STOKING FIRE: Thanks to HART, AIDS has Become a Chronic Condition, Not a Life Threatening One


Once upon a time, in the not-so-distant past, people diagnosed with HIV or AIDS believed that their lives were going to be cut short. Not so today. In fact, thanks to HART, Highly Active Retroviral Therapy, AIDS has become a chronic, rather than life threatening, condition.

The implications of this are staggering. According to the AIDS Community Research Initiative of America, a 22-year-old public health advocacy group, by 2015 half of all people with HIV in the United States will be age 50 or older. Yes, half, up from 17 percent in 2001 and 27 percent in 2007.

Katja Heinemann, a Brooklyn-based photo-journalist, learned about this trend—she later began calling it the graying of AIDS—in 2005 when ACRIA launched a study of 1000 middle-aged and elderly New Yorkers living with the virus. Called ROAH—short for Research on Older Adults with HIV—the survey highlighted the impact of the growing crisis among America’s elders.

Heinemann, 44, does not consider herself an activist. At the same time, she has long been drawn to social issues. In fact, she had been visiting Camp Heartland [now called One Heartland], a Milwaukee summer program for HIV-positive children since 1999 and had interviewed and photographed dozens of kids there. Time Magazine published her first article on HIV and AIDS, a human-interest piece about the camp, in 2002. Other projects, all of them using photo-journalism to illustrate what it was like to have the virus, followed.

Then, in late 2005 or early 2006, shortly after ACRIA released the ROAH report, Time Magazine gave Heinemann the go-ahead to create a photo essay about older Americans with HIV and AIDS. “At that point the mainstream media had not covered the topic,” Heinemann recalls. “In August of 2006 the story ran and was very successful. People responded to it because they had not heard about this demographic having AIDS before.”

“A few years later,” Heinemann continues, “I started applying for funding to make The Graying of AIDS into a web presence.“  A small start-up grant from the Open Society Institute allowed Heinemann to create a website that is now used by people with AIDS and their caregivers as well as medical providers, community health educators, advocates, and organizers. The Project has also crafted a traveling exhibition—candid photos and audio interviews—that can be shipped to conferences and forums anywhere in the world.

And the goal? Heinemann cites three: To increase awareness of the magnitude of the ongoing epidemic; to enhance public understanding of who is at risk; and to up-end assumptions about sexuality and aging.

Public health expert Naomi Schegloff, 43, has been co-director of The Graying of AIDS since 2010. “HIV represents everything we don’t talk about as a culture,” she says. “It hits race, class, gender, sexual preference, death, and fear of death.”

What’s more, she adds, as increasing numbers of older people contract the virus, it spotlights the existence of persistent and blatant ageism. “Adults become invisible as they age,” she says. “Their sexuality in particular becomes increasingly belittled and ignored. We’re trying to promote awareness that there are older adults who are living with HIV or who may become HIV positive because they are sexually active. A while back we met a guy who told us that he thought one of the central problems in doing the necessary outreach is that nobody wants to think that their parents are having sex. Even doctors assume that they don’t need to ask older patients sexual-health related questions, take a complete sexual history, or test them for HIV. As a result older adults tend to get tested and diagnosed later than they should. They then have worse health outcomes.”

Educating seniors about protecting themselves is high on The Graying of AIDS’ agenda. Indeed, since many older adults forgo using condoms once pregnancy is no longer an issue, the rate of HIV infection among post-menopausal women has skyrocketed. This, say Heinemann and Schegloff, can be directly linked to age-related vaginal thinness that allows the spread of all types of sexually transmitted infections.

Not surprisingly, in NYC—the so-called national HIV/AIDS epicenter—women over the age of 50 accounted for 22 percent of newly diagnosed infections in 2008. The stories of these women, and of their male age mates, are compelling, and their accounts on The Graying of AIDS website are both sobering and inspiring.

There’s Robert Brewster, age 75, who reminds us that “it’s all about living. It’s about trying to experience as much of life’s beauty that I can experience in the next… in the rest of my life.”

Sixty-four-year-old Anna Fowlkes is less sanguine and seems embarrassed to disclose her naiveté to Heinemann. “I was uneducated,” she begins. “My generation used condoms as a means of contraception, not to prevent disease. We are of a generation where that was not something we had to think about. We didn’t consider that there were diseases that could literally kill you, that you could get by not protecting yourself.”

Other interviews run the gamut—and introduce people who are sassy, heartbreaking, and everything in between. Likewise, the range of topics they address is broad—from the pain of being shunned as a pariah, to anger, guilt, and fear.

Heinemann and Schegloff are proud of these interviews and the photos that accompany them. Nonetheless, both consider The Graying of AIDS to be a work in progress and are eager to reach as many HIV-positive elders as they can and capture their experiences on tape.

That said, the fact that the Project is a barely-funded labor of love limits them to working on it in their spare time, as volunteers. “We’re not just a public health project, or an arts or new media project so it’s been hard to get grants,” Schegloff shrugs. “We’re not in a well-defined niche. And as much as we care about people with HIV/AIDS and want to hear their stories, what we’ve been doing is not sustainable in the long term. We need money.”

For a fleeting second both women look and sound defeated, but they quickly perk up as Schegloff makes a final point. “There is not much out there about what it means to age with HIV,” she concludes. “The people we’re interviewing are pioneers, and we can learn from their lives and experiences. It’s not just that listening to them is the right thing to do. These interviews can benefit the people who are behind them, who will likely have better access to medications and interventions and who will likely be living with HIV far into the future.”

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