “no one knew who we were,” says Clinician Reviews NP Editor-in-Chief Marie-Eileen Onieal, PhD, CPNP, FAANP, also a founder and past president of AANP. Clearly, that situation needed to be remedied—but how?
At that time, many NPs were members of ANA (and, it should be noted, many still are). However, since ANA represents all of nursing, the bulk of its resources could not be devoted to NPs. The organization had created a Council of Primary Care NPs in 1974, but the “renegade” NPs of 1984 felt that structure didn’t provide the latitude they wanted in their representation.
“We needed a way to really work together and have our undivided attention focused on NP issues,” Towers says. Onieal adds, “We weren’t abandoning our ‘nursing-ness,’ but clearly we had separate and distinctly different issues at hand than did the general populace of the nursing profession.”
The fact that NPs from across the country—remember, this is pre-Internet—shared this viewpoint added strength to the argument. If dozens of people who didn’t really know one another could see the same need, it must be real—and therefore, it had to be addressed.
“The [NP] role had been around since 1965, but nursing faculty were just beginning to define what NP education ought to look like,” says Carole Kain, DNS, ARNP, PNP-BC, a founding member and the first president of AANP. (She was Carole Kerwin then.) “A lot of things were changing in the profession, and we all wanted to be part of defining what that change meant. It was everybody coming together with a skill set that set us on this course.”
The time was certainly ripe. In her files, Kain still has a copy of a document discussing a referendum the American Medical Association passed in 1984, in which “they said they were actually going to try to inhibit the practice of NPs, PAs, nurse-midwives, and pharmacists, as to prescribing and taking care of patients.”
In addition to that restrictive attitude—a cause to rally around for NPs nationwide—the NP profession had reached a tipping point in terms of growth. “Enough of us had been prepared, but we were still small enough to be spread out [across the country],” Towers says. “We needed some way to connect.”
By the time they left Washington, DC, a steering committee had been formed to explore the need for an organization representing the nation’s approximately 24,000 NPs. They were expected to report back to the ANA one year later, at a meeting in Chicago. And so, the hard work began.
SO, YOU WANT TO START AN ORGANIZATION?
For a group of virtual strangers who had never started an organization before, they went about their business in a methodical and logical way. Different task forces were created, including one to look into how to do articles of incorporation and other “legalese” pieces, and another to develop a list of reasons why a separate organization was needed.
Onieal recalls a good deal of traveling that she and some other NPs did “to every NP meeting, every NP gathering, across the US for a year. We had a petition, and I’d say, ‘All I want to know is whether you think we should start an NP organization.’” The list grew over the course of the year.
In the meantime, contact was made with the handful of existing NP organizations, to see if any of them could meet the needs of the profession at large: the National Association of Pediatric NPs (1973), the National Association of NPs in Reproductive Health (which became the National Association of NPs in Women’s Health; 1980), and the National Conference of Gerontological NPs (1981). But obviously, since these groups had been tasked by their members with representing the interests of NPs in specific fields, their responses boiled down to “We can’t help you—but we wish you well.”
By the time the Chicago meeting rolled around in May 1985, about the only thing left to do was announce the new organization’s formation. Bylaws had already been drafted, and Onieal’s (now former) address in Lowell, Massachusetts, had been chosen as the original headquarters of the organization. (Trivia: AANP was originally incorporated in Lowell, before relocating to Austin, Texas.)
During a panel session in Chicago, Kain and Onieal told the assembled crowd, “This is what we need: We need to be heard as independent providers. We need to have some say in how our practice is regulated. We need … an organization that will allow us to learn from each other across the country,” as Kain recalls.
The official press release announcing AANP’s creation reads: “The overall purpose of the AANP is to promote high standards of health care as delivered by nurse practitioners and to act as a forum to enhance the identity and continuity of nurse practitioners. It is nationwide in scope and welcomes all nurse practitioners, regardless of specialty. The first year’s focus will be on networking and communications.”
AANP’s first elected officers were Kain (President), Towers (President-Elect), Onieal (Treasurer), Madeline D. Wiley, MSN, ARNP (Recording Secretary), and Robert T. Smithing, MSN, ARNP (Communications Secretary). Annual membership dues were $60.
25 YEARS OF PROGRESS
The leaders and members of the newly formed AANP wasted little time in setting out to accomplish their organizational goals. As Onieal says, “When we started, we had a five-year plan and a 10-year plan. And in five years, we got through all of that.”
With the initial focus on networking and communications, 10 geographical regions were established, based on the National Health Service Corps regions, and regional directors were found. So were individual reps from every state, each of whom then “started talking to people within their state,” Kain says.
For Towers, the focus was on legislative and regulatory issues, just as it is today. “One of the first things we started doing was finding ways to influence policy, both in Washington and in our states,” she says. “Early on, we started working on reimbursement.”
An early victory was getting NPs reimbursement through the Federal Employees Health Benefits Program (1986-1987). On the Medicare front, AANP had a significant impact in securing reimbursement for NPs working in rural areas and in long-term care facilities (1989-1990). Additional milestones include mandated Medicare payment for family and pediatric NPs regardless of supervision status (the early ’90s) and direct Medicare reimbursement for NPs regardless of setting (1997).
Seeing all that has been accomplished in 25 years is still a little amazing, even to the people who set the wheels in motion. “We’re funding research, and we have a foundation that gives scholarships,” Kain says. “Those are things we talked about as ‘someday’ dreams, but now they’re actualizations.”
She’s greeted every day by signs of how much has changed since 1985. “I can remember the initial discussions about having a certification program, talking to the psychometricians about how we’d start up the exam and which criteria we’d use,” she reflects. “And now, the NPs that I’m teaching are using that certification exam to get their licensure!”
As much as Onieal appreciates all the services that AANP has grown to offer its members, she also recognizes the core value of the organization. “One of our primary purposes was to let people know what NPs are all about—to clarify that we’re not LPNs, we’re not students, we’re not people who couldn’t go to medical school and decided to do this instead; this was our chosen profession,” she says. “I think we’ve been successful in doing that.”
THE ULTIMATE COLLABORATION
The founders of AANP never doubted that forming the organization was the right thing to do, which probably confirms that they were the best people to do the job. Instead of expending energy on doubts or infighting, they figured out what needed to be done and moved forward.
Kain still has a “vivid mental picture” of the early days in Kansas City and Washington, DC, when there was no organization and therefore no budget, so meetings were held in someone’s hotel room. “There would be people sitting on the bed, on the floor, standing up; we’re all crammed into the room,” she remembers with a laugh. “And people are talking, and we’re polite to one another, we’re respectful of one another. We’re passionate. We’re talking about the difficulties and why we need this. And if you could put that into a bottle, you could start a new organization right now!”
That spirit of collaboration is still a viable part of the organization, one that Onieal is proud of. “If anybody ever had an interest in doing something or being something within the organization, the doors were open,” she says. “Early on, a couple of students said, ‘But we have needs, too,’ so we said, ‘Fine, we’ll start a student special interest group. No problem.’” The point, after all, had always been to learn from one another.
If there is one lesson the AANP founders hope to pass along to future generations, it’s that great change can be brought about by a small group of (seemingly) ordinary people with extraordinary determination. They don’t want statues erected in their honor, but they do want others to be inspired to take an active role in the continuous evolution of the NP profession—especially since, as Towers observes, “There is still work to be done.”
“We need to get all the state practice acts on a level playing field,” she notes, “which we’re well on the way to doing now with our consensus document and the model rules and regulations. We need to have recognition within all the payment systems, and remove barriers within existing laws that prevent NPs from practicing to their fullest capability.”
The significant changes that have been brought about in the past 25 years can be difficult to fathom for those who did not witness them. In 2010, the NP profession is well established. (The same is true for PAs.) Students deciding their future choose these professions in part because of all they will be able to do and accomplish within their roles.
What they don’t always recognize is that it took hard work and continued vigilance on the part of those who have preceded them to achieve the privileges that today’s clinicians—and perhaps tomorrow’s—run the risk of taking for granted.
“We’re not done, and I don’t want anyone to think they can rest on the laurels of what has gone before or think that without their involvement it will continue,” says Kain. “It won’t. We need them. We need new blood, new thoughts, new ideas, to face the new challenges.”
When she reflects on how a group of near-strangers got together and made a mark on the history of their profession, she concludes, simply, “Others can do the same thing. They just have to want to, and see the need.”
Reprinted from Clinician Reviews. 2010;20(6):cover, 5-8.
When I started editing Marie-Eileen Onieal’s editorial for this issue, her reference to the grassroots origins of the American Academy of Nurse Practitioners (now “Association”) reminded me of this article, which appeared in June 2010 to mark the organization’s 25th anniversary. Although five years have passed, I vividly recall the passion, enthusiasm, and wisdom of the founders, whose message about taking action to create positive change still resonates. They were inspiring to speak to, and never have I enjoyed working on an article more. —AMH
Picture it: Kansas City, 1984. At a meeting sponsored by the American Nurses Association (ANA), conversation among the NP attendees from across the United States focuses on the widely perceived need for “common representation” of their distinct interests. Who among the existing nursing organizations has the time, money, and/or inclination to serve as the voice of all NPs, providing a conduit for communication and leadership in legislative efforts to remove barriers to practice?
As it will turn out, the answer is no one—at least, not in the way these NPs envision. So they decide to do something about that … and since the result of their collaborative vision is the American Academy of Nurse Practitioners (AANP), you have a pretty good idea how it worked out.
AANP is celebrating its 25th anniversary this year—a milestone its founders probably never doubted would be reached, although others initially questioned the viability of such an organization.
“The feeling was that if it was needed, it would grow, and if it wasn’t needed, it wouldn’t grow,” recalls Jan Towers, PhD, NP-C, CRNP, FAANP, a founding member and past president who continues to serve AANP as Director of Health Policy. “And indeed it grew—so I think we know what our answer was!”
A SEPARATE BUT EQUAL NEED
Of course, creating a new professional organization was not as simple as a group of individuals putting their heads together. And yet, in a certain sense, it was that easy.
Shortly after those initial discussions in Kansas City, there was another conference in Washington, DC. During a panel discussion with executives from the insurance and advertising industries, it became evident that the biggest issue for NPs was “no one knew who we were,” says Clinician Reviews NP Editor-in-Chief Marie-Eileen Onieal, PhD, CPNP, FAANP, also a founder and past president of AANP. Clearly, that situation needed to be remedied—but how?
At that time, many NPs were members of ANA (and, it should be noted, many still are). However, since ANA represents all of nursing, the bulk of its resources could not be devoted to NPs. The organization had created a Council of Primary Care NPs in 1974, but the “renegade” NPs of 1984 felt that structure didn’t provide the latitude they wanted in their representation.
“We needed a way to really work together and have our undivided attention focused on NP issues,” Towers says. Onieal adds, “We weren’t abandoning our ‘nursing-ness,’ but clearly we had separate and distinctly different issues at hand than did the general populace of the nursing profession.”
The fact that NPs from across the country—remember, this is pre-Internet—shared this viewpoint added strength to the argument. If dozens of people who didn’t really know one another could see the same need, it must be real—and therefore, it had to be addressed.
“The [NP] role had been around since 1965, but nursing faculty were just beginning to define what NP education ought to look like,” says Carole Kain, DNS, ARNP, PNP-BC, a founding member and the first president of AANP. (She was Carole Kerwin then.) “A lot of things were changing in the profession, and we all wanted to be part of defining what that change meant. It was everybody coming together with a skill set that set us on this course.”
The time was certainly ripe. In her files, Kain still has a copy of a document discussing a referendum the American Medical Association passed in 1984, in which “they said they were actually going to try to inhibit the practice of NPs, PAs, nurse-midwives, and pharmacists, as to prescribing and taking care of patients.”
In addition to that restrictive attitude—a cause to rally around for NPs nationwide—the NP profession had reached a tipping point in terms of growth. “Enough of us had been prepared, but we were still small enough to be spread out [across the country],” Towers says. “We needed some way to connect.”
By the time they left Washington, DC, a steering committee had been formed to explore the need for an organization representing the nation’s approximately 24,000 NPs. They were expected to report back to the ANA one year later, at a meeting in Chicago. And so, the hard work began.
SO, YOU WANT TO START AN ORGANIZATION?
For a group of virtual strangers who had never started an organization before, they went about their business in a methodical and logical way. Different task forces were created, including one to look into how to do articles of incorporation and other “legalese” pieces, and another to develop a list of reasons why a separate organization was needed.
Onieal recalls a good deal of traveling that she and some other NPs did “to every NP meeting, every NP gathering, across the US for a year. We had a petition, and I’d say, ‘All I want to know is whether you think we should start an NP organization.’” The list grew over the course of the year.
In the meantime, contact was made with the handful of existing NP organizations, to see if any of them could meet the needs of the profession at large: the National Association of Pediatric NPs (1973), the National Association of NPs in Reproductive Health (which became the National Association of NPs in Women’s Health; 1980), and the National Conference of Gerontological NPs (1981). But obviously, since these groups had been tasked by their members with representing the interests of NPs in specific fields, their responses boiled down to “We can’t help you—but we wish you well.”
By the time the Chicago meeting rolled around in May 1985, about the only thing left to do was announce the new organization’s formation. Bylaws had already been drafted, and Onieal’s (now former) address in Lowell, Massachusetts, had been chosen as the original headquarters of the organization. (Trivia: AANP was originally incorporated in Lowell, before relocating to Austin, Texas.)
During a panel session in Chicago, Kain and Onieal told the assembled crowd, “This is what we need: We need to be heard as independent providers. We need to have some say in how our practice is regulated. We need … an organization that will allow us to learn from each other across the country,” as Kain recalls.
The official press release announcing AANP’s creation reads: “The overall purpose of the AANP is to promote high standards of health care as delivered by nurse practitioners and to act as a forum to enhance the identity and continuity of nurse practitioners. It is nationwide in scope and welcomes all nurse practitioners, regardless of specialty. The first year’s focus will be on networking and communications.”
AANP’s first elected officers were Kain (President), Towers (President-Elect), Onieal (Treasurer), Madeline D. Wiley, MSN, ARNP (Recording Secretary), and Robert T. Smithing, MSN, ARNP (Communications Secretary). Annual membership dues were $60.
25 YEARS OF PROGRESS
The leaders and members of the newly formed AANP wasted little time in setting out to accomplish their organizational goals. As Onieal says, “When we started, we had a five-year plan and a 10-year plan. And in five years, we got through all of that.”
With the initial focus on networking and communications, 10 geographical regions were established, based on the National Health Service Corps regions, and regional directors were found. So were individual reps from every state, each of whom then “started talking to people within their state,” Kain says.
For Towers, the focus was on legislative and regulatory issues, just as it is today. “One of the first things we started doing was finding ways to influence policy, both in Washington and in our states,” she says. “Early on, we started working on reimbursement.”
An early victory was getting NPs reimbursement through the Federal Employees Health Benefits Program (1986-1987). On the Medicare front, AANP had a significant impact in securing reimbursement for NPs working in rural areas and in long-term care facilities (1989-1990). Additional milestones include mandated Medicare payment for family and pediatric NPs regardless of supervision status (the early ’90s) and direct Medicare reimbursement for NPs regardless of setting (1997).
Seeing all that has been accomplished in 25 years is still a little amazing, even to the people who set the wheels in motion. “We’re funding research, and we have a foundation that gives scholarships,” Kain says. “Those are things we talked about as ‘someday’ dreams, but now they’re actualizations.”
She’s greeted every day by signs of how much has changed since 1985. “I can remember the initial discussions about having a certification program, talking to the psychometricians about how we’d start up the exam and which criteria we’d use,” she reflects. “And now, the NPs that I’m teaching are using that certification exam to get their licensure!”
As much as Onieal appreciates all the services that AANP has grown to offer its members, she also recognizes the core value of the organization. “One of our primary purposes was to let people know what NPs are all about—to clarify that we’re not LPNs, we’re not students, we’re not people who couldn’t go to medical school and decided to do this instead; this was our chosen profession,” she says. “I think we’ve been successful in doing that.”
THE ULTIMATE COLLABORATION
The founders of AANP never doubted that forming the organization was the right thing to do, which probably confirms that they were the best people to do the job. Instead of expending energy on doubts or infighting, they figured out what needed to be done and moved forward.
Kain still has a “vivid mental picture” of the early days in Kansas City and Washington, DC, when there was no organization and therefore no budget, so meetings were held in someone’s hotel room. “There would be people sitting on the bed, on the floor, standing up; we’re all crammed into the room,” she remembers with a laugh. “And people are talking, and we’re polite to one another, we’re respectful of one another. We’re passionate. We’re talking about the difficulties and why we need this. And if you could put that into a bottle, you could start a new organization right now!”
That spirit of collaboration is still a viable part of the organization, one that Onieal is proud of. “If anybody ever had an interest in doing something or being something within the organization, the doors were open,” she says. “Early on, a couple of students said, ‘But we have needs, too,’ so we said, ‘Fine, we’ll start a student special interest group. No problem.’” The point, after all, had always been to learn from one another.
If there is one lesson the AANP founders hope to pass along to future generations, it’s that great change can be brought about by a small group of (seemingly) ordinary people with extraordinary determination. They don’t want statues erected in their honor, but they do want others to be inspired to take an active role in the continuous evolution of the NP profession—especially since, as Towers observes, “There is still work to be done.”
“We need to get all the state practice acts on a level playing field,” she notes, “which we’re well on the way to doing now with our consensus document and the model rules and regulations. We need to have recognition within all the payment systems, and remove barriers within existing laws that prevent NPs from practicing to their fullest capability.”
The significant changes that have been brought about in the past 25 years can be difficult to fathom for those who did not witness them. In 2010, the NP profession is well established. (The same is true for PAs.) Students deciding their future choose these professions in part because of all they will be able to do and accomplish within their roles.
What they don’t always recognize is that it took hard work and continued vigilance on the part of those who have preceded them to achieve the privileges that today’s clinicians—and perhaps tomorrow’s—run the risk of taking for granted.
“We’re not done, and I don’t want anyone to think they can rest on the laurels of what has gone before or think that without their involvement it will continue,” says Kain. “It won’t. We need them. We need new blood, new thoughts, new ideas, to face the new challenges.”
When she reflects on how a group of near-strangers got together and made a mark on the history of their profession, she concludes, simply, “Others can do the same thing. They just have to want to, and see the need.”
Reprinted from Clinician Reviews. 2010;20(6):cover, 5-8.
Healing the Broken Places
May is Mental Health Month; in recognition of this—and our 25th anniversary—we decided to reprint this 2008 feature article on the state of mental health care in the United States. It’s the story I am personally most proud of telling, but rereading it today leads me to wonder: How much progress have we actually made? Please share your thoughts and experiences with me at [email protected]. —AMH
Broken. Grossly underfunded. In crisis. That’s how psychiatric and behavioral health specialists describe the current state of mental health care in the United States. The problems that plague the health care system in general—workforce shortages, barriers to access, and inadequate reimbursement—are only exacerbated in mental health.
“Mental illness isn’t glamorous,” says Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa Behavioral Health in Iowa City. Taking an example from the academic medical center setting, he adds, “It’s nice to have the cardiac surgery wing dedicated to or named after your family—but nobody wants a mental health wing named after them.”
Stigma is perhaps the greatest challenge with this patient population. “Until this country really embraces the notion that mental health is inherent in every aspect of a person’s general health,” says Gail W. Stuart, PhD, APRN, FAAN, Professor and Dean of the College of Nursing at Medical University of South Carolina, Charleston, “I think the stigma issue is going to continue to make it difficult to overcome these problems.”
FROM HOSPITALS TO JAILS
The current state of mental health care in the US is perhaps a direct result of the deinstitutionalization that occurred in the 1980s. By that time, most mental health hospitals were overcrowded and, in the worst cases, patients were subject to neglect and even abuse. (Recall, if you can, Geraldo Rivera skulking through the dark at Willowbrook State School in Staten Island, NY; his 1972 exposé brought the issue to the forefront.)
Following the public outcry over the treatment of these patients who—mentally ill or not—were people, there was a movement to reduce the number of long-term hospitalizations for mental illness. Along the way, the number of hospital beds available for mentally ill patients also declined, as freestanding hospitals and private facilities closed. What have these patients been left with?
“The thought was that people would be maintained in the community—there would be community support services, halfway houses, boarding homes, community-based programs,” says Catherine R. Judd, MS, PA-C, President of the Association of Psychiatric PAs, who works in the Department of Psychiatry at the University of Texas Southwestern Medical Center, Dallas. “The idea is good, but unfortunately, most of those programs have really not materialized to the extent or with the capacity to take care of the people who are out there.”
Without these services—and with an overtaxed health care system in general—many patients with mental illness find themselves adrift. And, eventually, incarcerated. An estimate from the US Department of Justice indicates that 24% of state and 21% of local prisoners have a recent history of mental illness. The largest psychiatric hospital in the country is the Los Angeles County Jail.
The problem is so widespread and so serious that both Judd and Jeanne Clement, EdD, APRN, BC, FAAN, President of the American Psychiatric Nurses Association (APNA), describe it in identical terms: “The jails and prisons have become the de facto mental health system.”
“More and more mentally ill people are in the streets, not receiving services, not taking medication as prescribed, with less-than-optimal case management in the community,” says Judd, who also works with the chronic mentally ill at the Dallas County Jail. “So, they are picked up on substance abuse–related charges or criminal trespassing or burglary. Consequently, they’re brought to jail.”
In Dallas, a divert court has been established, with the aim of getting chronic, persistent mentally ill patients “back to clinics and back on medication as quickly as possible without incarcerating them,” Judd notes. For such a program to succeed, of course, you need clinics—and providers—to divert these patients to.
Next: Problems of access >>
PROBLEMS OF ACCESS
Talk with clinicians who work in psychiatry, mental health, or behavioral health settings, and you’ll hear a familiar litany of problems. For one thing, there is the shortage of providers. “Here in Iowa, we’ve got areas where we have one psychiatrist covering five counties,” St. John says. “It’s almost impossible to get in with someone, and then when you do, it’s a five- or 10-minute appointment, because they’re just so busy.”
The number of clinicians choosing psychiatry—particularly psychiatric nursing—has declined significantly, perhaps due to insufficient funding for educational programs. “The highest number we had going into psychiatric nursing was when the National Institute of Mental Health, which was then separate from the NIH, had training grants,” explains Clement, who is the Director of the Graduate Specialty Program in Psychiatric–Mental Health Nursing at Ohio State University, Columbus. “And many of us who had those training grants are getting way past retirement age!”
The allure of other specialties also keeps people from mental health fields. “There are a lot of jobs and openings for PAs in psychiatry,” St. John says, “but there are a lot of jobs in orthopedics or surgery, too—and that’s what tends to draw them.”
The shortage of mental health care providers and subsequent lack of access to services means a larger role for primary care providers. High-profile expert panels have highlighted the need for integration of mental health into primary care settings—which St. John says is already largely the case.
“Most mental illness is treated in primary care, not in mental health settings,” he points out. “Mental health settings should really be reserved for the more challenging patients, the more difficult diagnoses and problems, and co-occurring illnesses.”
“Most primary care clinicians have some education in relationship to diagnosing and treating mild to moderate mental health issues, and then they refer on when needed,” Clement says. “The problem is, referring on is more and more difficult if there aren’t any people to refer to, or if waiting lists are as long as they currently are.”
Time is just as much of a problem in primary care as it is in specialty care, and when it comes to psychiatric and behavioral disorders, you can’t just order a lab test or an x-ray. “In psychiatry, you have to talk with the person and try to figure out what’s going on in their head and how that’s affecting their function,” St. John says. “It takes more time, and in primary care, that’s the problem they have. They’ve got appointments that may only have 10 minutes uled, and that’s not adequate to obtain a decent psychiatric history.”
The importance of both primary care providers and mental health specialists cannot be downplayed, because mental illnesses are among the most disabling and deadly. “If you look at disabling conditions, depression is right up there at the top,” St. John says. “Actually, it’s predicted that in the next three or four years, worldwide, depression will be the number one disabling illness.”
Anorexia is associated with a 15% death rate, and the completed suicide rate for persons with severe depression is also 15%. “If you were to look at one issue alone that we’re missing the boat on, it’s suicide,” Stuart says. “There are more suicides globally than there are deaths from war and violence combined—and the incidence of suicide is rising. So if, for example, a primary care provider sees someone who’s depressed, they have to go the next step and also ask about potential suicidal thought.”
Clement says it is equally important to integrate primary care services into mental health settings, since many patients with mental illnesses “are not going to show up in a private office in a primary care setting. And people with mental illness die 25 years earlier than the general population, from treatable medical illnesses.”
This is why, for example, the APNA is partnering with the Smoking Cessation Leadership Center. “Persons with mental illness are purchasing approximately half of the cigarettes that are being bought in the US,” Clement says. “And many of the treatable medical illnesses that people are dying from are related to smoking. It’s a whole person you’re working with, not just a brain or a body.”
REIMBURSEMENT ISSUE
Reimbursement is one of the major deterrents to the pursuit of a career in mental health care. “The whole reimbursement issue makes it difficult to attract people to work in mental health, particularly in community-based clinics, state hospitals, prisons, and jails,” which Judd says results in a lack of services for the seriously mentally ill and decreased access for people of low income.
The biggest problem is parity—or rather, the lack of it. What services are covered and at what rate tends to vary by state, and mental health is often not covered at the same rate as physical health. “There are a number of states that now have parity in mental health,” Clement observes. “If insurance is offered for physical health and [includes] mental health coverage, it has to be at exactly the same level as physical health, in terms of copays and lifetime limits.” But even so, there is not always parity in parity.
Furthermore, many people who need mental health services fall under the Medicaid program, which is state-based and just as variable. “Definitions of ‘medical necessity’ differ, and providers don’t get paid unless they can document according to medical necessity,” Clement says. “Even though what people—particularly those in the Medicaid and public mental health systems—need, along with their treatment, is a community-based program that helps people find jobs and housing. But that’s not ‘medical necessity.’”
Another problem is the sheer expense of some of the medications for mental disorders. “A lot of the drugs that we use to treat serious mental illnesses are horrendously expensive,” St. John notes. “They’ll almost bankrupt some states.…We just don’t have those budgets.”
Achieving parity and improving reimbursement is a slow process. Clement has been involved at the federal level with a parity bill, but as she notes, “that has not been resolved in terms of the differences between the House and the Senate.” Since so many of the programs are administered at a state level anyway, some suggest that might be a good place to begin working on reform.
In October 2007, the Annapolis Coalition, of which Stuart is President of the Board of Directors, released an action plan for reforming the mental health system—particularly for addressing workforce needs. The report (available at www.annapoliscoalition.org) includes the most specific recommendations possible in an overarching “framework” document, and Stuart says the coalition is currently working with some states—including North Carolina, Connecticut, New Mexico, and California—to identify and prioritize their needs and determine how best to tailor the plan to them.
“We’re really approaching it not at a federal level but seeing that the true change would come about at a state level,” Stuart says. “The need is derived differently by each state. If I can use the analogy, it’s a little bit like having a general way of approaching hypertension, but then you tailor it to the individual.”
Whether at the state or federal level, St. John thinks major changes to reimbursement for mental health care will require a cultural shift. “We reimburse for activity, we reimburse for procedures; we don’t reimburse for time spent or for decision making or thinking,” he points out. When a clinician is being reimbursed 50% (compared to 90% for other medical care), or $12 to $15 per visit for providing medication management, “You have to see large volumes of people in order to get reimbursed enough to pay for yourself and your staff.”
In the current economic climate, finding the money is going to take some shuffling. “It would be unrealistic to say that there are new dollars out there, because clearly there are not,” Stuart says. “So I think the issue is to reallocate the current resources that are out there and evaluate, Are we getting the best return on our investment of these dollars?”
The irony is that the people with the greatest needs for treatment, monitoring, and support services are the ones who face the biggest barriers to accessing care. “Services are more readily available to people who have jobs, have insurance—which would tell you in and of itself they’re probably higher functioning to start with,” Judd says. “I mean, if you’re having stress holding down a job, you’re probably higher functioning at your baseline than the homeless person who is living in the streets and under bridges and doesn’t go to shelters because they’re too paranoid to be around other people.”
Continue for taking the shame out of mental illness >>
TAKING THE SHAME OUT OF MENTAL ILLNESS
No discussion of mental health care can be complete without addressing the stigma associated with mental illness. Americans may have responded with outrage when they saw the deplorable conditions at mental hospitals, but many are still leery of being associated with a mental illness, whether in themselves or in a family member. And the cases that garner the most media attention are not necessarily the ones that reduce stigma.
What Americans see on the nightly news is the schizophrenic man who stops taking his medication and then stabs another man to death while he’s waiting for a train. Or the mother with chronic depression who can’t get out of bed until someone notices her kids look dirty and underfed, and Social Services steps in to remove them from the home. Do we, as a society, recognize the double tragedy of those situations? Or do we shake our heads in disgust, slap on a “crazy guy” or “bad mom” label, and change the channel?
Public service campaigns are trying to reduce the stigma associated with mental illness, to point out that it can affect anyone. The faces of the mentally ill are diverse: There’s the grandfather with Alzheimer’s disease who mistakes his granddaughter for his daughter. The 2-year-old autistic girl who has difficulty connecting with family and friends. The soldiers returning from the war zones in Iraq and Afghanistan, struggling with posttraumatic stress disorder (PTSD).
“The message that is being sent that needs to be broadcast more and heard with a different ear is that there is no health without mental health,” Clement says. St. John adds that it will take “a lot of time and education” to get that message out to the public, to let people know that it’s OK—in fact, it’s better—to acknowledge mental illness and seek help for it.
Stuart thinks the troops’ return from overseas, which is generating more stories about traumatic brain injury, PTSD, depression, and suicide, may start to turn the tide. “Perhaps because these are our veterans and our heroes, they’ve served the country, it’s opening up a public discussion in a way that’s different from seeing the aberrant, violent patient who does something very disruptive,” she says. “So, in a sense—and this sounds odd—we’re normalizing mental health problems, saying that all kinds of people from all walks of life can develop mental health problems, just as they can develop physical health problems.”
The key will be ensuring that the pendulum doesn’t swing too far the other way and cause the “stigma reduction” movement to generate its own problems. “On the one hand, we’re trying to destigmatize mental illness, but on the other hand, it [sometimes] seems like we’re calling any aberrant behavior or problems in life, stress or problems of adjustment, a mental illness,” Judd observes.
There are certain niches in which mental illness seems almost “trendy,” and industry advertising may encourage that. “Pharmaceutical companies are putting advertisements out there that would imply, ‘Gee, you’re getting divorced because you had conflict in your marriage—maybe you have bipolar disorder’ or ‘Your child isn’t doing well in school, so surely he has ADHD and needs to be on medication,’” Judd says. “There’s this promoting of drugs for anything and everything. And so that’s kind of the other extreme, where any problems in life in functioning must be because of a mental illness, and therefore you need a drug.”
RESTORED TO LIFE
With such a grim picture of mental health care in the US, it hardly seems surprising that clinicians don’t flock to the specialty. Yet, Clement, Judd, St. John, and Stuart did. Why?
For Judd, “the science of it is extremely interesting.” She thinks that as psychiatry becomes more biological and clinicians delve more deeply into what is affecting a patient’s function (Is it trauma, prenatal influences, infection, genetics?) and how that impacts treatment choices, more practitioners might choose mental health care. But the biggest reward, she says, is seeing people “return to a higher level of functioning.”
“I have never, ever sat down with a client that I have not felt privileged to be allowed into their lives,” says Clement, who has been a nurse for 49 years and a psychiatric nurse for 47 of them. “People allow clinicians into their lives in a very different way than they do anybody else.”
That can be especially true in mental health, when clinicians must interact on a very intimate level with their patients. It can be challenging, frustrating, even devastating (such as when a patient takes his or her own life). But it can also be infinitely rewarding. That is why St. John moved from family practice and emergency settings to psychiatry, where he has spent the past 15 years.
“When you see people who kind of get back into life and start working more toward their life goals, and you start seeing them get back into their family and their work and their social function, perking up and engaging in the world,” he says, his voice conveying a deep sense of fulfillment, “there’s just nothing more rewarding than that.”
Reprinted from Clinician Reviews. 2008;18(10):cover, 6-8.
May is Mental Health Month; in recognition of this—and our 25th anniversary—we decided to reprint this 2008 feature article on the state of mental health care in the United States. It’s the story I am personally most proud of telling, but rereading it today leads me to wonder: How much progress have we actually made? Please share your thoughts and experiences with me at [email protected]. —AMH
Broken. Grossly underfunded. In crisis. That’s how psychiatric and behavioral health specialists describe the current state of mental health care in the United States. The problems that plague the health care system in general—workforce shortages, barriers to access, and inadequate reimbursement—are only exacerbated in mental health.
“Mental illness isn’t glamorous,” says Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa Behavioral Health in Iowa City. Taking an example from the academic medical center setting, he adds, “It’s nice to have the cardiac surgery wing dedicated to or named after your family—but nobody wants a mental health wing named after them.”
Stigma is perhaps the greatest challenge with this patient population. “Until this country really embraces the notion that mental health is inherent in every aspect of a person’s general health,” says Gail W. Stuart, PhD, APRN, FAAN, Professor and Dean of the College of Nursing at Medical University of South Carolina, Charleston, “I think the stigma issue is going to continue to make it difficult to overcome these problems.”
FROM HOSPITALS TO JAILS
The current state of mental health care in the US is perhaps a direct result of the deinstitutionalization that occurred in the 1980s. By that time, most mental health hospitals were overcrowded and, in the worst cases, patients were subject to neglect and even abuse. (Recall, if you can, Geraldo Rivera skulking through the dark at Willowbrook State School in Staten Island, NY; his 1972 exposé brought the issue to the forefront.)
Following the public outcry over the treatment of these patients who—mentally ill or not—were people, there was a movement to reduce the number of long-term hospitalizations for mental illness. Along the way, the number of hospital beds available for mentally ill patients also declined, as freestanding hospitals and private facilities closed. What have these patients been left with?
“The thought was that people would be maintained in the community—there would be community support services, halfway houses, boarding homes, community-based programs,” says Catherine R. Judd, MS, PA-C, President of the Association of Psychiatric PAs, who works in the Department of Psychiatry at the University of Texas Southwestern Medical Center, Dallas. “The idea is good, but unfortunately, most of those programs have really not materialized to the extent or with the capacity to take care of the people who are out there.”
Without these services—and with an overtaxed health care system in general—many patients with mental illness find themselves adrift. And, eventually, incarcerated. An estimate from the US Department of Justice indicates that 24% of state and 21% of local prisoners have a recent history of mental illness. The largest psychiatric hospital in the country is the Los Angeles County Jail.
The problem is so widespread and so serious that both Judd and Jeanne Clement, EdD, APRN, BC, FAAN, President of the American Psychiatric Nurses Association (APNA), describe it in identical terms: “The jails and prisons have become the de facto mental health system.”
“More and more mentally ill people are in the streets, not receiving services, not taking medication as prescribed, with less-than-optimal case management in the community,” says Judd, who also works with the chronic mentally ill at the Dallas County Jail. “So, they are picked up on substance abuse–related charges or criminal trespassing or burglary. Consequently, they’re brought to jail.”
In Dallas, a divert court has been established, with the aim of getting chronic, persistent mentally ill patients “back to clinics and back on medication as quickly as possible without incarcerating them,” Judd notes. For such a program to succeed, of course, you need clinics—and providers—to divert these patients to.
Next: Problems of access >>
PROBLEMS OF ACCESS
Talk with clinicians who work in psychiatry, mental health, or behavioral health settings, and you’ll hear a familiar litany of problems. For one thing, there is the shortage of providers. “Here in Iowa, we’ve got areas where we have one psychiatrist covering five counties,” St. John says. “It’s almost impossible to get in with someone, and then when you do, it’s a five- or 10-minute appointment, because they’re just so busy.”
The number of clinicians choosing psychiatry—particularly psychiatric nursing—has declined significantly, perhaps due to insufficient funding for educational programs. “The highest number we had going into psychiatric nursing was when the National Institute of Mental Health, which was then separate from the NIH, had training grants,” explains Clement, who is the Director of the Graduate Specialty Program in Psychiatric–Mental Health Nursing at Ohio State University, Columbus. “And many of us who had those training grants are getting way past retirement age!”
The allure of other specialties also keeps people from mental health fields. “There are a lot of jobs and openings for PAs in psychiatry,” St. John says, “but there are a lot of jobs in orthopedics or surgery, too—and that’s what tends to draw them.”
The shortage of mental health care providers and subsequent lack of access to services means a larger role for primary care providers. High-profile expert panels have highlighted the need for integration of mental health into primary care settings—which St. John says is already largely the case.
“Most mental illness is treated in primary care, not in mental health settings,” he points out. “Mental health settings should really be reserved for the more challenging patients, the more difficult diagnoses and problems, and co-occurring illnesses.”
“Most primary care clinicians have some education in relationship to diagnosing and treating mild to moderate mental health issues, and then they refer on when needed,” Clement says. “The problem is, referring on is more and more difficult if there aren’t any people to refer to, or if waiting lists are as long as they currently are.”
Time is just as much of a problem in primary care as it is in specialty care, and when it comes to psychiatric and behavioral disorders, you can’t just order a lab test or an x-ray. “In psychiatry, you have to talk with the person and try to figure out what’s going on in their head and how that’s affecting their function,” St. John says. “It takes more time, and in primary care, that’s the problem they have. They’ve got appointments that may only have 10 minutes uled, and that’s not adequate to obtain a decent psychiatric history.”
The importance of both primary care providers and mental health specialists cannot be downplayed, because mental illnesses are among the most disabling and deadly. “If you look at disabling conditions, depression is right up there at the top,” St. John says. “Actually, it’s predicted that in the next three or four years, worldwide, depression will be the number one disabling illness.”
Anorexia is associated with a 15% death rate, and the completed suicide rate for persons with severe depression is also 15%. “If you were to look at one issue alone that we’re missing the boat on, it’s suicide,” Stuart says. “There are more suicides globally than there are deaths from war and violence combined—and the incidence of suicide is rising. So if, for example, a primary care provider sees someone who’s depressed, they have to go the next step and also ask about potential suicidal thought.”
Clement says it is equally important to integrate primary care services into mental health settings, since many patients with mental illnesses “are not going to show up in a private office in a primary care setting. And people with mental illness die 25 years earlier than the general population, from treatable medical illnesses.”
This is why, for example, the APNA is partnering with the Smoking Cessation Leadership Center. “Persons with mental illness are purchasing approximately half of the cigarettes that are being bought in the US,” Clement says. “And many of the treatable medical illnesses that people are dying from are related to smoking. It’s a whole person you’re working with, not just a brain or a body.”
REIMBURSEMENT ISSUE
Reimbursement is one of the major deterrents to the pursuit of a career in mental health care. “The whole reimbursement issue makes it difficult to attract people to work in mental health, particularly in community-based clinics, state hospitals, prisons, and jails,” which Judd says results in a lack of services for the seriously mentally ill and decreased access for people of low income.
The biggest problem is parity—or rather, the lack of it. What services are covered and at what rate tends to vary by state, and mental health is often not covered at the same rate as physical health. “There are a number of states that now have parity in mental health,” Clement observes. “If insurance is offered for physical health and [includes] mental health coverage, it has to be at exactly the same level as physical health, in terms of copays and lifetime limits.” But even so, there is not always parity in parity.
Furthermore, many people who need mental health services fall under the Medicaid program, which is state-based and just as variable. “Definitions of ‘medical necessity’ differ, and providers don’t get paid unless they can document according to medical necessity,” Clement says. “Even though what people—particularly those in the Medicaid and public mental health systems—need, along with their treatment, is a community-based program that helps people find jobs and housing. But that’s not ‘medical necessity.’”
Another problem is the sheer expense of some of the medications for mental disorders. “A lot of the drugs that we use to treat serious mental illnesses are horrendously expensive,” St. John notes. “They’ll almost bankrupt some states.…We just don’t have those budgets.”
Achieving parity and improving reimbursement is a slow process. Clement has been involved at the federal level with a parity bill, but as she notes, “that has not been resolved in terms of the differences between the House and the Senate.” Since so many of the programs are administered at a state level anyway, some suggest that might be a good place to begin working on reform.
In October 2007, the Annapolis Coalition, of which Stuart is President of the Board of Directors, released an action plan for reforming the mental health system—particularly for addressing workforce needs. The report (available at www.annapoliscoalition.org) includes the most specific recommendations possible in an overarching “framework” document, and Stuart says the coalition is currently working with some states—including North Carolina, Connecticut, New Mexico, and California—to identify and prioritize their needs and determine how best to tailor the plan to them.
“We’re really approaching it not at a federal level but seeing that the true change would come about at a state level,” Stuart says. “The need is derived differently by each state. If I can use the analogy, it’s a little bit like having a general way of approaching hypertension, but then you tailor it to the individual.”
Whether at the state or federal level, St. John thinks major changes to reimbursement for mental health care will require a cultural shift. “We reimburse for activity, we reimburse for procedures; we don’t reimburse for time spent or for decision making or thinking,” he points out. When a clinician is being reimbursed 50% (compared to 90% for other medical care), or $12 to $15 per visit for providing medication management, “You have to see large volumes of people in order to get reimbursed enough to pay for yourself and your staff.”
In the current economic climate, finding the money is going to take some shuffling. “It would be unrealistic to say that there are new dollars out there, because clearly there are not,” Stuart says. “So I think the issue is to reallocate the current resources that are out there and evaluate, Are we getting the best return on our investment of these dollars?”
The irony is that the people with the greatest needs for treatment, monitoring, and support services are the ones who face the biggest barriers to accessing care. “Services are more readily available to people who have jobs, have insurance—which would tell you in and of itself they’re probably higher functioning to start with,” Judd says. “I mean, if you’re having stress holding down a job, you’re probably higher functioning at your baseline than the homeless person who is living in the streets and under bridges and doesn’t go to shelters because they’re too paranoid to be around other people.”
Continue for taking the shame out of mental illness >>
TAKING THE SHAME OUT OF MENTAL ILLNESS
No discussion of mental health care can be complete without addressing the stigma associated with mental illness. Americans may have responded with outrage when they saw the deplorable conditions at mental hospitals, but many are still leery of being associated with a mental illness, whether in themselves or in a family member. And the cases that garner the most media attention are not necessarily the ones that reduce stigma.
What Americans see on the nightly news is the schizophrenic man who stops taking his medication and then stabs another man to death while he’s waiting for a train. Or the mother with chronic depression who can’t get out of bed until someone notices her kids look dirty and underfed, and Social Services steps in to remove them from the home. Do we, as a society, recognize the double tragedy of those situations? Or do we shake our heads in disgust, slap on a “crazy guy” or “bad mom” label, and change the channel?
Public service campaigns are trying to reduce the stigma associated with mental illness, to point out that it can affect anyone. The faces of the mentally ill are diverse: There’s the grandfather with Alzheimer’s disease who mistakes his granddaughter for his daughter. The 2-year-old autistic girl who has difficulty connecting with family and friends. The soldiers returning from the war zones in Iraq and Afghanistan, struggling with posttraumatic stress disorder (PTSD).
“The message that is being sent that needs to be broadcast more and heard with a different ear is that there is no health without mental health,” Clement says. St. John adds that it will take “a lot of time and education” to get that message out to the public, to let people know that it’s OK—in fact, it’s better—to acknowledge mental illness and seek help for it.
Stuart thinks the troops’ return from overseas, which is generating more stories about traumatic brain injury, PTSD, depression, and suicide, may start to turn the tide. “Perhaps because these are our veterans and our heroes, they’ve served the country, it’s opening up a public discussion in a way that’s different from seeing the aberrant, violent patient who does something very disruptive,” she says. “So, in a sense—and this sounds odd—we’re normalizing mental health problems, saying that all kinds of people from all walks of life can develop mental health problems, just as they can develop physical health problems.”
The key will be ensuring that the pendulum doesn’t swing too far the other way and cause the “stigma reduction” movement to generate its own problems. “On the one hand, we’re trying to destigmatize mental illness, but on the other hand, it [sometimes] seems like we’re calling any aberrant behavior or problems in life, stress or problems of adjustment, a mental illness,” Judd observes.
There are certain niches in which mental illness seems almost “trendy,” and industry advertising may encourage that. “Pharmaceutical companies are putting advertisements out there that would imply, ‘Gee, you’re getting divorced because you had conflict in your marriage—maybe you have bipolar disorder’ or ‘Your child isn’t doing well in school, so surely he has ADHD and needs to be on medication,’” Judd says. “There’s this promoting of drugs for anything and everything. And so that’s kind of the other extreme, where any problems in life in functioning must be because of a mental illness, and therefore you need a drug.”
RESTORED TO LIFE
With such a grim picture of mental health care in the US, it hardly seems surprising that clinicians don’t flock to the specialty. Yet, Clement, Judd, St. John, and Stuart did. Why?
For Judd, “the science of it is extremely interesting.” She thinks that as psychiatry becomes more biological and clinicians delve more deeply into what is affecting a patient’s function (Is it trauma, prenatal influences, infection, genetics?) and how that impacts treatment choices, more practitioners might choose mental health care. But the biggest reward, she says, is seeing people “return to a higher level of functioning.”
“I have never, ever sat down with a client that I have not felt privileged to be allowed into their lives,” says Clement, who has been a nurse for 49 years and a psychiatric nurse for 47 of them. “People allow clinicians into their lives in a very different way than they do anybody else.”
That can be especially true in mental health, when clinicians must interact on a very intimate level with their patients. It can be challenging, frustrating, even devastating (such as when a patient takes his or her own life). But it can also be infinitely rewarding. That is why St. John moved from family practice and emergency settings to psychiatry, where he has spent the past 15 years.
“When you see people who kind of get back into life and start working more toward their life goals, and you start seeing them get back into their family and their work and their social function, perking up and engaging in the world,” he says, his voice conveying a deep sense of fulfillment, “there’s just nothing more rewarding than that.”
Reprinted from Clinician Reviews. 2008;18(10):cover, 6-8.
May is Mental Health Month; in recognition of this—and our 25th anniversary—we decided to reprint this 2008 feature article on the state of mental health care in the United States. It’s the story I am personally most proud of telling, but rereading it today leads me to wonder: How much progress have we actually made? Please share your thoughts and experiences with me at [email protected]. —AMH
Broken. Grossly underfunded. In crisis. That’s how psychiatric and behavioral health specialists describe the current state of mental health care in the United States. The problems that plague the health care system in general—workforce shortages, barriers to access, and inadequate reimbursement—are only exacerbated in mental health.
“Mental illness isn’t glamorous,” says Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa Behavioral Health in Iowa City. Taking an example from the academic medical center setting, he adds, “It’s nice to have the cardiac surgery wing dedicated to or named after your family—but nobody wants a mental health wing named after them.”
Stigma is perhaps the greatest challenge with this patient population. “Until this country really embraces the notion that mental health is inherent in every aspect of a person’s general health,” says Gail W. Stuart, PhD, APRN, FAAN, Professor and Dean of the College of Nursing at Medical University of South Carolina, Charleston, “I think the stigma issue is going to continue to make it difficult to overcome these problems.”
FROM HOSPITALS TO JAILS
The current state of mental health care in the US is perhaps a direct result of the deinstitutionalization that occurred in the 1980s. By that time, most mental health hospitals were overcrowded and, in the worst cases, patients were subject to neglect and even abuse. (Recall, if you can, Geraldo Rivera skulking through the dark at Willowbrook State School in Staten Island, NY; his 1972 exposé brought the issue to the forefront.)
Following the public outcry over the treatment of these patients who—mentally ill or not—were people, there was a movement to reduce the number of long-term hospitalizations for mental illness. Along the way, the number of hospital beds available for mentally ill patients also declined, as freestanding hospitals and private facilities closed. What have these patients been left with?
“The thought was that people would be maintained in the community—there would be community support services, halfway houses, boarding homes, community-based programs,” says Catherine R. Judd, MS, PA-C, President of the Association of Psychiatric PAs, who works in the Department of Psychiatry at the University of Texas Southwestern Medical Center, Dallas. “The idea is good, but unfortunately, most of those programs have really not materialized to the extent or with the capacity to take care of the people who are out there.”
Without these services—and with an overtaxed health care system in general—many patients with mental illness find themselves adrift. And, eventually, incarcerated. An estimate from the US Department of Justice indicates that 24% of state and 21% of local prisoners have a recent history of mental illness. The largest psychiatric hospital in the country is the Los Angeles County Jail.
The problem is so widespread and so serious that both Judd and Jeanne Clement, EdD, APRN, BC, FAAN, President of the American Psychiatric Nurses Association (APNA), describe it in identical terms: “The jails and prisons have become the de facto mental health system.”
“More and more mentally ill people are in the streets, not receiving services, not taking medication as prescribed, with less-than-optimal case management in the community,” says Judd, who also works with the chronic mentally ill at the Dallas County Jail. “So, they are picked up on substance abuse–related charges or criminal trespassing or burglary. Consequently, they’re brought to jail.”
In Dallas, a divert court has been established, with the aim of getting chronic, persistent mentally ill patients “back to clinics and back on medication as quickly as possible without incarcerating them,” Judd notes. For such a program to succeed, of course, you need clinics—and providers—to divert these patients to.
Next: Problems of access >>
PROBLEMS OF ACCESS
Talk with clinicians who work in psychiatry, mental health, or behavioral health settings, and you’ll hear a familiar litany of problems. For one thing, there is the shortage of providers. “Here in Iowa, we’ve got areas where we have one psychiatrist covering five counties,” St. John says. “It’s almost impossible to get in with someone, and then when you do, it’s a five- or 10-minute appointment, because they’re just so busy.”
The number of clinicians choosing psychiatry—particularly psychiatric nursing—has declined significantly, perhaps due to insufficient funding for educational programs. “The highest number we had going into psychiatric nursing was when the National Institute of Mental Health, which was then separate from the NIH, had training grants,” explains Clement, who is the Director of the Graduate Specialty Program in Psychiatric–Mental Health Nursing at Ohio State University, Columbus. “And many of us who had those training grants are getting way past retirement age!”
The allure of other specialties also keeps people from mental health fields. “There are a lot of jobs and openings for PAs in psychiatry,” St. John says, “but there are a lot of jobs in orthopedics or surgery, too—and that’s what tends to draw them.”
The shortage of mental health care providers and subsequent lack of access to services means a larger role for primary care providers. High-profile expert panels have highlighted the need for integration of mental health into primary care settings—which St. John says is already largely the case.
“Most mental illness is treated in primary care, not in mental health settings,” he points out. “Mental health settings should really be reserved for the more challenging patients, the more difficult diagnoses and problems, and co-occurring illnesses.”
“Most primary care clinicians have some education in relationship to diagnosing and treating mild to moderate mental health issues, and then they refer on when needed,” Clement says. “The problem is, referring on is more and more difficult if there aren’t any people to refer to, or if waiting lists are as long as they currently are.”
Time is just as much of a problem in primary care as it is in specialty care, and when it comes to psychiatric and behavioral disorders, you can’t just order a lab test or an x-ray. “In psychiatry, you have to talk with the person and try to figure out what’s going on in their head and how that’s affecting their function,” St. John says. “It takes more time, and in primary care, that’s the problem they have. They’ve got appointments that may only have 10 minutes uled, and that’s not adequate to obtain a decent psychiatric history.”
The importance of both primary care providers and mental health specialists cannot be downplayed, because mental illnesses are among the most disabling and deadly. “If you look at disabling conditions, depression is right up there at the top,” St. John says. “Actually, it’s predicted that in the next three or four years, worldwide, depression will be the number one disabling illness.”
Anorexia is associated with a 15% death rate, and the completed suicide rate for persons with severe depression is also 15%. “If you were to look at one issue alone that we’re missing the boat on, it’s suicide,” Stuart says. “There are more suicides globally than there are deaths from war and violence combined—and the incidence of suicide is rising. So if, for example, a primary care provider sees someone who’s depressed, they have to go the next step and also ask about potential suicidal thought.”
Clement says it is equally important to integrate primary care services into mental health settings, since many patients with mental illnesses “are not going to show up in a private office in a primary care setting. And people with mental illness die 25 years earlier than the general population, from treatable medical illnesses.”
This is why, for example, the APNA is partnering with the Smoking Cessation Leadership Center. “Persons with mental illness are purchasing approximately half of the cigarettes that are being bought in the US,” Clement says. “And many of the treatable medical illnesses that people are dying from are related to smoking. It’s a whole person you’re working with, not just a brain or a body.”
REIMBURSEMENT ISSUE
Reimbursement is one of the major deterrents to the pursuit of a career in mental health care. “The whole reimbursement issue makes it difficult to attract people to work in mental health, particularly in community-based clinics, state hospitals, prisons, and jails,” which Judd says results in a lack of services for the seriously mentally ill and decreased access for people of low income.
The biggest problem is parity—or rather, the lack of it. What services are covered and at what rate tends to vary by state, and mental health is often not covered at the same rate as physical health. “There are a number of states that now have parity in mental health,” Clement observes. “If insurance is offered for physical health and [includes] mental health coverage, it has to be at exactly the same level as physical health, in terms of copays and lifetime limits.” But even so, there is not always parity in parity.
Furthermore, many people who need mental health services fall under the Medicaid program, which is state-based and just as variable. “Definitions of ‘medical necessity’ differ, and providers don’t get paid unless they can document according to medical necessity,” Clement says. “Even though what people—particularly those in the Medicaid and public mental health systems—need, along with their treatment, is a community-based program that helps people find jobs and housing. But that’s not ‘medical necessity.’”
Another problem is the sheer expense of some of the medications for mental disorders. “A lot of the drugs that we use to treat serious mental illnesses are horrendously expensive,” St. John notes. “They’ll almost bankrupt some states.…We just don’t have those budgets.”
Achieving parity and improving reimbursement is a slow process. Clement has been involved at the federal level with a parity bill, but as she notes, “that has not been resolved in terms of the differences between the House and the Senate.” Since so many of the programs are administered at a state level anyway, some suggest that might be a good place to begin working on reform.
In October 2007, the Annapolis Coalition, of which Stuart is President of the Board of Directors, released an action plan for reforming the mental health system—particularly for addressing workforce needs. The report (available at www.annapoliscoalition.org) includes the most specific recommendations possible in an overarching “framework” document, and Stuart says the coalition is currently working with some states—including North Carolina, Connecticut, New Mexico, and California—to identify and prioritize their needs and determine how best to tailor the plan to them.
“We’re really approaching it not at a federal level but seeing that the true change would come about at a state level,” Stuart says. “The need is derived differently by each state. If I can use the analogy, it’s a little bit like having a general way of approaching hypertension, but then you tailor it to the individual.”
Whether at the state or federal level, St. John thinks major changes to reimbursement for mental health care will require a cultural shift. “We reimburse for activity, we reimburse for procedures; we don’t reimburse for time spent or for decision making or thinking,” he points out. When a clinician is being reimbursed 50% (compared to 90% for other medical care), or $12 to $15 per visit for providing medication management, “You have to see large volumes of people in order to get reimbursed enough to pay for yourself and your staff.”
In the current economic climate, finding the money is going to take some shuffling. “It would be unrealistic to say that there are new dollars out there, because clearly there are not,” Stuart says. “So I think the issue is to reallocate the current resources that are out there and evaluate, Are we getting the best return on our investment of these dollars?”
The irony is that the people with the greatest needs for treatment, monitoring, and support services are the ones who face the biggest barriers to accessing care. “Services are more readily available to people who have jobs, have insurance—which would tell you in and of itself they’re probably higher functioning to start with,” Judd says. “I mean, if you’re having stress holding down a job, you’re probably higher functioning at your baseline than the homeless person who is living in the streets and under bridges and doesn’t go to shelters because they’re too paranoid to be around other people.”
Continue for taking the shame out of mental illness >>
TAKING THE SHAME OUT OF MENTAL ILLNESS
No discussion of mental health care can be complete without addressing the stigma associated with mental illness. Americans may have responded with outrage when they saw the deplorable conditions at mental hospitals, but many are still leery of being associated with a mental illness, whether in themselves or in a family member. And the cases that garner the most media attention are not necessarily the ones that reduce stigma.
What Americans see on the nightly news is the schizophrenic man who stops taking his medication and then stabs another man to death while he’s waiting for a train. Or the mother with chronic depression who can’t get out of bed until someone notices her kids look dirty and underfed, and Social Services steps in to remove them from the home. Do we, as a society, recognize the double tragedy of those situations? Or do we shake our heads in disgust, slap on a “crazy guy” or “bad mom” label, and change the channel?
Public service campaigns are trying to reduce the stigma associated with mental illness, to point out that it can affect anyone. The faces of the mentally ill are diverse: There’s the grandfather with Alzheimer’s disease who mistakes his granddaughter for his daughter. The 2-year-old autistic girl who has difficulty connecting with family and friends. The soldiers returning from the war zones in Iraq and Afghanistan, struggling with posttraumatic stress disorder (PTSD).
“The message that is being sent that needs to be broadcast more and heard with a different ear is that there is no health without mental health,” Clement says. St. John adds that it will take “a lot of time and education” to get that message out to the public, to let people know that it’s OK—in fact, it’s better—to acknowledge mental illness and seek help for it.
Stuart thinks the troops’ return from overseas, which is generating more stories about traumatic brain injury, PTSD, depression, and suicide, may start to turn the tide. “Perhaps because these are our veterans and our heroes, they’ve served the country, it’s opening up a public discussion in a way that’s different from seeing the aberrant, violent patient who does something very disruptive,” she says. “So, in a sense—and this sounds odd—we’re normalizing mental health problems, saying that all kinds of people from all walks of life can develop mental health problems, just as they can develop physical health problems.”
The key will be ensuring that the pendulum doesn’t swing too far the other way and cause the “stigma reduction” movement to generate its own problems. “On the one hand, we’re trying to destigmatize mental illness, but on the other hand, it [sometimes] seems like we’re calling any aberrant behavior or problems in life, stress or problems of adjustment, a mental illness,” Judd observes.
There are certain niches in which mental illness seems almost “trendy,” and industry advertising may encourage that. “Pharmaceutical companies are putting advertisements out there that would imply, ‘Gee, you’re getting divorced because you had conflict in your marriage—maybe you have bipolar disorder’ or ‘Your child isn’t doing well in school, so surely he has ADHD and needs to be on medication,’” Judd says. “There’s this promoting of drugs for anything and everything. And so that’s kind of the other extreme, where any problems in life in functioning must be because of a mental illness, and therefore you need a drug.”
RESTORED TO LIFE
With such a grim picture of mental health care in the US, it hardly seems surprising that clinicians don’t flock to the specialty. Yet, Clement, Judd, St. John, and Stuart did. Why?
For Judd, “the science of it is extremely interesting.” She thinks that as psychiatry becomes more biological and clinicians delve more deeply into what is affecting a patient’s function (Is it trauma, prenatal influences, infection, genetics?) and how that impacts treatment choices, more practitioners might choose mental health care. But the biggest reward, she says, is seeing people “return to a higher level of functioning.”
“I have never, ever sat down with a client that I have not felt privileged to be allowed into their lives,” says Clement, who has been a nurse for 49 years and a psychiatric nurse for 47 of them. “People allow clinicians into their lives in a very different way than they do anybody else.”
That can be especially true in mental health, when clinicians must interact on a very intimate level with their patients. It can be challenging, frustrating, even devastating (such as when a patient takes his or her own life). But it can also be infinitely rewarding. That is why St. John moved from family practice and emergency settings to psychiatry, where he has spent the past 15 years.
“When you see people who kind of get back into life and start working more toward their life goals, and you start seeing them get back into their family and their work and their social function, perking up and engaging in the world,” he says, his voice conveying a deep sense of fulfillment, “there’s just nothing more rewarding than that.”
Reprinted from Clinician Reviews. 2008;18(10):cover, 6-8.
Helping Patients Navigate the Web
How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”
While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.
With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.
Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”
If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!
Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers
Who recommends it: Freddi I. Segal-Gidan, PA, PhD
Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness
Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)
Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org
Who recommends it: Lyle W. Larson, PhD, PA-C
Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.
Also recommended: CredibleMeds™ (www.crediblemeds.org)
Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public
Who recommends it: Joe R. Monroe, MPAS, PA
Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.
eMedicine
http://emedicine.medscape.com
Who recommends it: Joe R. Monroe, MPAS, PA
Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.
Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).
Diabetes
DiabetesMine
www.diabetesmine.com/
Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM
Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!
Also recommended: American Diabetes Association (www.diabetes.org/)
Nephrology
American Association of Kidney Patients
www.aakp.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.
Kidney School
www.kidneyschool.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.
National Kidney Foundation
www.kidney.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.
Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)
Orthopedics
OrthoInfo
orthoinfo.aaos.org/
Who recommends it: Mike Rudzinski, RPh, RPA-C
Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.
Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/
Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA
Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.
How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”
While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.
With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.
Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”
If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!
Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers
Who recommends it: Freddi I. Segal-Gidan, PA, PhD
Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness
Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)
Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org
Who recommends it: Lyle W. Larson, PhD, PA-C
Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.
Also recommended: CredibleMeds™ (www.crediblemeds.org)
Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public
Who recommends it: Joe R. Monroe, MPAS, PA
Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.
eMedicine
http://emedicine.medscape.com
Who recommends it: Joe R. Monroe, MPAS, PA
Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.
Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).
Diabetes
DiabetesMine
www.diabetesmine.com/
Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM
Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!
Also recommended: American Diabetes Association (www.diabetes.org/)
Nephrology
American Association of Kidney Patients
www.aakp.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.
Kidney School
www.kidneyschool.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.
National Kidney Foundation
www.kidney.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.
Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)
Orthopedics
OrthoInfo
orthoinfo.aaos.org/
Who recommends it: Mike Rudzinski, RPh, RPA-C
Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.
Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/
Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA
Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.
How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”
While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.
With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.
Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”
If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!
Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers
Who recommends it: Freddi I. Segal-Gidan, PA, PhD
Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness
Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)
Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org
Who recommends it: Lyle W. Larson, PhD, PA-C
Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.
Also recommended: CredibleMeds™ (www.crediblemeds.org)
Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public
Who recommends it: Joe R. Monroe, MPAS, PA
Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.
eMedicine
http://emedicine.medscape.com
Who recommends it: Joe R. Monroe, MPAS, PA
Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.
Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).
Diabetes
DiabetesMine
www.diabetesmine.com/
Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM
Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!
Also recommended: American Diabetes Association (www.diabetes.org/)
Nephrology
American Association of Kidney Patients
www.aakp.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.
Kidney School
www.kidneyschool.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.
National Kidney Foundation
www.kidney.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.
Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)
Orthopedics
OrthoInfo
orthoinfo.aaos.org/
Who recommends it: Mike Rudzinski, RPh, RPA-C
Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.
Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/
Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA
Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.
Predicting the Future of Genetics
Thirteen years ago, scientists cracked the human genetic code, opening a world of new possibilities in medical care. At the time, it was (rightfully) trumpeted as a remarkable achievement, a sort of final frontier conquered. Soon, everyone would be able to have their own DNA sequenced, diseases would be identified early enough to prevent them, and medications could be tailored to the needs of the patient and his/her particular manifestation of a condition.
Flash-forward to the present day, and the clinical landscape doesn’t look quite as different as expected. Yes, there have been strides in the identification of genetic components to illnesses. Yes, in many cases, the results of genetic testing may lead patients to make choices that alter their outcomes. But there are still a lot of unknowns, as well as gray areas, when it comes to genetics.
For human beings in general—and Americans in particular—“soon” is never really soon enough. But it might actually be a good thing that genetics is still in the process of revolutionizing the way medicine is practiced. Because the truth is, we may not be fully equipped to handle the reality.
Not Ready for Prime Time
According to GeneTests.org, the National Center for Biotechnology Information's online database, genetic testing is available for 2,978 diseases (the majority are clinical tests, while 233 are for research purposes only). Figure 1 maps the exponential growth in available genetic tests since 1993 (seven years before the Human Genome Project was completed).
Continually, new information becomes available about genes associated with particular illnesses. The difficulty lies in putting it into an appropriate context.
"Many NPs and PAs—and probably primary care docs—don't really have a good understanding of genetics," says Ruth McCaffrey, ND, DNP, ARNP,BC, FNP, GNP, Professor, College of Nursing, Florida Atlantic University. "And therefore, they don't want to bring it up with patients, because they don't know how to help people."
A key aspect—before even delving into the specifics of what genetic testing can offer a particular patient—is managing expectations, both patients' and providers'. Genetics holds a wealth of promise for the future, but that future is not necessarily now. Pharmacogenetics, for example, has not advanced as researchers had hoped; while there are instances in which a medication may be selected based on the patient's genetic make-up (think of Alzheimer's disease), the field has not come to fruition yet.
So having genetic knowledge may not translate to useful action. And that leaves a lot of room for frustration and anxiety.
What Can You Tell Me?
While genetic tests can be used for diagnosis—someone demonstrating features of Down syndrome, for example, might be tested to confirm the presence of an extra copy of chromosome 21—most are performed for predictive purposes. And that has opened up a realm of uncertainty, because many patients—and even some clinicians—do not understand the concept of absolute risk.
The problem has been compounded by the influx of direct-to-consumer (DTC) genetic testing kits. Visit certain Web sites—even the ubiquitous Amazon.com—and you can purchase a kit that provides everything you need to swab the inside of your cheek and send the sample away to a laboratory for analysis. The resultant report will indicate your likelihood of developing certain diseases. (Note: The FDA, among other federal agencies, has questioned the accuracy of some of these kits and whether their marketing claims promise more than they can deliver.) But patients often can't put that information into a proper perspective.
"When I had my DTC genetic testing," Rackover says (he decided he couldn't teach students about it if he didn't experience it for himself), "I received 42 pages of information. And I had to learn to deal with absolute risk. It's basically a communications game of helping people deal with information they don't want to know."
Genetic testing that is ordered, or recommended, by a clinician will have a context to it. The patient will presumably have undergone counseling with a genetics specialist, and/or the primary care provider may have explained to the patient why the testing is beneficial and what information can be gleaned. But when people submit their own samples, they often aren't prepared for the answers they receive.
Even when patients bring their results to a primary care provider, that clinician might not be able to offer much enlightenment if he or she is not comfortable with and knowledgeable about genetics. Even to someone with medical or nursing training, the information can be dense and confusing. In fact, today's situation reminds Rackover of the 1970s, when CT scans and MRIs were making their debut.
"I remember this famous neurosurgeon in Philadelphia telling me, 'This machine is coming from England that is going to revolutionize medicine,'" he recalls. "That was the CT scan. Then when that and the MRI first came out, radiologists didn't know what they were looking at. There was too much information. And what we're getting from all the genetic testing is: The high-level stuff is very good information, but we don't know what it relates to yet."
Dealing With Risk
The usefulness of genetic testing varies by specialty and circumstance. It has perhaps gained the most traction (though not without sociopolitical controversy) in the field of obstetrics. Knowing what genes might be passed to a fetus or what conditions the child is likely to have provides prospective parents with options—whether that means terminating the pregnancy or preparing to raise a child with special needs.
"Certainly if a couple is thinking about becoming pregnant, genetic testing is warranted," McCaffrey says. Screening for Down syndrome is routine in the United States, but she notes, "[The test] is very inaccurate. So we get them all worried and then do amniocentesis. It would be better to do a pre-pregnancy genetic screen than to wait until their fourth month of pregnancy and do the alpha-fetoprotein test."
Another area in which genetic screening is prominent, though plagued by controversy, is breast cancer. Preventive measures are available, but some question whether the current options are too extreme or whether women might regret, say, undergoing prophylactic mastectomy if new treatments become available before their risk would ever reach the highest category.
"That's one end of the spectrum," McCaffrey says. "But if you know you have BRCA2, you might be more vigilant in testing for ovarian cancer. That's the biggest thing we can do, overall—if you have a patient who has the gene for a certain disease, you're going to be much more vigilant at monitoring them."
Again, genetic information has to be put in context. Having a particular gene does occasionally guarantee you will develop a disease (eg, Huntington's disease). But in most cases, it's more of a tip-off that something might happen sometime in the future. Rackover, for example, was told he had an increased risk for Crohn's disease, but since he was already 61 at the time of testing and has never had any symptoms, it wasn't something that especially concerned him. Someone less informed about the concept of risk, however, might have panicked and started demanding treatment for a condition he doesn't have and may never develop.
And then there are cases such as Huntington's disease, for which nothing can be done. A patient who discovers he or she has one of the associated genes might make different life decisions, but there is no prevention plan that can be put into action. This also raises the conundrum of sharing the news with relatives—who may or may not want to know, who may or may not want to consider their own risk. We tend to think of genes as a personal matter, but they're not. We share them with others.
All in the Family (History)
That, according to Rackover, is the heart of the matter—the essential piece that many clinicians overlook. Genetic tests are tools that can assist patients and providers in formulating health care plans. But amidst the buzz that surrounds any advancement in clinical practice, clinicians are losing sight of the fundamentals. The first step doesn't have to be ordering a genetic test. The first step is asking the right questions and listening to the answers.
Family history provides the first clues to a genetic puzzle; it is what can help a provider determine whether genetic testing is warranted. There are instances in which you don't need a genetic test to decide the appropriate course of action; you just need common sense.
Don't believe it? Here's food for thought: Rackover conducts physical exams for the military. One day, he saw a young Korean woman. On her preliminary screening survey, she mentioned having seen a health care provider in the previous year and receiving a prescription for oral contraceptives. There is nothing unusual about that. Except ...
"When I looked at the family history, I saw her mother had a stroke. So I asked, 'How old was your mother?' figuring she was, well, old," Rackover says. "Well, she was 38! And then she told me that both her aunts had a pulmonary embolism."
Thirteen years ago, scientists cracked the human genetic code, opening a world of new possibilities in medical care. At the time, it was (rightfully) trumpeted as a remarkable achievement, a sort of final frontier conquered. Soon, everyone would be able to have their own DNA sequenced, diseases would be identified early enough to prevent them, and medications could be tailored to the needs of the patient and his/her particular manifestation of a condition.
Flash-forward to the present day, and the clinical landscape doesn’t look quite as different as expected. Yes, there have been strides in the identification of genetic components to illnesses. Yes, in many cases, the results of genetic testing may lead patients to make choices that alter their outcomes. But there are still a lot of unknowns, as well as gray areas, when it comes to genetics.
For human beings in general—and Americans in particular—“soon” is never really soon enough. But it might actually be a good thing that genetics is still in the process of revolutionizing the way medicine is practiced. Because the truth is, we may not be fully equipped to handle the reality.
Not Ready for Prime Time
According to GeneTests.org, the National Center for Biotechnology Information's online database, genetic testing is available for 2,978 diseases (the majority are clinical tests, while 233 are for research purposes only). Figure 1 maps the exponential growth in available genetic tests since 1993 (seven years before the Human Genome Project was completed).
Continually, new information becomes available about genes associated with particular illnesses. The difficulty lies in putting it into an appropriate context.
"Many NPs and PAs—and probably primary care docs—don't really have a good understanding of genetics," says Ruth McCaffrey, ND, DNP, ARNP,BC, FNP, GNP, Professor, College of Nursing, Florida Atlantic University. "And therefore, they don't want to bring it up with patients, because they don't know how to help people."
A key aspect—before even delving into the specifics of what genetic testing can offer a particular patient—is managing expectations, both patients' and providers'. Genetics holds a wealth of promise for the future, but that future is not necessarily now. Pharmacogenetics, for example, has not advanced as researchers had hoped; while there are instances in which a medication may be selected based on the patient's genetic make-up (think of Alzheimer's disease), the field has not come to fruition yet.
So having genetic knowledge may not translate to useful action. And that leaves a lot of room for frustration and anxiety.
What Can You Tell Me?
While genetic tests can be used for diagnosis—someone demonstrating features of Down syndrome, for example, might be tested to confirm the presence of an extra copy of chromosome 21—most are performed for predictive purposes. And that has opened up a realm of uncertainty, because many patients—and even some clinicians—do not understand the concept of absolute risk.
The problem has been compounded by the influx of direct-to-consumer (DTC) genetic testing kits. Visit certain Web sites—even the ubiquitous Amazon.com—and you can purchase a kit that provides everything you need to swab the inside of your cheek and send the sample away to a laboratory for analysis. The resultant report will indicate your likelihood of developing certain diseases. (Note: The FDA, among other federal agencies, has questioned the accuracy of some of these kits and whether their marketing claims promise more than they can deliver.) But patients often can't put that information into a proper perspective.
"When I had my DTC genetic testing," Rackover says (he decided he couldn't teach students about it if he didn't experience it for himself), "I received 42 pages of information. And I had to learn to deal with absolute risk. It's basically a communications game of helping people deal with information they don't want to know."
Genetic testing that is ordered, or recommended, by a clinician will have a context to it. The patient will presumably have undergone counseling with a genetics specialist, and/or the primary care provider may have explained to the patient why the testing is beneficial and what information can be gleaned. But when people submit their own samples, they often aren't prepared for the answers they receive.
Even when patients bring their results to a primary care provider, that clinician might not be able to offer much enlightenment if he or she is not comfortable with and knowledgeable about genetics. Even to someone with medical or nursing training, the information can be dense and confusing. In fact, today's situation reminds Rackover of the 1970s, when CT scans and MRIs were making their debut.
"I remember this famous neurosurgeon in Philadelphia telling me, 'This machine is coming from England that is going to revolutionize medicine,'" he recalls. "That was the CT scan. Then when that and the MRI first came out, radiologists didn't know what they were looking at. There was too much information. And what we're getting from all the genetic testing is: The high-level stuff is very good information, but we don't know what it relates to yet."
Dealing With Risk
The usefulness of genetic testing varies by specialty and circumstance. It has perhaps gained the most traction (though not without sociopolitical controversy) in the field of obstetrics. Knowing what genes might be passed to a fetus or what conditions the child is likely to have provides prospective parents with options—whether that means terminating the pregnancy or preparing to raise a child with special needs.
"Certainly if a couple is thinking about becoming pregnant, genetic testing is warranted," McCaffrey says. Screening for Down syndrome is routine in the United States, but she notes, "[The test] is very inaccurate. So we get them all worried and then do amniocentesis. It would be better to do a pre-pregnancy genetic screen than to wait until their fourth month of pregnancy and do the alpha-fetoprotein test."
Another area in which genetic screening is prominent, though plagued by controversy, is breast cancer. Preventive measures are available, but some question whether the current options are too extreme or whether women might regret, say, undergoing prophylactic mastectomy if new treatments become available before their risk would ever reach the highest category.
"That's one end of the spectrum," McCaffrey says. "But if you know you have BRCA2, you might be more vigilant in testing for ovarian cancer. That's the biggest thing we can do, overall—if you have a patient who has the gene for a certain disease, you're going to be much more vigilant at monitoring them."
Again, genetic information has to be put in context. Having a particular gene does occasionally guarantee you will develop a disease (eg, Huntington's disease). But in most cases, it's more of a tip-off that something might happen sometime in the future. Rackover, for example, was told he had an increased risk for Crohn's disease, but since he was already 61 at the time of testing and has never had any symptoms, it wasn't something that especially concerned him. Someone less informed about the concept of risk, however, might have panicked and started demanding treatment for a condition he doesn't have and may never develop.
And then there are cases such as Huntington's disease, for which nothing can be done. A patient who discovers he or she has one of the associated genes might make different life decisions, but there is no prevention plan that can be put into action. This also raises the conundrum of sharing the news with relatives—who may or may not want to know, who may or may not want to consider their own risk. We tend to think of genes as a personal matter, but they're not. We share them with others.
All in the Family (History)
That, according to Rackover, is the heart of the matter—the essential piece that many clinicians overlook. Genetic tests are tools that can assist patients and providers in formulating health care plans. But amidst the buzz that surrounds any advancement in clinical practice, clinicians are losing sight of the fundamentals. The first step doesn't have to be ordering a genetic test. The first step is asking the right questions and listening to the answers.
Family history provides the first clues to a genetic puzzle; it is what can help a provider determine whether genetic testing is warranted. There are instances in which you don't need a genetic test to decide the appropriate course of action; you just need common sense.
Don't believe it? Here's food for thought: Rackover conducts physical exams for the military. One day, he saw a young Korean woman. On her preliminary screening survey, she mentioned having seen a health care provider in the previous year and receiving a prescription for oral contraceptives. There is nothing unusual about that. Except ...
"When I looked at the family history, I saw her mother had a stroke. So I asked, 'How old was your mother?' figuring she was, well, old," Rackover says. "Well, she was 38! And then she told me that both her aunts had a pulmonary embolism."
Thirteen years ago, scientists cracked the human genetic code, opening a world of new possibilities in medical care. At the time, it was (rightfully) trumpeted as a remarkable achievement, a sort of final frontier conquered. Soon, everyone would be able to have their own DNA sequenced, diseases would be identified early enough to prevent them, and medications could be tailored to the needs of the patient and his/her particular manifestation of a condition.
Flash-forward to the present day, and the clinical landscape doesn’t look quite as different as expected. Yes, there have been strides in the identification of genetic components to illnesses. Yes, in many cases, the results of genetic testing may lead patients to make choices that alter their outcomes. But there are still a lot of unknowns, as well as gray areas, when it comes to genetics.
For human beings in general—and Americans in particular—“soon” is never really soon enough. But it might actually be a good thing that genetics is still in the process of revolutionizing the way medicine is practiced. Because the truth is, we may not be fully equipped to handle the reality.
Not Ready for Prime Time
According to GeneTests.org, the National Center for Biotechnology Information's online database, genetic testing is available for 2,978 diseases (the majority are clinical tests, while 233 are for research purposes only). Figure 1 maps the exponential growth in available genetic tests since 1993 (seven years before the Human Genome Project was completed).
Continually, new information becomes available about genes associated with particular illnesses. The difficulty lies in putting it into an appropriate context.
"Many NPs and PAs—and probably primary care docs—don't really have a good understanding of genetics," says Ruth McCaffrey, ND, DNP, ARNP,BC, FNP, GNP, Professor, College of Nursing, Florida Atlantic University. "And therefore, they don't want to bring it up with patients, because they don't know how to help people."
A key aspect—before even delving into the specifics of what genetic testing can offer a particular patient—is managing expectations, both patients' and providers'. Genetics holds a wealth of promise for the future, but that future is not necessarily now. Pharmacogenetics, for example, has not advanced as researchers had hoped; while there are instances in which a medication may be selected based on the patient's genetic make-up (think of Alzheimer's disease), the field has not come to fruition yet.
So having genetic knowledge may not translate to useful action. And that leaves a lot of room for frustration and anxiety.
What Can You Tell Me?
While genetic tests can be used for diagnosis—someone demonstrating features of Down syndrome, for example, might be tested to confirm the presence of an extra copy of chromosome 21—most are performed for predictive purposes. And that has opened up a realm of uncertainty, because many patients—and even some clinicians—do not understand the concept of absolute risk.
The problem has been compounded by the influx of direct-to-consumer (DTC) genetic testing kits. Visit certain Web sites—even the ubiquitous Amazon.com—and you can purchase a kit that provides everything you need to swab the inside of your cheek and send the sample away to a laboratory for analysis. The resultant report will indicate your likelihood of developing certain diseases. (Note: The FDA, among other federal agencies, has questioned the accuracy of some of these kits and whether their marketing claims promise more than they can deliver.) But patients often can't put that information into a proper perspective.
"When I had my DTC genetic testing," Rackover says (he decided he couldn't teach students about it if he didn't experience it for himself), "I received 42 pages of information. And I had to learn to deal with absolute risk. It's basically a communications game of helping people deal with information they don't want to know."
Genetic testing that is ordered, or recommended, by a clinician will have a context to it. The patient will presumably have undergone counseling with a genetics specialist, and/or the primary care provider may have explained to the patient why the testing is beneficial and what information can be gleaned. But when people submit their own samples, they often aren't prepared for the answers they receive.
Even when patients bring their results to a primary care provider, that clinician might not be able to offer much enlightenment if he or she is not comfortable with and knowledgeable about genetics. Even to someone with medical or nursing training, the information can be dense and confusing. In fact, today's situation reminds Rackover of the 1970s, when CT scans and MRIs were making their debut.
"I remember this famous neurosurgeon in Philadelphia telling me, 'This machine is coming from England that is going to revolutionize medicine,'" he recalls. "That was the CT scan. Then when that and the MRI first came out, radiologists didn't know what they were looking at. There was too much information. And what we're getting from all the genetic testing is: The high-level stuff is very good information, but we don't know what it relates to yet."
Dealing With Risk
The usefulness of genetic testing varies by specialty and circumstance. It has perhaps gained the most traction (though not without sociopolitical controversy) in the field of obstetrics. Knowing what genes might be passed to a fetus or what conditions the child is likely to have provides prospective parents with options—whether that means terminating the pregnancy or preparing to raise a child with special needs.
"Certainly if a couple is thinking about becoming pregnant, genetic testing is warranted," McCaffrey says. Screening for Down syndrome is routine in the United States, but she notes, "[The test] is very inaccurate. So we get them all worried and then do amniocentesis. It would be better to do a pre-pregnancy genetic screen than to wait until their fourth month of pregnancy and do the alpha-fetoprotein test."
Another area in which genetic screening is prominent, though plagued by controversy, is breast cancer. Preventive measures are available, but some question whether the current options are too extreme or whether women might regret, say, undergoing prophylactic mastectomy if new treatments become available before their risk would ever reach the highest category.
"That's one end of the spectrum," McCaffrey says. "But if you know you have BRCA2, you might be more vigilant in testing for ovarian cancer. That's the biggest thing we can do, overall—if you have a patient who has the gene for a certain disease, you're going to be much more vigilant at monitoring them."
Again, genetic information has to be put in context. Having a particular gene does occasionally guarantee you will develop a disease (eg, Huntington's disease). But in most cases, it's more of a tip-off that something might happen sometime in the future. Rackover, for example, was told he had an increased risk for Crohn's disease, but since he was already 61 at the time of testing and has never had any symptoms, it wasn't something that especially concerned him. Someone less informed about the concept of risk, however, might have panicked and started demanding treatment for a condition he doesn't have and may never develop.
And then there are cases such as Huntington's disease, for which nothing can be done. A patient who discovers he or she has one of the associated genes might make different life decisions, but there is no prevention plan that can be put into action. This also raises the conundrum of sharing the news with relatives—who may or may not want to know, who may or may not want to consider their own risk. We tend to think of genes as a personal matter, but they're not. We share them with others.
All in the Family (History)
That, according to Rackover, is the heart of the matter—the essential piece that many clinicians overlook. Genetic tests are tools that can assist patients and providers in formulating health care plans. But amidst the buzz that surrounds any advancement in clinical practice, clinicians are losing sight of the fundamentals. The first step doesn't have to be ordering a genetic test. The first step is asking the right questions and listening to the answers.
Family history provides the first clues to a genetic puzzle; it is what can help a provider determine whether genetic testing is warranted. There are instances in which you don't need a genetic test to decide the appropriate course of action; you just need common sense.
Don't believe it? Here's food for thought: Rackover conducts physical exams for the military. One day, he saw a young Korean woman. On her preliminary screening survey, she mentioned having seen a health care provider in the previous year and receiving a prescription for oral contraceptives. There is nothing unusual about that. Except ...
"When I looked at the family history, I saw her mother had a stroke. So I asked, 'How old was your mother?' figuring she was, well, old," Rackover says. "Well, she was 38! And then she told me that both her aunts had a pulmonary embolism."
A Bioidentical Balancing Act
No woman looks forward to menopause (except, perhaps, for the cessation of menses). The "change of life" brings with it hot flashes, night sweats, mood swings, sleep disturbances, and loss of libido. Menopausal women are often miserable, and those around them may suffer secondhand.
It's no wonder, then, that women seek relief from their symptoms. But since the Women's Health Initiative hormone replacement therapy (HRT) trials ended abruptly in 2002, menopausal women and their clinicians have abandoned conventional HRT in droves. That left a huge void: How could women ease their transition through menopause? What could clinicians offer that was safe and effective?
Into the gap rose bioidentical hormones. Touted by proponents as superior to their conventional HRT counterparts, bioidenticals have seen a surge in use for menopausal symptoms. But not everyone is convinced by these claims—nor by the expanded use of bioidenticals as a veritable "fountain of youth."
Are women succumbing to the allure of feeling younger and more vibrant in their later years? Or are we just waiting for the science to catch up with the not-so-conventional wisdom?
A Question of Quality, Part 1
Stephen Nunn, MPAS, PA-C, has been in practice for 35 years, almost entirely in women's health (obstetrics and gynecology, as well as infertility). And he has a pretty radical perspective on menopause.
"There is nothing natural about it," he says. "If you look back, in 1910, average life expectancy for women in the US was 47. It's only in the past 75 years or so that women have lived long enough to spend a significant amount of their time—a third of their lives—in menopause."
For years, Nunn saw women with menopause and other hormonal issues for whom he couldn't do enough. "Based on the guidelines I was given, I couldn't really effect significant change for a lot of them," he says. "They would come in complaining that they felt a little better, but the available treatment didn't really do the job. And yet we were at what was considered the maximum dosing."
Some of those patients pursued other avenues of treatment—namely, bioidentical hormones—and reported back to Nunn how well they were doing and how happy they were. So when he was looking for a change, Nunn joined (full disclosure) SottoPelle, a Scottsdale, Arizona–based practice dedicated to bioidentical HRT in pellet form.
Although he has a vested interest in promoting bioidentical HRT, Nunn does raise an intriguing point when he notes that the ovary is "the only endocrine organ that gets ignored when it stops functioning." By contrast, he points to the avalanche of new products that address andropause, which is treated long-term.
"I think the quality-of-life issue, as well as the health benefits, say that we really should be treating women with—my bias—bioidentical hormones for the rest of their lives," he concludes.
His viewpoint is shared by independent clinicians. In her Covington, Louisiana, practice, Pamela Egan, FNP-C, CDE, focuses on wellness and preventive medicine. Egan completed a fellowship with the American Academy of Anti-Aging and Regenerative Medicine and will receive her master's degree in Metabolic and Nutritional Medicine within the next six months. Bioidentical HRT is a component of her patient care plan.
"It's all about keeping the body balanced nutritionally and metabolically—that is going to slow down aging, which ultimately will prevent disease," she says. "I have patients who come in and say they can't sleep at night, they're depressed, they have no libido, they have hot flushes. When we get everything balanced, they have much better quality of life. They sleep better, they want sex again, their hot flushes are gone, and anxiety and depression are diminished or alleviated altogether."
Egan isn't a fan of the term anti-aging because, she says, its use in relation to cosmeceutical products has made it "sound a little flaky." What she is trying to achieve with her patients is a lifestyle change through a holistic approach that includes nutrition and weight loss in addition to hormonal balance. "Once people are balanced," she says, "many of them get off their diabetes meds, blood pressure pills, cholesterol pills."
A Question of Quality, Part 2
Major medical organizations, such as the American College of Obstetricians and Gynecologists (ACOG) and the American Association of Clinical Endocrinologists (AACE), have a very different position on the role of bioidentical hormones. And this is where a degree of confusion creeps in, because "bioidentical hormone replacement therapy is not really an FDA-recognized term," says Jennifer Hofmann Ribowsky, MS, RPA-C, Academic Faculty/Pre-clinical Coordinator of the Pace University–Lenox Hill Hospital Physician Assistant Program in New York. "It's more a term used for marketing purposes."
That said, bioidentical hormones are essentially plant-derived hormones that are chemically similar or structurally identical to those produced by the body. And there are FDA-approved estrogen and progesterone products that are technically considered naturally occurring or bioidentical.
But traditionally, the term bioidentical hormones has referred to compounded preparations. The reservations, if not downright concerns, of groups such as ACOG and AACE generally relate to two factors: the origins of the bioidentical hormones (FDA-approved products vs compounded products) and how they are used.
Compounding is performed by a licensed pharmacist to specifications prescribed by a health care provider. But compounded products are not regulated by the FDA (they are regulated by the states), and by their nature are not standardized (though the raw materials are US Pharmacopeia–approved products). Therefore, issues of quality—purity and potency—may arise, and there is a lack of safety and efficacy data.
For example, when a clinician prescribes an estradiol patch in a dosage of "0.05 mg per 24 hours," that is precisely what the patient will receive from an FDA-approved product. "It's standardized, so you have that level of comfort that when you're prescribing a certain amount, that's what the patient is getting," Ribowsky says. "That's not always the case with compounded products."
In an August 2012 opinion paper, committees from ACOG and the American Society for Reproductive Medicine concluded that evidence in favor of bioidentical (ie, compounded) HRT was insufficient: "Patients should be counseled that menopausal hormone therapies that are proved to be safe and effective by the FDA are more appropriate for their use than individual pharmacy-compounded preparations."
But in practice, there may be additional considerations. "I leave it up to the patient whether they want compounded bioidentical hormones or FDA-approved bioidentical hormones," Egan says (though she recommends bioidenticals over synthetics). "If a patient doesn't have insurance and has to pay out of pocket, obviously it's financially feasible to get them compounded."
What's Appropriate?
In a 2007 position statement that also recommended "FDA-approved commercially available hormonal preparations," AACE added the proviso that these should be prescribed "following the guidelines published by the various medical societies." This is where the discussion of bioidentical hormones enters the grayest area.
"Estradiol and progesterone are used for the management of vasomotor symptoms that are troubling to the patient, and they should be used within usually the first five years of menopause—the lowest dose, for the shortest amount of time," Ribowsky summarizes. "In terms of being a fountain of youth or a way to stay or look younger, there's not really any support for those types of claims. They're not even studied for that purpose."
Neither Egan nor Nunn refers to a "fountain of youth"; their aim is to keep patients healthy and feeling better. (Although, yes, patients often comment that they feel younger, too.) Both emphasize that patients are monitored and HRT is adjusted accordingly. As Nunn says, the goal is physiologically normal levels—literally replacing lost hormones—not bodybuilder levels.
In terms of safety, Nunn in particular defends estrogen. "If you go back to the Women's Health Initiative study, the one that was 'the estrogen sky is falling,'" he says, "the women who were taking only the [conjugated estrogen] product didn't have an increased risk for breast cancer—only the women who were on the [estrogen plus progestin]. So you really can't blame the estrogen here."
Egan says she doesn't prescribe oral estrogen products because "it's too hard on the liver. The liver methylates it to estrone, which can increase risk for breast cancer."
In terms of cardiovascular risk, Nunn also prefers nonoral routes of administration for estrogen. "If you absorb your estrogen, it doesn't increase your clotting factors, because you avoid the first pass through the liver," he says. "So absorbed estrogen—patches, creams, pellets—doesn't increase your risk for stroke and heart attack."
Even so, patients are encouraged to have regular health screenings, as appropriate. "We certainly have our patients continue to get bone mineral density scans, keep current on their mammograms and Pap smears, and follow all the other things you should do for good health maintenance," Nunn says.
One point on which everyone agrees is the need for additional research to establish what benefits bioidentical HRT offers. The Cochrane Collaboration is expected to publish a review later this year that examines the evidence on bioidentical hormones for vasomotor symptoms; that may shed some light on their safety and efficacy. But Ribowsky, for one, would like to see some head-to-head randomized controlled trials comparing bioidentical HRT with conventional HRT.
"I think when we have studies like that available, we can make recommendations to our patients more clearly and more confidently," she says.
Egan notes that everything she learned in her fellowship was based on available evidence, but wonders if additional research would alter the view of organizations such as ACOG. "I'm just sad to say that the FDA and ACOG are about 20 years behind the times," she says, adding that insurance companies also send her letters requesting that she use conjugated estrogen preparations instead of (FDA-approved) bioidenticals.
"I'm not going to do anything to harm my patients, and we know those drugs cause breast cancer," she adds. "Why would I use those? I think the biggest thing is that we have to identify the difference between synthetic chemicals and the bioidentical hormones in the right form."
No woman looks forward to menopause (except, perhaps, for the cessation of menses). The "change of life" brings with it hot flashes, night sweats, mood swings, sleep disturbances, and loss of libido. Menopausal women are often miserable, and those around them may suffer secondhand.
It's no wonder, then, that women seek relief from their symptoms. But since the Women's Health Initiative hormone replacement therapy (HRT) trials ended abruptly in 2002, menopausal women and their clinicians have abandoned conventional HRT in droves. That left a huge void: How could women ease their transition through menopause? What could clinicians offer that was safe and effective?
Into the gap rose bioidentical hormones. Touted by proponents as superior to their conventional HRT counterparts, bioidenticals have seen a surge in use for menopausal symptoms. But not everyone is convinced by these claims—nor by the expanded use of bioidenticals as a veritable "fountain of youth."
Are women succumbing to the allure of feeling younger and more vibrant in their later years? Or are we just waiting for the science to catch up with the not-so-conventional wisdom?
A Question of Quality, Part 1
Stephen Nunn, MPAS, PA-C, has been in practice for 35 years, almost entirely in women's health (obstetrics and gynecology, as well as infertility). And he has a pretty radical perspective on menopause.
"There is nothing natural about it," he says. "If you look back, in 1910, average life expectancy for women in the US was 47. It's only in the past 75 years or so that women have lived long enough to spend a significant amount of their time—a third of their lives—in menopause."
For years, Nunn saw women with menopause and other hormonal issues for whom he couldn't do enough. "Based on the guidelines I was given, I couldn't really effect significant change for a lot of them," he says. "They would come in complaining that they felt a little better, but the available treatment didn't really do the job. And yet we were at what was considered the maximum dosing."
Some of those patients pursued other avenues of treatment—namely, bioidentical hormones—and reported back to Nunn how well they were doing and how happy they were. So when he was looking for a change, Nunn joined (full disclosure) SottoPelle, a Scottsdale, Arizona–based practice dedicated to bioidentical HRT in pellet form.
Although he has a vested interest in promoting bioidentical HRT, Nunn does raise an intriguing point when he notes that the ovary is "the only endocrine organ that gets ignored when it stops functioning." By contrast, he points to the avalanche of new products that address andropause, which is treated long-term.
"I think the quality-of-life issue, as well as the health benefits, say that we really should be treating women with—my bias—bioidentical hormones for the rest of their lives," he concludes.
His viewpoint is shared by independent clinicians. In her Covington, Louisiana, practice, Pamela Egan, FNP-C, CDE, focuses on wellness and preventive medicine. Egan completed a fellowship with the American Academy of Anti-Aging and Regenerative Medicine and will receive her master's degree in Metabolic and Nutritional Medicine within the next six months. Bioidentical HRT is a component of her patient care plan.
"It's all about keeping the body balanced nutritionally and metabolically—that is going to slow down aging, which ultimately will prevent disease," she says. "I have patients who come in and say they can't sleep at night, they're depressed, they have no libido, they have hot flushes. When we get everything balanced, they have much better quality of life. They sleep better, they want sex again, their hot flushes are gone, and anxiety and depression are diminished or alleviated altogether."
Egan isn't a fan of the term anti-aging because, she says, its use in relation to cosmeceutical products has made it "sound a little flaky." What she is trying to achieve with her patients is a lifestyle change through a holistic approach that includes nutrition and weight loss in addition to hormonal balance. "Once people are balanced," she says, "many of them get off their diabetes meds, blood pressure pills, cholesterol pills."
A Question of Quality, Part 2
Major medical organizations, such as the American College of Obstetricians and Gynecologists (ACOG) and the American Association of Clinical Endocrinologists (AACE), have a very different position on the role of bioidentical hormones. And this is where a degree of confusion creeps in, because "bioidentical hormone replacement therapy is not really an FDA-recognized term," says Jennifer Hofmann Ribowsky, MS, RPA-C, Academic Faculty/Pre-clinical Coordinator of the Pace University–Lenox Hill Hospital Physician Assistant Program in New York. "It's more a term used for marketing purposes."
That said, bioidentical hormones are essentially plant-derived hormones that are chemically similar or structurally identical to those produced by the body. And there are FDA-approved estrogen and progesterone products that are technically considered naturally occurring or bioidentical.
But traditionally, the term bioidentical hormones has referred to compounded preparations. The reservations, if not downright concerns, of groups such as ACOG and AACE generally relate to two factors: the origins of the bioidentical hormones (FDA-approved products vs compounded products) and how they are used.
Compounding is performed by a licensed pharmacist to specifications prescribed by a health care provider. But compounded products are not regulated by the FDA (they are regulated by the states), and by their nature are not standardized (though the raw materials are US Pharmacopeia–approved products). Therefore, issues of quality—purity and potency—may arise, and there is a lack of safety and efficacy data.
For example, when a clinician prescribes an estradiol patch in a dosage of "0.05 mg per 24 hours," that is precisely what the patient will receive from an FDA-approved product. "It's standardized, so you have that level of comfort that when you're prescribing a certain amount, that's what the patient is getting," Ribowsky says. "That's not always the case with compounded products."
In an August 2012 opinion paper, committees from ACOG and the American Society for Reproductive Medicine concluded that evidence in favor of bioidentical (ie, compounded) HRT was insufficient: "Patients should be counseled that menopausal hormone therapies that are proved to be safe and effective by the FDA are more appropriate for their use than individual pharmacy-compounded preparations."
But in practice, there may be additional considerations. "I leave it up to the patient whether they want compounded bioidentical hormones or FDA-approved bioidentical hormones," Egan says (though she recommends bioidenticals over synthetics). "If a patient doesn't have insurance and has to pay out of pocket, obviously it's financially feasible to get them compounded."
What's Appropriate?
In a 2007 position statement that also recommended "FDA-approved commercially available hormonal preparations," AACE added the proviso that these should be prescribed "following the guidelines published by the various medical societies." This is where the discussion of bioidentical hormones enters the grayest area.
"Estradiol and progesterone are used for the management of vasomotor symptoms that are troubling to the patient, and they should be used within usually the first five years of menopause—the lowest dose, for the shortest amount of time," Ribowsky summarizes. "In terms of being a fountain of youth or a way to stay or look younger, there's not really any support for those types of claims. They're not even studied for that purpose."
Neither Egan nor Nunn refers to a "fountain of youth"; their aim is to keep patients healthy and feeling better. (Although, yes, patients often comment that they feel younger, too.) Both emphasize that patients are monitored and HRT is adjusted accordingly. As Nunn says, the goal is physiologically normal levels—literally replacing lost hormones—not bodybuilder levels.
In terms of safety, Nunn in particular defends estrogen. "If you go back to the Women's Health Initiative study, the one that was 'the estrogen sky is falling,'" he says, "the women who were taking only the [conjugated estrogen] product didn't have an increased risk for breast cancer—only the women who were on the [estrogen plus progestin]. So you really can't blame the estrogen here."
Egan says she doesn't prescribe oral estrogen products because "it's too hard on the liver. The liver methylates it to estrone, which can increase risk for breast cancer."
In terms of cardiovascular risk, Nunn also prefers nonoral routes of administration for estrogen. "If you absorb your estrogen, it doesn't increase your clotting factors, because you avoid the first pass through the liver," he says. "So absorbed estrogen—patches, creams, pellets—doesn't increase your risk for stroke and heart attack."
Even so, patients are encouraged to have regular health screenings, as appropriate. "We certainly have our patients continue to get bone mineral density scans, keep current on their mammograms and Pap smears, and follow all the other things you should do for good health maintenance," Nunn says.
One point on which everyone agrees is the need for additional research to establish what benefits bioidentical HRT offers. The Cochrane Collaboration is expected to publish a review later this year that examines the evidence on bioidentical hormones for vasomotor symptoms; that may shed some light on their safety and efficacy. But Ribowsky, for one, would like to see some head-to-head randomized controlled trials comparing bioidentical HRT with conventional HRT.
"I think when we have studies like that available, we can make recommendations to our patients more clearly and more confidently," she says.
Egan notes that everything she learned in her fellowship was based on available evidence, but wonders if additional research would alter the view of organizations such as ACOG. "I'm just sad to say that the FDA and ACOG are about 20 years behind the times," she says, adding that insurance companies also send her letters requesting that she use conjugated estrogen preparations instead of (FDA-approved) bioidenticals.
"I'm not going to do anything to harm my patients, and we know those drugs cause breast cancer," she adds. "Why would I use those? I think the biggest thing is that we have to identify the difference between synthetic chemicals and the bioidentical hormones in the right form."
No woman looks forward to menopause (except, perhaps, for the cessation of menses). The "change of life" brings with it hot flashes, night sweats, mood swings, sleep disturbances, and loss of libido. Menopausal women are often miserable, and those around them may suffer secondhand.
It's no wonder, then, that women seek relief from their symptoms. But since the Women's Health Initiative hormone replacement therapy (HRT) trials ended abruptly in 2002, menopausal women and their clinicians have abandoned conventional HRT in droves. That left a huge void: How could women ease their transition through menopause? What could clinicians offer that was safe and effective?
Into the gap rose bioidentical hormones. Touted by proponents as superior to their conventional HRT counterparts, bioidenticals have seen a surge in use for menopausal symptoms. But not everyone is convinced by these claims—nor by the expanded use of bioidenticals as a veritable "fountain of youth."
Are women succumbing to the allure of feeling younger and more vibrant in their later years? Or are we just waiting for the science to catch up with the not-so-conventional wisdom?
A Question of Quality, Part 1
Stephen Nunn, MPAS, PA-C, has been in practice for 35 years, almost entirely in women's health (obstetrics and gynecology, as well as infertility). And he has a pretty radical perspective on menopause.
"There is nothing natural about it," he says. "If you look back, in 1910, average life expectancy for women in the US was 47. It's only in the past 75 years or so that women have lived long enough to spend a significant amount of their time—a third of their lives—in menopause."
For years, Nunn saw women with menopause and other hormonal issues for whom he couldn't do enough. "Based on the guidelines I was given, I couldn't really effect significant change for a lot of them," he says. "They would come in complaining that they felt a little better, but the available treatment didn't really do the job. And yet we were at what was considered the maximum dosing."
Some of those patients pursued other avenues of treatment—namely, bioidentical hormones—and reported back to Nunn how well they were doing and how happy they were. So when he was looking for a change, Nunn joined (full disclosure) SottoPelle, a Scottsdale, Arizona–based practice dedicated to bioidentical HRT in pellet form.
Although he has a vested interest in promoting bioidentical HRT, Nunn does raise an intriguing point when he notes that the ovary is "the only endocrine organ that gets ignored when it stops functioning." By contrast, he points to the avalanche of new products that address andropause, which is treated long-term.
"I think the quality-of-life issue, as well as the health benefits, say that we really should be treating women with—my bias—bioidentical hormones for the rest of their lives," he concludes.
His viewpoint is shared by independent clinicians. In her Covington, Louisiana, practice, Pamela Egan, FNP-C, CDE, focuses on wellness and preventive medicine. Egan completed a fellowship with the American Academy of Anti-Aging and Regenerative Medicine and will receive her master's degree in Metabolic and Nutritional Medicine within the next six months. Bioidentical HRT is a component of her patient care plan.
"It's all about keeping the body balanced nutritionally and metabolically—that is going to slow down aging, which ultimately will prevent disease," she says. "I have patients who come in and say they can't sleep at night, they're depressed, they have no libido, they have hot flushes. When we get everything balanced, they have much better quality of life. They sleep better, they want sex again, their hot flushes are gone, and anxiety and depression are diminished or alleviated altogether."
Egan isn't a fan of the term anti-aging because, she says, its use in relation to cosmeceutical products has made it "sound a little flaky." What she is trying to achieve with her patients is a lifestyle change through a holistic approach that includes nutrition and weight loss in addition to hormonal balance. "Once people are balanced," she says, "many of them get off their diabetes meds, blood pressure pills, cholesterol pills."
A Question of Quality, Part 2
Major medical organizations, such as the American College of Obstetricians and Gynecologists (ACOG) and the American Association of Clinical Endocrinologists (AACE), have a very different position on the role of bioidentical hormones. And this is where a degree of confusion creeps in, because "bioidentical hormone replacement therapy is not really an FDA-recognized term," says Jennifer Hofmann Ribowsky, MS, RPA-C, Academic Faculty/Pre-clinical Coordinator of the Pace University–Lenox Hill Hospital Physician Assistant Program in New York. "It's more a term used for marketing purposes."
That said, bioidentical hormones are essentially plant-derived hormones that are chemically similar or structurally identical to those produced by the body. And there are FDA-approved estrogen and progesterone products that are technically considered naturally occurring or bioidentical.
But traditionally, the term bioidentical hormones has referred to compounded preparations. The reservations, if not downright concerns, of groups such as ACOG and AACE generally relate to two factors: the origins of the bioidentical hormones (FDA-approved products vs compounded products) and how they are used.
Compounding is performed by a licensed pharmacist to specifications prescribed by a health care provider. But compounded products are not regulated by the FDA (they are regulated by the states), and by their nature are not standardized (though the raw materials are US Pharmacopeia–approved products). Therefore, issues of quality—purity and potency—may arise, and there is a lack of safety and efficacy data.
For example, when a clinician prescribes an estradiol patch in a dosage of "0.05 mg per 24 hours," that is precisely what the patient will receive from an FDA-approved product. "It's standardized, so you have that level of comfort that when you're prescribing a certain amount, that's what the patient is getting," Ribowsky says. "That's not always the case with compounded products."
In an August 2012 opinion paper, committees from ACOG and the American Society for Reproductive Medicine concluded that evidence in favor of bioidentical (ie, compounded) HRT was insufficient: "Patients should be counseled that menopausal hormone therapies that are proved to be safe and effective by the FDA are more appropriate for their use than individual pharmacy-compounded preparations."
But in practice, there may be additional considerations. "I leave it up to the patient whether they want compounded bioidentical hormones or FDA-approved bioidentical hormones," Egan says (though she recommends bioidenticals over synthetics). "If a patient doesn't have insurance and has to pay out of pocket, obviously it's financially feasible to get them compounded."
What's Appropriate?
In a 2007 position statement that also recommended "FDA-approved commercially available hormonal preparations," AACE added the proviso that these should be prescribed "following the guidelines published by the various medical societies." This is where the discussion of bioidentical hormones enters the grayest area.
"Estradiol and progesterone are used for the management of vasomotor symptoms that are troubling to the patient, and they should be used within usually the first five years of menopause—the lowest dose, for the shortest amount of time," Ribowsky summarizes. "In terms of being a fountain of youth or a way to stay or look younger, there's not really any support for those types of claims. They're not even studied for that purpose."
Neither Egan nor Nunn refers to a "fountain of youth"; their aim is to keep patients healthy and feeling better. (Although, yes, patients often comment that they feel younger, too.) Both emphasize that patients are monitored and HRT is adjusted accordingly. As Nunn says, the goal is physiologically normal levels—literally replacing lost hormones—not bodybuilder levels.
In terms of safety, Nunn in particular defends estrogen. "If you go back to the Women's Health Initiative study, the one that was 'the estrogen sky is falling,'" he says, "the women who were taking only the [conjugated estrogen] product didn't have an increased risk for breast cancer—only the women who were on the [estrogen plus progestin]. So you really can't blame the estrogen here."
Egan says she doesn't prescribe oral estrogen products because "it's too hard on the liver. The liver methylates it to estrone, which can increase risk for breast cancer."
In terms of cardiovascular risk, Nunn also prefers nonoral routes of administration for estrogen. "If you absorb your estrogen, it doesn't increase your clotting factors, because you avoid the first pass through the liver," he says. "So absorbed estrogen—patches, creams, pellets—doesn't increase your risk for stroke and heart attack."
Even so, patients are encouraged to have regular health screenings, as appropriate. "We certainly have our patients continue to get bone mineral density scans, keep current on their mammograms and Pap smears, and follow all the other things you should do for good health maintenance," Nunn says.
One point on which everyone agrees is the need for additional research to establish what benefits bioidentical HRT offers. The Cochrane Collaboration is expected to publish a review later this year that examines the evidence on bioidentical hormones for vasomotor symptoms; that may shed some light on their safety and efficacy. But Ribowsky, for one, would like to see some head-to-head randomized controlled trials comparing bioidentical HRT with conventional HRT.
"I think when we have studies like that available, we can make recommendations to our patients more clearly and more confidently," she says.
Egan notes that everything she learned in her fellowship was based on available evidence, but wonders if additional research would alter the view of organizations such as ACOG. "I'm just sad to say that the FDA and ACOG are about 20 years behind the times," she says, adding that insurance companies also send her letters requesting that she use conjugated estrogen preparations instead of (FDA-approved) bioidenticals.
"I'm not going to do anything to harm my patients, and we know those drugs cause breast cancer," she adds. "Why would I use those? I think the biggest thing is that we have to identify the difference between synthetic chemicals and the bioidentical hormones in the right form."
Taking Aim at Mental Illness
Since December 14, 2012, when Adam Lanza entered Sandy Hook Elementary School in Newtown, Connecticut, intent on taking the lives of innocent children and the adults tasked with protecting them, the topic of gun control in the United States has returned to the forefront. Some professional organizations, such as the American Academy of Pediatrics (AAP), have made their stance clear. In a letter to President Obama, AAP President Thomas K. McInerny, MD, FAAP, wrote:
“New federal firearms legislation that bans assault weapon sales and the sales of high-capacity magazines, strengthens mandatory waiting periods and background checks for all gun purchases, and promotes strict gun safety policies is a necessary first step. Next, the federal government must take action to improve access to services that meet the mental health and developmental needs of infants, children, and adolescents, and ensures that children and families exposed to violence have access to a medical home and other community supports.”
That “first step” is the central, divisive issue in the debate between gun control advocates and supporters of the Second Amendment, such as the National Rifle Association (NRA). But it is the next step—improving mental health services (and not only for children)—that may actually represent the crux of the matter. The risk is that, as both sides dig in their heels and try to out-shout each other, the nation will either miss or misuse an opportunity to address a complicated and unwieldy problem.
What Is Really At Issue
One week after the shooting at Sandy Hook, NRA executive Wayne LaPierre raised the idea of a “national database” of the mentally ill as one means of stemming gun violence. His comments also raised hackles, as some considered them a diversionary tactic and others worried that the mentally ill would become scapegoats in the debate.
As with all emotionally wrought topics, the intersection between violence and mental illness is complicated and controversial. Even setting aside personal positions on gun control leaves a realm of clinical uncertainty. There are no easy answers.
True psychiatric illness involves cognitive distortion (eg, the paranoia and hallucinations of schizophrenia). That positive symptomatology distinguishes mental illness from sociopathy, which entails a personality or a moral dysfunction.
“We know what neurotransmitters are involved in cognitive processes, and we can treat them,” says Cindy Parsons, DNP, ARNP-BC, FAANP, Associate Professor of Nursing, College of Natural and Health Science, University of Tampa, Florida. “When it comes to moral compasses being off-kilter, we don’t have a tried-and-true methodology that gives us even some hopefulness in terms of improvement. With Columbine and Sandy Hook, these young people were not so much paranoid about the world—they didn’t have a clear perspective on right and wrong.”
Currently, there is no treatment for antisocial personality disorder (which is diagnosed in those older than 18; in younger persons, it is known as conduct disorder). In fact, sociopathy—a particularly severe form of antisocial personality disorder—has not been a true classification in the Diagnostic and Statistical Manual of Mental Disorders. That will change this May, however, when DSM-V is published.
“Our ‘ticking time-bombs’ are probably our young people,” says Parsons. “How are we teaching young people to manage stress or conflict? We don’t. That’s not something we educate them on in school; we assume that families are educating them.”
Catherine R. Judd, MS, PA-C, who practices in Parkland Health and Hospital System’s Jail Health Program at the Dallas County Jail, recalls kids she encountered in the juvenile system. Many of them had been involved in vandalism, theft, animal cruelty, destruction of property, and arson—all criteria for a diagnosis of conduct disorder.
By contrast, “a lot of the seriously mentally ill people we see here in jail, their charges have nothing to do with weapons,” she says. “Their charges are criminal trespassing, stealing bologna out of the 7-11 because they’re hungry, urinating behind lampposts, hanging out under bridges, being ‘used’ by the real thieves to fence the copper they’re stealing off air conditioners, or to cash that ‘hot’ check.”
That isn’t to suggest that persons with mental illness are never violent. But are they necessarily more likely to be violent than those without a psychiatric diagnosis? And furthermore, who is determining that risk? These are just some of the concerns that Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa, has pondered since the subject of gun violence and the mentally ill has garnered renewed attention.
“If we define mental illness as ‘a DSM diagnosis,’ 25% of the population has had some kind of mental illness, lifetime prevalence,” he points out. “And the vast majority of people with a DSM-diagnosed mental illness are not at risk for doing anything like this.”
He has heard from patients who are concerned about being “labeled” based on their diagnosis. The question has been raised as to whether that increased stigma—already a huge issue with mental illness—will deter patients from seeking help. Another area of concern is how clinicians would respond: Will they avoid diagnosing patients because they don’t want the responsibility? Or will they be ultraconservative and write “paranoia” in the chart, when the patient may only have some mild anxiety?
“The problem is that when you start writing laws, [politicians] don’t have the understanding that we in medicine have about the difference between someone who’s at risk and someone who isn’t,” St. John says. “So some of it is going to be the definition—who is going to define it? And then how are they going to follow up on that?”
How information might be gleaned is another concern, and one that can be misleading. If medical charts or pharmacy records are mined, say, for specific diagnoses or medications, there is room for error.
“I have a patient with multiple sclerosis who takes an antidepressant for urinary incontinence,” St. John says. “She’s not taking it for depression. But, you know, she’s on an antidepressant—so, therefore, she must have a ‘mental illness.’”
What You Can Do
The mainstream media would have us believe that the individuals who represent the greatest threat to public safety walk into a clinic foaming at the mouth and with their eyes rolling back in their head—in other words, they should be identifiable at first glance. But identification of mental illness can be both more subtle and more complex, even for those with a psych/mental health background.
The key sign that someone has a mental impairment is disordered thinking. They may seem as if they can’t quite get their lives together; maybe they have difficulty following what a clinician considers a fairly straightforward regimen. They may appear disheveled or exhibit poor hygiene. Their responses to questions may seem “odd,” or they may convey a sense of fearfulness or paranoia.
With treatment, many people with mental illnesses do quite well. The difficulty is getting them adequate treatment, as well as monitoring to ensure they comply with it. Unlike other patients, who may be “willfully” noncompliant, those with mental illness are often incapable of keeping appointments or figuring out how to refill their prescription or follow the prescribed regimen without assistance.
Where does that assistance come from? That is precisely the problem the US has faced since deinstitutionalization occurred in the 1980s. Yes, there were asylums in which mentally ill patients were abused or neglected or otherwise treated as less than human. But for some patients, the facilities lived up to their names.
“There are a lot of people who actually did well in the institutions, because they needed that regimen—they got sleep, food, and shelter,” says St. John. “There are people who the best thing for them, and for society, is to put them in a place where they have protection. They call them asylums for a reason. And then we just kind of threw them out in the street and didn’t provide the services. That’s where we went wrong.”
The community-based services that were promised when the institutions closed have not materialized in a sufficient way. What is needed, advocates say, is adequate housing for the mentally ill—places where trained professionals can keep an eye on them and assist them with matters of daily living, including treatment plans.
“If you have that case management integrated into the housing component,” Parsons says, “if you have assigned and supportive housing for the chronically mentally ill, you’re going to do a better job getting them into treatment.”
That would rescue many of them from homelessness and perhaps cut down on some of the minor criminal offenses for which many mentally ill individuals find themselves incarcerated. It would also provide a layer of safety, as someone would be monitoring the patient for signs of deterioration.
“When symptoms worsen, what patients do is socially withdraw—they don’t want to be around people because they tend to be paranoid, their thoughts are more disordered,” St. John observes. “So then there aren’t people around to see them, and then you don’t hear anything until something bad happens.”
Equally important, and slowly starting to occur, is the integration of behavioral health services into primary care. Parsons is hopeful that the emergence of accountable care organizations and the expansion of the medical home concept will lead to better communication and coordination between providers, and ultimately better care for mentally ill individuals.
Even before that integration is completed, Parsons says, primary care providers should be networking with their psych/mental health colleagues. For one thing, a patient’s mental status can have a significant impact on his or her physical health and ability to take care of him- or herself. And for another, should a primary care provider have concerns about a patient’s mental status, having a specialist to call can be a lifeline.
“If you have a feeling that this person needs help, just saying ‘You really need to see a mental health provider’ and leaving it at that is probably not sufficient,” Parsons says.
She recommends knowing what specific resources are available locally, offering them to patients, and being prepared to make a phone call yourself if psych/mental health services are so scarce or overbooked that the patient can’t get an appointment for six or eight weeks. “Having relationships with folks who you can pick up the phone and say ‘I really have this urgent situation; can you see this patient or can you get me somebody who can see them within the next two or three days?’ is probably going to be our best bet,” she says. “And if we can integrate behavioral health on the same site, we have that ready access.”
Whatever the outcome of the latest gun control debate, there is no question that it is shining a spotlight on a critical issue for the US health care system. The lack of adequate care for the mentally ill impacts not only affected individuals, but also the public at large. It is a subject that must be handled with care, but everyone needs to participate in the discussion.
“Sticking our heads in the sand certainly is not the best option. I think we all have to take some responsibility for solving these problems,” Parsons says. “We have to engage all of these folks—the gun lobbyists, the gun control advocates, Congress, local leaders—in dialogue. How do we role model conflict resolution when we take very staunch positions and don’t communicate, don’t collaborate, don’t compromise?”
Since December 14, 2012, when Adam Lanza entered Sandy Hook Elementary School in Newtown, Connecticut, intent on taking the lives of innocent children and the adults tasked with protecting them, the topic of gun control in the United States has returned to the forefront. Some professional organizations, such as the American Academy of Pediatrics (AAP), have made their stance clear. In a letter to President Obama, AAP President Thomas K. McInerny, MD, FAAP, wrote:
“New federal firearms legislation that bans assault weapon sales and the sales of high-capacity magazines, strengthens mandatory waiting periods and background checks for all gun purchases, and promotes strict gun safety policies is a necessary first step. Next, the federal government must take action to improve access to services that meet the mental health and developmental needs of infants, children, and adolescents, and ensures that children and families exposed to violence have access to a medical home and other community supports.”
That “first step” is the central, divisive issue in the debate between gun control advocates and supporters of the Second Amendment, such as the National Rifle Association (NRA). But it is the next step—improving mental health services (and not only for children)—that may actually represent the crux of the matter. The risk is that, as both sides dig in their heels and try to out-shout each other, the nation will either miss or misuse an opportunity to address a complicated and unwieldy problem.
What Is Really At Issue
One week after the shooting at Sandy Hook, NRA executive Wayne LaPierre raised the idea of a “national database” of the mentally ill as one means of stemming gun violence. His comments also raised hackles, as some considered them a diversionary tactic and others worried that the mentally ill would become scapegoats in the debate.
As with all emotionally wrought topics, the intersection between violence and mental illness is complicated and controversial. Even setting aside personal positions on gun control leaves a realm of clinical uncertainty. There are no easy answers.
True psychiatric illness involves cognitive distortion (eg, the paranoia and hallucinations of schizophrenia). That positive symptomatology distinguishes mental illness from sociopathy, which entails a personality or a moral dysfunction.
“We know what neurotransmitters are involved in cognitive processes, and we can treat them,” says Cindy Parsons, DNP, ARNP-BC, FAANP, Associate Professor of Nursing, College of Natural and Health Science, University of Tampa, Florida. “When it comes to moral compasses being off-kilter, we don’t have a tried-and-true methodology that gives us even some hopefulness in terms of improvement. With Columbine and Sandy Hook, these young people were not so much paranoid about the world—they didn’t have a clear perspective on right and wrong.”
Currently, there is no treatment for antisocial personality disorder (which is diagnosed in those older than 18; in younger persons, it is known as conduct disorder). In fact, sociopathy—a particularly severe form of antisocial personality disorder—has not been a true classification in the Diagnostic and Statistical Manual of Mental Disorders. That will change this May, however, when DSM-V is published.
“Our ‘ticking time-bombs’ are probably our young people,” says Parsons. “How are we teaching young people to manage stress or conflict? We don’t. That’s not something we educate them on in school; we assume that families are educating them.”
Catherine R. Judd, MS, PA-C, who practices in Parkland Health and Hospital System’s Jail Health Program at the Dallas County Jail, recalls kids she encountered in the juvenile system. Many of them had been involved in vandalism, theft, animal cruelty, destruction of property, and arson—all criteria for a diagnosis of conduct disorder.
By contrast, “a lot of the seriously mentally ill people we see here in jail, their charges have nothing to do with weapons,” she says. “Their charges are criminal trespassing, stealing bologna out of the 7-11 because they’re hungry, urinating behind lampposts, hanging out under bridges, being ‘used’ by the real thieves to fence the copper they’re stealing off air conditioners, or to cash that ‘hot’ check.”
That isn’t to suggest that persons with mental illness are never violent. But are they necessarily more likely to be violent than those without a psychiatric diagnosis? And furthermore, who is determining that risk? These are just some of the concerns that Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa, has pondered since the subject of gun violence and the mentally ill has garnered renewed attention.
“If we define mental illness as ‘a DSM diagnosis,’ 25% of the population has had some kind of mental illness, lifetime prevalence,” he points out. “And the vast majority of people with a DSM-diagnosed mental illness are not at risk for doing anything like this.”
He has heard from patients who are concerned about being “labeled” based on their diagnosis. The question has been raised as to whether that increased stigma—already a huge issue with mental illness—will deter patients from seeking help. Another area of concern is how clinicians would respond: Will they avoid diagnosing patients because they don’t want the responsibility? Or will they be ultraconservative and write “paranoia” in the chart, when the patient may only have some mild anxiety?
“The problem is that when you start writing laws, [politicians] don’t have the understanding that we in medicine have about the difference between someone who’s at risk and someone who isn’t,” St. John says. “So some of it is going to be the definition—who is going to define it? And then how are they going to follow up on that?”
How information might be gleaned is another concern, and one that can be misleading. If medical charts or pharmacy records are mined, say, for specific diagnoses or medications, there is room for error.
“I have a patient with multiple sclerosis who takes an antidepressant for urinary incontinence,” St. John says. “She’s not taking it for depression. But, you know, she’s on an antidepressant—so, therefore, she must have a ‘mental illness.’”
What You Can Do
The mainstream media would have us believe that the individuals who represent the greatest threat to public safety walk into a clinic foaming at the mouth and with their eyes rolling back in their head—in other words, they should be identifiable at first glance. But identification of mental illness can be both more subtle and more complex, even for those with a psych/mental health background.
The key sign that someone has a mental impairment is disordered thinking. They may seem as if they can’t quite get their lives together; maybe they have difficulty following what a clinician considers a fairly straightforward regimen. They may appear disheveled or exhibit poor hygiene. Their responses to questions may seem “odd,” or they may convey a sense of fearfulness or paranoia.
With treatment, many people with mental illnesses do quite well. The difficulty is getting them adequate treatment, as well as monitoring to ensure they comply with it. Unlike other patients, who may be “willfully” noncompliant, those with mental illness are often incapable of keeping appointments or figuring out how to refill their prescription or follow the prescribed regimen without assistance.
Where does that assistance come from? That is precisely the problem the US has faced since deinstitutionalization occurred in the 1980s. Yes, there were asylums in which mentally ill patients were abused or neglected or otherwise treated as less than human. But for some patients, the facilities lived up to their names.
“There are a lot of people who actually did well in the institutions, because they needed that regimen—they got sleep, food, and shelter,” says St. John. “There are people who the best thing for them, and for society, is to put them in a place where they have protection. They call them asylums for a reason. And then we just kind of threw them out in the street and didn’t provide the services. That’s where we went wrong.”
The community-based services that were promised when the institutions closed have not materialized in a sufficient way. What is needed, advocates say, is adequate housing for the mentally ill—places where trained professionals can keep an eye on them and assist them with matters of daily living, including treatment plans.
“If you have that case management integrated into the housing component,” Parsons says, “if you have assigned and supportive housing for the chronically mentally ill, you’re going to do a better job getting them into treatment.”
That would rescue many of them from homelessness and perhaps cut down on some of the minor criminal offenses for which many mentally ill individuals find themselves incarcerated. It would also provide a layer of safety, as someone would be monitoring the patient for signs of deterioration.
“When symptoms worsen, what patients do is socially withdraw—they don’t want to be around people because they tend to be paranoid, their thoughts are more disordered,” St. John observes. “So then there aren’t people around to see them, and then you don’t hear anything until something bad happens.”
Equally important, and slowly starting to occur, is the integration of behavioral health services into primary care. Parsons is hopeful that the emergence of accountable care organizations and the expansion of the medical home concept will lead to better communication and coordination between providers, and ultimately better care for mentally ill individuals.
Even before that integration is completed, Parsons says, primary care providers should be networking with their psych/mental health colleagues. For one thing, a patient’s mental status can have a significant impact on his or her physical health and ability to take care of him- or herself. And for another, should a primary care provider have concerns about a patient’s mental status, having a specialist to call can be a lifeline.
“If you have a feeling that this person needs help, just saying ‘You really need to see a mental health provider’ and leaving it at that is probably not sufficient,” Parsons says.
She recommends knowing what specific resources are available locally, offering them to patients, and being prepared to make a phone call yourself if psych/mental health services are so scarce or overbooked that the patient can’t get an appointment for six or eight weeks. “Having relationships with folks who you can pick up the phone and say ‘I really have this urgent situation; can you see this patient or can you get me somebody who can see them within the next two or three days?’ is probably going to be our best bet,” she says. “And if we can integrate behavioral health on the same site, we have that ready access.”
Whatever the outcome of the latest gun control debate, there is no question that it is shining a spotlight on a critical issue for the US health care system. The lack of adequate care for the mentally ill impacts not only affected individuals, but also the public at large. It is a subject that must be handled with care, but everyone needs to participate in the discussion.
“Sticking our heads in the sand certainly is not the best option. I think we all have to take some responsibility for solving these problems,” Parsons says. “We have to engage all of these folks—the gun lobbyists, the gun control advocates, Congress, local leaders—in dialogue. How do we role model conflict resolution when we take very staunch positions and don’t communicate, don’t collaborate, don’t compromise?”
Since December 14, 2012, when Adam Lanza entered Sandy Hook Elementary School in Newtown, Connecticut, intent on taking the lives of innocent children and the adults tasked with protecting them, the topic of gun control in the United States has returned to the forefront. Some professional organizations, such as the American Academy of Pediatrics (AAP), have made their stance clear. In a letter to President Obama, AAP President Thomas K. McInerny, MD, FAAP, wrote:
“New federal firearms legislation that bans assault weapon sales and the sales of high-capacity magazines, strengthens mandatory waiting periods and background checks for all gun purchases, and promotes strict gun safety policies is a necessary first step. Next, the federal government must take action to improve access to services that meet the mental health and developmental needs of infants, children, and adolescents, and ensures that children and families exposed to violence have access to a medical home and other community supports.”
That “first step” is the central, divisive issue in the debate between gun control advocates and supporters of the Second Amendment, such as the National Rifle Association (NRA). But it is the next step—improving mental health services (and not only for children)—that may actually represent the crux of the matter. The risk is that, as both sides dig in their heels and try to out-shout each other, the nation will either miss or misuse an opportunity to address a complicated and unwieldy problem.
What Is Really At Issue
One week after the shooting at Sandy Hook, NRA executive Wayne LaPierre raised the idea of a “national database” of the mentally ill as one means of stemming gun violence. His comments also raised hackles, as some considered them a diversionary tactic and others worried that the mentally ill would become scapegoats in the debate.
As with all emotionally wrought topics, the intersection between violence and mental illness is complicated and controversial. Even setting aside personal positions on gun control leaves a realm of clinical uncertainty. There are no easy answers.
True psychiatric illness involves cognitive distortion (eg, the paranoia and hallucinations of schizophrenia). That positive symptomatology distinguishes mental illness from sociopathy, which entails a personality or a moral dysfunction.
“We know what neurotransmitters are involved in cognitive processes, and we can treat them,” says Cindy Parsons, DNP, ARNP-BC, FAANP, Associate Professor of Nursing, College of Natural and Health Science, University of Tampa, Florida. “When it comes to moral compasses being off-kilter, we don’t have a tried-and-true methodology that gives us even some hopefulness in terms of improvement. With Columbine and Sandy Hook, these young people were not so much paranoid about the world—they didn’t have a clear perspective on right and wrong.”
Currently, there is no treatment for antisocial personality disorder (which is diagnosed in those older than 18; in younger persons, it is known as conduct disorder). In fact, sociopathy—a particularly severe form of antisocial personality disorder—has not been a true classification in the Diagnostic and Statistical Manual of Mental Disorders. That will change this May, however, when DSM-V is published.
“Our ‘ticking time-bombs’ are probably our young people,” says Parsons. “How are we teaching young people to manage stress or conflict? We don’t. That’s not something we educate them on in school; we assume that families are educating them.”
Catherine R. Judd, MS, PA-C, who practices in Parkland Health and Hospital System’s Jail Health Program at the Dallas County Jail, recalls kids she encountered in the juvenile system. Many of them had been involved in vandalism, theft, animal cruelty, destruction of property, and arson—all criteria for a diagnosis of conduct disorder.
By contrast, “a lot of the seriously mentally ill people we see here in jail, their charges have nothing to do with weapons,” she says. “Their charges are criminal trespassing, stealing bologna out of the 7-11 because they’re hungry, urinating behind lampposts, hanging out under bridges, being ‘used’ by the real thieves to fence the copper they’re stealing off air conditioners, or to cash that ‘hot’ check.”
That isn’t to suggest that persons with mental illness are never violent. But are they necessarily more likely to be violent than those without a psychiatric diagnosis? And furthermore, who is determining that risk? These are just some of the concerns that Don St. John, MA, PA-C, who practices in adult outpatient psychiatry at the University of Iowa, has pondered since the subject of gun violence and the mentally ill has garnered renewed attention.
“If we define mental illness as ‘a DSM diagnosis,’ 25% of the population has had some kind of mental illness, lifetime prevalence,” he points out. “And the vast majority of people with a DSM-diagnosed mental illness are not at risk for doing anything like this.”
He has heard from patients who are concerned about being “labeled” based on their diagnosis. The question has been raised as to whether that increased stigma—already a huge issue with mental illness—will deter patients from seeking help. Another area of concern is how clinicians would respond: Will they avoid diagnosing patients because they don’t want the responsibility? Or will they be ultraconservative and write “paranoia” in the chart, when the patient may only have some mild anxiety?
“The problem is that when you start writing laws, [politicians] don’t have the understanding that we in medicine have about the difference between someone who’s at risk and someone who isn’t,” St. John says. “So some of it is going to be the definition—who is going to define it? And then how are they going to follow up on that?”
How information might be gleaned is another concern, and one that can be misleading. If medical charts or pharmacy records are mined, say, for specific diagnoses or medications, there is room for error.
“I have a patient with multiple sclerosis who takes an antidepressant for urinary incontinence,” St. John says. “She’s not taking it for depression. But, you know, she’s on an antidepressant—so, therefore, she must have a ‘mental illness.’”
What You Can Do
The mainstream media would have us believe that the individuals who represent the greatest threat to public safety walk into a clinic foaming at the mouth and with their eyes rolling back in their head—in other words, they should be identifiable at first glance. But identification of mental illness can be both more subtle and more complex, even for those with a psych/mental health background.
The key sign that someone has a mental impairment is disordered thinking. They may seem as if they can’t quite get their lives together; maybe they have difficulty following what a clinician considers a fairly straightforward regimen. They may appear disheveled or exhibit poor hygiene. Their responses to questions may seem “odd,” or they may convey a sense of fearfulness or paranoia.
With treatment, many people with mental illnesses do quite well. The difficulty is getting them adequate treatment, as well as monitoring to ensure they comply with it. Unlike other patients, who may be “willfully” noncompliant, those with mental illness are often incapable of keeping appointments or figuring out how to refill their prescription or follow the prescribed regimen without assistance.
Where does that assistance come from? That is precisely the problem the US has faced since deinstitutionalization occurred in the 1980s. Yes, there were asylums in which mentally ill patients were abused or neglected or otherwise treated as less than human. But for some patients, the facilities lived up to their names.
“There are a lot of people who actually did well in the institutions, because they needed that regimen—they got sleep, food, and shelter,” says St. John. “There are people who the best thing for them, and for society, is to put them in a place where they have protection. They call them asylums for a reason. And then we just kind of threw them out in the street and didn’t provide the services. That’s where we went wrong.”
The community-based services that were promised when the institutions closed have not materialized in a sufficient way. What is needed, advocates say, is adequate housing for the mentally ill—places where trained professionals can keep an eye on them and assist them with matters of daily living, including treatment plans.
“If you have that case management integrated into the housing component,” Parsons says, “if you have assigned and supportive housing for the chronically mentally ill, you’re going to do a better job getting them into treatment.”
That would rescue many of them from homelessness and perhaps cut down on some of the minor criminal offenses for which many mentally ill individuals find themselves incarcerated. It would also provide a layer of safety, as someone would be monitoring the patient for signs of deterioration.
“When symptoms worsen, what patients do is socially withdraw—they don’t want to be around people because they tend to be paranoid, their thoughts are more disordered,” St. John observes. “So then there aren’t people around to see them, and then you don’t hear anything until something bad happens.”
Equally important, and slowly starting to occur, is the integration of behavioral health services into primary care. Parsons is hopeful that the emergence of accountable care organizations and the expansion of the medical home concept will lead to better communication and coordination between providers, and ultimately better care for mentally ill individuals.
Even before that integration is completed, Parsons says, primary care providers should be networking with their psych/mental health colleagues. For one thing, a patient’s mental status can have a significant impact on his or her physical health and ability to take care of him- or herself. And for another, should a primary care provider have concerns about a patient’s mental status, having a specialist to call can be a lifeline.
“If you have a feeling that this person needs help, just saying ‘You really need to see a mental health provider’ and leaving it at that is probably not sufficient,” Parsons says.
She recommends knowing what specific resources are available locally, offering them to patients, and being prepared to make a phone call yourself if psych/mental health services are so scarce or overbooked that the patient can’t get an appointment for six or eight weeks. “Having relationships with folks who you can pick up the phone and say ‘I really have this urgent situation; can you see this patient or can you get me somebody who can see them within the next two or three days?’ is probably going to be our best bet,” she says. “And if we can integrate behavioral health on the same site, we have that ready access.”
Whatever the outcome of the latest gun control debate, there is no question that it is shining a spotlight on a critical issue for the US health care system. The lack of adequate care for the mentally ill impacts not only affected individuals, but also the public at large. It is a subject that must be handled with care, but everyone needs to participate in the discussion.
“Sticking our heads in the sand certainly is not the best option. I think we all have to take some responsibility for solving these problems,” Parsons says. “We have to engage all of these folks—the gun lobbyists, the gun control advocates, Congress, local leaders—in dialogue. How do we role model conflict resolution when we take very staunch positions and don’t communicate, don’t collaborate, don’t compromise?”
A Bonanza of Influenza
In a flu season that has been described in superlative terms (eg, Worst In Years), Massachusetts has perhaps been the poster child for just how widespread, virulent, and debilitating the virus has been. While the state reported a slight decline in flu activity in mid-January, Nancy O’Rourke, MSN, ACNP, ANP, RnC, FAANP, who practices in the ICU and urgent care/emergency department settings of Good Samaritan Medical Center in Brockton, says, “We’re still seeing a lot of people who are very, very ill.”
Her description of the situation in Massachusetts will be familiar to clinicians in many of the 48 states that have reported widespread flu activity: “Emergency departments across the state are still packed. For the past three or four weeks, our ICU has been at full capacity every single day, and so has every other hospital in Massachusetts. There are just no beds to be had anywhere.”
The CDC’s FluView (www.cdc.gov/flu/weekly) for the week ending January 19 paints a national picture of epidemic proportions. About 26% of specimens tested by reporting laboratories were positive for influenza. The proportion of reported deaths attributable to pneumonia and influenza (9.8%) was above the epidemic threshold. Eight pediatric deaths were reported (although not all occurred during that particular week; there have been 37 pediatric deaths reported since flu season began). The cumulative rate (from October 1, 2012, to January 19, 2013) of laboratory-confirmed influenza-associated hospitalizations was 22.2 per 100,000 population; almost half of cases involved adults 65 and older.
In Massachusetts alone, about 11,000 people have already tested positive for flu. And as O’Rourke points out, “Those are just the folks who have shown up and been tested. There may be many more who are at home, just weathering it.”
All in all, it would be an understatement to say it’s been a pretty bad year for the flu.
Is It Really the Flu?
The CDC data focus on confirmed cases of influenza. But as O’Rourke notes, there are individuals who may not seek care (or, ironically, do not feel well enough to do so), as well as those who present too late in the course of illness for a flu test.
The CDC, though, also reports an increase in outpatient visits for influenza-like illness, which is defined as a temperature of at least 100°F, cough, and/or sore throat. While this description focuses on quantifiable symptoms, it does little to convey the malaise caused by the flu. When lifting your hand to pick up a glass of water on the bedside table seems like an insurmountable task, or standing upright long enough to shower becomes an unnecessary extravagance, you know you’re sick!
One of the confounding factors of this flu season has been the confluence of circulating viruses and infections. Besides influenza (three strains, no less), there have been outbreaks of norovirus and cases of mononucleosis, as well as the usual assortment of upper respiratory infections.
The distinguishing feature of flu, clinicians in the field say, tends to be fever. “If a child comes in with a high fever—101°F to 103°F—that child is more likely to have flu,” says Patrick E. Killeen, MS, PA-C, who practices at Danbury Hospital in Connecticut and holds academic posts in the Yale University School of Medicine’s Department of Pediatrics and the Quinnipiac University School of Health Sciences. “Whereas with RSV [respiratory syncytial virus] or rhinovirus, they have very similar symptomatology and x-ray findings, but they don’t have the high fever.”
Killeen and his colleagues have also observed that “children with the flu are more likely to develop secondary bacterial pneumonias. They’ve been sick for three or four days, they come into the hospital, and then their chest x-rays are showing significant infiltrate and they have high white counts.”
In the outpatient setting, Christopher M. Barry, PA-C, says a good history and physical examination can provide a lot of information. He echoes Killeen’s assessment that a quick-onset, high fever is often the first sign. But looking further, “We tend to see a person who just looks really sick. They often have a lot of nasal discharge, and sometimes the eyes have almost a glassy appearance. That gives us a little bit of a clue as well.”
At Jeffers, Mann, and Artman Pediatric and Adolescent Medicine in North Carolina, where Barry practices, they are fortunate to have access to a rapid antigen detection flu test. “We get a result back usually within five to 10 minutes,” he says. “So if there’s a suspicion, we typically run the test.”
At the other end of the age spectrum, O’Rourke has noticed that elderly patients tend to minimize their symptoms (as a general rule; this is not specific to flu). Many are appearing at urgent care centers and emergency departments when they’re already very ill.
“A lot of them are coming in with viral pneumonia,” she reports. “It quickly develops in them. They come in and they’re short of breath, they have really bad oxygenation, and they require a day or two in the ICU.”
Another observation that O’Rourke has made, and which has been noted extensively in national news broadcasts, is that “it’s a lingering illness this year; people are sick for a week, two weeks. Even though they may start to feel better, they’re still washed out, coughing, with chest symptoms that they need to pay attention to.”
To Treat Or Not To Treat
In some areas of the country (including Boston, where a state of emergency was declared), practicing clinicians have been so overwhelmed with patients that some have abandoned flu testing and decide to initiate antiviral treatment without a validated diagnosis. As Killeen says, “If it looks like flu and acts like flu, then people are going to treat it with [oseltamivir].”
With older patients, O’Rourke says, “I’m going to err on the side of giving it to them as opposed to not, because they are so vulnerable. A lot of them have comorbid conditions, such as diabetes or COPD, which puts them at greater risk. Any folks with chronic illnesses—asthma, HIV—you want to be more aggressive with their management.”
However, there may be patients for whom the gastrointestinal side effects of the medication do not sufficiently outweigh the benefits of a slightly reduced course of flu. “In many situations—and especially if we haven’t started treatment within the first 48 hours—we don’t necessarily recommend using an antiviral medication,” says Barry. “Even if we’ve caught it within 48 hours, if the child is otherwise healthy with no major underlying heart or lung issues, often I’ll leave it up to the parents.”
Barry has also learned to emphasize what antiviral medication can and cannot do in discussions with patients and families. “We try to make parents aware that it’s not a magic bullet,” he says. “It won’t cure the flu, boom, right there on the spot.”
While Killeen also supports the appropriate use of antiviral medications, he notes that there are some patients for whom clinicians will want to be more cautious about prescribing them. “A sickle cell patient, for example—if that person comes in with the flu, you have to think about other encapsulated organisms, like pneumococcus, that could be potentially detrimental to the patient, pending their vaccination status,” he says.
Clinicians have to rely on their clinical judgment when they don’t have the time or resources to confirm a flu diagnosis with a test. “If a pediatric patient comes in with petechiae and fever, that tells me, ‘No, it’s probably not the flu; we should be thinking about something else going on,’” Killeen says by way of example. “But absent other contradictory physical exam findings, then I would say we would treat [with antivirals].”
A Word (Or Two) Of Advice
For clinicians who have seen no abatement of flu season, or whose regions were late starters, here is some advice from your colleagues:
• Get your flu shot if you haven’t already. “Its efficacy varies, but in healthy adults you’re getting between 60% and 80% immunity,” O’Rourke notes.
• Wash your hands. “The quick alcohol hand rubs are great, but in flu season, I love soap and water,” says O’Rourke.
• Protect yourself and your other patients. Wear a mask. Ask patients with suspected cases of flu to do the same. If possible, do what Barry and his colleagues do: “We have anybody who has flu-like symptoms come in a separate entrance to our office, so we don’t have them in our main waiting area.”
• Stay home if you’re sick. This isn’t quite the no-brainer it seems. “[Clinicians] will come to work when they’re deathly ill, because they don’t want to burden their colleagues, they don’t want to miss out, and there’s a certain pressure for us to be the ‘soldiers’ who carry on,” O’Rourke observes. “If we’re sick, we’re not doing anybody any favors by coming to work. I think the better part of valor is to stay home and take care of yourself. We can’t be good caregivers to others if we can’t care for ourselves.”
In a flu season that has been described in superlative terms (eg, Worst In Years), Massachusetts has perhaps been the poster child for just how widespread, virulent, and debilitating the virus has been. While the state reported a slight decline in flu activity in mid-January, Nancy O’Rourke, MSN, ACNP, ANP, RnC, FAANP, who practices in the ICU and urgent care/emergency department settings of Good Samaritan Medical Center in Brockton, says, “We’re still seeing a lot of people who are very, very ill.”
Her description of the situation in Massachusetts will be familiar to clinicians in many of the 48 states that have reported widespread flu activity: “Emergency departments across the state are still packed. For the past three or four weeks, our ICU has been at full capacity every single day, and so has every other hospital in Massachusetts. There are just no beds to be had anywhere.”
The CDC’s FluView (www.cdc.gov/flu/weekly) for the week ending January 19 paints a national picture of epidemic proportions. About 26% of specimens tested by reporting laboratories were positive for influenza. The proportion of reported deaths attributable to pneumonia and influenza (9.8%) was above the epidemic threshold. Eight pediatric deaths were reported (although not all occurred during that particular week; there have been 37 pediatric deaths reported since flu season began). The cumulative rate (from October 1, 2012, to January 19, 2013) of laboratory-confirmed influenza-associated hospitalizations was 22.2 per 100,000 population; almost half of cases involved adults 65 and older.
In Massachusetts alone, about 11,000 people have already tested positive for flu. And as O’Rourke points out, “Those are just the folks who have shown up and been tested. There may be many more who are at home, just weathering it.”
All in all, it would be an understatement to say it’s been a pretty bad year for the flu.
Is It Really the Flu?
The CDC data focus on confirmed cases of influenza. But as O’Rourke notes, there are individuals who may not seek care (or, ironically, do not feel well enough to do so), as well as those who present too late in the course of illness for a flu test.
The CDC, though, also reports an increase in outpatient visits for influenza-like illness, which is defined as a temperature of at least 100°F, cough, and/or sore throat. While this description focuses on quantifiable symptoms, it does little to convey the malaise caused by the flu. When lifting your hand to pick up a glass of water on the bedside table seems like an insurmountable task, or standing upright long enough to shower becomes an unnecessary extravagance, you know you’re sick!
One of the confounding factors of this flu season has been the confluence of circulating viruses and infections. Besides influenza (three strains, no less), there have been outbreaks of norovirus and cases of mononucleosis, as well as the usual assortment of upper respiratory infections.
The distinguishing feature of flu, clinicians in the field say, tends to be fever. “If a child comes in with a high fever—101°F to 103°F—that child is more likely to have flu,” says Patrick E. Killeen, MS, PA-C, who practices at Danbury Hospital in Connecticut and holds academic posts in the Yale University School of Medicine’s Department of Pediatrics and the Quinnipiac University School of Health Sciences. “Whereas with RSV [respiratory syncytial virus] or rhinovirus, they have very similar symptomatology and x-ray findings, but they don’t have the high fever.”
Killeen and his colleagues have also observed that “children with the flu are more likely to develop secondary bacterial pneumonias. They’ve been sick for three or four days, they come into the hospital, and then their chest x-rays are showing significant infiltrate and they have high white counts.”
In the outpatient setting, Christopher M. Barry, PA-C, says a good history and physical examination can provide a lot of information. He echoes Killeen’s assessment that a quick-onset, high fever is often the first sign. But looking further, “We tend to see a person who just looks really sick. They often have a lot of nasal discharge, and sometimes the eyes have almost a glassy appearance. That gives us a little bit of a clue as well.”
At Jeffers, Mann, and Artman Pediatric and Adolescent Medicine in North Carolina, where Barry practices, they are fortunate to have access to a rapid antigen detection flu test. “We get a result back usually within five to 10 minutes,” he says. “So if there’s a suspicion, we typically run the test.”
At the other end of the age spectrum, O’Rourke has noticed that elderly patients tend to minimize their symptoms (as a general rule; this is not specific to flu). Many are appearing at urgent care centers and emergency departments when they’re already very ill.
“A lot of them are coming in with viral pneumonia,” she reports. “It quickly develops in them. They come in and they’re short of breath, they have really bad oxygenation, and they require a day or two in the ICU.”
Another observation that O’Rourke has made, and which has been noted extensively in national news broadcasts, is that “it’s a lingering illness this year; people are sick for a week, two weeks. Even though they may start to feel better, they’re still washed out, coughing, with chest symptoms that they need to pay attention to.”
To Treat Or Not To Treat
In some areas of the country (including Boston, where a state of emergency was declared), practicing clinicians have been so overwhelmed with patients that some have abandoned flu testing and decide to initiate antiviral treatment without a validated diagnosis. As Killeen says, “If it looks like flu and acts like flu, then people are going to treat it with [oseltamivir].”
With older patients, O’Rourke says, “I’m going to err on the side of giving it to them as opposed to not, because they are so vulnerable. A lot of them have comorbid conditions, such as diabetes or COPD, which puts them at greater risk. Any folks with chronic illnesses—asthma, HIV—you want to be more aggressive with their management.”
However, there may be patients for whom the gastrointestinal side effects of the medication do not sufficiently outweigh the benefits of a slightly reduced course of flu. “In many situations—and especially if we haven’t started treatment within the first 48 hours—we don’t necessarily recommend using an antiviral medication,” says Barry. “Even if we’ve caught it within 48 hours, if the child is otherwise healthy with no major underlying heart or lung issues, often I’ll leave it up to the parents.”
Barry has also learned to emphasize what antiviral medication can and cannot do in discussions with patients and families. “We try to make parents aware that it’s not a magic bullet,” he says. “It won’t cure the flu, boom, right there on the spot.”
While Killeen also supports the appropriate use of antiviral medications, he notes that there are some patients for whom clinicians will want to be more cautious about prescribing them. “A sickle cell patient, for example—if that person comes in with the flu, you have to think about other encapsulated organisms, like pneumococcus, that could be potentially detrimental to the patient, pending their vaccination status,” he says.
Clinicians have to rely on their clinical judgment when they don’t have the time or resources to confirm a flu diagnosis with a test. “If a pediatric patient comes in with petechiae and fever, that tells me, ‘No, it’s probably not the flu; we should be thinking about something else going on,’” Killeen says by way of example. “But absent other contradictory physical exam findings, then I would say we would treat [with antivirals].”
A Word (Or Two) Of Advice
For clinicians who have seen no abatement of flu season, or whose regions were late starters, here is some advice from your colleagues:
• Get your flu shot if you haven’t already. “Its efficacy varies, but in healthy adults you’re getting between 60% and 80% immunity,” O’Rourke notes.
• Wash your hands. “The quick alcohol hand rubs are great, but in flu season, I love soap and water,” says O’Rourke.
• Protect yourself and your other patients. Wear a mask. Ask patients with suspected cases of flu to do the same. If possible, do what Barry and his colleagues do: “We have anybody who has flu-like symptoms come in a separate entrance to our office, so we don’t have them in our main waiting area.”
• Stay home if you’re sick. This isn’t quite the no-brainer it seems. “[Clinicians] will come to work when they’re deathly ill, because they don’t want to burden their colleagues, they don’t want to miss out, and there’s a certain pressure for us to be the ‘soldiers’ who carry on,” O’Rourke observes. “If we’re sick, we’re not doing anybody any favors by coming to work. I think the better part of valor is to stay home and take care of yourself. We can’t be good caregivers to others if we can’t care for ourselves.”
In a flu season that has been described in superlative terms (eg, Worst In Years), Massachusetts has perhaps been the poster child for just how widespread, virulent, and debilitating the virus has been. While the state reported a slight decline in flu activity in mid-January, Nancy O’Rourke, MSN, ACNP, ANP, RnC, FAANP, who practices in the ICU and urgent care/emergency department settings of Good Samaritan Medical Center in Brockton, says, “We’re still seeing a lot of people who are very, very ill.”
Her description of the situation in Massachusetts will be familiar to clinicians in many of the 48 states that have reported widespread flu activity: “Emergency departments across the state are still packed. For the past three or four weeks, our ICU has been at full capacity every single day, and so has every other hospital in Massachusetts. There are just no beds to be had anywhere.”
The CDC’s FluView (www.cdc.gov/flu/weekly) for the week ending January 19 paints a national picture of epidemic proportions. About 26% of specimens tested by reporting laboratories were positive for influenza. The proportion of reported deaths attributable to pneumonia and influenza (9.8%) was above the epidemic threshold. Eight pediatric deaths were reported (although not all occurred during that particular week; there have been 37 pediatric deaths reported since flu season began). The cumulative rate (from October 1, 2012, to January 19, 2013) of laboratory-confirmed influenza-associated hospitalizations was 22.2 per 100,000 population; almost half of cases involved adults 65 and older.
In Massachusetts alone, about 11,000 people have already tested positive for flu. And as O’Rourke points out, “Those are just the folks who have shown up and been tested. There may be many more who are at home, just weathering it.”
All in all, it would be an understatement to say it’s been a pretty bad year for the flu.
Is It Really the Flu?
The CDC data focus on confirmed cases of influenza. But as O’Rourke notes, there are individuals who may not seek care (or, ironically, do not feel well enough to do so), as well as those who present too late in the course of illness for a flu test.
The CDC, though, also reports an increase in outpatient visits for influenza-like illness, which is defined as a temperature of at least 100°F, cough, and/or sore throat. While this description focuses on quantifiable symptoms, it does little to convey the malaise caused by the flu. When lifting your hand to pick up a glass of water on the bedside table seems like an insurmountable task, or standing upright long enough to shower becomes an unnecessary extravagance, you know you’re sick!
One of the confounding factors of this flu season has been the confluence of circulating viruses and infections. Besides influenza (three strains, no less), there have been outbreaks of norovirus and cases of mononucleosis, as well as the usual assortment of upper respiratory infections.
The distinguishing feature of flu, clinicians in the field say, tends to be fever. “If a child comes in with a high fever—101°F to 103°F—that child is more likely to have flu,” says Patrick E. Killeen, MS, PA-C, who practices at Danbury Hospital in Connecticut and holds academic posts in the Yale University School of Medicine’s Department of Pediatrics and the Quinnipiac University School of Health Sciences. “Whereas with RSV [respiratory syncytial virus] or rhinovirus, they have very similar symptomatology and x-ray findings, but they don’t have the high fever.”
Killeen and his colleagues have also observed that “children with the flu are more likely to develop secondary bacterial pneumonias. They’ve been sick for three or four days, they come into the hospital, and then their chest x-rays are showing significant infiltrate and they have high white counts.”
In the outpatient setting, Christopher M. Barry, PA-C, says a good history and physical examination can provide a lot of information. He echoes Killeen’s assessment that a quick-onset, high fever is often the first sign. But looking further, “We tend to see a person who just looks really sick. They often have a lot of nasal discharge, and sometimes the eyes have almost a glassy appearance. That gives us a little bit of a clue as well.”
At Jeffers, Mann, and Artman Pediatric and Adolescent Medicine in North Carolina, where Barry practices, they are fortunate to have access to a rapid antigen detection flu test. “We get a result back usually within five to 10 minutes,” he says. “So if there’s a suspicion, we typically run the test.”
At the other end of the age spectrum, O’Rourke has noticed that elderly patients tend to minimize their symptoms (as a general rule; this is not specific to flu). Many are appearing at urgent care centers and emergency departments when they’re already very ill.
“A lot of them are coming in with viral pneumonia,” she reports. “It quickly develops in them. They come in and they’re short of breath, they have really bad oxygenation, and they require a day or two in the ICU.”
Another observation that O’Rourke has made, and which has been noted extensively in national news broadcasts, is that “it’s a lingering illness this year; people are sick for a week, two weeks. Even though they may start to feel better, they’re still washed out, coughing, with chest symptoms that they need to pay attention to.”
To Treat Or Not To Treat
In some areas of the country (including Boston, where a state of emergency was declared), practicing clinicians have been so overwhelmed with patients that some have abandoned flu testing and decide to initiate antiviral treatment without a validated diagnosis. As Killeen says, “If it looks like flu and acts like flu, then people are going to treat it with [oseltamivir].”
With older patients, O’Rourke says, “I’m going to err on the side of giving it to them as opposed to not, because they are so vulnerable. A lot of them have comorbid conditions, such as diabetes or COPD, which puts them at greater risk. Any folks with chronic illnesses—asthma, HIV—you want to be more aggressive with their management.”
However, there may be patients for whom the gastrointestinal side effects of the medication do not sufficiently outweigh the benefits of a slightly reduced course of flu. “In many situations—and especially if we haven’t started treatment within the first 48 hours—we don’t necessarily recommend using an antiviral medication,” says Barry. “Even if we’ve caught it within 48 hours, if the child is otherwise healthy with no major underlying heart or lung issues, often I’ll leave it up to the parents.”
Barry has also learned to emphasize what antiviral medication can and cannot do in discussions with patients and families. “We try to make parents aware that it’s not a magic bullet,” he says. “It won’t cure the flu, boom, right there on the spot.”
While Killeen also supports the appropriate use of antiviral medications, he notes that there are some patients for whom clinicians will want to be more cautious about prescribing them. “A sickle cell patient, for example—if that person comes in with the flu, you have to think about other encapsulated organisms, like pneumococcus, that could be potentially detrimental to the patient, pending their vaccination status,” he says.
Clinicians have to rely on their clinical judgment when they don’t have the time or resources to confirm a flu diagnosis with a test. “If a pediatric patient comes in with petechiae and fever, that tells me, ‘No, it’s probably not the flu; we should be thinking about something else going on,’” Killeen says by way of example. “But absent other contradictory physical exam findings, then I would say we would treat [with antivirals].”
A Word (Or Two) Of Advice
For clinicians who have seen no abatement of flu season, or whose regions were late starters, here is some advice from your colleagues:
• Get your flu shot if you haven’t already. “Its efficacy varies, but in healthy adults you’re getting between 60% and 80% immunity,” O’Rourke notes.
• Wash your hands. “The quick alcohol hand rubs are great, but in flu season, I love soap and water,” says O’Rourke.
• Protect yourself and your other patients. Wear a mask. Ask patients with suspected cases of flu to do the same. If possible, do what Barry and his colleagues do: “We have anybody who has flu-like symptoms come in a separate entrance to our office, so we don’t have them in our main waiting area.”
• Stay home if you’re sick. This isn’t quite the no-brainer it seems. “[Clinicians] will come to work when they’re deathly ill, because they don’t want to burden their colleagues, they don’t want to miss out, and there’s a certain pressure for us to be the ‘soldiers’ who carry on,” O’Rourke observes. “If we’re sick, we’re not doing anybody any favors by coming to work. I think the better part of valor is to stay home and take care of yourself. We can’t be good caregivers to others if we can’t care for ourselves.”
American Association of Nurse Practitioners: New Organization = One Voice
Assuming the ancient Mayans were wrong about that whole “end of the world” scenario, 2013 has dawned by the time you’re reading this. And a new year brings a new, unified voice for nurse practitioners: the American Association of Nurse Practitioners (AANP). But the leadership of the “new” organization—the result of a merger between the American Academy of Nurse Practitioners and the American College of Nurse Practitioners (ACNP)—hopes you won’t notice much of a change from its previous incarnations.
“NPs will see a new name, but they’ll see the same people from the two organizations still working very hard to assist them and focus on their practice,” says Angela K. Golden, DNP, FNP-C, FAANP, President of both the old and the new AANP. “Both organizations were member-focused, and that clearly will remain our guiding principle.”
“We are able, essentially, to join forces, combine the talent of both staff and members, and move forward with a renewed purpose toward advancing the cause of NPs,” says David Hebert, who served as CEO of ACNP and will retain that role within the new AANP. “Certainly, the profession will continue to vigorously advocate to practice fully within its scope, and we will continue to be very assertive on that front.”
HERE’S THE DEAL ...
On November 19, 2012, AANP and ACNP announced their plans to consolidate effective January 1, 2013. The new organization has approximately 40,000 members, making it the largest professional membership organization in the United States representing NPs of all specialties.
Golden will serve out the first year of her two-year term as President; then, at AANP’s annual meeting in Las Vegas this June, she will be joined by Co-President Kenneth P. Miller, PhD, RN, CFNP, FAAN, who was the President-Elect of ACNP. The executive committee of the new organization also includes Past President Penny Kaye Jensen, DNP, APRN, FNP-C, FAANP; Treasurer Joyce M. Knestrick, PhD, FNP, FAANP; Recording Secretary Cindy Cooke, MSN, FNP, NP-C, FAANP; and Members at Large Cathy R. Arvidson, PhD, FNP-BC, FAANP, and Cynthia J. Edwards-Tuttle, MSN, FNP, BC.
The boards of both AANP and ACNP obviously had to approve the merger, and a bylaw change was sent to the membership for a vote. Golden says the response from NPs, both members and nonmembers, has been “overwhelmingly positive.” In fact, the move has been applauded by those outside the profession as well.
“I recently had the opportunity to speak at a PA meeting,” Golden reports, “and they were all saying, ‘This is so exciting for NPs.’ So I think lots of organizations recognize the value of having one voice.”
During her term as President of AANP, Jensen was often asked by colleagues, NP students, and other stakeholders, “Why are there two organizations for NPs?”
“There was never a good explanation,” Jensen says. “The merger will provide unity in terms of our messages, goals, strategies, and resources. NPs must speak with a unified voice and encourage our health care system to embrace us fully as highly skilled, educated, and qualified.”
That’s the entire point of the merger: strengthening the voice of NPs on the national stage as well as within each state. The consensus is that this is an exciting moment for NPs, particularly in light of the Institute of Medicine’s Future of Nursing report and the impending implementation of aspects of the Patient Protection and Affordable Care Act (PPACA) that will result in an additional 32 million Americans having health insurance and needing access to health care providers. NPs have been working aggressively to improve and align state practice acts and update archaic language in laws that prevent them from practicing to the full extent of their education and training.
“It is more important than ever that NPs are involved in key discussions at both the state and national level,” Jensen says. “Two of the most important places to do this are the insurance exchange and medical home arenas. A presence in each of these venues will be critical to NP involvement in the future of health care in the nation.”
“This is just one more way that we can concentrate on getting ‘all hands on deck,’ getting everybody ready for NPs to come forward and be one of the primary providers of primary care,” says Golden. “There are other NP organizations that we will still, very clearly, collaborate with, but to have one organization representing all NPs shows solidarity.”
WHAT TO EXPECT
A strategic planning session will be held early this year, at which the board of AANP will outline its vision for 2013 and beyond. “At that point,” Hebert says, “we will have a discussion about utilization of resources, the creation of new services to be provided to the membership, and to really set forth what we plan to do for the future.”
In some ways, the mission of the new organization will simply be a continuation of the work that both AANP and ACNP were already doing. Of course, AANP provided full services to members and had established a research division, as well as education and continuing education components, while ACNP focused primarily on health policy and their own annual meeting. But Golden says the merger went smoothly in part because the two organizations had a similar focus to their policy initiatives.
“I think what [the merger] is really going to do is provide us with a stronger base to do the things that we were planning to do anyway,” she says. “Both organizations were looking at the home health and hospice issue and getting old laws updated across the United States, and helping our group members and our state affiliates to work on the language in their states so that there is full access to NPs for our patients.”
As much as things will remain the same, Hebert anticipates additions and improvements to what the new AANP can offer its members. “My sense is that once the board has its strategic planning session, members will see some new services,” he notes. There will also be a rebranding campaign to introduce the new “look” to the organization, which includes a new logo.
And there will be an opportunity for members to have their own voices heard by the organization. “I think we’re going to want to take some time to find out from the members what new services they want,” Hebert adds. (He sounds unfazed by how refreshing this concept is.) “The board and the staff will have ideas about what else we can do to improve member services, but we certainly want to reach out to the membership. You do your best to try and think of what a member wants, but nothing beats just talking to them.”
WORKING TOGETHER BENEFITS ALL
All parties agree that the merger was the right move at the right time. Golden knows from speaking with prior leaders of AANP that the conversation had often been started but never proceeded. Hebert acknowledges that both organizations had heard the question of “Why isn’t there one group for NPs?” before; after all, the nurse anesthetists and the nurse-midwives each have an umbrella group to represent them.
“I think sometimes things occur when they’re supposed to,” Golden says. “That sounds a bit metaphysical, but I think in this case, Jill Olmstead and Penny Kaye Jensen, who were the presidents of ACNP and AANP when this conversation began, both acknowledged how valuable this could be and got both boards involved in the discussion.”
In January 2012, Jensen, Olmstead, Hebert, ACNP Immediate Past President Janet Selway, DNSc, CRNP, and AANP Interim CEO Janice DeMartino met “to discuss the possibility of the two organizations working together to promote the NP profession and create a legislative agenda that would ensure NPs a seat at the table with the expected changes brought by the implementation of PPACA,” Jensen says.
That meeting was followed by additional discussions that eventually led to the merger proposal in July 2012. “Both boards were very thoughtful throughout the process and should be given credit for working diligently to make the merger a reality,” Jensen says.
She gives much of the credit to DeMartino, who she says “worked tirelessly to ensure AANP made the needed changes to ensure a bright future and was able to open doors that had never been opened in the past. She is a visionary, and I cannot thank her enough for serving as interim CEO for the past 13 months and working closely with the board to make the vision of a successful merger a reality.”
The consolidation process has already demonstrated that the leaders and staff of the two organizations can work together effectively and efficiently, to the benefit of all NPs. “We’ve been working very hard over the past six months, pending the formal ratification by both organizations, to make sure that if in fact [the merger] occurred, we would be ready to ensure a seamless transition,” Hebert says.
Golden describes the negotiation process as “pretty easy and painless,” as well as “collegial.” “We all just said, ‘This is our end goal; how do we get there?’ Both organizations had ideas, but they were pretty close together. We were both focused on members. It’s just like NPs focusing on patient care—when you keep your focus where it’s supposed to be, the details kind of come along.”
Golden laughs when it is suggested that NPs should forget about marching on Congress and instead take over the legislative body, acknowledging, “Maybe we could give them an example of how to work together.” More important to her is for all NPs to get involved to advance the cause and enhance their ability to provide quality patient care, because, as she says, “We can’t do it alone.”
“There is strength in numbers,” Jensen says. “The NP profession has gained visibility and momentum over the past two years. We are well positioned for the future, and I am ecstatic that we will now be able to relay our message to key stakeholders with one unified voice.”
Assuming the ancient Mayans were wrong about that whole “end of the world” scenario, 2013 has dawned by the time you’re reading this. And a new year brings a new, unified voice for nurse practitioners: the American Association of Nurse Practitioners (AANP). But the leadership of the “new” organization—the result of a merger between the American Academy of Nurse Practitioners and the American College of Nurse Practitioners (ACNP)—hopes you won’t notice much of a change from its previous incarnations.
“NPs will see a new name, but they’ll see the same people from the two organizations still working very hard to assist them and focus on their practice,” says Angela K. Golden, DNP, FNP-C, FAANP, President of both the old and the new AANP. “Both organizations were member-focused, and that clearly will remain our guiding principle.”
“We are able, essentially, to join forces, combine the talent of both staff and members, and move forward with a renewed purpose toward advancing the cause of NPs,” says David Hebert, who served as CEO of ACNP and will retain that role within the new AANP. “Certainly, the profession will continue to vigorously advocate to practice fully within its scope, and we will continue to be very assertive on that front.”
HERE’S THE DEAL ...
On November 19, 2012, AANP and ACNP announced their plans to consolidate effective January 1, 2013. The new organization has approximately 40,000 members, making it the largest professional membership organization in the United States representing NPs of all specialties.
Golden will serve out the first year of her two-year term as President; then, at AANP’s annual meeting in Las Vegas this June, she will be joined by Co-President Kenneth P. Miller, PhD, RN, CFNP, FAAN, who was the President-Elect of ACNP. The executive committee of the new organization also includes Past President Penny Kaye Jensen, DNP, APRN, FNP-C, FAANP; Treasurer Joyce M. Knestrick, PhD, FNP, FAANP; Recording Secretary Cindy Cooke, MSN, FNP, NP-C, FAANP; and Members at Large Cathy R. Arvidson, PhD, FNP-BC, FAANP, and Cynthia J. Edwards-Tuttle, MSN, FNP, BC.
The boards of both AANP and ACNP obviously had to approve the merger, and a bylaw change was sent to the membership for a vote. Golden says the response from NPs, both members and nonmembers, has been “overwhelmingly positive.” In fact, the move has been applauded by those outside the profession as well.
“I recently had the opportunity to speak at a PA meeting,” Golden reports, “and they were all saying, ‘This is so exciting for NPs.’ So I think lots of organizations recognize the value of having one voice.”
During her term as President of AANP, Jensen was often asked by colleagues, NP students, and other stakeholders, “Why are there two organizations for NPs?”
“There was never a good explanation,” Jensen says. “The merger will provide unity in terms of our messages, goals, strategies, and resources. NPs must speak with a unified voice and encourage our health care system to embrace us fully as highly skilled, educated, and qualified.”
That’s the entire point of the merger: strengthening the voice of NPs on the national stage as well as within each state. The consensus is that this is an exciting moment for NPs, particularly in light of the Institute of Medicine’s Future of Nursing report and the impending implementation of aspects of the Patient Protection and Affordable Care Act (PPACA) that will result in an additional 32 million Americans having health insurance and needing access to health care providers. NPs have been working aggressively to improve and align state practice acts and update archaic language in laws that prevent them from practicing to the full extent of their education and training.
“It is more important than ever that NPs are involved in key discussions at both the state and national level,” Jensen says. “Two of the most important places to do this are the insurance exchange and medical home arenas. A presence in each of these venues will be critical to NP involvement in the future of health care in the nation.”
“This is just one more way that we can concentrate on getting ‘all hands on deck,’ getting everybody ready for NPs to come forward and be one of the primary providers of primary care,” says Golden. “There are other NP organizations that we will still, very clearly, collaborate with, but to have one organization representing all NPs shows solidarity.”
WHAT TO EXPECT
A strategic planning session will be held early this year, at which the board of AANP will outline its vision for 2013 and beyond. “At that point,” Hebert says, “we will have a discussion about utilization of resources, the creation of new services to be provided to the membership, and to really set forth what we plan to do for the future.”
In some ways, the mission of the new organization will simply be a continuation of the work that both AANP and ACNP were already doing. Of course, AANP provided full services to members and had established a research division, as well as education and continuing education components, while ACNP focused primarily on health policy and their own annual meeting. But Golden says the merger went smoothly in part because the two organizations had a similar focus to their policy initiatives.
“I think what [the merger] is really going to do is provide us with a stronger base to do the things that we were planning to do anyway,” she says. “Both organizations were looking at the home health and hospice issue and getting old laws updated across the United States, and helping our group members and our state affiliates to work on the language in their states so that there is full access to NPs for our patients.”
As much as things will remain the same, Hebert anticipates additions and improvements to what the new AANP can offer its members. “My sense is that once the board has its strategic planning session, members will see some new services,” he notes. There will also be a rebranding campaign to introduce the new “look” to the organization, which includes a new logo.
And there will be an opportunity for members to have their own voices heard by the organization. “I think we’re going to want to take some time to find out from the members what new services they want,” Hebert adds. (He sounds unfazed by how refreshing this concept is.) “The board and the staff will have ideas about what else we can do to improve member services, but we certainly want to reach out to the membership. You do your best to try and think of what a member wants, but nothing beats just talking to them.”
WORKING TOGETHER BENEFITS ALL
All parties agree that the merger was the right move at the right time. Golden knows from speaking with prior leaders of AANP that the conversation had often been started but never proceeded. Hebert acknowledges that both organizations had heard the question of “Why isn’t there one group for NPs?” before; after all, the nurse anesthetists and the nurse-midwives each have an umbrella group to represent them.
“I think sometimes things occur when they’re supposed to,” Golden says. “That sounds a bit metaphysical, but I think in this case, Jill Olmstead and Penny Kaye Jensen, who were the presidents of ACNP and AANP when this conversation began, both acknowledged how valuable this could be and got both boards involved in the discussion.”
In January 2012, Jensen, Olmstead, Hebert, ACNP Immediate Past President Janet Selway, DNSc, CRNP, and AANP Interim CEO Janice DeMartino met “to discuss the possibility of the two organizations working together to promote the NP profession and create a legislative agenda that would ensure NPs a seat at the table with the expected changes brought by the implementation of PPACA,” Jensen says.
That meeting was followed by additional discussions that eventually led to the merger proposal in July 2012. “Both boards were very thoughtful throughout the process and should be given credit for working diligently to make the merger a reality,” Jensen says.
She gives much of the credit to DeMartino, who she says “worked tirelessly to ensure AANP made the needed changes to ensure a bright future and was able to open doors that had never been opened in the past. She is a visionary, and I cannot thank her enough for serving as interim CEO for the past 13 months and working closely with the board to make the vision of a successful merger a reality.”
The consolidation process has already demonstrated that the leaders and staff of the two organizations can work together effectively and efficiently, to the benefit of all NPs. “We’ve been working very hard over the past six months, pending the formal ratification by both organizations, to make sure that if in fact [the merger] occurred, we would be ready to ensure a seamless transition,” Hebert says.
Golden describes the negotiation process as “pretty easy and painless,” as well as “collegial.” “We all just said, ‘This is our end goal; how do we get there?’ Both organizations had ideas, but they were pretty close together. We were both focused on members. It’s just like NPs focusing on patient care—when you keep your focus where it’s supposed to be, the details kind of come along.”
Golden laughs when it is suggested that NPs should forget about marching on Congress and instead take over the legislative body, acknowledging, “Maybe we could give them an example of how to work together.” More important to her is for all NPs to get involved to advance the cause and enhance their ability to provide quality patient care, because, as she says, “We can’t do it alone.”
“There is strength in numbers,” Jensen says. “The NP profession has gained visibility and momentum over the past two years. We are well positioned for the future, and I am ecstatic that we will now be able to relay our message to key stakeholders with one unified voice.”
Assuming the ancient Mayans were wrong about that whole “end of the world” scenario, 2013 has dawned by the time you’re reading this. And a new year brings a new, unified voice for nurse practitioners: the American Association of Nurse Practitioners (AANP). But the leadership of the “new” organization—the result of a merger between the American Academy of Nurse Practitioners and the American College of Nurse Practitioners (ACNP)—hopes you won’t notice much of a change from its previous incarnations.
“NPs will see a new name, but they’ll see the same people from the two organizations still working very hard to assist them and focus on their practice,” says Angela K. Golden, DNP, FNP-C, FAANP, President of both the old and the new AANP. “Both organizations were member-focused, and that clearly will remain our guiding principle.”
“We are able, essentially, to join forces, combine the talent of both staff and members, and move forward with a renewed purpose toward advancing the cause of NPs,” says David Hebert, who served as CEO of ACNP and will retain that role within the new AANP. “Certainly, the profession will continue to vigorously advocate to practice fully within its scope, and we will continue to be very assertive on that front.”
HERE’S THE DEAL ...
On November 19, 2012, AANP and ACNP announced their plans to consolidate effective January 1, 2013. The new organization has approximately 40,000 members, making it the largest professional membership organization in the United States representing NPs of all specialties.
Golden will serve out the first year of her two-year term as President; then, at AANP’s annual meeting in Las Vegas this June, she will be joined by Co-President Kenneth P. Miller, PhD, RN, CFNP, FAAN, who was the President-Elect of ACNP. The executive committee of the new organization also includes Past President Penny Kaye Jensen, DNP, APRN, FNP-C, FAANP; Treasurer Joyce M. Knestrick, PhD, FNP, FAANP; Recording Secretary Cindy Cooke, MSN, FNP, NP-C, FAANP; and Members at Large Cathy R. Arvidson, PhD, FNP-BC, FAANP, and Cynthia J. Edwards-Tuttle, MSN, FNP, BC.
The boards of both AANP and ACNP obviously had to approve the merger, and a bylaw change was sent to the membership for a vote. Golden says the response from NPs, both members and nonmembers, has been “overwhelmingly positive.” In fact, the move has been applauded by those outside the profession as well.
“I recently had the opportunity to speak at a PA meeting,” Golden reports, “and they were all saying, ‘This is so exciting for NPs.’ So I think lots of organizations recognize the value of having one voice.”
During her term as President of AANP, Jensen was often asked by colleagues, NP students, and other stakeholders, “Why are there two organizations for NPs?”
“There was never a good explanation,” Jensen says. “The merger will provide unity in terms of our messages, goals, strategies, and resources. NPs must speak with a unified voice and encourage our health care system to embrace us fully as highly skilled, educated, and qualified.”
That’s the entire point of the merger: strengthening the voice of NPs on the national stage as well as within each state. The consensus is that this is an exciting moment for NPs, particularly in light of the Institute of Medicine’s Future of Nursing report and the impending implementation of aspects of the Patient Protection and Affordable Care Act (PPACA) that will result in an additional 32 million Americans having health insurance and needing access to health care providers. NPs have been working aggressively to improve and align state practice acts and update archaic language in laws that prevent them from practicing to the full extent of their education and training.
“It is more important than ever that NPs are involved in key discussions at both the state and national level,” Jensen says. “Two of the most important places to do this are the insurance exchange and medical home arenas. A presence in each of these venues will be critical to NP involvement in the future of health care in the nation.”
“This is just one more way that we can concentrate on getting ‘all hands on deck,’ getting everybody ready for NPs to come forward and be one of the primary providers of primary care,” says Golden. “There are other NP organizations that we will still, very clearly, collaborate with, but to have one organization representing all NPs shows solidarity.”
WHAT TO EXPECT
A strategic planning session will be held early this year, at which the board of AANP will outline its vision for 2013 and beyond. “At that point,” Hebert says, “we will have a discussion about utilization of resources, the creation of new services to be provided to the membership, and to really set forth what we plan to do for the future.”
In some ways, the mission of the new organization will simply be a continuation of the work that both AANP and ACNP were already doing. Of course, AANP provided full services to members and had established a research division, as well as education and continuing education components, while ACNP focused primarily on health policy and their own annual meeting. But Golden says the merger went smoothly in part because the two organizations had a similar focus to their policy initiatives.
“I think what [the merger] is really going to do is provide us with a stronger base to do the things that we were planning to do anyway,” she says. “Both organizations were looking at the home health and hospice issue and getting old laws updated across the United States, and helping our group members and our state affiliates to work on the language in their states so that there is full access to NPs for our patients.”
As much as things will remain the same, Hebert anticipates additions and improvements to what the new AANP can offer its members. “My sense is that once the board has its strategic planning session, members will see some new services,” he notes. There will also be a rebranding campaign to introduce the new “look” to the organization, which includes a new logo.
And there will be an opportunity for members to have their own voices heard by the organization. “I think we’re going to want to take some time to find out from the members what new services they want,” Hebert adds. (He sounds unfazed by how refreshing this concept is.) “The board and the staff will have ideas about what else we can do to improve member services, but we certainly want to reach out to the membership. You do your best to try and think of what a member wants, but nothing beats just talking to them.”
WORKING TOGETHER BENEFITS ALL
All parties agree that the merger was the right move at the right time. Golden knows from speaking with prior leaders of AANP that the conversation had often been started but never proceeded. Hebert acknowledges that both organizations had heard the question of “Why isn’t there one group for NPs?” before; after all, the nurse anesthetists and the nurse-midwives each have an umbrella group to represent them.
“I think sometimes things occur when they’re supposed to,” Golden says. “That sounds a bit metaphysical, but I think in this case, Jill Olmstead and Penny Kaye Jensen, who were the presidents of ACNP and AANP when this conversation began, both acknowledged how valuable this could be and got both boards involved in the discussion.”
In January 2012, Jensen, Olmstead, Hebert, ACNP Immediate Past President Janet Selway, DNSc, CRNP, and AANP Interim CEO Janice DeMartino met “to discuss the possibility of the two organizations working together to promote the NP profession and create a legislative agenda that would ensure NPs a seat at the table with the expected changes brought by the implementation of PPACA,” Jensen says.
That meeting was followed by additional discussions that eventually led to the merger proposal in July 2012. “Both boards were very thoughtful throughout the process and should be given credit for working diligently to make the merger a reality,” Jensen says.
She gives much of the credit to DeMartino, who she says “worked tirelessly to ensure AANP made the needed changes to ensure a bright future and was able to open doors that had never been opened in the past. She is a visionary, and I cannot thank her enough for serving as interim CEO for the past 13 months and working closely with the board to make the vision of a successful merger a reality.”
The consolidation process has already demonstrated that the leaders and staff of the two organizations can work together effectively and efficiently, to the benefit of all NPs. “We’ve been working very hard over the past six months, pending the formal ratification by both organizations, to make sure that if in fact [the merger] occurred, we would be ready to ensure a seamless transition,” Hebert says.
Golden describes the negotiation process as “pretty easy and painless,” as well as “collegial.” “We all just said, ‘This is our end goal; how do we get there?’ Both organizations had ideas, but they were pretty close together. We were both focused on members. It’s just like NPs focusing on patient care—when you keep your focus where it’s supposed to be, the details kind of come along.”
Golden laughs when it is suggested that NPs should forget about marching on Congress and instead take over the legislative body, acknowledging, “Maybe we could give them an example of how to work together.” More important to her is for all NPs to get involved to advance the cause and enhance their ability to provide quality patient care, because, as she says, “We can’t do it alone.”
“There is strength in numbers,” Jensen says. “The NP profession has gained visibility and momentum over the past two years. We are well positioned for the future, and I am ecstatic that we will now be able to relay our message to key stakeholders with one unified voice.”