Aging HIV/AIDS patients pose challenges for providers

For infectious-disease specialist Dr. Nicholas Van Sickels, treating HIV in his older patients requires him to know much more than how to keep white blood cell counts high. In addition to managing HIV medications, a typical visit may include prescribing blood pressure medication to control patients' hypertension, or putting them on a statin to lower cholesterol.

“We're having to get better at chronic diseases because our population is living longer and aging,” said Van Sickels, an assistant professor of clinical medicine at Tulane University. “It forces me and other (infectious-disease) physicians to be up-to-date on hypertension guidelines, cholesterol guidelines and on diabetes-management guidelines.”

Medical advances in anti-retroviral drug therapy and increased access to specialized care have extended the lives of many people living with the virus. But this longevity also has brought new health challenges not widely considered during the early days of the HIV epidemic.

Older patients with HIV face higher rates of cardiovascular disease, diabetes, hypertension, impaired cognitive function, cancer, frailty and behavioral health disorders than those of the same age without HIV—and thus higher costs.

Such conditions also appear to affect HIV patients at an earlier age compared with the general population.

A study published last year in the Journal of ClinicoEconomics and Outcomes Research found that HIV patients between ages 41 and 50 had higher rates of bone fracture and renal failure than HIV-negative people over age 60.

“We have no real track record with this,” said Dr. Stephen Boswell, CEO of Boston-based community health center Fenway Health, which serves the city's lesbian, gay, bisexual and transgender population. “HIV patients in their 60s, 70s and 80s are something new, so we have to study it and put a system in place to really look for things that we might not expect.”

The complexities of providing care are compounded by the projected increase in the number of older HIV patients. Of the estimated 1.3 million people living with HIV in the U.S. in 2010, half are expected to be age 50 and older by 2015, according to the Centers for Disease Control and Prevention. As many as 50,000 new HIV cases are diagnosed in the U.S. each year.

“We are learning as we go along,” said Daliah Mehdi, chief clinical officer at the AIDS Foundation of Chicago. “We don't have the body of research around treating and living with HIV in older adults that we do in younger adults.”

The wide-ranging medical and social needs facing the aging population living with HIV/AIDS were the driver behind a project that has provided the first set of clinical treatment strategies for managing older HIV patients.

Started in 2011, the HIV and Aging Consensus Project is a joint collaboration between the American Academy of HIV Medicine, the American Geriatrics Society and the AIDS Community Research Initiative of America. It was designed to offer guidance for providers serving the first generation of HIV patients who have lived with the disease beyond the age of 50.

“Older patients often have multiple things going on, and you need to have kind of a holistic approach to taking care of them and not just focus on the HIV alone,” said Dr. Jonathan Appelbaum, a professor of internal medicine at Florida State University, who served as co-principal investigator of the treatment recommendations. “The average clinician perhaps may not be aware of some of the issues about treating older (HIV) patients. We're trying to make them more aware that it is in fact a special population.”

In the 1980s and '90s, the focus was primarily on treating aggressive infections when they arose and providing palliative care during a patient's final days.

In 1996, the highly active antiretroviral therapy, or HAART, was introduced, a breakthrough that had an immediate impact. By 1997, HAART had transformed HIV/AIDS from a disease that was a leading cause of death among adults ages 25 to 44 to a more manageable chronic disease. The rate of mortality fell from its 1995 peak of 16.2 deaths per 100,000 people to 2.6 deaths by 2010, according to the CDC. There was a transition in treatment to approaching HIV/AIDS as a chronic disease that can be managed for years if not decades.

Historically, HIV research and clinical trials of drug therapies have focused on younger adults because of the need to reduce confounding co-morbidity factors in evaluating therapies, Mehdi said. “When you combine that with our society's invisibility of older adults, they've just been systematically excluded from research,” she said.

HIV drug treatment alone remains expensive, costing between $2,000 and $5,000 a month, with annual costs associated with healthcare utilization for such patients of about $23,000, according to the CDC. A lifetime of HIV treatment is estimated to cost more than $367,000 per patient.

Covering the costs of this care is a challenge. Nationally, as many as 70% of older HIV patients live alone and many are on Medicaid, said Stephen Karpiak, senior director for research and evaluation for the AIDS Community Research Initiative of America. Such economic instability has led to nearly half of those patients not receiving regular HIV care.

In 2012, Medicaid spent $5.3 billion on HIV care, with 36% of that federal spending going to treating the disease, according to the Kaiser Family Foundation. Medicare spent $5.9 billion, accounting for 39%. States spent $4.3 billion. Financial support for HIV patients available through the Ryan White Care Act is limited in scope; services such as the federally funded AIDS Drug Assistance Program, which pays for medications, often cover patients only when their white cell counts have dropped very low.

The exact reason why chronic diseases are so prevalent among older HIV patients is not known for sure. One leading theory has to do with the way the virus causes inflammatory responses, making patients more susceptible to various health conditions.

Another potential factor could be HIV treatment itself, whose effects on the body after several decades of drug therapy remain unclear.

“Even on good antiretroviral therapy, it's hard on the body to have HIV infection for decades,” said Dr. Wayne McCormick, president of the American Geriatric Society and a professor of medicine at the University of Washington. “Most people now in their 50s with HIV have had HIV for a couple of decades and been on powerful drugs for that long.”

It also takes close monitoring of all of the drugs patients are taking for their non-HIV related health conditions to make sure they don't negatively impact the effectiveness of their antiretroviral medications.

While HIV specialists have improved in delivering the kind of care normally provided by primary-care physicians, Van Sickels thinks more could be done to provide clinical guidance on the best ways to manage chronic disease for those living with HIV. “Right now, the guidelines are lacking,” he said.

Those who have lived with HIV for decades are now being joined by a growing number of older Americans who are newly diagnosed, as well as those who are newly infected. That increase is due in part to denial and ignorance about HIV and sex.

“Neither older individuals nor their physicians often think of HIV quite the same way younger individuals do,” said Dr. Amy Justice, a professor of medicine at Yale University. “Even older individuals with identified risk factors like men who have sex with men will often say, 'I just didn't think it would happen to me—that happened to younger gay men.' ”

Aging with HIV can take a heavy emotional and financial toll on older patients. “Many didn't really prepare or plan to have an older life experience,” said Hugh Cole, a substance-abuse counselor at Howard Brown Health Center in Chicago, a comprehensive-care facility for the city's LGBT community.

Older HIV patients also may feel isolated because of the stigma associated with HIV that remains in some parts of American society, and they may not seek specialized HIV care.

“That works against people maintaining good health,” Mehdi said. “If you don't feel like it's safe for you or comfortable for you to be open about your HIV diagnosis, which many people don't, then you're not going to feel comfortable walking into a clinic that is known to specialize in HIV care.”

This can be a particular problem in more rural parts of the country. While Howard Brown and other health centers provide older HIV patients with a medical and social safety net in urban settings, some rural areas in the South suffer high rates of HIV cases but lack ready access to specialized care and services.

“It's more an issue of getting people to come to us because they're afraid of whom they might see when they're in the waiting room,” said Deborah Konkle-Parker, associate professor of nursing and a nurse practitioner in the infectious disease clinic at the University of Mississippi Medical Center in Jackson.

UM's infectious-disease clinic serves about 1,800 HIV patients from Jackson and the surrounding area. It's one of the few facilities in that area where residents can seek specialized treatment. About 40% of the clients treated at the UM clinic are lower-income and uninsured. That means the clinic staff must address economic issues such as providing transportation to and from appointments.

Case managers link HIV clients to governmental social services, while a support group composed of HIV patients has been established to provide a sense of community.

But Konkle-Parker said negative community attitudes toward HIV have discouraged the clinic from publicizing its services because of the potential backlash clients may get.

“We don't want to really emphasize that when you come to this clinic, it's to get HIV care,” she said. “We don't want to make it more difficult for people to walk into our clinic.”

Follow Steven Ross Johnson on Twitter: @MHsjohnson