BY Bob Adams
November 20 2009 10:00 AM ET
Valerie Spencer says she'll eagerly step into the national spotlight to advocate for her transgender peers. "I have no problem speaking out. Sometimes they literally have to pull me away from the microphone at conferences," she laughs.
As one of the country's first openly transgender AIDS activists, the 42-year-old Spencer has spent the past 20 years striving to foster self-esteem among trans men and women, including through her work as founder of the Los Angeles-based Transcend Empowerment Institute, which she says is the key to stopping HIV's relentless spread in transgender communities.
"The whole conversation really needs to look at why people say, 'Fuck it! I'm not going to use a condom,' " she insists. "We need to help people build self-worth and learn to love themselves so that they stop making those kinds of harmful decisions."
His activism is the stuff of legend. Direct-action events at Manhattan's St. Patrick's Cathedral, the New York Stock Exchange, Burroughs Wellcome headquarters, Jesse Helms's condom-sheathed home -- Peter Staley was there. Front and center. Sometimes tossed into jail. This original front man of ACT UP -- HIV-positive for over a quarter century now -- took on the giants of Big Pharma and the federal government and rewrote the rules of the AIDS playbook. Thanks to him, in 1989 the sky-high price of AZT fell closer to earth.
After forming the Treatment Action Group in 1992, he muscled the National Institutes of Health into revamping its approach to AIDS research. Staley went on to found AIDSMeds.com and later used his own money to campaign against the dangers of crystal meth. Looking for a fourth act, he says he's pondering his next move.
Sean Strub's advocacy started on day one. In 1981 he began collecting information about a mysterious, burgeoning epidemic among gay men and sharing it with friends. He eventually became one of the cornerstones of ACT UP and, along with Peter Staley, slid the famous condom over Jesse Helms's home. In 1994 he launched Poz magazine, a health-promoting enterprise that now includes Staley's AIDSMeds.com. Today, he's the chief executive of Cable Positive, which advocates for HIV education and awareness through cable TV, and he also works with the Center for HIV Law and Policy, fighting to change the landscape of U.S. laws that criminalize HIV exposure.
Those early days have left his fellow survivors with a "mass post-traumatic stress disorder," he says. But he hopes that "teaching our history will really shape our politics today in constructive ways."
Jewel Thais-Williams couldn't stand idly by during the 1980s as AIDS decimated the young gay black men who patronized the Catch One dance club she owns in Los Angeles.
"Kids who normally came to the club were getting sick, and then I would never see them alive again. And no one was doing anything in the black community to stop it," the 70-year-old recalls.
So she joined with other activists in 1985 to form the Minority AIDS Project and immediately began offering condoms and educational materials at Catch One, among the nation's earliest HIV outreach efforts to African-Americans. Once mobile HIV testing became available, Thais-Williams made sure it was regularly available outside the club as well.
Today, she's still a champion of safer sex, regularly speaking about it with clubgoers -- both gay and straight.
"AIDS is not over," she says. "There's still a lot of work to do; that's why I continue doing it."
Antonio Urbina, MD
After more than a decade in the field, Antonio Urbina has the data to prove that more-experienced HIV physicians have healthier patients. Over three quarters of the HIVers he treats have undetectable viral loads. More important than his sheer longevity in the field, though, is Urbina's holistic approach to care. As medical director of HIV education and training at St. Vincent's Comprehensive HIV Center in New York City, one of the oldest HIV treatment centers, he sees some 4,000 patients, including pregnant women.
Backing him up is a team of nurses and social workers who make sure that virtually no one falls through the cracks. If patients fail to show up to their appointments, for example, Urbina has a program -- with a 95% success rate -- that tracks them down and literally guides them to his office.
"Our motto is 'Never give up,' " says Urbina. "By bringing them back into care, we've really saved their lives."
Not content to take care of just his own patients, Urbina, who was recently appointed to the Presidential Advisory Council on HIV/AIDS (as well as being a contributing editor to HIV Plus), has invented a computer "widget" to educate New York state physicians about the proper use of postexposure prophylaxis. He hopes the tool will finally move into standard practice an effective emergency prevention measure that, available since 1996, has been largely ignored in medical education.
Take any superhero comic book and there's bound to be a backstory in which a hapless young soul is somehow infused with great physical powers -- Peter Parker's fateful radioactive spider bite, for one. The transformation opens the character to fantastic new possibilities, but it may also cause him great anguish and subject him to public stigma. (Spider-Man -- a menace!?)
Robert Walker, a veteran comic book artist who earned his stripes at Marvel, saw the parallels between this common refrain and that of HIV infection. Looking to put his creative talents to a more socially conscious cause, he took it upon himself to create his own comic book, O+MEN, made up entirely of HIV-positive superheroes who suffer at the hands of their infection but are also sexy, confident, extraordinarily fit ass-kickers.
"I used that old genre and tried to put a new spin on it and put it into a reality-type issue," he says.
Walker says HIV touched his life when he was a teenager and he watched a close family member die. After moving to New York City in 1992, he saw HIV further devastate the gay population. More recently, friends of his have participated in HIV clinical trials or vaccine trials. This gave him the idea for his book: about a nefarious government plot that, claiming to have found a cure for the virus, actually infects unwitting volunteers with a super form of HIV that is not only fast-acting but also leads to great physical powers. (Available at OMENPLUS.com.) The nine main O+MEN characters band together to enact their revenge against their tormentors.
Walker is determined to show every possible race, ethnicity, and sexuality among them. The characters include a fiery Latina lesbian stripper called Hot, an African-American football star on the "down low" named K-oss, and the ghostly former drug user Goth. While the O+MEN were infected in many different ways -- drug abuse, mother to child, gay sex, straight sex, rape -- what they have in common is great fortitude.
"I think when people find out they have HIV and AIDS, they feel a certain helplessness, they don't feel powerful," Walker says. "This is what I wanted to embody into the story of the O+MEN: a sense of power into their lives. Even if you have the disease, you can still move mountains and change the world and do great things."
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