AIDS Activism Reemerges in America

After the first case was reported in 1981, America soon found itself in the middle of an AIDS crisis. For the next several years, the country was on high alert: men and women were dying quickly and painfully. Activists groups like ACT UP made headlines with disruptive and shocking protests demanding better care. TV shows devoted very special episodes to safe sex, and the global health community seemed united in its effort to eradicate AIDS.

But 28 years is a long time to be in crisis mode. And thanks to the 1996 development of the antiviral cocktail, a combination of drugs that largely stemmed the fatal and fast-moving elements of the disease while eliminating many of its highly visible indicators, the feeling of immediate danger that spurred so many people to action is now gone.

"When I was diagnosed, I was told I had a year left and I would have done anything if I thought it would've saved my life," says Regan Hofmann, the editor in chief of POZ magazine, who received her diagnosis in 1996. "But then three months later they said, 'You're going to be OK, you might even have a normal life span'. . . I was no less adamant about wanting to fight HIV/AIDS, but the urgency was gone."

Since that time, free condoms have largely disappeared from bars; red ribbons, once so ubiquitous at awards ceremonies, are rarely seen, and other health issues—from obesity to cancer—have taken up space in the public consciousness.

"In my early days as a board member and earlier, there was a great deal of concern, worry, angst about HIV that has settled into this kind of benign complacency," says Marjorie J. Hill, CEO for the Gay Men’s Health Crisis. Many people, she says, thinks AIDS can be treated with a pill, and that living with the disease is now similar to living with diabetes or heart disease.

Of course, HIV/AIDS is not nearly under control: it affects 33 million people worldwide, and in America, it's the No. 1 killer for women under 35, according to the MAC AIDS fund. The Centers for Disease Control reports that new infections have not declined in the past decade, and while people under 30 are at the greatest risk, so are those in their 50s and 60s. As patients living with HIV/AIDS get older, more potential side effects of the drug cocktails become apparent, including premature aging and dementia. And while many people think AIDS as a medical condition is no big deal, people are still afraid to confront it. "The stigma against people with HIV is still so strong," says Hofmann, who notes that fear of social consequences has kept many patients silent.

But now, there's evidence of new life in the AIDS movement. Under the current administration, the government has issued the first increase in dollars spent on domestic HIV prevention in nine years and renewed an almost decade-dormant social marketing initiative by the CDC. President Obama is also said to be actively working towards a national AIDS strategy. "There's been a lot of interest, advocacy, and excitement around that," says Hill, who notes that currently there's no over-arching system organizing all the government's AIDS initiatives. "Not only is it duplicative, they can't tell you in a quick answer whether or not mental health and HIV prevention programs in place in one area of the government match with the HIV testing program, match with the treatment adherence program. Our national AIDS strategy would say that we have to have the government coordinate and collaborate resources," she says.

Administrative changes are not the only signs of life from the reemerging AIDS movement: this year, four ACT UP groups across the country reformed after several years of silence, in part as a reaction to the complacency even within AIDS administration and care groups. "AIDS service groups in the beginning were very hands on with activism, and now for the most part are quite removed. It is dependent on people with AIDS to hold them accountable," says Bob Bowers, a spokesperson for ACT UP Wisconsin, which now has 15 members after reforming in May following about 10 years of inactivity. "There are grave issues that have been festering for years and needed to be addressed."

Moreover, younger activists who were largely too young for the initial AIDS panic are harnessing the power of the Internet to spread the word. "Younger people are engaging us at a very different level—a very digital level," says LaMont Evans, CEO for the Healthy Black Communities Organization, which cosponsors National Black HIV/AIDS Awareness Day. "We have people sending us videos they've done via MySpace and Facebook." Zachary Barnett, the 29-year-old development director for Covalent Immunology Foundation, a new charity dedicated to finding a vaccine for AIDS, is on the forefront of younger activists who are starting to come to the cause for the first time. "A lot of younger people are now starting to lose their friends to the epidemic, and they're starting to retell the story," says Evans.

And with the lifting of the HIV travel ban at the end of October—a restriction on entry for noncitizens that was in place for 22 years—AIDS activism is about to come back to America in a big way. It has just been announced that the XIX International AIDS Conference will be held Washington, D.C., in July 2012. One of the largest AIDS symposiums in the world, this is the first time the conference has been on U.S. soil. "We now stand on the side of science and fairness on this issue," says Nancy Mahon, executive director of the MAC AIDS Fund.

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