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Struggling to Deliver on Promises and Assess HIV's Spread

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Science  28 Jul 2006:
Vol. 313, Issue 5786, pp. 480-481
DOI: 10.1126/science.313.5786.480

Epidemiological data are scarce, and outside of the capital, so are antiretroviral drugs

COATEPEQUE, QUETZALTENANGO, AND GUATEMALA CITY, GUATEMALA—Over the past 7 years, Luz Imelda Lucas, 31, has become entirely too intimate with despair. First, HIV took the life of her husband, who she says also infected her. His parents were certain she had become infected first. “They told me I killed him and that I was going to die and my children were going to die,” says Lucas, who lives in the southwestern town of Coatepeque. Lucas's youngest child died when she was 28 months old, she says. In 2002, Lucas's own days seemed numbered as her immune system bottomed out.

Arduous commutes.

Eduardo Arathoon says the centralization of HIV/AIDS care at clinics like his in Guatemala City is badly hurting many Mayans who live in remote areas and must travel long distances.

Then, in a stroke of great fortune, Médecins Sans Frontières (MSF) launched a new program in Coatepeque that offered free anti-HIV drugs. Lucas was selected as one of the first nine people in town to receive the medicines, and her health rebounded. Maryknoll sisters, Catholic missionaries who work in many countries, also hired her at their Proyecto Vida, which offers HIV/AIDS testing, counseling, and health care for infected people. Lucas officially is a nutritionist but is also something of a counselor. “I like to make it clear to people that having the virus, you can still be productive and continue living,” says Lucas, who has a new boyfriend, too.

By the end of 2005, some 5500 HIV-infected people in Guatemala were receiving antiretroviral drugs, says Annelise Hirschmann, director of the country's National AIDS Program. Five years earlier, the only people being treated were the wealthy minority who could buy their own drugs, the small percentage protected by the country's social security system, and the few who enrolled in clinical trials. Roughly half of the drugs today come from MSF; the rest are purchased by the government or through a $40 million, 5-year grant awarded to the country in October 2004 by the Global Fund to Fight AIDS, Tuberculosis, and Malaria. Hirschmann says many people who were once selling their homes and preparing to die are now looking for jobs. But she acknowledges that there are far too many people who either don't know they are infected or have no access to the drugs, and “there are a lot of people dying from AIDS.” Many sharply criticize the government for this because it passed a law in 2000 that said all Guatemalans had the right to treatment.

One obstacle is that outside Guatemala City, free drugs are available at relatively few centers. “Most everything is centralized in this city,” complains Eduardo Arathoon, who runs the Luis Angel García family clinic at Hospital San Juan de Dios in the capital. Arathoon points to an HIV-infected couple with their little girl. “The couple gets up at 3 a.m. and takes three buses to get here,” he says. The centralization particularly hurts Mayans, who make up about half the population and often live in remote areas.

These problems will soon be compounded: MSF is leaving the country, which has Lucas and many other patients worrying about their futures once again.

Guesstimations

The Joint United Nations Programme on HIV/AIDS estimated at the end of 2005 that Guatemala had 71,000 HIV-infected people and an adult prevalence of 0.9%. But as in the rest of Central American, a dearth of surveillance makes it hard to get a good fix on the extent of the HIV/AIDS epidemic there—and thus how best to target prevention efforts. “Epidemiology is not seen as that important,” says César Núñez, an epidemiologist based in Guatemala City who led the only in-depth studies of HIV's spread in Guatemala and other countries for the Central American HIV/AIDS Prevention Project (PASCA). “Countries and ministries of health are concerned that they have treatment for people in these countries. But we can't forget prevention either.”

Funded mostly by the U.S. Agency for International Development, PASCA worked in 2001 and 2002 with the Guatemalan health ministry to measure HIV prevalence in high-risk groups. In men who have sex with men, the study found a prevalence of 11.5%. Nearly half of those men considered themselves bisexual or heterosexual rather than gay, putting their female partners at high risk, too. Female sex workers overall had a relatively low prevalence of 4.5%, but that figure jumped to 14.9% in women who worked the streets rather than in brothels, discos, or other “fixed” establishments.

PASCA had hoped that Guatemala and other countries would continue and expand the studies. “We were not an epidemiological surveillance system; we're the spark,” says Núñez. But, says Edgar Monterroso, who heads the Guatemala City office of the U.S. Centers for Disease Control and Prevention (CDC), “none of the countries was able to pick up and do their own surveillance.” CDC is now attempting to help Guatemala do these studies.

In particular, no one has properly evaluated HIV's spread among the Mayans, says Monterroso. But a small study conducted at the Luis Angel García clinic suggests that incidence may be three times higher in Mayans, who are often treated as second-class citizens, than in ladinos. “We think that group's more vulnerable,” says Arathoon. Not only do many Mayans have trouble with Spanish, complicating prevention efforts, but they also have less access to health care in general. “We think that's where the epidemic will move,” says Arathoon.

Worried.

Luz Imelda Lucas fears that she'll lose access to the anti-HIV drugs that have saved her life.

A study of patients at the government-run Rodolfo Robles tuberculosis hospital in Quetzaltenango supports that assertion. Between 1995 and 2002, HIV prevalence in TB patients at the hospital—74% of whom were Mayan—jumped from 4.2% to 12%. As of May 2005, no antiretroviral drugs were available in Quetzaltenango, the country's second-largest city.

Tough transitions

No one knows how many people are dying because they do not have access to antiretroviral drugs, says the National AIDS Program's Hirschmann. And even some of those taking the drugs are concerned about their continued supply because MSF announced in July 2005 that it was phasing out its program in Coatepeque, which now treats 500 people. Lucas is worried that the government will not respond adequately, and some Guatemalan AIDS clinicians and government AIDS officials share those concerns. “MSF obviously did something really good because they brought treatment to a country that wasn't offering it,” says Hirschmann. “But they have created somewhat of a panic in patients on treatment. … I would be very afraid if I were a patient living with HIV and had to cross over to receive treatment from the government.”

Frank Doerner, MSF's chief of mission in Guatemala, says those fears were unfounded. “It was calculated pressure, but it was not playing with the lives of the people,” Doerner says of the charity's announcement that it would shut down its program. MSF earlier had successfully handed over a program in Guatemala City, Doerner notes, and MSF says it will stay longer in Coatepeque if the transition is not going smoothly. “After 5 years of being here and treating thousands of people, we showed how it was possible,” says Doerner. “Now it's really up to the state to show that it's interested in taking over the responsibility that belongs to them.”

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