Among those whostayed behind was petite, soft-spoken 48-year-old Esther Boucicault,founder of the AIDS organization Fondation Esther Boucicault Stanislas(FEBS). “I had to stay,” she says, alternating between the Haitiantongues of French and Creole. “On Mondays, I distribute antiretroviralsto our clients.” She also had prevention work to do, since withsoldiers come both rape and promiscuity. When Boucicault (pronouncedBOO-see-koe), now sitting safely in POZ’soffices during a recent New York visit, recounts how she moved freelythrough St. Marc by bribing rebel and government forces with rubbers,her translator and friend, Elsy Mecklembourg-Guibert, does adouble-take. Boucicault, visibly tired from a previous speakingengagement, gives a rare smile.
Heroism has long been part ofBoucicault’s job description. Approximately 6 percent of Haiti’s 8.4million people have HIV, the highest rate outside sub-Saharan Africa.In 1999, Boucicault became the first person in Haiti to publicly sayshe was HIV positive, announcing her status on a series of Haitianradio and TV shows intended to educate the public. In the firsttelevision interview, the host nervously asks Boucicault, who is offcamera, if she is sure she wants to show her face. After she says yes,she appears on screen, calm and professional in a plaid blazer,lipstick and her trademark hoop earrings. “I’m not afraid,” she says.
Haitiansgreeted her disclosure with astonishment. Here was a healthy-lookingmiddle-class woman talking frankly about a dread, sexually transmitteddisease. Haiti is the western world’s poorest nation—some 75 percent ofits people live in poverty—and its combination of Catholicism andvoodoo have contributed to profound AIDS stigma and misconceptions.Many Haitians believe that AIDS is a curse, perhaps bought by an enemy.“Some people thought I was lying,” Boucicault says, “or that thegovernment had paid me.”
Some time after, in the capital city ofPort-au-Prince, she addressed a teen audience—which initially jeeredher, then fell into stunned silence as she told her story.Mecklembourg-Guibert has seen the same thing happen with Haitianaudiences in the U.S. “When Esther starts to speak, people won’t payattention, or they’ll mutter about not believing her. By the end,they’re listening.” Since Boucicault’s revelation, she has becomefamous in Haiti. Strangers stop her on the street to tell her that theyhave HIV. She shares with them her own health woes: A regimen ofKaletra, Trizivir and Viread controls her HIV, but she suffers fromboth diabetes and neuropathy.
Boucicault’s work at FEBS startedher on the path toward her groundbreaking announcement. She founded theonce-tiny organization in 1996, shortly after she was diagnosed. It nowprovides services to roughly 500 people, including 150 AIDS orphans,250 people living with HIV and 110 people on HIV meds. They come to thecozy two-story home that houses FEBS to get all that they can—meds,condoms, support and nutritional information.
Mostimportant, though, is Boucicault’s emphasis on PWA empowerment—agreater challenge, she says, than access to meds. “I want to see myclients reintegrated into society after having dealt with the fact thatthey have HIV,” Boucicault says, “I want them to be able to continueworking.” One of Boucicault’s many slogans: “AIDS is not an end, butthe beginning of a new way of living.” “Now people with HIV can look atEsther and not feel ashamed for themselves,” says Mecklembourg-Guibert,a New York City–based Haitian who founded EMG Health Communications, ahealth-education organization that does AIDS outreach to Haitians inthe U.S. and works with FEBS clients.
As a result ofBoucicault’s message, FEBS has forged a widespread network of Haitianswho embrace their identity as people living with HIV. “There are only ahandful of strong PWA organizations in poor countries, like SouthAfrica’s Treatment Action Coalition or Uganda’s AIDS SupportOrganization. FEBS is on that level. It’s like a nonreligiousministry,” says Joia Mukherjee, MD, medical director of Partners InHealth (PIH), a Boston-based global treatment organization. PIH, whichpioneered AIDS treatment in Haiti by creating a community-based systemof regular visits to patients’ homes, chose to work through FEBS tohelp bring HIV meds to the St. Marc region because Boucicault alreadyhad a similar system in place. “Adapting the PIH model of [treatment]delivery was very easy to lay over that,” says Mukherjee. Paul Farmer,MD, world-renowned cofounder of PIH, credits Boucicault not only withhelping to pave the way for HIV treatment in Haiti but with galvanizingPIH’s own HIV positive leaders. “She is a beacon of hope and dignity,”he says.
Boucicault doesn’t know where she got the nerve tobecome the first person to publicly disclose in Haiti. She says she’ssimply “a naturally energetic person who likes to take on challenges”and that she is lucky to have a supportive family, including her twodaughters, Michelle, 22, and Stephanie, 10. Her modesty belies not onlyher trailblazing accomplishments but her own painful AIDS history. Whenasked to tell it, she drops her head wearily and pleads withMecklembourg-Guibert to do it for her. She eventually agrees to tell itherself, but entirely in Creole, the daily language of most Haitians.She warns she has let herself forget dates and details because “thecase is closed.”
In the early ’90s, Boucicault’s husband, BobStanislas, a rice-factory director, fell gravely ill. As is common inHaiti, Boucicault visited a houngan,or voodoo priest, hoping he could lift whatever curse was causing theillness. “I paid the houngan thousands of dollars,” she says, “and hedied anyway.” Suspecting that her husband might have died of AIDS—hehad both pneumonia and tuberculosis—Boucicault got tested, but theresult was negative. Then in 1995, Boucicault had a son with a newpartner. While she was pregnant with their second child, Stephanie, herson died at nine months of age. Suspecting again that the cause wasHIV, Boucicault and her partner both got tested; he was negative, butBoucicault was positive. She believes that both her husband and sondied of AIDS and that her first HIV test was incorrect. Happily,Stephanie cleared the virus after she was born, but Boucicault’s healthsuffered. “I had every infection you could have—shingles, herpes, TB,”she says. Friends in France sent her HIV meds, and Boucicault’s healthstabilized in six months. She immediately went about founding FEBS.
Threeyears later Boucicault decided to go public with her status. On a visitto her daughter’s pediatrician, she told him she wanted to speak outabout her experience with HIV; he helped orchestrate the 1999 radio andTV interviews. Despite her remarkable history, Boucicault remainsrelatively unknown outside Haiti. Mecklembourg-Guibert wants to changethat: EMG Health brings Boucicault to the U.S. regularly to educateHaitian immigrants about HIV. Boucicault maintains that AIDS stigma canbe worse in the U.S., despite access to excellent care. “When I ask[Haitian] PWAs here to help me and tell their stories, very few arewilling,” she says.
Boucicault knows the U.S. is key in the fight against AIDS in Haiti. She’s not too modest to ask whether POZhas connections to celebrities who could help her raise AIDS awareness.She refuses to criticize the abstinence strings attached to PresidentBush’s PEPFAR millions: “Abstinence, fidelity and condoms—we say theyare three boats on the water. Just make sure you get in one. If not,then—pffft!—you sink.”
WhileHaiti’s political situation remains dire—United Nations–mandatedelections will take place in the fall—world governments recentlypledged a billion dollars in aid to the ailing nation; millions areearmarked for AIDS. The UN Global Fund will spend $35.5 million onHaitian projects. PEPFAR poobah Randall Tobias announced last winter,in the presence of Haiti’s interim prime minister Gerard Latortue, thatthe U.S. was giving Haiti $40 million in 2005, nearly double 2004’scommitment. FEBS, however, is far from swimming in money.Mecklembourg- Guibert says she gave a speech in which she mentioned thatBoucicault didn’t even have the use of a car, prompting the U.S.ambassador to donate one.
In the future, Mukherjee would liketo see FEBS “spinoffs.” Perhaps Boucicault’s daughters, who haveinherited her passion for fighting AIDS, could spearhead them. Michellestudies community medicine in the Dominican Republic and plans to workat FEBS. Stephanie, meanwhile, has been known to hold a FEBS megaphonein one hand and a box of condoms in the other and invite clients tohelp themselves. “I would like my daughters to someday run FEBS,” saysBoucicault, who gives another of her infrequent smiles when the subjectof her children arises. “But always with someone who is HIV positive.”
The Brave Lady of Haiti
In her first U.S. interview, the HIVer who broke Haiti's silence on AIDS sounds off on voodoo, George Bush--and how activism must put PWAs first