Ironically, as it approaches its 30th anniversary, AIDS is an emaciated version of its earlier self. Whereas it was once a matter of weeks or months between diagnosis and death, AIDS and the Human Immunodeficiency Virus that leads to it are now widely considered chronic illnesses that can be managed with medications.
But HIV/AIDS still lives, still thrives — in the 1.1 million Americans living with HIV, and the more than 33 million people fighting the disease worldwide — and it remains one of the most insidious diseases when untreated.
“Certainly, the way that many people in the U.S. are looking at HIV has changed over time, and we have to be honest, the epidemic itself really has changed,” said Richard Wolitski, deputy director of behavioral and social science at CDC. “This is a different epidemic than earlier, but we have to recognize that it’s still a major public health threat for this country.
“I think a lot of people don’t realize the magnitude of the crisis that we’re still facing today, particularly among men who have sex with men,” Wolitski added. “I don’t think that anybody could have imagined when the first five cases of AIDS were reported in 1981 by CDC that we’d be dealing with a worldwide epidemic, 30 years later, that’s taken the lives of more than 600,000 people in this country alone.”
A plague and a new beginning
Jeff Graham has spent most of his adult life at war against HIV/AIDS, first as a member of ACT UP, then at the former AIDS Survival Project and now as executive director of Georgia Equality. However, when he first heard about the illness almost three decades ago, Graham didn’t think it was relevant to him.
“To be honest, it didn’t have a huge impact at the time because when I was 17 or 18 years old hearing about this disease that affected men in their thirties, it seemed so remote to me,” Graham said.
Graham was not alone in distancing himself from the new disease. Mainstream media largely ignored the plague. Led by President Ronald Reagan, who didn’t say the word “AIDS” publicly until almost six years into the epidemic — after the disease killed more than 25,000 Americans — the federal government devoted scant resources to investigate what was obliterating a generation of gay men.
The only attention HIV/AIDS received from outside of the gay community and a cluster of researchers was hostile and condemning. Gay Americans were “fighting a life or death battle and not having a whole lot of allies who were willing to stand with us,” said Graham, who, like most gay men of his era, was soon conscripted into the war against AIDS.
“It had just a devastating impact on the community, and certainly for anyone that lived through the ‘80s, I think that the scars of that time is something that all of us will carry with us for the rest of our lives,” Graham said. “Just a tremendous sense of loss.”
Pitted against one of the most enigmatic and lethal viruses in history, the gay community proved itself loaded with admirable warriors. In between attending weekly funerals and sitting bedside to their dying friends and lovers, LGBT people waged a relentless campaign to draw attention to their suffering.
They created care networks and community clinics to treat the ill. They turned dances and drag shows into fundraisers to supply the young movement with its only resources. They established a new cultural norm where condom use was a non-negotiable key to survival.
They pressured government officials and scientists to invest in research and demanded the media stop ignoring their plight, and in the process laid the foundation for the patient advocacy that is now used for everything from breast cancer to Parkinson’s disease.
AIDS also radically altered the gay rights movement itself. The organizing and fundraising required to fight the disease provided structure to a previously scattered effort for LGBT rights, and the momentum gained during the ‘80s turned the LGBT community into a legitimate political constituency during the 1990s and today.
However, the epidemic’s true impact on the course of gay rights will forever be unknown.
“So many of the leaders who were gay men in their twenties, and thirties and forties — an entire generation of seasoned, experienced leaders — died,” Graham said. “We have never been able to benefit from where their experience, their energy, their commitment to LGBT rights may have taken us if they had in fact lived.”
Positives and negatives
As Graham’s friends and colleagues continued to die with agonizing frequency in 1994, he finally received hope while working at AIDS Survival Project. A board member returned from a research meeting where scientists were so encouraged by the early results of a new class of drugs —protease inhibitors — they asked the Food & Drug Administration to fast-track testing.
“The theory was that protease inhibitors could be used in combination with other existing medications and that it would put a real dent in HIV’s ability to hurt people’s immune system,” Graham recalled. “He felt in the near future people would begin to lead relatively normal lives, and of course all of that came to pass.”
The arrival of protease inhibitors and other Highly Active Anti-Retroviral Therapy drugs was deemed a miracle moment when announced at the International AIDS Conference in 1996.
However, the history of HIV/AIDS has been a story of positives and negatives, and nearly every breakthrough has been partnered with setback. Various HAART medications have worked so effectively that HIV/AIDS is no longer the crisis it once was, especially for those who never experienced its unchecked wrath.
“There’s a new generation of Americans who need to be reached, and they’re coming from a very different place,” said Wolitksi from the CDC. “Today’s young people have never known a time without effective HIV treatment, and we’re asking them to act against a threat that, for some of them, seems remote, but the reality is that it still is a very real threat.”
More than one-third of new HIV infections occur in people under age 30, according to the most recent CDC data. The demographic that was first publicly impacted by HIV/AIDS continues to bear the weight of the epidemic, with gay and bisexual men accounting for more than half of new HIV cases in the U.S. each year.
“We’re seeing the numbers of HIV infection continue to increase among [gay and bisexual men], and in fact, [it is] the only risk group that we’re seeing increases in infections,” Wolitski said. “This is particularly concerning at this point in time because we’re now seeing that the number of new HIV infections among men who have sex with men are higher than the ones we saw at the end of the 1980s.”
The advances in medicine were accompanied by a deliberate effort to “de-gay” HIV/AIDS education so that other at-risk populations would understand their vulnerability, and to establish that gay people were more than an illness. This made the disease an afterthought among many in the community that was most affected.
In response to alarming CDC data, in 2009 Georgia Equality created the Georgia HIV Advocacy Network, which lobbies for access to medicine and prevention. Still, it’s difficult to snap the complacency that comes with miracles.
“I don’t know that the movement will ever look exactly the same as it did in the era of ACT UP and the early days of the epidemic,” Graham said. “Thank goodness, we no longer have the urgency of our friends dying around us. If you’re going to a memorial service every other week or several times a month, it’s a constant reminder to you that something needs to be done.”
A political disease
The lull in public awareness of HIV/AIDS comes as public health resources are waning.
“Flat is the new increase in our environment,” said Tracy Elliott, executive director of AID Atlanta. “If we can maintain the programs we have, we’re very fortunate, and we’re working hard to do that as opposed to looking at growing our capacity. It’s just not a time where capacity growth is very realistic.”
AIDS Drug Assistant Programs, which provide HAART medications to people who cannot afford them, are withering amid eagerness to cut social services from state and federal budgets. In Georgia, more than 1,500 people are on a waiting list to begin receiving drugs.
The drugs now available to people living with HIV are vastly more effective and convenient than their predecessors — sometimes a single, once-a-day pill replacing a laborious drug cocktail that caused severe side effects. There is also significant buzz about the research into microbicide gels that could prevent HIV transmission in women, and the ability of gay men to avoid infection by taking anti-HIV drugs prior to being exposed to the disease. Research to find an HIV vaccine also continues, including here at Emory University and the AIDS Research Consortium of Atlanta.
But even if a cure for HIV/AIDS were discovered tomorrow, “we will need advocacy and community pressure to close that gap between what’s possible through technology and medical advancement, and the barriers that funding and politics play,” Graham said.
“It’s far too easy for people to say, ‘Well, in this day and age, if there’s a gay man who tests positive for HIV, he knew how to protect himself,’” Graham added. “Without access to comprehensive sex ed, without access to condoms, without the sort of support to really eroticize safer sex — those were all activities that took place in the late ‘80s and early ‘90s when the HIV transmission rate did drop significantly, but those are interventions and tools that we no longer use as much as a community.”
Top photo: Johnson by Steve Lipofsky, Mercury via queenonline.com , White by Wildhartlivie, Zamora publicity photo , Kramer by David Shankbone, HIV image courtesy CDC, Quilt courtesy NAMES Project.