Jennifer Flynn, 30, HIV negative (pictured with fellow organizers Joe Bostic, left, and Joe Capestany, both HIV positive [image not available])
Director, New York City AIDS Housing Network
Brooklyn, New York
Out of 47,000 New Yorkers with AIDS, 28,000 rely on welfare and 27,000 require housing assistance. To make matters worse, outgoing New York Mayor Rudolph Giuliani is pushing to cut $2.6 million of the city’s $5 million HIV prevention budget for communities of color. Jennifer Flynn needs to vent. “The safety net the government has set up takes minimal responsibility in providing for the groups they claim to support,” she says. “I spend a lot of time fighting like hell to protect laws that are already in place.”
Those who follow the housing fight in the Big Apple say PWAs have a powerful advocate in Flynn. A former ACT UPer and needle-exchange activist, she spearheaded the merger of two smaller housing coalitions to form the New York City AIDS Housing Network -- and now serves as its first director. “Jennifer has brought the needs of people with HIV -- in particular, the homeless -- to the forefront,” says Jackie Vimo, director of the Workfare Media Initiative. “While many pay lip service to consumer-advisory boards and such, Jennifer actively involves PWAs in the decision-making process.” A case in point: lead organizer Joe Capestany. Once homeless, incarcerated for 17 years and now on welfare while living in subsidized housing, he runs a training program called POWER (People with AIDS Organizing for Welfare Equal Rights).
Not one to mono-task, Flynn also fights for housing for parolees and welfare applicants, and she’s helping to edit a book of oral histories of low-income HIVers, interviewed by their peers. “I want to protect the things that everyone in the world thinks people should have: housing, food, health care, clothing, safety and love,” Flynn says. “I guess the thought is that there’s not enough to go around. But I think there is.”
-- Kristina Grish
Song Pengfei, 19, HIV positive
Speaker, writer, activist
Slight and soft-spoken, Song Pengfei only seems harmless. His government knows better. Song is the most famous PWA in China. Determined to put its burgeoning AIDS crisis -- and the government’s restrictive, erratic response to it -- on the map, he speaks frequently and fearlessly to international press, often just one step ahead of the authorities.
Song was 16 when he contracted the virus from a tainted blood transfusion after a botched, unnecessary operation on a leg wound. His school immediately expelled him. “People tell me they will get infected just by talking to me,” Song says. “One told me that if I ate an apple and tossed it on the ground and his dog ate it, the dog would have HIV, too.” A local government offer to pay for AIDS meds quickly expired due to cost. While Song’s misadventure soon bankrupted his once-prosperous parents, it made great copy for The New York Times, and he’s been speaking out ever since.
Last summer, the intrepid teen snuck into a heavily guarded Central China village to get a firsthand glimpse of its AIDS devastation. (He told authorities he was the son of a Korean investor interested in the area’s garlic industry.) On another occasion, the government launched a probe to determine how he got a visa to attend an AIDS summit in Malaysia. In November, the Ministry of Health notably kept him off the speaker roster at its first national conference on AIDS.
But the move came too late. Song is a celebrity. His plight moved the New York City-based Aid for AIDS to provide him with combination therapy. As a result, he’s never been ill. Currently, he’s seeking funds to produce an autobiographical documentary and to keep up his Chinese-language website, www.songpfhiv.com. In the meantime, the hundreds of letters he receives every month continue to motivate him. “All these people who write me understand that I’m not doing this to make myself famous,” he says, “but for all the other people with HIV, too.”
-- Steve Friess
Omololu Falobi, 30, HIV negative
Director, Journalists Against AIDS
As features editor of Sunday Punch, one of Nigeria’s leading newspapers, Omololu Falobi watched Nigeria’s chaotic, repressive military dictatorship shut his publication down twice. Then in his 20s, Falobi agitated for freedom of the press along with other colleagues in Nigeria’s Union of Journalists. But when Afrobeat megastar Fela Kuti died of AIDS in 1997, Falobi says that he returned from the press conference “reeling.” If it could stun a nation that someone as famously promiscuous as Kuti, who publicly opposed condoms, could get HIV, it was painfully clear that the government’s AIDS efforts were a disaster. “We adopted a very activist stance for democracy, but we needed to translate that energy into issues of public health,” Falobi recalls. Journalists Against AIDS (JAAIDS) was born.
In just four years, JAAIDS and its muckraking membership has reinvented AIDS coverage in Nigeria, home to some 2.7 million HIVers. It was JAAIDS that broke the story of the massive Petroleum Trust Fund, then the main source of government social-service spending, wasting millions of dollars on soon-to-expire HIV test kits while neglecting to buy basic antibiotics. (In 1999, Nigeria’s new democratic government scrapped the PTF and launched an investigation.)
From a few workshops in 1997, JAAIDS now publishes a monthly AIDS bulletin, manages what leading AIDS reporter Laurie Garrett calls “the best HIV/AIDS listserv in Africa” and runs AIDS-reporting programs at Nigeria’s top two journalism schools. Last year, JAAIDS raised enough money to hire Falobi full time as director. Now he’s helping form parallel organizations in Gambia, Kenya, Ghana and Liberia, and expanding JAAIDS’ trainings into radio -- a critical medium in the face of 43 percent illiteracy rates. “His commitment is fierce and his intelligence unassailable,” Garrett says of Falobi. “I wish every country in Africa had its own Omololu.”
-- Esther Kaplan
Elizabeth Marte, 39, HIV positive
Peer Support Advocate, Women Alive
Los Angeles, California
Elizabeth Marte is a natural activist. Even though the HIV positive mother of three spent most of her adult life on the streets, addicted to crack, turning tricks or in prison, her instincts told her that everyone is entitled to dignity even when they doubt their own value. In prison, she joined a group of mothers who successfully lobbied for respectable, clean visiting quarters for their children. When she was living in a homeless shelter in Santa Monica, she helped with the intake process so that other women in her predicament could get the services they needed.
Now Marte is a peer support advocate for Women Alive in Los Angeles, teaching positive moms to be proactive about their care. Twice a week, she educates women about mother-to-child transmission at the Comprehensive Maternal Child/HIV Management and Research Center at L.A. County/USC Medical Center, a platter of lasagna in hand. (“They need a hot meal, especially the pregnant ones,” she quips.) Marte emphasizes the importance of prenatal visits and adherence to meds, and she talks about how to manage side effects. Other days might call for her coaching a client through a relationship or housing crisis, or even -- in the case of one client’s death -- ensuring that the family has money for a proper burial.
A champion literally from the cradle to the grave, Marte carries out her duties with a warm smile and the gravitas of one who has been in her clients’ shoes. “When you speak to Elizabeth, you know she’s listening and that she cares. Her heart is so full of compassion,” says Women Alive program director Tammy Vitrano. “I’ve seen her give away her last five dollars.”
Marte’s dream is to start her own organization -- to serve juice, have a gym and create a safe haven for heterosexual HIVers to hang out. She’ll pen a grant this year. In the meantime, one thing is clear: “I may have taken charge, but I still have a long way to go. I’m beginning to believe that the past is the guide to my future.”
-- Stacie Stukin
Rashad Burgess, 25, HIV negative
Executive Director, MOCHA (Men of Color HIV/AIDS Coalition)
At the tender age of 24, Rashad Burgess, with a mere four months’ work experience at Chicago’s Department of Public Health, created MOCHA, a $1.2 million, federally funded program dedicated to curtailing the frightening rise of HIV infections among black and Latino men. “My goal was to build a new information and prevention infrastructure in the black community,” says Burgess, now MOCHA head and a veteran 25. “Let’s increase the services and decrease the infections.” Since new data indicate that one-third of young gay African-American men between 23 and 29 are HIV positive -- a rate that puts even some hard-hit African nations in the shade -- Burgess’ brainchild seems long overdue. Frank Oldham Jr., executive director of Horizons Community Services, in Chicago, toasts Burgess as definitely one to watch. “MOCHA was entirely Rashad’s idea,” he says. “He wrote the grant in 15 days and got it funded. We are so blessed to have him in the fight.”
As a devout Christian growing up black and gay in Chicago’s south suburbs, Burgess never went to nightclubs. Instead he found his first boyfriends by visiting neighborhood church choirs in secret. “It would be nothing to go to a very popular church where the minister is mocking gays, while 80 percent of the men in the church are gay including the minister’s son!” he recalls. “I always understood that black gay men experience sexuality and life, including HIV, differently than white gays on TV.”
Burgess’ insights have infused MOCHA with innovative grassroots ways to connect with black and Latino men, including those on the down low who might not identify as gay. “We’ve infiltrated a phone sex party line in Chicago whose number has never been published but every black gay man knows about,” Burgess proudly reports. “I have people on the line to offer support and information. We have to think nontraditional -- beyond handing people a condom. It’s not just about protecting yourself, but understanding why your life is valuable as a black gay man.”
-- Stephen Winter
Dr. Andrew Badley, 36, HIV negative
Assistant Professor, Ottawa Hospital Research Institute
It could be said that Andrew Badley became one of the most promising young AIDS researchers by accident. While in high school, he had a scuba diving mishap that resulted in an infection. “I passed out,” says the water-lover (who has recently taken up salmon fishing). When he regained consciousness, he was shocked to learn that he’d been in a coma for two weeks. “So I thought that studying about infections would be, well, interesting,” he says.
His understatement belies his accomplishment. A medical graduate of Dalhousie University, in Halifax, Nova Scotia, and a former internal-medicine resident at the Mayo Clinic, Badley received the American Society of Microbiology’s Young Investigator Award in 1997 for his HIV findings as a rookie researcher. More recently, he’s made good on that first flash of promise -- not to mention a slew of headlines -- by finding a way to attack HIV in dormant immune cells, where they can “hide” from standard combo meds.
His not-so-secret weapon? A naturally occurring protein called TRAIL, developed by Seattle-based biopharmaceutical company Immunex. “TRAIL causes HIV positive cells to die through a process called apoptosis,” Badley explains. “It’s like suicide for the infected T cells, leaving healthy cells largely untouched.”
Badley’s research is in the early stages, and he hopes to get TRAIL into human trials in a year or two. Nevertheless, he has resurrected the once-bright hope of eradicating HIV from the body. “He’s one of the few scientists in the world studying why CD4 cells really die,” says Jon Angel, MD, a colleague at Ottawa Hospital. “His research has led to the development of a potentially revolutionary therapy.”
-- Sean Hosein
Nona Gaye, 27, HIV negative
Spokesperson, Artists Against AIDS Worldwide
Los Angeles, California
Tomorrow night is the premiere of Ali, and Nona Gaye -- singer, actress, progeny of the late, great soul troubadour Marvin Gaye -- is ready for her close-up...sort of. “I’m all freaked out,” says Gaye, who plays Ali’s second wife, Khalilah, opposite Will Smith. Fresh from a gown fitting, she chose something glamourous but tasteful by Ralph Lauren. “Khalilah is, after all, a Muslim, and I want to be respectful,” she says. “But if it was up to me, I’d be wearing hotpants.”
It’s been nine years since Gaye released her debut (and, so far, only) album, Love For the Future. But she’s returning to the limelight in a major way. Not only is a new album in the works, but she was approached by Red Hot Organization cofounder Leigh Blake and U2 frontman Bono to sing in a star-studded cover of her father’s hit, “What’s Going On” to raise money to fight AIDS in Africa. At the September recording session, even Gaye -- who was 9 when her famous dad died -- was in awe. “From Destiny’s Child to *NSYNC to Britney Spears, it was ridiculous.” Furthermore, the celebs checked their egos at the door. “There was no discussion of ’How much time do I get on the record?’” Gaye reports. “It was about getting the record done to stop people from dying.”
As spokesperson for Artists Against AIDS Worldwide, the coalition of entertainers spawned by “What’s Going On” (their next project is a major concert in Cape Town in 2002), she has spoken out on Capitol Hill and before the Congressional Black Caucus. “The last thing I want to do is just be some sort of figurehead,” says Gaye, who has lost three close friends to AIDS. Although the proceeds from “What’s Going On” were split with the September 11th Fund, Gaye is adamant about not diluting the record’s original goal. “We’ve been fighting the war against AIDS for a much longer time,” she says. “We need to stay focused.”
-- Angelo Ragaza
Grant Colfax, MD, 36, HIV negative
Director of Prevention Studies, Department of Public Health
San Francisco, California
“If the hottest guy on the dance floor wants to fuck me without a condom, I’ll let him,” Grant Colfax says. “I’ll take some Ketamine and some Viagra, and when I wake up the next day, I’ll think, Maybe I was exposed to HIV -- but given that there are treatments available now, wasn’t it worth it?” Colfax, a new-prevention pioneer, can recite in his sleep all the reasons gay men give for taking the HIV risk. After all, he spends his days hunting unprotected anal sex in its natural habitat -- the circuit parties, dance clubs and bareback venues where most researchers fear to tread. His findings exceed our worst fears: One half of all circuit-partiers are on four drugs at one time. One of every 10 weekend dance-clubbers fucks without condoms. One third of gay men in relationships practice “negotiated safety,” but 40 percent break their own rules.
Breaking the rules pretty much defines gay sexual desire, and that has driven the best prevention minds to distraction. Last fall, Colfax’s colleague, Jeffrey Klausner, MD, mused publicly about quarantine for barebackers [see "Life in Wartime“]. Then the other shoe dropped when Colfax’s mentor, Tom Coates, MD, famously wondered if it was time to throw in the safer-sex towel [see ”Say What?“]. Passing the mantle, Coates now says, ”Grant’s work is clearly on the cutting edge. He is developing important interventions that will bear fruit."
“A researcher can be a catalyst,” Colfax says, “but ultimately it’s up to the community. We have to improve communication between positive and negative guys.” Nor is the California farmboy with the Harvard MD and doctor-husband shy about using words like altruism and responsibility. He plans to train AIDS docs to talk up disclosure, and circuit queens, safer drugging. “I work with a peer-educator model,” he says, “to identify the guys at the club -- whether the best-looking, most-respected or whatever -- who can become leaders.” Until then, Colfax will do just fine.
-- Walter Armstrong
Sergey Myachikov, 24, HIV positive
Cofounder, A.I.D.S. (All In Danger -- Stop)
“On the street there are a lot of myths about HIV,” says Sergey Myachikov, a recovering heroin addict who found out he is HIV positive two years ago. “So it’s better for people to learn about it from their peers, who know about it from real life.”
At 24, with a wife and young son, Myachikov has seen quite a bit of “real life.” Now, he’s one of a small but growing number of Russian activists who are open about having HIV and seek to boost public awareness by talking about their experience. He’s determined to make a dent in his homeland’s epidemic, which the UN now calls the world’s fastest-growing. The number of official cases has risen to 150,000 (from only 1,000 six years ago), but the actual figure is undoubtedly much higher. The vast majority are, like Myachikov, people with a history of injection drug use. Authorities estimate that about 70 percent of current and former needle-users are infected, with gay men accounting for only a small percentage of the total HIV positive population.
In the past year, Myachikov distributed 3,000 clean syringes as a volunteer for Kolodetz, a group that promotes prevention among drug users. Now he has joined forces with several other positive activists and formed a new public-education organization called A.I.D.S. (All In Danger -- Stop). On World AIDS Day, the group carried out its first action, marching around central Moscow with a huge red ribbon and explaining its significance to passers-by -- no small feat in a society where HIV, still shrouded in mystery, is so heavily stigmatized.
“He’s not at all ashamed of being HIV positive, and that gives him courage,” says Vitalik Melnikov, one of the founders of Kolodetz and a former HIV-outreach worker with Doctors Without Borders. “He’s prepared to take on difficult tasks and doesn’t worry about the obstacles.”
Myachikov hopes that A.I.D.S. members will one day conduct HIV-awareness presentations in schools, counseling sessions for the newly diagnosed at testing centers and other educational activities. “I was frightened at first about the attitude of society,” he says of his initial post-diagnosis days. “But then I decided that my conscience wouldn’t allow me to do nothing about it.”
-- David Tuller
THE SISTER SOLDIER
Lungi Mazibuko, 32, HIV positive
Cape Town, South Africa
Lungi Mazibuko was seven months’ pregnant when she tested positive in August 1996. Dazed, she agreed to take a drug to limit the risk of transmitting HIV to her child. Only after giving birth did she find out that she’d been placed in a clinical trial, and may have received a placebo. “I felt helpless,” she recalls. “I didn’t know where to direct my anger, or how.”
That didn’t last long. By late 1997 she and HIV positive comrade Mercy Makhalamele were fasting and marching through the streets of Durban, raising awareness about mother-to-child transmission and demanding universal access to AZT. Three years later, the two cofounded Sistahs in Action, in Durban, to provide shelter and counseling for positive women fleeing domestic or community violence.
Now, as the Western Cape coordinator for the National Association of People with AIDS (NAPWA), Mazibuko is widely regarded as one of South Africa’s most skilled grassroots organizers and a leading voice on gender issues. She has helped to democratize NAPWA, pushing a “bottom up” agenda focused on human rights, not just meds, and founding the group’s first community-based chapter in her KwaZulu-Natal hometown. Her current plan: a campaign she’s dubbed Real Men Don’t Rape. “There has been a cry from the sisters that men don’t want to use condoms,” says Mazibuko. Add to that, she says, the experience of women forced into sex as punishment for being lesbian or because of the myth that sex with virgins will “cure” AIDS. Mazibuko is seeking the leadership of HIV positive men “who will oppose this abuse and who will say, ’We won’t be cured if we rape young women.’”
As an openly positive woman who projects a strong sense of mission, Mazibuko is a powerful emissary. “She’s always questioning the information she gets, and asking how to make it relevant for herself and the women she works with,” says longtime AIDS journalist Anne-christine d’Adesky. “And women trust her because she does that.”