Two decades ago, living to reach “old age

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.

Groundbreaking Survey
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.”