An Epidemic Built on Ignorance

“Best to stay away from that one.”

That was the whispered warning about Liony Accelus when neighbors, fellow drivers on the tap-tap bus runs and even some lifelong friends concluded that the evil eye had given him AIDS.

“They thought it was a voodoo spell that was making me sick,” the 36-year-old father of four said of the time, just two years ago, when he weighed 105 pounds and was too weak to hold his head up. “I thought so too, because I was having so many mechanical troubles with the van as well.”

Haiti’s AIDS epidemic, fueled by ignorance, rages on despite education and medical breakthroughs that allow people in wealthier countries to live with the disease. Compounding the suffering of the 350,000 Haitians infected with HIV, is an ingrained prejudice that tends to cast the ill as defective and not worthy of sympathy or respect.

Although progress has been made in lowering the incidence of new infections in the last two years, breaking the vicious cycle of poverty that propels the AIDS epidemic is such a herculean task that it daunts even the most committed relief workers. And an effort to broaden the use of lifesaving antiretroviral drugs has become enmeshed in the bitter and divisive political crisis gripping the country, with many foreign relief programs refusing to provide aid directly to a dysfunctional government, instead putting it in the hands of nongovernmental agencies that are criticized as ineffective.

At least 30,000 Haitians die of AIDS complications each year. More than 100,000 are too sick to care for their children, leaving 200,000 minors abandoned, many of them living on the streets of Port-au-Prince, the overcrowded and staggeringly impoverished capital. They sleep in alleys flanked by mud-laden mounds of trash and overflowing sewers, begging or stealing food from other slum dwellers, coming of age without schooling or much prospect of employment.

It is these lost children who enter in ignorance the most vulnerable age group for HIV infection: the 15- to 24-year-olds who make up half of Haiti’s population of 8.5 million.

Some Signs of Progress

The percentage of HIV-positive incidence among those tested for the virus that causes AIDS has been on the decline for more than a year from a 6.1% zenith, said Paul Farmer, a physician and anthropologist who has spent more than 20 years in medical relief work in Haiti. The decrease suggests that massive efforts undertaken to encourage safe sex may be having some influence.

Still, in Haiti, home to 90% of all AIDS patients in the Caribbean, more than 100 people die of the disease every day, according to the Washington-based Academy for Educational Development.

Haitians in the countryside have begun learning to embrace the victims of AIDS, many of whom return to their native villages to die after despairing of getting treatment in the cities. That nascent rural solidarity bucks an urban tide of discrimination and stigma, Farmer said.

He complained that the Haitian public health community was slowing down the introduction of antiretroviral therapy, arguing that the limited funds should be spent on infrastructure and other health aid that would help people with curable diseases. “They say you can’t use these drugs in places like Haiti because of the lack of healthcare infrastructure and the risk of developing resistance,” Farmer said. “But we can use these drugs, and we have to use them. It’s the job of a doctor to take care of the sick.”

A passionate campaigner for antiretroviral therapy for the tens of thousands here who need it, Farmer demanded to know: “Who are we saving this for?”

Farmer has been fighting back on his own, through the Boston-based Partners in Health nonprofit program that has him dividing his time between a Harvard Medical School teaching post and a clinic he founded in the Haitian village of Cange. He began treating 60 local AIDS patients in advanced stages of the disease in late 1998 with medicines bought with donated money.

The therapy is now available to more than 2,000 people nationwide through a program Farmer created from an existing tuberculosis treatment and monitoring network. Each day, 700 deputized community health workers fan out across the mountains to deliver the lifesaving pills directly to AIDS victims. The success of the Cange program has reinvigorated prevention efforts, Farmer said, and he believes it has also helped reduce the stigma of AIDS in the countryside.

“If you have access to care, it’s a whole different ballgame with stigma,” Farmer said. He argues that showing AIDS patients they can live with the disease is the best way to get them to face it.

That’s where AIDS survivors like Accelus are coming to the fore. He and three others receiving antiretroviral therapy through a program subsidized by foreign aid have appeared in a groundbreaking public-service documentary.

“The video has had a tremendous impact. A lot of people are now willing to be tested because they see that even if you are HIV-positive, your life can be saved,” said the gangly former driver, who is now working as an AIDS treatment advocate. In the 15-minute film, he advises those who suspect they may be infected to see a doctor, not an houngan, or voodoo priest.

Even those who know to seek medical help say they often meet with rejection. Despite a decade of education aimed at dispelling misconceptions about AIDS, healthcare professionals have been known to turn away the infected.

Beaujour Saurel, an electrician diagnosed as HIV-positive five years ago, suffered a cut on his arm last year that sent him to General Hospital, the main healthcare facility in the capital.

“I told the doctor in the emergency room to put gloves on because I’m HIV-positive,” Saurel recalled. “He refused to treat me. He just walked away.”

Such incidents, though said to be declining, drive efforts by advocacy groups to establish a network of specialized AIDS clinics throughout the country.

“In Haiti, there are no laws protecting the rights of AIDS patients. Employers can ask workers to get tested and fire them if they refuse,” said Jean-Paul Milord, a human rights advocate with the Assn. of National Solidarity for AIDS Patients.

Many Keep Silent

The association chronicles incidents of discrimination and lobbies for legal protections. But its activists complain that too few Haitians are willing to risk public disclosure of their illness to complain about mistreatment. Milord recalled a recent case in which a woman was fired from her job because she was HIV-positive. She refused to complain to authorities for fear her husband would lose his job if her infection became known to his employer.

In the United States, employers are prohibited from intruding into workers’ health matters or terminating employees on the grounds that they are HIV-positive.

“It’s a big problem in an atmosphere of such high unemployment,” said Marie Yolaine Pierre, another association member, referring to the joblessness afflicting as much as 80% of Haiti’s workforce.

“The main reason is fear. Stigmatization and discrimination are very strong in Haiti, and people don’t see the benefit of disclosing their illness when they are unlikely to get treatment.”

The Assn. of Industries in Haiti disclosed in its watershed report, “Workplace Policy on HIV/AIDS,” drafted last year, that employers’ costs of dealing with infected employees are staggering compared with the costs of prevention. Industries spend about 15 times more on healthcare, sick leave and funeral attendance than on education, the employers group reported.

Members of the group are among a vanguard of Haitian employers to embrace a commitment to fight discrimination against those with AIDS by adopting a policy worked out by the Academy for Educational Development.

The program covers about 7,000 factory workers in Port-au-Prince, estimated Gessy Aubry, Haitian director of the project, which also operates in the Dominican Republic, India, Nigeria, Zimbabwe, Ukraine and Vietnam.

With so many Haitians jobless, employers have had little problem replacing workers who contract HIV. But growing numbers of young managers and factory owners are taking a more sympathetic approach to victims of the epidemic sweeping their country, Aubry said.

“People say employers don’t care, but that’s not true,” she said. “I’ve encountered a number of employers who have kept an HIV/AIDS employee up to the last minute because they know there’s no state healthcare for them once they leave. It’s not the employers but the co-workers who tend to stigmatize HIV/AIDS workers, and that’s due to a lack of education.”

Workplace policies of the type being pushed by Aubry focus on creating awareness about how the disease spreads and encouraging workers to use condoms and limit their number of sexual partners.

Though she said she saw progress in AIDS prevention, Aubry lamented that there wasn’t a single specialized treatment center for people in advanced stages of the illness. At least three clinics are needed in Port-au-Prince alone, she said, to provide testing, counseling, medication and hospice care for those nearing the end.

The Bush administration’s appeal to AIDS intervention workers to emphasize abstinence has drawn criticism as an impractical approach.

“In any poverty-ridden country, sexual activity is the one thing people have that is enjoyable and free,” Aubry said. “How are you going to tell a person like this not to have relations?”