Who are the contestants? One is 48-year-old Dora Esmeralda, who says she contracted the virus from her husband. The couple and their 17-year-old daughter have since sold most of their possessions and moved into a rent-free shanty on the edge of a ravine. She will have to compete against Hugo Mancilla, 22, who got the virus while he was living on the streets as a teenager, and whose mother still doesn’t believe he has it. “I get better,” he says. “I get worse.” Julio Cesar Carranza, a 45-year-old hairstylist who was infected by a gay lover, also will enter. “The lottery is fantastic,” he says. “There is no other way. There is no money.”
This is the story of winners and losers at the Luis Angel Garcia AIDS clinic, a well-kept, six-room office on the ground floor of the San Juan de Dios General Hospital in Guatemala City. But it is also a story about the scramble for cutting-edge medications in a country where there aren’t nearly enough of them to go round. And where doctors, as a result, try to persuade drug companies to use their patients as guinea pigs, or quietly suggest that patients look for drugs on the black market. Or raffle off drugs donated from the United States.
Because all these methods fall short, most patients go without the medicines and eventually waste away. As in the United States and Europe, AIDS in Latin America first appeared in the gay population and has since spread to women. The infection rates in the United States and Latin America are roughly the same, but without widespread access to the cocktail, Latin Americans are dying faster. The clinic tests 2,000 people a year, with 17 percent turning up positive. Several patients’ groups have formed in the last two years, hoping to persuade the government to follow the example of Brazil and Costa Rica, which now provide the medicines to nearly all AIDS patients. Similar campaigns are also underway in El Salvador and Honduras. Guatemala does offer some drugs, through its Social Security system. But the system covers just 13 percent of the total population.
So the clinic tries to take up the slack–for example, by enlisting its patients in drug studies. A major victory came in 1997, when the U.S. drug company Merck was looking for places to test whether its drug Crixivan was more effective when taken two or three times a day. The clinic was chosen as a study site, and doctors there began the search for 50 suitable patients. The sickest patients were tested first, then women and then the poorest patients. One man fell just shy of the borderline, but doctors tested him two more times until a suitable reading came up. In the end, Merck agreed to let 59 patients into the study.
The results show why the drugs are a godsend. The participants received a triple cocktail of Crixivan and two other drugs made by competitors. Carlos Enrique Garcia, a 48-year-old businessman, had chronic diarrhea, was losing weight and had to stop working. Within weeks of starting his 14-pill-a-day routine, “I felt myself stabilizing. I had the energy to go back to work.” Only one patient in the study died; doctors suspect he had been selling the medications.
But the yearlong study ended last September, and the leftover medicine will run out by the fall. Participants say they were led to believe that the company would supply them the drugs for the rest of their lives. Merck and the clinic doctors say the only promise was that the company would try to offer more drugs after the study, and the company did agree to provide Crixivan for five years. But the patients have to come up with the other two components of the cocktail on their own. That won’t be easy. Participants worry that if they go off the drugs the virus will emerge stronger and more resistant to the drugs.
That is the dilemma of providing the drugs at all. To be effective, they have to be taken consistently over a long period of time. Doctors at the clinic recommend that patients go on the drugs only if they can guarantee a steady supply. “We’ve had patients who have taken mortgages on their houses and sold their cars to buy these drugs,” says Dr. David Rodriguez. “When the money runs out, they have no house, no medicines, only the virus. And then they get sick again.”
Carranza, the hairstylist, recently came to the clinic with a package he thought would save his life. A friend had passed on some anti-retroviral drugs from the family of a man who had just died. But they were only a month’s supply, so the doctors had to tell Carranza that the best thing he could do was donate them. Esmeralda, the woman who lives in the shanty, has a bottle of Hivid, an antiretroviral drug, on her nightstand. It belongs to her husband, whose job as a debt collector qualifies him for the government program. They had been sharing the medicines he received, but doctors had to explain to her that half a dose is worse than no dose at all. So now she watches while he takes the drugs.
Other clinic patients rely on donated medicines. The majority have come from one man, Matthew Anderson, a 41-year-old family doctor in the Bronx who started collecting them and sending them to Guatemala three years ago. His wife is Guatemalan, so he would carry a suitcase filled with the medicines when they came to visit her family. He also loads up backpacks for friends traveling to Guatemala. Now working at the clinic on a five-month Fulbright research fellowship, Anderson is trying to develop an equitable system for deciding which patients receive them. Children get first priority, partly because three children can be treated with the medicine needed for one adult.
Among adults, the fight for drugs has become a battle for the sympathy of the doctors. But even when they are won over, the drugs are not always a lifesaver. Jose Javier Natarena pleaded with the clinic staff to give him donated medicines. He often went to the clinic three times a week, sometimes in tears. The level of virus in his body had been too high for him to participate in the drug study, and he worried about what would happen to his 12-year-old daughter if he died. He started taking the drugs, but two months later had to stop because he couldn’t tolerate the side effects. He died on June 3 at the age of 46.
While the lottery is the only hope for many patients, it has also raised myriad dilemmas. Should the sickest patients have priority? Should patients who can afford one or two drugs of the cocktail–but not all three–be eligible? What will happen at the end of six months? Will the winners have to enter a new lottery to continue receiving their drugs? By then, the patients in the drug study will have run out of two of the three cocktail components. Should they have priority in the next lottery since Merck is already guaranteeing them five years of Crixivan, the most expensive component of the cocktail? “I don’t know what is fair,” says Dr. Eduardo Arathoon, head of the clinic. “I have no idea.”
Not only the antiretroviral drugs are in short supply. On a recent morning, doctors from the clinic made rounds in the hospital wards, visiting their sickest patients. Twelve beds were lined up in each room; patients were hunched over stainless-steel trays of white bread and black beans. One was a man with a retinal infection. He needed a 21-day course of medicine to treat it initially and then would have to take drugs that cost more than $420 a month to save his sight. He had good luck that day. A local representative of the drug company sent over 16 days’ worth of samples of the medicine. “He’ll need it for the rest of his life,” Anderson said. “What are we going to do on day 17?” The drug he needs is not even a prize in the lottery.
