Reality Check: The LGBT Community Must Look at the Changing Face of AIDS
By Daniel Tietz, Marjorie Hill, PhD. and Michael Adams
As Americans with HIV age, and as the high rates of HIV infection in older Americans become apparent, new problems are emerging. Medical providers often treat older adults as essentially asexual beings, underestimating their desire for and level of sexual activity. Thus, they assume that older adults are at low risk of the disease, failing to advise them on HIV protection. Consequently, because of this very stereotype, many sexually active adults over 50 do not see themselves as being at risk for HIV or other sexually transmitted infections (STIs), thinking that HIV is a young person's disease. Accordingly, they may believe they are free to engage in high-risk sexual behavior without consequences.
As for older adults already living with the disease, they find themselves at the intersection of a wide range of factors that are dangerous to their health. In a study, "Research on Older Adults with HIV" ("ROAH"), which the AIDS Community Research Initiative of America (ACRIA) conducted with 1,000 older New Yorkers with HIV, participants told us that they experienced high levels of stigma. Only 46 percent had told all their family members of their HIV status, and the sample was five times more likely to experience symptoms of depression than the general population. That stigma, and the fear it generates, has consequences; many, to avoid rejection, may choose not to disclose their HIV status to sexual partners or require using a condom.
And few of these older adults have to deal with HIV alone; aging with HIV often involves the early onset of a number of other illnesses, including heart, liver, and kidney disease. On average, ROAH participants bore the burden -- and, often, medical costs -- of three other illnesses along with HIV. Finally, many of these adults are at the intersection of issues that restrict their access to medical care; besides "AIDS-phobia," homophobia, racism, ageism, sexism, and poverty all erect high barriers to getting the services these adults need.
Yet despite these facts, older adults largely remain a neglected group when it comes to HIV prevention and treatment. ACRIA, together with Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) and Gay Men's Health Crisis (GMHC), are working to change this. Over the past two years, we have met with various officials throughout the U.S. Department of Health and Human Services to discuss the importance of funding interventions and reforming policies to better address an aging population with and at-risk for HIV. We have also met with congressional leaders to discuss the Older Americans Act to ensure that older adults with and at-risk for HIV are included in the definition of "vulnerable populations" in Administration on Aging programs.
In addition, ACRIA has developed and implemented a strategy closely tied to the White House's National HIV/AIDS Strategy (NHAS). For prevention, the NHAS calls, in part, for both intensifying HIV prevention strategies in the communities where HIV is concentrated and educating all Americans about the threat posed by HIV. Accordingly, ACRIA launched a campaign featuring the images of older adults, accompanied by the blunt slogan, "Have sex? Age is not a condom." The NHAS also calls for targeted efforts to prevent HIV infection using evidence-based approaches. To accomplish that amongst older adults, we must better understand this population. Our strategy calls on the NIH to make HIV and aging one of its top research priorities.
Moreover, we have heeded the NHAS' call for more diversity in clinical care and services for those living with HIV, by advocating that the CDC, HHS, and other agencies develop better training materials and programs, such as those offered by ACRIA or those being developed through SAGE's National Resource Center on LGBT Aging.
ACRIA and SAGE are also working to improve the lives of older adults living with HIV through research and education. For example, ACRIA joined an expert panel from across the U.S. to craft the first-ever recommended treatment strategies for older adults with HIV. This report can be viewed at aahivm.org/hivandagingforum. Last year, SAGE joined Kathy Greenlee, Assistant Secretary for Aging at HHS, and others for the webinar, "Positive Aging: HIV Turns 30," focused on educating the aging network across the U.S. about HIV prevention and treatment specific to older adults. And in fall 2010, ACRIA, SAGE and GMHC helped organize the first-ever White House meeting on HIV and aging, which featured experts from around the country.
Our next step: This July, at the International AIDS Conference in Washington, D.C., ACRIA, SAGE and GMHC, together with several international partners, will host a satellite conference on HIV and aging, sponsored by MAC AIDS Fund. At this conference, we will address this as the global issue that it is, not just as an American one. Scientists, activists, and policy makers from all over the world -- including Dr. Kevin Fenton, Director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) -- will speak, as will a panel of older adults with HIV. With the help of all our partners, we are working toward a day when HIV is universally recognized as a disease that impacts older adults, and that any approach toward HIV prevention, research, and treatment can and must account for this reality.
Daniel Tietz, R.N., J.D., is the Executive Director of the AIDS Community Research Initiative of America (ACRIA).
Marjorie Hill, Ph.D., is the CEO of Gay Men's Health Crisis (GMHC).
Michael Adams is the Executive Director of Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE).
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