Primary Care Takes on Greater Role in HIV/AIDS

Thirty years after the first U.S. reports of pneumocystis pneumonia, a harbinger of the onslaught of the human immunodeficiency virus (HIV), primary care physicians find themselves again at the front lines of caring for patients with HIV/AIDS.

Like the illness itself, which has gone from a certain death sentence to a chronic disease, primary care practices evolved from first providing simple ministrations to the mostly untreatable to grappling with the specialized care needed for patients with active infectious disease, and the drug toxicities that go with their regimens. Now, HIV/AIDS care has entered a different phase over the past decade or so, in which physicians need both specialized knowledge and basic primary care skills. They must simultaneously address patients’ complications from living longer with the disease, along with their psychosocial issues and age-related comorbidities.

Photo credit: Cynthia Goldsmith, CDC

"For the first 15 years, we focused on helping people die," said Dr. Michael Saag, professor of medicine at the University of Alabama at Birmingham (UAB). "For the next 15 years, we’ve focused on helping people live – that’s a remarkable transition."

Dr. Saag said that primary care physicians who care for patients with HIV/AIDS can make an even bigger mark over the next 10-15 years. How? By showing that the care model they’ve been using perfectly demonstrates the power of the medical home.

Primary care physicians can, and should, be at the helm of HIV/AIDS care, agreed Dr. Peter Selwyn, chair of the department of family and social medicine at the Montefiore Medical Center and Albert Einstein College of Medicine, New York.

In HIV/AIDS care, "I’ve seen it start in primary care, then gravitate away, and then gravitate back," Dr. Selwyn said in an interview.

But workforce issues are a problem. Many of the primary care doctors who specialize in HIV/AIDS care now are readying for retirement. Meanwhile, some 50,000 Americans are infected each year, and the number living with the disease continues to rise. That ensures a growing patient population – unless prevention strategies, another challenge, gain more success.

And there are other hurdles, including early diagnosis and ensuring the continuation of funding under the Ryan White CARE Act, the 1990 law that has kept many HIV programs afloat.

Thirty years ago ... and today. According to the Centers for Disease Control and Prevention, the transmission of HIV in the United States has declined by 89% since the 1980s – the peak of the epidemic. With the advent of the first antiretroviral drug, AZT (zidovudine), in 1987, the number of people living with HIV/AIDS began to grow, while the number who died of it declined.

Still, today, there are 56,000 new cases a year, and some 18,000 people die annually, according to the CDC. As it was 30 years ago, men who have sex with men still make up the bulk of those infected (53%) and living with HIV/AIDS (48%). It is also the only group at risk in which new infections continue to increase.

More than a million people are living with HIV, but at least 20% don’t even know they are infected, according to the CDC.

Initially, the epidemic was concentrated in major cities on the two coasts. Now, infections are hitting Southern cities harder, and disproportionately affecting minorities. CDC data show that Miami; Jacksonville; Orlando; New Orleans; Baton Rouge, La.; Baltimore; Washington; Columbia, S.C.; Atlanta; San Juan, P.R.; and Jackson, Miss. have a high incidence of HIV. New York City and San Francisco remain epicenters.

African Americans make up only 14% of the U.S. population, but account for 46% of people living with HIV and 45% of new infections. Latinos make up 16% of the American population, but account for 18% of people living with HIV and 17% of new infections.

Patients also have a much lower socioeconomic status than they did in the past, said Dr. Donna E. Sweet, professor of internal medicine at the University of Kansas, Wichita. In her own practice, 50% of the patients are still men having sex with men, but they are less educated and less affluent, she said in an interview.

"It’s a financially and socioeconomically disenfranchised group of people compared to 20 years ago," she said.

The number of infected women in her practice also has increased. A decade or more ago, less than 10% of her patients were women. Now it’s closer to 26%; most have contracted HIV through unprotected vaginal sex, Dr. Sweet said.

At Southwest Boulevard Family Health Care Services of Greater Kansas City, the epidemic has continued to grow in the largely poor and minority population it serves, said Dr. Sharon Lee, a cofounder and CEO of the nonprofit clinic.

Of the 800-some patients with HIV, about a third are women, said Dr. Lee, professor of medicine in the department of family medicine at the University of Kansas. The women are acquiring the virus through sexual contact. Men having sex with men still make up the largest proportion of patients, and the majority are still white males, but minorities are disproportionately affected, she said in an interview.

Spiraling back around. While many primary care physicians found themselves treating HIV/AIDS patients at the dawn of the epidemic, that changed.

By the early 2000s, many primary care physicians didn’t feel as comfortable caring for HIV/AIDS patients because the field had become so specialized, Dr. Selwyn said.

But in the past 10 years, with HIV becoming a manageable chronic disease in this country, it is "not different in its acuity and time course from other chronic diseases that primary care doctors are used to taking care of," he said.

Dr. Lee said she became known for her specialization and often received referrals from other physicians for HIV care because the drug regimens were so complicated. But now, it makes more sense for HIV/AIDS patients to get care from a family physician or internist, she said. Primary care physicians have specific training to manage chronic diseases like diabetes, hypertension, and hypercholesterolemia, all of which are hitting HIV/AIDS patients hard.

"All of those things are things we are very well trained to care for. In fact, we are better trained than those specialists trained in infectious diseases," Dr. Lee said. The evolutionary path of HIV/AIDS care resembles "a pendulum of sorts, but more like a spiral – it’s spiraling back to primary care but it’s at a different level."

Dr. Sweet said that she’s been speaking around the country to physicians and administrators at community health centers and federally qualified health centers, urging them to funnel their HIV/AIDS patients into primary care. "It’s better to have one primary care physician than a dozen specialists," she tells them.

Building new capacity. Spreading the expertise is gaining urgency because many primary care doctors who focus on HIV/AIDS care are ready to retire. Many of these physicians belong to the HIV Medical Association or the American Academy of HIV Medicine; a majority of those members are within 10-15 years of retirement, said Dr. Selwyn, who has served on the HIVMA board of directors.

Dr. Lee, who currently serves on that board of directors, said that the organization has been seeking ways to increase training of primary care physicians in HIV/AIDS. The University of Kansas Medical Center is hoping to start an HIV medicine residency, she said.

The Albert Einstein College of Medicine has an active teaching program for family practice and internal medicine residents in HIV care and HIV primary care, Dr. Selwyn added.

Physicians and professional societies also are pushing the medical home concept as a viable model for offering lower-cost, high-quality HIV/AIDS care.

The Ryan White CARE Act, named after a teenage boy who died of AIDS in 1990, has become the main support for the AIDS-related medical home, according to Dr. Saag. The program is administered by the Health Resources and Services Administration (HRSA), a division of the Department of Health and Human Services. HRSA awards federal funds that are then used to deliver care and pay for medications. According to HRSA, the Ryan White HIV/AIDS Program is currently funded at $2.1 billion.

Funding via the Ryan White CARE Act led to the creation of multispecialty HIV clinics that deliver care through teams of providers. The clinics offer comprehensive care – from primary care to case management to counseling, social services, substance abuse treatment, palliative care, and pharmacy consultation.

The original model has evolved to helping people live, but "the overall effectiveness is just superb," said Dr. Saag, who says he believes he has data to prove the claim.

He and his colleagues studied the costs and reimbursement of caring for HIV/AIDS patients at the UAB clinic in 2006 (Clin. Infect. Dis. 2006;42:1003-10). Costs ranged from $13,885 per patient per year for those with early infection to $36,532 for those with more advanced disease. Three-quarters of the reimbursement was for medications, regardless of disease stage. Only 2% of the clinic’s actual costs for care was reimbursed. The study concluded that most HIV clinics would not survive without Ryan White CARE Act funds, as they make up a large amount of unreimbursed costs.

In a separate calculation, which has yet to be published, but was part of an editorial supporting the medical home published in the AIDS Reader, Dr. Saag estimated that it costs the UAB clinic about $2,700 per patient per year to offer a medical home.

It is his argument that it would be more efficient – and result in better-quality care – to take a portion of the money going to reimburse medications and instead direct it to primary care and the medical home.

"There’s a lot of money wasted in this field now," said Dr. Saag. "We just need to realign where that money is going."

Thirty years after the first U.S. reports of pneumocystis pneumonia, a harbinger of the onslaught of the human immunodeficiency virus (HIV), primary care physicians find themselves again at the front lines of caring for patients with HIV/AIDS.

Like the illness itself, which has gone from a certain death sentence to a chronic disease, primary care practices evolved from first providing simple ministrations to the mostly untreatable to grappling with the specialized care needed for patients with active infectious disease, and the drug toxicities that go with their regimens. Now, HIV/AIDS care has entered a different phase over the past decade or so, in which physicians need both specialized knowledge and basic primary care skills. They must simultaneously address patients’ complications from living longer with the disease, along with their psychosocial issues and age-related comorbidities.

Photo credit: Cynthia Goldsmith, CDC

"For the first 15 years, we focused on helping people die," said Dr. Michael Saag, professor of medicine at the University of Alabama at Birmingham (UAB). "For the next 15 years, we’ve focused on helping people live – that’s a remarkable transition."

Dr. Saag said that primary care physicians who care for patients with HIV/AIDS can make an even bigger mark over the next 10-15 years. How? By showing that the care model they’ve been using perfectly demonstrates the power of the medical home.

Primary care physicians can, and should, be at the helm of HIV/AIDS care, agreed Dr. Peter Selwyn, chair of the department of family and social medicine at the Montefiore Medical Center and Albert Einstein College of Medicine, New York.

In HIV/AIDS care, "I’ve seen it start in primary care, then gravitate away, and then gravitate back," Dr. Selwyn said in an interview.

But workforce issues are a problem. Many of the primary care doctors who specialize in HIV/AIDS care now are readying for retirement. Meanwhile, some 50,000 Americans are infected each year, and the number living with the disease continues to rise. That ensures a growing patient population – unless prevention strategies, another challenge, gain more success.

And there are other hurdles, including early diagnosis and ensuring the continuation of funding under the Ryan White CARE Act, the 1990 law that has kept many HIV programs afloat.

Thirty years ago ... and today. According to the Centers for Disease Control and Prevention, the transmission of HIV in the United States has declined by 89% since the 1980s – the peak of the epidemic. With the advent of the first antiretroviral drug, AZT (zidovudine), in 1987, the number of people living with HIV/AIDS began to grow, while the number who died of it declined.

Still, today, there are 56,000 new cases a year, and some 18,000 people die annually, according to the CDC. As it was 30 years ago, men who have sex with men still make up the bulk of those infected (53%) and living with HIV/AIDS (48%). It is also the only group at risk in which new infections continue to increase.

More than a million people are living with HIV, but at least 20% don’t even know they are infected, according to the CDC.

Initially, the epidemic was concentrated in major cities on the two coasts. Now, infections are hitting Southern cities harder, and disproportionately affecting minorities. CDC data show that Miami; Jacksonville; Orlando; New Orleans; Baton Rouge, La.; Baltimore; Washington; Columbia, S.C.; Atlanta; San Juan, P.R.; and Jackson, Miss. have a high incidence of HIV. New York City and San Francisco remain epicenters.

African Americans make up only 14% of the U.S. population, but account for 46% of people living with HIV and 45% of new infections. Latinos make up 16% of the American population, but account for 18% of people living with HIV and 17% of new infections.

Patients also have a much lower socioeconomic status than they did in the past, said Dr. Donna E. Sweet, professor of internal medicine at the University of Kansas, Wichita. In her own practice, 50% of the patients are still men having sex with men, but they are less educated and less affluent, she said in an interview.

"It’s a financially and socioeconomically disenfranchised group of people compared to 20 years ago," she said.

The number of infected women in her practice also has increased. A decade or more ago, less than 10% of her patients were women. Now it’s closer to 26%; most have contracted HIV through unprotected vaginal sex, Dr. Sweet said.

At Southwest Boulevard Family Health Care Services of Greater Kansas City, the epidemic has continued to grow in the largely poor and minority population it serves, said Dr. Sharon Lee, a cofounder and CEO of the nonprofit clinic.

Of the 800-some patients with HIV, about a third are women, said Dr. Lee, professor of medicine in the department of family medicine at the University of Kansas. The women are acquiring the virus through sexual contact. Men having sex with men still make up the largest proportion of patients, and the majority are still white males, but minorities are disproportionately affected, she said in an interview.

Spiraling back around. While many primary care physicians found themselves treating HIV/AIDS patients at the dawn of the epidemic, that changed.

By the early 2000s, many primary care physicians didn’t feel as comfortable caring for HIV/AIDS patients because the field had become so specialized, Dr. Selwyn said.

But in the past 10 years, with HIV becoming a manageable chronic disease in this country, it is "not different in its acuity and time course from other chronic diseases that primary care doctors are used to taking care of," he said.

Dr. Lee said she became known for her specialization and often received referrals from other physicians for HIV care because the drug regimens were so complicated. But now, it makes more sense for HIV/AIDS patients to get care from a family physician or internist, she said. Primary care physicians have specific training to manage chronic diseases like diabetes, hypertension, and hypercholesterolemia, all of which are hitting HIV/AIDS patients hard.

"All of those things are things we are very well trained to care for. In fact, we are better trained than those specialists trained in infectious diseases," Dr. Lee said. The evolutionary path of HIV/AIDS care resembles "a pendulum of sorts, but more like a spiral – it’s spiraling back to primary care but it’s at a different level."

Dr. Sweet said that she’s been speaking around the country to physicians and administrators at community health centers and federally qualified health centers, urging them to funnel their HIV/AIDS patients into primary care. "It’s better to have one primary care physician than a dozen specialists," she tells them.

Building new capacity. Spreading the expertise is gaining urgency because many primary care doctors who focus on HIV/AIDS care are ready to retire. Many of these physicians belong to the HIV Medical Association or the American Academy of HIV Medicine; a majority of those members are within 10-15 years of retirement, said Dr. Selwyn, who has served on the HIVMA board of directors.

Dr. Lee, who currently serves on that board of directors, said that the organization has been seeking ways to increase training of primary care physicians in HIV/AIDS. The University of Kansas Medical Center is hoping to start an HIV medicine residency, she said.

The Albert Einstein College of Medicine has an active teaching program for family practice and internal medicine residents in HIV care and HIV primary care, Dr. Selwyn added.

Physicians and professional societies also are pushing the medical home concept as a viable model for offering lower-cost, high-quality HIV/AIDS care.

The Ryan White CARE Act, named after a teenage boy who died of AIDS in 1990, has become the main support for the AIDS-related medical home, according to Dr. Saag. The program is administered by the Health Resources and Services Administration (HRSA), a division of the Department of Health and Human Services. HRSA awards federal funds that are then used to deliver care and pay for medications. According to HRSA, the Ryan White HIV/AIDS Program is currently funded at $2.1 billion.

Funding via the Ryan White CARE Act led to the creation of multispecialty HIV clinics that deliver care through teams of providers. The clinics offer comprehensive care – from primary care to case management to counseling, social services, substance abuse treatment, palliative care, and pharmacy consultation.

The original model has evolved to helping people live, but "the overall effectiveness is just superb," said Dr. Saag, who says he believes he has data to prove the claim.

He and his colleagues studied the costs and reimbursement of caring for HIV/AIDS patients at the UAB clinic in 2006 (Clin. Infect. Dis. 2006;42:1003-10). Costs ranged from $13,885 per patient per year for those with early infection to $36,532 for those with more advanced disease. Three-quarters of the reimbursement was for medications, regardless of disease stage. Only 2% of the clinic’s actual costs for care was reimbursed. The study concluded that most HIV clinics would not survive without Ryan White CARE Act funds, as they make up a large amount of unreimbursed costs.

In a separate calculation, which has yet to be published, but was part of an editorial supporting the medical home published in the AIDS Reader, Dr. Saag estimated that it costs the UAB clinic about $2,700 per patient per year to offer a medical home.

It is his argument that it would be more efficient – and result in better-quality care – to take a portion of the money going to reimburse medications and instead direct it to primary care and the medical home.

"There’s a lot of money wasted in this field now," said Dr. Saag. "We just need to realign where that money is going."

Thirty years after the first U.S. reports of pneumocystis pneumonia, a harbinger of the onslaught of the human immunodeficiency virus (HIV), primary care physicians find themselves again at the front lines of caring for patients with HIV/AIDS.

Like the illness itself, which has gone from a certain death sentence to a chronic disease, primary care practices evolved from first providing simple ministrations to the mostly untreatable to grappling with the specialized care needed for patients with active infectious disease, and the drug toxicities that go with their regimens. Now, HIV/AIDS care has entered a different phase over the past decade or so, in which physicians need both specialized knowledge and basic primary care skills. They must simultaneously address patients’ complications from living longer with the disease, along with their psychosocial issues and age-related comorbidities.

Photo credit: Cynthia Goldsmith, CDC

"For the first 15 years, we focused on helping people die," said Dr. Michael Saag, professor of medicine at the University of Alabama at Birmingham (UAB). "For the next 15 years, we’ve focused on helping people live – that’s a remarkable transition."

Dr. Saag said that primary care physicians who care for patients with HIV/AIDS can make an even bigger mark over the next 10-15 years. How? By showing that the care model they’ve been using perfectly demonstrates the power of the medical home.

Primary care physicians can, and should, be at the helm of HIV/AIDS care, agreed Dr. Peter Selwyn, chair of the department of family and social medicine at the Montefiore Medical Center and Albert Einstein College of Medicine, New York.

In HIV/AIDS care, "I’ve seen it start in primary care, then gravitate away, and then gravitate back," Dr. Selwyn said in an interview.

But workforce issues are a problem. Many of the primary care doctors who specialize in HIV/AIDS care now are readying for retirement. Meanwhile, some 50,000 Americans are infected each year, and the number living with the disease continues to rise. That ensures a growing patient population – unless prevention strategies, another challenge, gain more success.

And there are other hurdles, including early diagnosis and ensuring the continuation of funding under the Ryan White CARE Act, the 1990 law that has kept many HIV programs afloat.

Thirty years ago ... and today. According to the Centers for Disease Control and Prevention, the transmission of HIV in the United States has declined by 89% since the 1980s – the peak of the epidemic. With the advent of the first antiretroviral drug, AZT (zidovudine), in 1987, the number of people living with HIV/AIDS began to grow, while the number who died of it declined.

Still, today, there are 56,000 new cases a year, and some 18,000 people die annually, according to the CDC. As it was 30 years ago, men who have sex with men still make up the bulk of those infected (53%) and living with HIV/AIDS (48%). It is also the only group at risk in which new infections continue to increase.

More than a million people are living with HIV, but at least 20% don’t even know they are infected, according to the CDC.

Initially, the epidemic was concentrated in major cities on the two coasts. Now, infections are hitting Southern cities harder, and disproportionately affecting minorities. CDC data show that Miami; Jacksonville; Orlando; New Orleans; Baton Rouge, La.; Baltimore; Washington; Columbia, S.C.; Atlanta; San Juan, P.R.; and Jackson, Miss. have a high incidence of HIV. New York City and San Francisco remain epicenters.

African Americans make up only 14% of the U.S. population, but account for 46% of people living with HIV and 45% of new infections. Latinos make up 16% of the American population, but account for 18% of people living with HIV and 17% of new infections.

Patients also have a much lower socioeconomic status than they did in the past, said Dr. Donna E. Sweet, professor of internal medicine at the University of Kansas, Wichita. In her own practice, 50% of the patients are still men having sex with men, but they are less educated and less affluent, she said in an interview.

"It’s a financially and socioeconomically disenfranchised group of people compared to 20 years ago," she said.

The number of infected women in her practice also has increased. A decade or more ago, less than 10% of her patients were women. Now it’s closer to 26%; most have contracted HIV through unprotected vaginal sex, Dr. Sweet said.

At Southwest Boulevard Family Health Care Services of Greater Kansas City, the epidemic has continued to grow in the largely poor and minority population it serves, said Dr. Sharon Lee, a cofounder and CEO of the nonprofit clinic.

Of the 800-some patients with HIV, about a third are women, said Dr. Lee, professor of medicine in the department of family medicine at the University of Kansas. The women are acquiring the virus through sexual contact. Men having sex with men still make up the largest proportion of patients, and the majority are still white males, but minorities are disproportionately affected, she said in an interview.

Spiraling back around. While many primary care physicians found themselves treating HIV/AIDS patients at the dawn of the epidemic, that changed.

By the early 2000s, many primary care physicians didn’t feel as comfortable caring for HIV/AIDS patients because the field had become so specialized, Dr. Selwyn said.

But in the past 10 years, with HIV becoming a manageable chronic disease in this country, it is "not different in its acuity and time course from other chronic diseases that primary care doctors are used to taking care of," he said.

Dr. Lee said she became known for her specialization and often received referrals from other physicians for HIV care because the drug regimens were so complicated. But now, it makes more sense for HIV/AIDS patients to get care from a family physician or internist, she said. Primary care physicians have specific training to manage chronic diseases like diabetes, hypertension, and hypercholesterolemia, all of which are hitting HIV/AIDS patients hard.

"All of those things are things we are very well trained to care for. In fact, we are better trained than those specialists trained in infectious diseases," Dr. Lee said. The evolutionary path of HIV/AIDS care resembles "a pendulum of sorts, but more like a spiral – it’s spiraling back to primary care but it’s at a different level."

Dr. Sweet said that she’s been speaking around the country to physicians and administrators at community health centers and federally qualified health centers, urging them to funnel their HIV/AIDS patients into primary care. "It’s better to have one primary care physician than a dozen specialists," she tells them.

Building new capacity. Spreading the expertise is gaining urgency because many primary care doctors who focus on HIV/AIDS care are ready to retire. Many of these physicians belong to the HIV Medical Association or the American Academy of HIV Medicine; a majority of those members are within 10-15 years of retirement, said Dr. Selwyn, who has served on the HIVMA board of directors.

Dr. Lee, who currently serves on that board of directors, said that the organization has been seeking ways to increase training of primary care physicians in HIV/AIDS. The University of Kansas Medical Center is hoping to start an HIV medicine residency, she said.

The Albert Einstein College of Medicine has an active teaching program for family practice and internal medicine residents in HIV care and HIV primary care, Dr. Selwyn added.

Physicians and professional societies also are pushing the medical home concept as a viable model for offering lower-cost, high-quality HIV/AIDS care.

The Ryan White CARE Act, named after a teenage boy who died of AIDS in 1990, has become the main support for the AIDS-related medical home, according to Dr. Saag. The program is administered by the Health Resources and Services Administration (HRSA), a division of the Department of Health and Human Services. HRSA awards federal funds that are then used to deliver care and pay for medications. According to HRSA, the Ryan White HIV/AIDS Program is currently funded at $2.1 billion.

Funding via the Ryan White CARE Act led to the creation of multispecialty HIV clinics that deliver care through teams of providers. The clinics offer comprehensive care – from primary care to case management to counseling, social services, substance abuse treatment, palliative care, and pharmacy consultation.

The original model has evolved to helping people live, but "the overall effectiveness is just superb," said Dr. Saag, who says he believes he has data to prove the claim.

He and his colleagues studied the costs and reimbursement of caring for HIV/AIDS patients at the UAB clinic in 2006 (Clin. Infect. Dis. 2006;42:1003-10). Costs ranged from $13,885 per patient per year for those with early infection to $36,532 for those with more advanced disease. Three-quarters of the reimbursement was for medications, regardless of disease stage. Only 2% of the clinic’s actual costs for care was reimbursed. The study concluded that most HIV clinics would not survive without Ryan White CARE Act funds, as they make up a large amount of unreimbursed costs.

In a separate calculation, which has yet to be published, but was part of an editorial supporting the medical home published in the AIDS Reader, Dr. Saag estimated that it costs the UAB clinic about $2,700 per patient per year to offer a medical home.

It is his argument that it would be more efficient – and result in better-quality care – to take a portion of the money going to reimburse medications and instead direct it to primary care and the medical home.

"There’s a lot of money wasted in this field now," said Dr. Saag. "We just need to realign where that money is going."