A Deadly Stigma in Caribbean

By Karen DeYoung, Washington Post, Tuesday 19 June 2001; Page A01

As AIDS Rate Soars, Infected Are Shunned

PORT ANTONIO, Jamaica—Claudia went three times to be tested for the virus that causes AIDS, but she never had the courage to pick up the results. So it wasn't until the third test, when the technician who took her blood said he could tell she was infected just by looking at her, that she knew it was true.

By then, everyone else in her village, perched in the steep Blue Mountains overlooking this northeastern coastal town, knew it too.

Pretty, quick-witted Claudia, then 28, suddenly became known as the AIDS lady, shunned in the place where she was born and had lived nearly all her life. Her mother, son and siblings stopped speaking to her and threw her out of the family home. When she moved into her protesting grandfather's two-room cottage, he shouted insults and refused to go near her. She was poor, and costly treatment was beyond reach.

By the last Saturday in May, about 18 months after her last test, Claudia lay alone in the crumbling, dimly lit Port Antonio General Hospital. Her eyes, glazed and unfocused from morphine, seemed unnaturally large in her gaunt face, and she was having trouble breathing. But Claudia wanted to talk—about her children, Ainsworth, 14, and Felicia, 12; about whether a visitor could bring some Immodium to the hospital for her diarrhea; and about her coming birthday on June 5.

Two-thirds of all those diagnosed with the AIDS virus in the Caribbean are dead within two years, and Claudia was no exception. She died on June 4, the day before she was to turn 30, another victim of the pandemic that has hit this region of small, sun-drenched countries harder than anywhere outside of sub-Saharan Africa.

AIDS is already the leading cause of death in the Caribbean for those aged 15 to 45, and the number of cases is growing at an exponential rate, doubling every two or three years, said C. James Hospedales, director of the Caribbean Epidemiology Center, the leading regional institution monitoring the disease.

According to official figures, at least one in every 50 people in the Caribbean, or 2 percent of the population, has AIDS or is infected with HIV, the human immunodeficiency virus, which causes AIDS. In many countries, the rate is significantly higher—more than 4 percent in the Bahamas, 13 percent among urban adults in Haiti, and as many as one in every three or four people in certain population groups regionwide, including those who sell sex to tourists.

Although the Caribbean's infection rate is a fraction of that in the worst-afflicted African countries, it is nearly four times that of North America and South and Southeast Asia, the regions that come next on the list.

The Caribbean epidemic has remained shrouded in denial at home and largely ignored by much of the rest of the world, which has not responded with the high-level conferences, pledges of money and cut-price drugs that are being offered in Africa.

None of the major private foundations that are promising and providing AIDS money for Africa, nor the leading nongovernmental development and humanitarian organizations that operate programs there, has a significant presence in the Caribbean. The one exception is Haiti, where indices of poverty and AIDS reach African levels and the world's response has been greater.

In recent months, there have been glimmers of international concern. Secretary of State Colin L. Powell, the son of Jamaican immigrants, rarely fails to mention the Caribbean whenever he is asked about AIDS in Africa, and the United States and a handful of other developed countries have stepped up modest aid programs. In April, the World Bank opened a $150 million, low-interest loan window for HIV-related projects, and the Atlanta-based Centers for Disease Control and Prevention announced this month that it would provide increased technical assistance to the Caribbean Epidemiology Center.

As in Africa, victims in the Caribbean are overwhelmingly young and poor, and increasingly female. The majority, like Claudia, contract the disease through unprotected heterosexual relations in societies that, according to a report by the United Nations and regional organizations, tolerate—and, in the case of men, even encourage—multiple sex partners and sexual activity at an early age.

And, as in Africa, there is little access to the expensive antiretroviral medicines that can keep the afflicted alive and healthy. Far out of the reach of most government budgets, the drugs are available only to individuals who can afford the $10,000-a-year treatment, administered by private physicians here or those a short flight away in Puerto Rico or Miami.

Nonetheless, antiretroviral medicines are a key ingredient of any successful strategy against the Caribbean epidemic, according to experts across the region. Some of the most frequently cited impediments to widespread treatment in Africa are far less of a problem here. Most countries have functioning, if severely under-funded, public health systems; laboratory testing facilities are available; and public education and literacy levels are high.

When the antiretroviral drugs are widely used, they produce results, as has been evident in the Bahamas. Although it can be difficult to draw conclusions because the HIV incubation period is lengthy, experts note that the Bahamas is the only country in the region other than French island territories to offer universal antiretroviral treatment over the last several years, and is the only country in which the HIV infection rate, as well as the number of AIDS deaths, have decreased in recent years.

Far from providing universal antiretroviral treatment, many Caribbean governments, whether from lack of will or resources, do not even provide drug therapy for more than a handful of HIV-infected pregnant women to prevent mother-to-child transmission. There were 9,600 infected children in the Caribbean in 1999, according to U.N. estimates, and the Caribbean Epidemiology Center estimates that overall child mortality will increase 60 percent by 2010 if treatment programs are not improved.

In the absence of treatment, the certainty that AIDS patients will eventually die has led societies across the region to ignore and shun the afflicted. Discrimination and ignorance, in turn, hasten the spread of the disease, and deepen the toll. Stigma and providing treatment are inextricably linked all over the world, said Dorothy Blake, who headed the Geneva-based World Health Organization's HIV/AIDS office before turning to community AIDS work in her native Jamaica. But here, especially in the Caribbean, if people think it's a fatal disease, that person becomes a throwaway person.

Most Caribbean leaders rarely speak about AIDS. Many fear the political cost of offending highly conservative, strongly religious societies in which, despite all evidence to the contrary, AIDS is still dismissed as a disease of homosexuals and prostitutes. At the same time, there is a fear that if you talk about AIDS, tourists will not want to come, said Claudette Harry, a Guyanese physician who heads the Pan American Health Organization office in Trinidad. A lot of people come here for sun, sand and sex, and it has the potential to disrupt the market.

Yet economic disaster may be unavoidable. According to a recent study by the University of the West Indies Economics Health Unit, if even the lowest current projections of infection and death rates hold true, shrinking workforces and AIDS-related declines in foreign investment and tourism will drag the region's gross domestic product down by at least 5 percent by 2005.

Prodded during the past year by the Caribbean Epidemiology Center and the United Nations, every country now has a national structure in place to deal with AIDS and has agreed to a regionwide, five-year strategic plan. But the level of government commitment varies widely. In Barbados, for example, the national AIDS program has been made part of the prime minister's office, and major new funding has been pledged. But in Trinidad and Tobago, government funding for the national program has declined steadily and a staff of 10 has been reduced to four—including a driver and a clerk. The volunteer-staffed national AIDS hot line, begun with three telephone lines, now can only afford two. 'Complacency and Hypocrisy'

Poverty, both of individuals and of governments, plays a big role in the spread of HIV in the Caribbean, as it does in the rest of the developing world. Other factors are unique, such as the 20 million outsiders who travel here each year and a high rate of internal migration. The frequency with which islanders travel from country to country makes it difficult to contain virus hot spots. Just as many tourists leave their inhibitions behind on vacation, islanders are believed more likely to engage in risky sexual behavior away from home.

But a wide range of experts has concluded that denial and discrimination prevalent throughout the islands are among the biggest impediments to stemming the spread of the disease. Jamaica's chief medical officer, Peter Figueroa, said the region suffers from stigma that drives people underground and a lot of complacency and hypocrisy in the population.

Helena Joseph, who lived in the United States for many years before returning to run Trinidad's AIDS hot line and work as a private-sector personnel counselor, said these small islands remind her of conservative, small-town America, where certain things are simply not discussed. Public education programs, while fairly aggressive in some countries, are often more like Jamaica's AIDS is death slogan, rather than calls for changing behavior.

When a popular Jamaican reggae musician in his mid-thirties died recently, reportedly of pneumonia, it was widely assumed it was caused by AIDS, but no one said it out loud. When wealthy guests at a recent Caribbean dinner party were asked why their prime minister doesn't say or do more about the epidemic sweeping his country, they said he is afraid any AIDS talk will fan rumors he might be gay.

There is no Caribbean Magic Johnson, and no Edwin Cameron, the South African Supreme Court of Appeal justice who became the first senior official in that country to announce he was living with HIV. In much of the Caribbean, to acknowledge HIV infection often means abandonment by family and friends, job loss, expulsion from school, and sometimes even denial of the scant medical care that is available.

It's not necessarily that people believe it's contagious, but that you must have done something bad to get it, said Judy Niblett, who supervises the Catholic-run Cyril Ross Home for HIV-infected children in Trinidad. Many of the 31 children there were left by family members; some were abandoned in hospitals or in the street. Although the government offers no program for them, 15 of the children are on antiretroviral treatment, paid for by donations from the Trinidadian diaspora in New York and administered by an immigrant Nigerian doctor who is one of the few in the country to treat HIV patients.

People who live with HIV are nonexistent to the general public . . . starting with the medical profession, Niblett said. They are not treated fairly in hospitals. If you go in and say you are HIV-positive, the message spreads through the ward like wildfire. . . . 'Stay away from this person.'

A lot of Trinidadians refuse to go to the general hospital, Niblett said. They say they'd rather die in the street.

Although HIV tests are widely available throughout the Caribbean, there are not more people coming in for testing, said Nicola Taylor, a program officer in the sexually transmitted disease division of the Caribbean Epidemiology Center. In a small country, if you go into a clinic or a hospital to request an HIV test, in two hours everybody knows it.

Most people are tested only when it is required—to join the military, to get a job or to get a U.S. visa. The rest usually figure it out when they develop symptomatic AIDS, long after they are likely to have infected others. We had people come into our office so damn sick, they just fell over and died, Helena Joseph said.

Yolanda Simon, an activist in Trinidad and Tobago, is one of a handful of HIV-positive people who have been willing to disclose their status in that socially conservative, two-island country whose 1.3 million people are neatly divided between the Roman Catholic and Hindu religions. Both faiths oppose condom use and sex education. As for those who become sick, she said, If you can afford it, you go abroad and buy drugs. Otherwise . . . you just go away, and people start to say, 'Why, I haven't seen John for months.' And then somebody whispers, 'He died.'

The Catholic Caritas AIDS Mission in Port of Spain, Trinidad and Tobago's capital, is the only institution in the country that provides home care for those dying of AIDS-related diseases. But in 10 years of operation, as the infection rate has tripled, only about 60 families have called on the mission for help, usually within a day or two of death.

I remember one case where a family had pulled up the floorboards and left him to lie on the dirt floor so the wood they walked on wouldn't be contaminated, said Caritas head Malcolm Joseph. Another time, there was somebody who had been put in a cowshed. And another family had walled off a room in their house—the children hadn't been allowed to see their mother for weeks, they could only hand her things around the side. Hazardous Behavior

In Jamaica, we listen to music about sex, we dress sexy and we dance sexy. But nobody talks about sex, said Verity Rushton, who heads the quasi-governmental National AIDS Committee. But what nobody talks about, most people apparently do—early, often and with many others.

The average age of first sexual experience in the Caribbean is 12 to 14. Many men and women have multiple sex partners; social and cultural norms condone and even encourage this, according to last year's report by the Caribbean Task Force on HIV/AIDS, the most comprehensive assessment compiled by U.N. and regional organizations.

For men, it's what some still call a hangover from slavery days, said Brendan C. Bain, head of the University of the West Indies Community Health Department and a leading researcher on the behavioral causes of the spread of HIV. Men are . . . encouraged to move around and procreate. . . . Some men are very proud of having multiple offspring by various women. The culture, until fairly recently, has not endorsed male responsibility.

Out-of-wedlock births are common throughout the region—only 15 percent of children in Jamaica are born to married couples, according to Figueroa, the Jamaican chief medical officer. For women, what the task force called emotional and socioeconomic dependence on men . . . often compounded by high levels of sexual violence are well-traveled routes to HIV infection.

Although most young men report having their initial sexual experience with someone their own age, a large percentage of young women first have sex with older men. Across the Caribbean, HIV infection rates among females 15 to 24 years old are two to four times higher than those of all other female age groups in the region, and three to six times higher than those in males of the same age.

As in much of the rest of the world, AIDS first emerged here among male homosexuals, who are still believed to account for a significant percentage of new infections. Yet fear and hatred have driven the gay community so far underground that researchers and public health workers have a hard time even finding it. A 1998 regional study by the Caribbean Epidemiology Center, reissued last year, reported that very little is known . . . about the [gay] population, where they are, who they are, and what their specific needs may be.

It's very difficult to find someone to talk to, Bain said.

In Jamaican prisons, where the infection rate has gone from zero to 20 percent in the past 15 years, more than 20 men were beaten to death by fellow inmates in 1997 riots caused by rumors that authorities would begin making condoms available.

I came out recently and said we should legalize homosexuality, said Jamaica's Figueroa. The answer, quoted to me, was Romans 1, the Biblical chapter condemning men who burned in their lust one toward another. It sends them berserk, Figueroa said of his government colleagues.

Throughout the region, it is common for homosexual men to adopt heterosexual lifestyles as a cover. Homosexuality rates are believed high, Figueroa said, but because homophobia is so high, most take on a girl, increasing the risk of transmission to women and children.

Prostitution is similarly widespread, well entrenched and increasing throughout the region, often driven by economic needs, according to the Caribbean Task Force. But the fact that prostitution is illegal and culturally reviled throughout most of the Caribbean has made it difficult to launch education programs in that highly infected segment of the population.

A year or so ago, we organized a meeting with sex workers in Barbados to discuss HIV prevention, said Caribbean Epidemiology Center director Hospedales. What happened? The police raided the place. That's a real supportive environment.

Health officials estimate that there are few people in the Caribbean who are unaware of the dangers of AIDS. Just about anybody can tell you how you get it and how you prevent it, said Claudette Harry, a Guyanese physician who heads the Pan American Health Organization.

Yet the belief that it is something that happens only to deviant others—a belief unshaken by education programs and buttressed by the reality that most people with AIDS simply disappear from sight—means that relatively few take regular precautions against it. The low level of condom use varies little among countries with extensive education and free distribution programs, such as the Dominican Republic, and places like Trinidad and Tobago, where religious and cultural impediments restrict availability.

What is the source of this epidemic? Hospedales asked rhetorically. It is people who are HIV infected. The things that bring us to that source are having a system of care and support, destigmatization, treatment when you get sick.

The current situation in the Caribbean might be different, he said, if much earlier on we had put in place a strong system of care. But it was always, 'These people are bad. They deserve what they get.'