Perspectives in Health Magazine
The Magazine of the Pan American Health Organization
Volume 7, Number 1, 2002

Facing the Music

by Josh Jackson
 

 Young dancer
A young Garífuna woman dances to traditional punta music. AIDS is a growing threat to these members of Honduras' largest minority.   (Photo ©Nestor Salavarría & ODECO)
The Garífuna fishing villages that dot Honduras' northern seacoast have long been known for their unique and rich Afro-Caribbean culture. Now these same communities face a new, less welcome distinction: having the highest incidence of HIV/AIDS in the country. The struggle to cope with the AIDS epidemic-and to prevent it from getting worse-is beginning to move these proud African-Amerindian descendants from collective denial to acceptance and action.

Some four dozen people have gathered for an AIDS awareness meeting in the Garífuna community of Limón, on the northern coast of Honduras. Dr. Delfi Valentín, a local physician, begins her class by asking the assembly--teenage girls, tough-looking young men, and concerned mothers--who has family living in New York.

More than half raise their hands.

Valentín follows with another question. Who in the class has family members with AIDS or has lost family to the disease?

Almost the same number of hands go up. Valentín confides later to a visitor that the show of hands would probably have been even greater if not for the stigma associated with AIDS.

Among a people who initially reacted to the presence of HIV/AIDS in their communities with almost universal denial, Valentín's community AIDS meetings are something of a triumph. They suggest that slowly but surely, the Garífuna are facing a truth that is both sad and alarming: the cumulative rate of AIDS cases among these descendants of Africans and Amerindians is nearly 15 times the national rate. More than 8 percent of adult Garífuna test positive for HIV, four times higher than the national average. "This epidemic is decimating their population," says Dr. Nestor Salavarría, codirector of a local AIDS prevention project.

 Doctor talks to AIDS awareness group
Dr. Nestor Salavarría talks with members of the local AIDS awareness soccer team. While some Garífuna are still trying to come to terms with the AIDS crisis, others are joining efforts to try to stem the epidemic's tide.   (Photo ©Josh Jackson)
The good news is that more and more Garífuna and their allies are today trying to do something about the problem.

Some 100,000 Garífuna populate the northern coastal departments of Honduras, making them the country's largest minority. Their African ancestors came to the Caribbean on two Spanish slave vessels that shipwrecked on St. Vincent in 1635. There the Africans intermingled with Amerindians, and when the British won control of the island in 1797, their descendants, the karaphuna, were deported to Roatán, off the coast of Honduras. From there they emigrated to mainland Honduras via Trujillo, then spread up along the coast into neighboring Guatemala and Belize.

The union between Africans and the Amerindians living on St. Vincent left the Garífuna with a unique culture and ethnicity. Their still widely spoken language is based on the Amerindian languages Arawak and Carib, but also incorporates words from French, Spanish, and English. Their traditional punta, a frenetic courtship dance accompanied by wooden drums, conch shells, and maracas, has been electrified into "punta rock" and is today admired by music lovers around the world.

For two centuries, the Garífuna subsisted primarily through fishing and farming, later growing bananas as a cash crop and selling mahogany. During the 20th century, they were a key source of labor for Honduras' banana exporters.

But in recent decades, the Garífuna's search for work has increasingly taken them to the Honduran cities of La Ceiba or San Pedro Sula and beyond, to New York, Los Angeles, and New Orleans. Even London now has a Garífuna community. This diaspora has intensified in the past ten years as foreign and domestic investors have voraciously bought up Garífuna property for tourism development.

When Garífuna migrants return home, as many do, they often bring more than just their hard-earned money; they also bring HIV/AIDS. "Labor migration is a root cause of the high incidence," says Dr. James Stansbury, a professor of anthropology at the University of Florida who has done field work among the Garífuna. "Young men with few opportunities for making a living in their home villages leave, both out of need and by custom. They find themselves living and working in areas where there is a high risk of contracting a sexually transmitted disease." He notes that one out of five commercial sex workers in San Pedro Sula are HIV-positive, according to a recent study. New York City, where the greatest number of Garífuna emigrants end up, has more AIDS cases than any other U.S. city, according to the Centers for Disease Control in Atlanta, Ga.

Stansbury, who studied attitudes towards HIV/AIDS among Honduras' north coast Garífuna, found that most residents were able to identify the causes and symptoms of AIDS. The problem, he says, lies more with their perception that only people of low moral standing are at risk of infection. "Many of them link knowing about who you're getting involved with--saber con quien meterse--with the concept of prevention. People seem to be denying the link in infection, that people who they know, who are close to them, could be infected."

This culture of denial produces an unlikely statistical artifact: hardly anyone in communities like Trujillo or Limón "dies from AIDS," at least officially. They die from diabetes or cancer, psoriasis or even witchcraft--invented ailments or the opportunistic infections that accompany AIDS. A check of medical records at Limón's local clinic reveals only one death from AIDS. Dr. Valentín, who often works there, acknowledges that doctors and nurses often yield to pressure to mask the true cause of an AIDS death, protecting the reputation of the deceased and his or her relatives, but skewing the data on the disease.

 Community health promoters
Community health promoters known as "multipliers" spread the message that AIDS can strike anyone who fails to take the necessary precautions.   (Photo ©Nestor Salavarría)
Coming to terms with their plight has been a wrenching process for most Garífuna, one that is by no means yet complete. Accustomed to varying degrees of discrimination from Honduras' largely mestizo society, some Garífuna at first charged bias and slander when confronted with news of their higher-than-average HIV/AIDS rates. But as the disease has claimed increasing numbers, Garífuna communities have begun to rise to the challenge. "People are talking more openly about it, especially the relatives of the infected person," says Mirtha Colón, a Garífuna AIDS activist living in New York. "Some support groups have been formed in the communities in Honduras, and relatives are looking for help for themselves. Here in New York, when we do an activity, participation is very positive."

For Yolani X., a health promoter from the town of Santa Fé, dealing with the pain and stigma of AIDS has a very personal trial. Before her father returned from New York with AIDS, her mother had never even heard of the disease. When lesions appeared on her mother's arms, Yolani knew she had contracted AIDS, but didn't have the heart to tell her. Yolani's two siblings initially rejected their mother out of fear and misunderstanding. She was sick for three years before following her husband to the grave a few months ago. In an interview, Yolani requested that her last name not be printed with her story.

Yet Yolani is clearly among the more "enlightened" Garífuna when it comes to HIV/AIDS, the result of training through an AIDS-prevention project led by Dr. Manuel Sierra, a professor of medicine in Tegucigalpa with two doctoral degrees from Harvard University. It was Sierra who first discovered the Garífuna's high incidence of AIDS, while heading the HIV.AIDS epidemiological surveillance program at Hondura's Ministry of Health. Sierra's studies found that some Garífuna communities had a cumulative incidence of AIDS cases greater than 2,000 per 100,000 inhabitants, compared with 134 per 100,000 at the national level. He also found that only 20 percent to 40 percent of sexually active Garífuna men regularly use condoms for protection against the disease.

Sierra's findings led him to approach his friend and colleague Dr. Nestor Salavarría, director of the Buen Pastor ("Good Shepherd") clinic, a medical mission based in the neighboring department of Olancho. Together, the pair designed a project and secured grants from UNAIDS through the Pan American Health Organization (PAHO) to raise AIDS awareness and promote preventive measures in Garífuna communities.

The project's focus has been on training community AIDS educators to teach their peers the truth about HIV/AIDS and the need for prevention. Sierra and Salavarría hired Valentin and another local physician and 10 AIDS awareness promoters from the community, who in turn recruited volunteers known as "multipliers" from different social and age groups. "The idea was to identify and mobilize local resources and to create empathy and awareness of the problem," says Sierra. "Those children and teenagers and others who were trained would continue to train others of the same interest and same age."

 Young Garífuna man in AIDS awareness activity
A young Garífuna man performs a sorting task designed to assess his understanding of AIDS and risky behaviors.   (Photo ©James Stansbury)
Staff members from the Buen Pastor Clinic developed educational materials with input from the community, based on the special circumstances faced by the Garífuna. By involving the communities' own members, the program has managed to continue work even after the international grants were exhausted.

"What was remarkable was that when we visited the communities with our own NGO resources," says Sierra, "most of the multipliers we trained are continually doing activities in spite of the absence of funding. They were really highly motivated."

Their incentive is often personal. One of the health promoters, Inez Alicia Arzú, joined the program after watching her 27-year-old sister die from AIDS. She had married a man who knew he was HIV-positive but didn't reveal the information to his new wife. He was dead within five months, and she followed two years later.

"It's important to get the message out," says Arzú. "We haven't seen the change in conduct that I'd like to see, but I think that it's getting into people's minds, and they're starting to take it."

Part of changing the Garífuna's mindset about HIV/AIDS has involved teaching ways that AIDS is not spread, such as by sharing a cup with someone who is HIV-positive or using the same toilet. Such myths have stirred fear, while the truth seems too often to meet with apathy.

"Knowledge about [the need for] condoms is there," says anthropologist James Stansbury, "at least in the communities that have been surveyed. But this does not hone in on the practices of young men who are initially at high risk. We don't know how available condoms might be when they are most needed or to what extent young men deny or misrecognize their chances for infection. Some good ethnography among Garífuna labor migrants would help us considerably to understand these questions better."

Stansbury also notes the need to address gender dynamics and "the issue of relative power for women in negotiating sexuality....Even when women understand and come to terms with risk, they may be faced with recalcitrant and defensive partners."

For Stansbury, one of the most significant aspects of the current AIDS-prevention efforts is in their focus on Garífuna youth. "PAHO and Buen Pastor's educational work with young people is essential, catching adolescents as they enter stages in the life course when they are exposed to greater risk," he says. "There is a need to better understand and reach young people before they become the migrants who return to communities infected."

 Garífuna community in Honduras
(Photo ©ODECO)
Meanwhile, the epidemic of AIDS is taking a mounting, if not always immediately apparent, toll. "You don't find out that children are AIDS orphans until it's pointed out to you or you ask around," notes Stansbury. "Indeed, nobody last year was certain about the number of orphans, other than to suggest that there were a lot. One also sees a lot of people one suspects are sufferers, but that's not clear without inquiry, and people don't advertise their seropositivity." Yet during a two-week field session, he says, "I did not interview one person who did not know someone who had either fallen ill or died from the disease. There were very few who did not have family members who were affected."

Compounding this human tragedy is the fact the victims are, as Stansbury puts it, "those who can least afford its consequences." The $180 per month that Yolani X. spent for single-drug therapy for her mother put a great strain on her family. But even that limited treatment is out of reach for most Garífuna, whose total household income falls short of its cost. The preferred "triple therapy" now recommended would run in excess of $1,000 a month and is simply not an option for the vast majority of Garífuna on the north coast. Instead, the best available treatment is simply compassion from the family while they watch a loved one die.

"Right now, most of the Garífuna with AIDS who receive treatment get it from family members who are living in the United States," says Sierra. "Usually they come from different sources, donations from people who probably died from HIV or through illegal activities. What really concerns us is that most of them don't receive an adequate schedule of drugs. They just take it until they run out, and they go without medicine. And then several months later, they receive another drug. Their situation is dramatic now."

Mirtha Colón's New York-based organization, Hondurans Against AIDS, is seeking to provide treatment for Garífuna AIDS patients in need. Colón realized that the disease was a growing problem among New York's Garífuna in 1992. "We knew that the epidemic was becoming a threat to the community because everyone here knew someone with AIDS. We went to Honduras and found out it was a problem there, too."

Colón established a relationship with ODECO, a grassroots women's organization in Honduras, and began raising funds to provide drugs for AIDS patients there. Together the two organizations are able to provide medication for a group of 40 Garífuna patients, but the need remains great.

Doctors Without Borders has also recently begun providing care for AIDS patients in northern Honduras, but education and prevention is still seen as the key to curbing the epidemic. More than 100 volunteers in the communities of Limón and Santa Fé have helped spread the word. Vicente Loredo, a health volunteer and head coach of the local AIDS awareness soccer team, believes they have had an impact. "Since this program first began," he said, "men in the fields have started talking about AIDS. The fear and respect for the disease is starting to sink in."

But the task remains, in many ways, an overwhelming one that has reached beyond individual health to the social structure of Garífuna communities. In one school Sierra visited, one out of four children had lost at least one parent to the virus.

As the Garífuna begin to face the truth about HIV/AIDS, observers note that their epidemic is reaching levels previously only seen in Sub-Saharan Africa. Meanwhile, Sierra and Salavarría are having to search for new funding sources to support their efforts. "The possibility exists to reduce this epidemic," says Salavarría. "But of course we need support to be able to continue this valuable project."


Josh Jackson is communications director for the Luke Society, a medical missionary organization based in Sioux Falls, South Dakota, USA.

Alone at the end

 Woman dying of AIDS
(Photo ©Nestor Salavarría)
The Garífuna are not the only Hondurans suffering from AIDS. Indeed, the country as a whole has the highest incidence of HIV/AIDS in Central America. Yet misunderstanding about the disease and its means of transmission is widespread. Dr. Nestor Salavarría, of the Buen Pastor Clinic in Olancho province, describes a visit to a mestizo woman dying of AIDS:

"Wanting to orient a colleague who was a recent medical graduate, we explored a community asking if there were any AIDS cases, and they told us 'yes.' We decided to walk toward the house, and when we arrived we found the door half-open and this woman lying on the bed. There was some food-beans and coffee-on the floor beside her. She told us that a nephew would come, leave the food, and run away. The woman was so weak she could not feed herself. Our colleague felt great compassion and placed a 100-lempira bill in the woman's hand, pressing her fingers around it. Two days later she died, and we went back to meet her family. Possibly they were hiding; we didn't find them. The neighbors told us they had buried her quickly and burned all her belongings. We found her bed burned, her clothing and even the 100-lempira bill partly burned."

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