The Forgotten Epidemic

Posted in: News 2005-Older

BlackAIDS.org Reports

By Kai Wright

SANTO DOMINGO, Dominican Republic — Maria has seen worse days, to be sure. Three years ago, she was all but certain to become one of the estimated 35,000 Caribbeans killed by AIDS each year.

Her now 175-pound frame had wasted down to a flimsy 90 pounds. “She’s one that, without the drugs, would almost certainly be dead today,” says Dr. Ellen Koenig, who directs the Santo Domingo AIDS clinic where Maria now gets healthcare.

Maria tested HIV positive in 1993. Her husband found out first — and waited four months to tell her. “I couldn’t believe it,” she recalls. She was only 27 years old, she remembers thinking, hadn’t had any children, and now her life was over. “Dios mio.”

But Maria was one of the Dominican Republic’s lucky ones.

Maria and her husband found Dr. Koenig, who kept them alive by cobbling together a supply of the donated and diverted medicines that make their way into the island’s capitol city, largely through individuals and organizations in the United States.

Maria’s mother wasn’t so fortunate. She died of AIDS four years ago, before the family discovered a way to get her treatment. “She liked to drink a lot and didn’t take care of herself,” says Maria, though the clinic they took her to couldn’t offer much more than vitamins and healthy food anyway. “That’s why I’m so lucky. I had the opportunity that my mother never had.”

Americans are now well versed on the daunting challenges of sub-Saharan Africa’s AIDS epidemic. But the similarly acute condition just off our southern shores is much less discussed. The Caribbean has the world’s second highest HIV infection rate — 2.3 percent of the population, or nearly half a million people, is infected — topped only by sub-Saharan Africa. In the Dominican Republic, UNAIDS estimates 1.7 percent of the population is infected, but studies in poor, rural areas have put infection rates there as high as 12 percent.

For the vast majority of these people, the difference between life and death remains mere chance. In the Dominican Republic, the wealthy travel to Miami or New York City for care. Some middle and working class folks find ways to buy meds through family and friends in the States. The poor – particularly Haitians who toil for pennies in the D.R.’s sugar cane batays – simply pray they don’t get sick.

A complex web of international aid programs is working to reshape this reality. Indeed, the global movement to bring AIDS drugs to poor people is well represented in the Dominican Republic. But if the experiences of people with HIV/AIDS here is any indication, that hodge-podge movement remains a woefully inadequate response to the still building crisis.

Help Comes, But Slowly

In 2001, the world’s wealthy nations established the Global Fund to Fight AIDS, Tuberculosis and Malaria. The idea was to amplify individual donor efforts by bringing them together under one agency, which would then work one-on-one with poor nations. The lion’s share of the money has been targeted at AIDS.

From the first, controversy gripped the Global Fund as stakeholders wrestled over where and how to spend its resources – and over who should make such decisions, the donors or the countries getting the aid.

Not the least of the controversies surrounded the U.S. contribution. The Bush administration established its own unilateral effort and was reluctant to pump money into the Global Fund as well without guarantees of accountability. Its own program gives help with far more strings attached – not all generic drugs are approved; prevention money comes with restrictions on work with prostitutes, among other things.

Dr. Koenig remembers when she and her colleagues in the national laboratory turned up the D.R.’s first diagnosed HIV infection back in the mid-1980s. It was the late-1990s before she could actually treat anyone, by recruiting studies of new drugs to take place here.

But in January 2003, the Global Fund approved the Dominican Republic to receive $48 million in aid. The challenge, say local activists and service providers, has been translating that promise into actual drugs for dying patients.

Not until May 2004 did the Global Fund finally sign an agreement with the national body that was established to administer the money. By this June, two and a half years after the initial approval, the Fund had only released $5.3 million of its pledge.

The country’s heated 2004 presidential elections held up progress, says the United Nations, one of the Fund’s key players. And the Dominican government struggled to establish systems for administering the money that met the Fund’s standards.

Local observers also question the national government’s motives, pointing out the long history of rampant corruption in Dominican politics.

While patients and doctors awaited action on the Global Fund pledge, former President Bill Clinton’s foundation orchestrated a deal that brought Indian-made generics into the country beginning in late summer 2003 for around 800 people. Some drug manufacturers have also negotiated special, lower prices for the country. Clinical trials have offered others a route to care.

But all of these efforts added up to treatment for just a few hundred people.

Still Not Enough

Local care providers say things have changed suddenly in recent weeks. The money pipeline seems to be finally open.

“The last couple of weeks have been really wonderful,” gushes Dr. Carlos Adon, who helps Koenig run her Santo Domingo clinic. Today, he says, all of his patients are in treatment, largely through the national program, paid for by the Global Fund. Ironically, Koenig says the problem now is that the national program is pressuring the clinic to accept more patients than it has capacity for.

But even with the Global Fund money flowing, serious challenges remain. As of September, only 2,000 people were getting drugs, and the plan still calls for only 6,000 people to ultimately get them.

Eugune Schiff, the Caribbean coordinator of the AIDS treatment watchdog group Agua Buena, also notes that 17 of the country´s 26 treatment sites are in the capitol, which makes them virtually useless to the truly poor in the vast, rural areas that make up this island.

Even at those urban sites, crucial services remain out of reach. Tests used by doctors in the U.S. and elsewhere to determine what kind of treatment each patient needs cost more than even most working families make in a month. And some of the key medicines used to fend off infections that pray upon the weak immune systems of people with AIDS are simply unavailable here – at any cost.

Dr. Adon says he can do nothing for a patient with encephalitis, for instance. “They will die from it,” he somberly concedes. The necessary drugs just don’t come into the country. “There is no way we can treat them.”

That’s why Maria, though now healthy, is blind in her right eye. While sick a few years ago, she got an infection that causes blindness. It went wholly untreated because there were no drugs available – and there still aren’t.

She lost her sight slowly over the course of a year. “I really didn’t know what was happening,” she recalls. She soon discovered her doctors could do little to help. “There is medicine, but it hasn’t come to this country. And it is very expensive.”

So, like poor Blacks wrestling with HIV throughout the Caribbean, she learned to live with less. “I don’t see out of that eye anymore,” she shrugs. “I have one eye, not the other.”

Kai Wright is editor of BlackAIDS.org

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