Greg Sanchez has taken HIV medications since the 1980s. But each time his body becomes resistant to one, he must switch to another. Now, with no new medications available, his only option is to take part in a clinical trial—a prospect he finds scary and, even more so, isolating. "I just wish I had somebody to relate to," he said.
The lack of support services for older adults living with HIV/AIDS was a prominent topic during a March 22 panel discussion on HIV and aging, held at the Alphawood Gallery in conjunction with the Art AIDS America Chicago exhibition. The panel—which Jacqueline Boyd, founder of Chicago-based health-services agency The Care Plan, moderated—featured Sanchez and five other members of Chicago's HIV/AIDS, LGBT and healthcare communities. ( In addition, the Chicago Gay Men's Chorus performed. )
"There's a lot of non-visibility around the HIV/AIDS issue," said Sanchez. He said he knows of only two local support groups for long-term survivors, one of which he leads. "It feels like there's this … disconnect now." He senses that disconnect particularly from members of younger generations, many of whom he feels do not understand the experiences of those who lived through the height of the AIDS epidemic.
Panel members said this intergenerational divide needs to be addressed. "I … think there are a lot of spaces that provide opportunity for older generations and younger generations to … engage one another," said Brenikki R. Floyd, Ph.D., MPH, a research specialist at the University of Illinois at Chicago. She believes opportunities for this engagement exist in service settings that already serve both older and younger individuals.
Several panel members said many younger individuals lack seriousness in dealing with HIV/AIDS. "You have to take this [diagnosis] seriously," said Brenda Simmons, an outreach specialist at Chicago Women's AIDS Project. Whereas in the past an HIV diagnosis was a major concern for patients, Simmons said she sees many newly diagnosed patients who miss doctor appointments or fall behind on their medications.
She acknowledged that today's youth face other challenges, including finding housing and obtaining sufficient incomes—challenges that have become more pronounced as funding for those resources disappears. Still, she believes that "health care should be taken a little bit more seriously" by younger individuals.
Intergenerational conversations—and health education, generally—are important for maintaining HIV/AIDS awareness, especially as the virus becomes resistant to new medications, said panel members. Panelist Thomas Hunter, LCSW, a medical case-management supervisor and senior-care specialist at Chicago House, said he has overseen cases of young HIV-positive patients who fail to take their medications and then become resistant to them, sometimes leading to avoidable deaths.
By the same token, patients who adhere to their treatment regimens—including taking medications regularly—can reap the benefits. Hunter has been HIV-positive for over 15 years. He said his doctor told him, "'You're probably going to end up dying of something else, not HIV.'" Indeed, several panel members observed that for many older HIV-positive adults, HIV is less of a concern than other chronic diseases, such as diabetes and high blood pressure, that often accompany aging.
Still, they said, the possibility of living longer is accompanied by stigma surrounding HIV/AIDS, and older patients need adequate social support services to live happily. One way to obtain these services, the panelists agreed, is to advocate for them, including voting and calling on legislators.
"The long and short of it is … we're going to have to do things for ourselves," said HIV activist Roy Ferguson. "We have to hear our voices."
