Two decades ago, living to reach "old age" was not considered a likely prognosis for people with HIV. But with the tremendous success of better and more well-tolerated HIV drug therapies, people with the virus are living longer.
Dr. Stephen Karpiak, associate director of research at the New York-based AIDS Community Research Initiative of America, said that more than half the population with HIV is over 40, and one-third of those in that pool are age 50 or over.
"We have data that tell us that there will be large numbers of seniors living with HIV and AIDS, but we also see the incidence of infection growing in this older population — this is a huge concern," he said, adding that few, if any, preparations were made to address the future health and social service needs of this population.
The process of aging brings its own challenges — how will aging affect people who are HIV positive, many of whom have taken antiretroviral therapies for more than a decade?
"Up to now, there has been no comprehensive research that investigated HIV and older adults," Karpiak said. This uncharted territory and his goal to "identify a public health problem before it happens," became the basis for the landmark ACRIA study, "Research on Older Adults with HIV."
Karpiak said the primary purpose of the study was to find out "just who is the older adult with HIV? What is their background? How do they take care of themselves? Where do they get care? Who are in their networks? How do they feel about themselves? In other words, who are they?"
He said a thorough understanding of this current population's status was the necessary link to bringing recommendations to the research, social service and public health policy sectors addressing the needs of this marginalized population.
"The results of (the ROAH study) are enormous and present an alarming picture of the challenges facing HIV-positive people over age 50 as they age over the next decades," Karpiak said.
The ROAH study is a landmark undertaking both for its size — 1,000 participants — and its 11 components (sets of questions) in six primary areas: demographic profile, health status, sexual behaviors, social networks, stigma and psychological resources. Twenty-one academics, physicians and social scientists oversaw the project, self-funded by ACRIA; the questionnaire and methodology were reviewed by Copernicus, an independent review board, to ensure ethical treatment of its participants.
With their longstanding research relationships in the New York City area — more than 100 AIDS service organizations, regional hospitals and clinics — Karpiak said ACRIA "was uniquely positioned to collect comprehensive data on the largest sample ever of people who are over 50 and are HIV positive."
Because of ACRIA's extensive community presence, its outreach and word of mouth within the HIV/AIDS population drew a pool of volunteers representing a diverse and rich cross section of the population from more than 25 study locations across the New York City region. People who were HIV positive, age 50 or older, could participate. Volunteers had an average age of 55.5 years and more than half were between 50-55, said Mark Brennan, senior research scientist at ACRIA.
For several months, these volunteers filled out questionnaires at the study sites or at ACRIA. "The survey covered a lot of ground," Brennan said, "and the over-600 data points for each person were mostly yes/no or multiple-choice questions, but there were some open-ended items as well."
It turned out that the education level of the volunteers was "similar to the general population of New York City," Brennan said, with more than half graduating from high school and nearly one-fourth having some college, while 13 percent were college graduates and a few had a graduate degree.
Brennan said 264 women, 640 men and 10 transgender persons participated in the study with the majority of people (83 percent) having been born in the U.S. Half identified themselves as black, a third Latino and about 14 percent white. The remaining 4 percent identified themselves as Asian/Pacific Islander, American Indian or multi-ethnic.
The data found that the older adults in this study have been living with HIV an average of 13 years, ranging from three months to 26 years since diagnosis. The majority of people rated their overall health as "fairly good," another indicator, Brennan said, of the successful drug therapies of the last decade.
"The majority were not working and were either on disability, retired or not employed," he said, adding that more than half described their income as "just enough to get by," and nearly one-fourth said they "do not have enough to make ends meet."
Karpiak said these findings reinforce his and other experts' belief that "it's important to realize for older people with HIV/AIDS, living well and aging successfully is more than just taking pills."
Behavior and Risk Factors
"We also asked about incarceration and substance abuse as these are important factors in virus transmission," Karpiak said. "There is much evidence of increased rate of infection when people are incarcerated."
He said that nearly half of the male participants and slightly more than a third of the female respondents had, at some point in their lives, been incarcerated. More than half of the respondents reported abusing alcohol or illicit substances and were now in a recovery program, but a third of the people still engaged in substance abuse that included use of crack, heroin, cocaine or marijuana.
"While sharing needles is a mode of transmission for HIV, non-needle substance abuse is also a high risk and potentially dangerous behavior," Brennan explained. "People under the influence — whether it's drugs or alcohol — may engage in unsafe sex practices and increase their risk of exposure."
Karpiak said that of all the 11 components studied, the questions on sexual behavior are the most revealing, and one of the key findings on this population to date.
"This is the first study ever conducted to assess the sexual behaviors of an older population that is living with HIV," he said. "In our sample," which he explained represents the current HIV epidemiology in the U.S., "less than one person in four identifies as gay or lesbian (21 percent and 3 percent respectively) and 9 percent as bisexual."
Karpiak cited the respondents reported sexual activity from the previous three months of study participation: "Half of the subjects reported having no sex, and of those that did, 83 percent reported having oral sex, 60 percent vaginal sex and 39 percent anal sex."
"This report on sexual behavior is a significant finding," he said. "Where this virus was once almost exclusively transmitted by male-to-male contact, we now see heterosexual sex as the primary mode of transmission."
Living in Isolation
To date, there has been no research to investigate what happens to people with HIV as they age and experience typical age-related conditions such as depression, arthritis, hepatitis, neuropathy or hypertension. Nearly all the study volunteers said they had at least one other chronic condition in addition to HIV, and more than three-fourths said they had two or more.
Brennan said those are important statistics as "many of the medications commonly prescribed for these ailments taken by older people can make depression worse."
With almost 70 percent of the respondents reporting they live alone - and as a group, scoring fairly high on both the loneliness and feeling-stigmatized evaluations — it is not surprising that the psychological well-being of this population is challenged on a daily basis. Many reported limited access to transportation services and little or declining contact with friends and family.
Breaking New Ground
ACRIA investigators said the results of the study provide a critical mass of evidence needed to press policymakers for further research, and to determine how to optimize delivery of medical and social services. Investigators conclude that older people with HIV/AIDS do not currently have the family and community support that they need now, and especially as they age. These older people experience feelings of isolation, which are largely due to the persistence of stigma — in many cases they also face racism and age discrimination.
"Successful aging is about having the networks in place," Karpiak said. "What we see happening in HIV is symptomatic of the larger population in general, in health care."
He emphasized, "How we see ourselves and how others see us as a people, and as a nation, is how well we take care of our older people — that goes for those both older adults with HIV and other older members of our community."