A cybergeek in London. A chainsmoking mom in Paris. A Colombian artist with a taste for toilets. These and 10 other unique men and women from around the world (no Americans, thank you!) made the final cut for POZ’s first annual Dream Team. It’s our chance to single out some of the unsung heroes whose gift for life and whose hard work down the years have proved more than a match for this cruel disease. Whether laying hands on money or meds or a dying patient who has neither, each of our honorees brings a sense of passion, play and plain old personality to their activism. Are these folks having fun saving lives? You betcha. Dream Teamers, you’re our inspiration. Take a bow.
Lawyer; Canada; She can handle a big mess.
Maggie Atkinson scored big last March when Glaxo Wellcome finally made its new nuke, Abacavir, available through expanded access. A treatment trouble-maker in AIDS Action Now!, Canada’s version of ACT UP, Atkinson whipped up a worldwide protest denouncing Glaxo’s footdragging. Never one to rest on her laurels, the 36-year-old Toronto lawyer keeps herself busy: She sits on the Canadian HIV Trials Network Community Advisory Committee, started the AIDS Legal Clinic of Ontario and even crashed a trés exclusive fete last year during a speech by Prime Minister Jean Chrétien.
Not bad for someone on disability, eh? Since this PWA first started receiving benefits in 1993, she has launched most of her activism from home. “Fortunately I have the ability to disregard clutter,” she says. “Otherwise I’d probably go mad because the place is littered with papers. My guests usually have to move stacks of briefs and books just to sit down.”
Atkinson may be a legal eagle, but she’s no early bird. Because she likes to sleep in, breakfast has to wait until early afternoon and round one of meds and vitamins. But by evening she’s in battle mode, “strategizing with my AIDS Action Now! colleagues and allies.”
In an age when demos are passé, what keeps Atkinson all fired up? She says she finds inspiration in the memory of close friend Brian Farlinger, a bright light of Canadian AIDS militancy who passed away in 1995, “and other PWAs, many of whom have no place for activism in their lives because they are so overwhelmed just trying to survive.”
When naming the object of her disaffection, Atkinson isn’t shy about using the “H” word: “The average politician,” she says vehemently, “I hate their complacency and callousness.”
Artist; Colombia; He’s just our type.
When we see blood nowadays, we automatically relate it to AIDS,“ says Fernando Arias. And this artist should know a thing or two about blood: Growing up in Bogota, Colombia, both parents were in the business of life and death -- his father researched bacteria and his mother worked in a hospital. So table talk was decidedly dominated by illness and its metaphors. Now an artist who produces AIDS-themed installations in London, Arias, 34, finds himself fascinated by the epidemic’s gory details and ”places where we’re confronted with our own body and its excrements.“ Dare we ask for an example? ”That sanctuary of solitude and intimacy: The toilet."
Arias first linked his art with the virus in 1992 when a curator commissioned a World AIDS Day installation. This gesture became a commitment when he learned that a dear friend was infected. “I look for ways to interpret life by taking objects out of context, like blood samples usually known only to doctors in the lab, and put them in a different context, like a museum. I mix objects related to death with sound and light.”
Arias, who is HIV negative, leads the consummate dreamer’s life. When describing a typical day, the artist tells all from soup to nuts: “Remember dreams, work, think, love, laugh, think, go for a walk, eat, create, sleep, dream, sleep, gym, work, love, sex, love, laugh, think, read, write, TV, work, dream, etc.” And, no doubt, a long spell in the loo.
Time For A Smoke
Marie de Cenival
Activist; France; She goes that extra e-mail.
I wake up at 7 a.m. and scream for coffee,“ Marie de Cenival says, describing her day. ”My eight-year-old daughter brings it to my bed. I trained her.“ And then? ”I reach for a cigarette.“ Before you call France’s child-welfare bureau, consider that de Cenival, a 24-year-old Parisian, needs those caffeine-and-nicotine rushes for her long days spent upbraiding corporate and government paper-pushers on five continents for their ”unethical and insincere AIDS programs in the developing world.“ An ACT UP/Paris veteran and the group’s North/South Commission’s project coordinator, de Cenival is currently putting the finishing touches on ”Planet Africa," an electronic network that links AIDS groups from Cairo to Cape Town. Soon an African ASOer need only click and drag firstname.lastname@example.org to access treatment information on a global scale.
Working out of the ACT UP office on Rue Sedain -- cramped, plastered with “Silence=Morte” posters and filled with cigarette smoke -- de Cenival e-mails the world all day long, and then spends evenings scrounging up scarce funds for her project. That, and checking over her daughter’s math homework.
De Cenival is something of a legend in European-activist circles, but the small, skinny woman often finds herself out on a limb -- a lonely perch. “Marie is often the only voice of dissent in meetings in Africa, where activism is not always accepted behavior,” says de Cenival’s colleague Ron MacInnis of the National Council for International Health.
But de Cenival takes all this activism business in stride. When asked what stresses her most, she quickly answers, “Looking for my cigarettes -- and not finding them.”
Gustavo Reyes Teran
Doctor; Mexico; He’s a breath of fresh air to patients.
Dr. Gustavo Reyes Teran is haunted by a PWA he can never forget. “Luz was a brilliant young woman from a tiny, impoverished village in the state of Guerrero,” he says. “She wrote the most beautiful poetry -- it even made the infectologists here cry! Many times, we thought we would never see her again, but she always came back here.”
“Here” is a clinic in sprawling, smoggy Mexico City, a metropolis bursting with some 20 million people and boasting the worst air in the world. That fact alone explains why Reyes Teran is one of the most sought-after men in the capital. The 38-year-old physician-researcher is a leading expert on respiratory diseases in a city where hundreds of thousands have pollution-related lung problems at the same time that rates of both TB and HIV are on the rise. “The effect of AIDS on Mexicans gets worse each year,” Reyes Teran says, “and its effect on other diseases like TB has been heavy. The problem is extremely complex in poor countries like mine. Most infected people don’t have access to new treatments -- but they do face horrible stigmas.”
The resources at Reyes Teran’s hospital -- the clinic to which Luz trekked, the National Institute of Respiratory Diseases -- are scant. Its hallways are crowded with destitute patients and its microbiology lab can only be described as antiquated. “We have shortages everywhere, both at the basic laboratory level and in terms of clinical services,” Reyes Teran says. Even so, this healer will not give in. “We do the best with what we have,” he says simply.
She’s The One
Model mom; Uganda; She keeps hope alive.
On a clear day in Geneva, Noerine Kaleeba can look past the framed photographs of loved ones who died of AIDS and out the windows to the French Alps beyond. The view, she says, fills her with the promise of all she can accomplish as UNAIDS’s new community mobilization adviser, helping local organizations worldwide get new policies into gear. “After leading the Ugandan AIDS movement for 10 years, I felt a strong need to influence global policy with experiences from my community,” Kaleeba says. “So I took this job in Geneva.”
Kaleeba has long played Job to the epidemic’s Yahweh, and at 46, she’s still standing in the whirlwind. “Before Geneva, I lived, loved, worked with and was always surrounded by people living with HIV,” she says. Her husband, Christopher, died of AIDS, as have nine other members of her family, including two young nieces. Shortly after her husband’s diagnosis in 1986, Kaleeba got TASO, her war-torn nation’s first AIDS support group, up and running. Although Christopher died a year later, TASO lived on, and today is one of the largest service and advocacy groups in all of Africa.
And Africa, with two-thirds of the world’s HIV positive, is where her heart remains. “PWAs in Africa are striving for better quality of life,” she says. “We finally have hope as there begins to appear evidence that as a human race, we are not totally powerless against HIV.” And that belief inspires us more than any hypeful headline trumpeting “The Twilight of AIDS.”
Diva; Malaysia; She’s not just another princess.
Marina Mahathir was groomed for greatness. A daughter of Malaysia’s long-serving prime minister, the prominent journalist and PR consultant could have the world at her manicured feet. Instead she stays on her feet, running the Malaysian AIDS Council, an umbrella for the nation’s AIDS groups -- in the process, making it one of Southeast Asia’s most effective ASOs. Her focus right now is half prevention -- “particularly among marginalized groups, women and youth” -- and half care -- the nature of which she states plainly: “Hospice services.” Mahathir’s tireless but ever-glamorous presence on behalf of PWAs has become a set-piece of the Malaysian media, assuring high visibility for the epidemic.
“I enjoy most of the work, although it’s often frustrating, depressing and sad,” Mahathir says. “But oddly, I am grateful to AIDS for many things: For the wonderful people, especially people with AIDS, I’ve had the privilege to meet. For bringing me closer to my religion, Islam. Above all, for giving me the opportunity to witness great acts of humanitarianism, compassion and love.”
Doctor; China; He changed courses in midstream.
At the age of 70, Lu Weibo is a master of traditional Chinese medicine (TCM), working out of the China Academy of TCM in Beijing. But, ironically, this was not his original calling. “I am a Western-trained doctor. I learned TCM later,” Lu says, adding that he mixes medical messages from both worlds to fight infectious diseases such as hepatitis and AIDS.
In the early ’80s, Lu abandoned the bustling yet sterile confines of the academy in Beijing, setting up a practice in Tanzania, where he first encountered AIDS. That was when he began treating PWAs with Chinese herbs, and had remarkable success suppressing viral loads (one woman with HIV even retested negative).
Lu is just now completing an account of his research applying herbal therapies to HIV, and hopes that it will prove useful to the 80 percent of PWAs worldwide with no access to Western meds. “Ancient Chinese medicine has no history of treating AIDS, so there is much to learn,” he says. “But our experience shows us that traditional medicine can effectively treat HIV, although we cannot cure the disease -- yet.”
Tango In Tonga
Organizer; Canada; He’s the dragon lady of the conference.
In 1989, Ken Morrison was an uninvited guest at the International AIDS Conference in his native Montreal, joining some 300 protesters who disrupted the meeting and pushed PWA presence front and center. Nine years later, Morrison could easily be taken for the classic outsider-turned-insider. He’s got the suit-and-tie drill down after a year in Geneva, organizing the Community Forum for this June’s World AIDS Conference. But scratch the surface, and the 45-year-old writer betrays his lighter side: He’s been known to get arrested in Venezuela at 3 a.m., nearly fall off an elephant in Thailand and dance with the Princess of Tonga.
During the countdown to the Geneva conference, however, Morrison leads a button-down life. “For now, all I do is sit at my computer in a small office,” he says. “It’s noisy and busy with the air of determination, just a bit of sweat and the occasional tear. The pressure grows daily. Expectations are high, but possibilities are limited. But we’ll do our best for the 10,000 visitors.” And when it’s all over, don’t be surprised if Ken’s drag alter ego, Barbie, comes out to play.
Out For Justice
Activist; Costa Rica; He has the guts to go first.
When Guillermo Murillo came out two years ago as a person with HIV, he feared that he and his family would be shunned. After all, no Costa Rican had ever spoken publicly about what living with AIDS is like. Yet to his surprise, “the exact opposite happened,” he says. “Friends and neighbors organized and raised money to buy me medications.”
Murillo made his bold move in order to publicize the aching lack of antivirals in Costa Rica. A teacher of Spanish as a second language, the 34-year-old triumphed when a Supreme Court ruled in his favor, forcing the government to provide the anti-protease pills to any doctor requesting them for his or her patients.
As the nation’s AIDS posterboy, Murillo uses his notoriety to drum up support for local AIDS groups and lobbies government officials on behalf of the cause. But he admits to having a low threshold for the tedium of these meetings. “They say they are doing so much for us, but most of it is just words,” he says. “That, combined with our own passivity, is what we need to work on most.”
Ron Simon Gold
Researcher; Australia; He asks the tough questions.
Long ago,“ says Dr. Ron Simon Gold, Australia’s most controversial prevention activist, ”a friend sat me down and told me calmly and quietly that he had HIV. I was stunned, entirely incapable of speaking coherently.“ But in the days that followed, Gold found himself gaining a sense of comfort and strength from his friend ”that I found truly remarkable. And I’ve noticed the same thing with the hundreds of HIV positive guys I’ve talked to in the course of my research."
That research wins high praise from Dr. Walt Odets, his famed American counterpart. “Gold’s work is among the most imaginative, intelligent and useful being done on gay men and HIV prevention,” he says.
Even though Down Under is widely viewed as one of the world’s greatest HIV prevention success stories, fear of a second wave of infections has Gold working overtime. And the 46-year-old faces the split familiar to many activists: He leads one busy life at Deakin University in Melbourne as a psychology professor and another at his home-office. What’s the mystery that keeps his candle burning at both ends? “The thought processes that in the heat of the moment lead gay men to decide to have unsafe anal sex, and how in the cold light of day prevention can affect those thought processes,” he says. “That’s my subject.”
Two for the Road
David Wilson and Paul Cawthorne
Doctor and nurse; Thailand; They prove that love knows no borders.
It’s a long way from the clipped parks of London to the teeming streets of Bangkok. For one British couple, Dr. David Wilson and nurse Paul Cawthorne, the trip has taken them on an adventure filled with heat, sweat, dust, cruel disease and the rare satisfaction of knowing that one has made a difference.
Since 1995, Wilson, 50, and Cawthorne, 43, have been based in Thailand as project coordinators for Doctors Without Borders, a French nonprofit that provides medical services in parts of the world devastated by war, poverty or illness. The two Brits’ romance blossomed 20 years ago from a personal ad in a gay paper. Wilson’s self-confessed “mid-life crisis” and Cawthorne’s four-month stint at a spinal-injuries rehabilitation unit in Armenia in 1991 convinced the couple to leave it all behind and head for Southeast Asia.
Dry wit has served them well in steamy Thailand, where HIV rages out of control and health care lags far behind. The two men currently supervise four Thai nurses and a social worker who visit PWAs at home. “It’s an everyday slog,” Wilson says. “Our clients are all too poor to access antiviral drugs. In Bangkok, everyone really is at risk,” and a recent regionwide economic crisis means that conditions are unlikely to improve soon.
Still they view their labors in the crowded city as crucial. “By fairly simple, hands-on attention, we can often keep a PWA at home and involve their families in their care,” Cawthorne says. “In Bangkok, very few other organizations do that.”
But man cannot live by good works alone: Wilson reports that he still pines for his beloved opera, and Cawthorne confesses that he has developed a severe allergy to karaoke.
Mine the Web
Cybernaut; Britain; He’s a behind-the-screens kind of guy.
Some nights, Edward King, a 30-year-old Londoner, stays up late at his home computer, scanning the far reaches of cyberspace for global news of AIDS treatments and policies. Until recently, he flagged the most important stuff -- such as expanded access to drug trials -- and immediately posted them on the website that he ran for the U.S.--based group, the Mining Company (aids.miningco.com), effectively picking the world’s best brains for the rest of us science-class dropouts. The site also includes a chat room or two and provides forums for experts and not-so-experts to discuss such issues as negotiating safe sex.
“It really all started as a hobby,” he says. In addition, King has helped pay his bills by editing both The AIDS Treatment Update and The HIV and AIDS Treatments Directory of the National AIDS Manual, Britain’s AIDS drug bible. When he manages to escape the Internet, he kicks back by volunteering at Gay Men Fighting AIDS and Rubberstuffers, two groups whose take-no-prisoners tactics have kept British HIV rates far lower than in the United States or France.
King is not your typical activist -- he says that he hates “face-to-face conflict of pretty much any kind.” This may explain why his newest career move will keep Britain’s treatment wizard behind the screen: Last month, he left the Mining Company to run Healthcare Communications Group’s Clinical Care Options for HIV website (http://www.healthcg.com/), “an HIV medical resource for healthcare professionals.”
Fundraiser; France; He’s tailor-made for activism.
Philanthropy is not a question of ’Maybe’ or ’Why?’ It is just part of living." Pierre Bergé, one of the last renaissance men, has built an empire based on that credo. Since helping his friend Yves Saint Laurent establish his couture house (YSL) in Paris in 1961 (he is now its president), the writer-businessman-fashion maven-arts patron-political confidante-human rights advocate has imposed his sense of high style and justice on all facets of French society.
Bergé has led the charge for AIDS fundraising since 1982, with the death of his friend Joe McDonald, a former model whose New York Times obit was the first in that paper to name AIDS as the killer. Throughout the ’80s, Bergé was a close, personal advisor of France’s then-president François Mitterrand, using his influence to help get AIDS activism off the ground. In the ’90s, Bergé and YSL launched Sidaction, a telethon that raises funds -- more than $50 million a year -- for AIDS services and research.
And he’s still at the cutting edge, heading groups ranging from direct-action Arcat Sida to Ensemble Contre Sida, an umbrella of research, treatment and advocacy agencies. His good works are an end in themselves, he says, not a means to win points for YSL. “I’m always suspicious about people who give for good reasons, but with strings attached,” he says. “That isn’t philanthropy.”