Black or white, gay or straight, the face that most Americans imagine when they think about HIV/AIDS isn’t particularly wrinkled. Yet approximately one quarter of the people living with HIV in 2005 were 50 or older, and studies project that by 2015 more than half of all people living with HIV in the US will be over 50.1
The aging of HIV/AIDS reflects the merging of two different populations. People with HIV are living longer thanks to advances in medical treatment like the development of highly active antiretroviral therapies (HAART). At the same time, some people over 50 continue to engage in high-risk behaviors that result in new infections. Many older adults don’t know how to protect themselves from HIV—or even that they can be at risk—in part because few health education materials have prioritized their unique experiences and concerns.2
This lack of attention to the prevention needs of older adults is just one indicator of the health care community’s collective assumptions about who is and is not at risk for HIV. (Note: Since the early days of the epidemic the term “older adults” has consistently been used to describe people aged 50 and older.) Few training programs for providers have addressed the aging of the epidemic.
Surrounded by sanitized, asexual depictions of older people in our popular culture, many providers don’t think to conduct thorough sexual and substance use risk assessments when collecting medical histories from patients over 50. As a result, some of the possible indicators of HIV infection—including muscle and joint pain, night sweats, and extreme fatigue—may be written off as simply a part of “getting old.” This oversight can have serious implications for patients: detected early enough, an HIV diagnosis can be the first step in managing a chronic infectious disease rather than the “death sentence” it once was, while delays in testing, diagnosis, and care can result in significantly worse health outcomes. And as older people with AIDS become less able to live independently, few assisted living and nursing facilities are equipped and staffed to adequately address their needs.
A surge in research on HIV and aging is illuminating critical gaps in knowledge and services and precipitating important changes in the field. Much of the earlier work on the graying of AIDS targeted specific cross-sections of the population or particular behaviors, like condom use; while these studies improved certain aspects of our understanding of aging with the disease, the daily realities of people over 50 living with HIV have been, until recently, largely unexplored.
In 2006, ACRIA (AIDS Community Research Initiative of America) published the initial results of the groundbreaking ROAH study (Research on Older Adults with HIV). Working with a broad network of researchers, health care providers, and AIDS service organizations, ACRIA collected data from a demographically diverse cross-section of 1,000 people over 50 living with HIV in New York City, providing valuable new information about what it means to age with the virus. That same year, documentary photographer Katja Heinemann created a series of portraits and oral histories in which older Americans shared their experiences of aging with the disease. Her photographs and interviews, in conjunction with this valuable new research, are the inspiration for The Graying of AIDS, a three-pronged campaign designed to increase sensitivity and awareness about the issues confronting people over 50 at risk for, or living with, HIV and AIDS.
In addition to this web site, a companion magazine aims to educate health care and social service professionals about this aging epidemic while connecting people over 50 and those who care about them with basic information, terminology, and resources. Despite decades of public health campaigns, myths about HIV/AIDS persist and have serious implications for people at risk for or living with the virus, so baseline information has been provided to address some of these concerns while simultaneously acknowledging some of the unique challenges that confront HIV-positive people as they grow older.
As the epidemic enters its fourth decade, we must refocus some of our resources and efforts to address shifting demographics, rethink our prevention education strategies to avoid new infections, and revise approaches to service provision to ensure early diagnosis and consistent access to comprehensive, sensitive, and coordinated health care and social services.
Most of the people profiled in this project were diagnosed as HIV-positive early in the evolution of antiretroviral medications, and their stories reflect the realities of long-term survivors who have lived through those changes. While a “positive” diagnosis today brings many challenges, medical treatment has become significantly less complicated and unpleasant. In many ways, aging with HIV today is much like aging without HIV, although there are some critical medical and sociological differences. We are grateful to those who shared their stories and insights with the project for helping us understand these differences and similarities, and for their generosity, candor, and humor.
Interviews have been edited for length but reflect the word choices and speech patterns of the individuals profiled.