Unique clinic offers medicine, hope to AIDS patients in Cange, Haiti
CANGE, HAITI -- By the time Simone Saintilus fell ill, hers was a story all too common among the young women living in the wooden shacks and dusty villages dotting the region known as the Central Plateau.
A massive drought had hit the area around her village. Growing anything on her family’s small plot of land became impossible.
Traveling to the capital city of Port-au-Prince, a four-hour drive along washed-out mountain roads where, locals say, “the rocks have teeth,” she became a maid earning $15 a month.
After several months’ work, she grew ill and returned to her mother’s house. Saintilus had lost more than 50 pounds and was wasting away from the “slim disease” that was striking more and more young mothers and fathers in rural Haiti.
“I’d heard that there was this disease killing people and that if you got it, you were dead,” she recalled. “People lost all of this weight and then they died. So I was so depressed. I knew I was going to die like the others.”
Carried to the local clinic on a stretcher, she became part of a dreaded procession of women infected by the AIDS virus:
A former child servant who had been raped and infected.
A young street merchant so crippled by tuberculosis and severe edema she weighed less than 80 pounds.
All had left the country for jobs in Port-au-Prince. All came home poorer, sick and ready to die.
And that’s what saved them. In any other region of Haiti, Saintilus and AIDS patients like her at the Clinique Bon Sauveur would be dead by now. But thanks to a pioneering effort by a Harvard physician, Haitians here are receiving the same expensive AIDS drugs that are prolonging lives in the United States and Europe.
Using trained counselors, the clinic distributes and monitors the daily drug regimen of AIDS patients scattered in small villages throughout the rugged mountains of the Central Plateau. The drugs are provided free — no one here could afford them — with a regular series of checkups. And as more people are developing full-blown AIDS, the clinic is expanding its efforts to treat them.
It’s part of a comprehensive community health-care program run from a modern hospital — a fortress-like stone structure hours from the nearest paved road. Every week its staff provides hundreds of patients with treatment ranging from prenatal care to basic dentistry.
“As far as I know, we’re the only ones providing this therapy in Haiti, and that’s a scandal,” said Dr. Paul Farmer, an associate professor of medicine at Harvard Medical School and a practicing physician. His medical charity, the Boston-based Partners in Health, developed the AIDS program with the help of donations from church groups, foundations and individuals.
“Here you have the greatest plague since the Black Death running rampant, and nobody else seems to be doing this,” Farmer said. “It’s unbelievable.”
About 95 percent of AIDS victims live in developing countries such as Haiti. The vast bulk of those cases are in Africa, but the Caribbean region has one of the world’s highest infection rates.
Responding to mounting criticism, drug companies in recent months have slashed the price of AIDS therapies that can cost thousands of dollars per patient. Now the question is how to get drugs to the sick and poor and effectively monitor their treatment.
That’s why the Clinique Bon Sauveur’s program is so radical: the “cocktail” of expensive anti-retroviral drugs is being given to the poorest of the poor. It is followed up with regular medical checkups. The only other Haitians who have regular access to the drugs are the affluent and well-connected.
In the context of Haiti — and just about anywhere else in the AIDS-ravaged developing world — it’s like winning the life lottery. Elsewhere in this country AIDS is treated as a death sentence. Doctors routinely avoid telling patients that they’re infected for fear those under their care will die even faster.
The nation’s public health system has collapsed. Its immunization program is in disarray, leaving it vulnerable to outbreaks of tuberculosis, measles and polio. Hospitals are dirty, open-air sanitariums, 19th century institutions where patients either pay for their medicine or languish. There is nothing resembling social welfare to pay for care or medicine. Most people die at home. AIDS is just one more fatal malady in a country where children routinely lose out to treatable conditions such as diarrhea and tetanus.
But not in Cange.
“At first I had heavy nausea taking these pills, but now I’m fine,” said Saintilus, who has regained her weight and energy. Her drug regimen includes Saquinavir, a protease inhibitor that costs as much as $642 for a monthly treatment in the United States, and 3TC, which runs $273 a month.
The combination is generally referred to as “highly active anti-retroviral therapy,” or HAART, and Saintilus, like others, likely must remain on it for the rest of her life.
“I was basically depressed, very depressed, but I’m not thinking about that anymore, about the sickness,” said Saintilus. “I have four children, you know? I saw that when I was sick I could not provide for them anymore, so now I think about that a lot.
“I have a lot of hope now because I am in the doctor’s care.”
Farmer’s project is being closely watched by AIDS experts around the world who are searching for a way to provide a complex regimen of drugs to poor, often illiterate patients who live in areas without electricity, running water and sanitation. Few countries as poor and unstable as Haiti have the resources to accomplish it.
“What Paul Farmer is doing in Haiti is absolutely phenomenal,” said Dr. Peggy McEvoy, the recently retired Caribbean chief of UNAIDS. “You have a man who’s been working there since before the epidemic began. He has been working in an isolated region of the country and knows its history. And he has an ability to raise money to keep his project going.
“If you had 25 Paul Farmers in Haiti and the Dominican Republic, then you would be well on your way to stopping the epidemic,” said McEvoy. “The problem is that you don’t have 25 Paul Farmers in the world, much less in Haiti.”
An anthropologist and infectious disease specialist who divides his time between Boston and Haiti since the early 1980s, Farmer and his hospital are at the forefront of a global debate over how to curb the AIDS epidemic.
Experts estimate that about 20 percent of HIV-infected people around the world could be ready for anti-retroviral therapy, meaning that without the drugs they are unlikely to live much longer.
Earlier this year, the pharmaceutical industry began slashing the prices of AIDS drugs in developing countries after a global outcry over prices. That brought a standard treatment down from $15,000 per person to $10,000, but prices are dropping rapidly. In some countries in Africa, the medicine has fallen to about $1,000.
But that’s still more than twice the average annual income in Haiti. And getting the life-sustaining drugs to patients is only one part of the problem. Distributing them requires at least some medical infrastructure and trained workers to deliver the drugs, conduct medical tests, educate patients and monitor usage.
Though it must be tailored to each patient, the standard cocktail regimen generally consists of three drugs taken at specific intervals over the course of a day. Some must be taken with food and water, some without.
Using a well-known medical strategy called directly observed treatment, Farmer’s team has trained local men and women living in the mountains around Cange to be health-care workers who watch patients take their medicine.
Known as accompagnateurs, the workers fan out early every morning to assigned patients and watch as they take the medicine in the correct manner. They return in the afternoon and again in the evening, walking along steep mountain trails to tiny, remote villages.
On one afternoon in late February, accompagnateur Marie Jose Gousse was making her rounds several kilometers from the clinic when she spied Fritz Benjamin, a 22-year-old patient who had disappeared for nearly a week and missed his monthly checkup.
“He’s my biggest problem, this boy,” she said. “He’s the only one I really have to watch. If I’m not around he’d never take his drugs.”
Cleaning fish next to his grandmother’s house, a leaning wooden shack with a tin roof, Benjamin frowned like an adolescent faced with having to take his medicine. He has been on anti-retroviral treatment for two months. Holding a plastic bag, he pulled out boxes of Indinavir and other AIDS drugs worth several times what he makes in a year.
“Wash your hands before you touch them,” Gousse directed him. “Do you have any water? You’re going to have to take these with water. Where have you been, anyway?”
Benjamin had vanished for a good reason. An investment of about $20 to buy soft drinks for resale at roadside stands had disappeared with a business associate. Benjamin had journeyed to Port-au-Prince to find the man and get his money back.
Gousse watched him take the pills, washing down each with a cup of water.
“You have to take this medicine if you’re going to get better, do you understand?” she says.
“I will, I will,” Benjamin answers. “This is the last time I’m going away. I always take my medicine. I’m not going anywhere else.
“But I’m telling you, it’s very hard to find water sometimes to take with these,” he adds. “And I don’t have food every day. I used to be a big man before I got this thing. A big man.”
His complaint — the lack of food — is common among patients, say health workers.
“The main problem we have with these medicines is that with a lot of them, you have to have something to eat,” Gousse said. “People may have food for the morning, but they don’t have food for the afternoon. We give them aid, but we can’t give it every day.”
Monitoring is important, physicians say, because if the regimen is altered it could cause patients to become even more ill. With unpleasant side effects, some people may skip their pills. There’s also a larger risk that new, more drug-resistant strains could develop if medicine isn’t taken in the right dosages.
Farmer’s approach is not without controversy.
“I don’t want to deny life-saving drugs to people in developing countries, but this certainly isn’t an area that we want to go into blindly to just hand out drugs to poor people,” said Dr. Tom Coates, a executive director of the AIDS Research Institute at the University of California.
“In San Francisco, we’ve found that these drugs have paradoxically raised the infection rate,” Coates said. “People felt they were chemically protected and they didn’t change their behavior. It resulted in a greater spread.
“There’s a real danger that not only do you hurt the patient, but you end up with a serious problem with drug-resistant strains,” Coates added.
The World Bank, which funds many international AIDS efforts, warned last year that providing anti-retroviral drug combinations in developing countries “may undermine prevention efforts by encouraging the mistaken impression that scientists have found a ‘cure’ for AIDS. The excitement over promising results from trials of new anti-HIV drugs should not obscure prevention — still the most effective approach against the virus.”
But Farmer questions these arguments. Two decades of prevention without treatment has not curbed the spread of the disease, he says. Moreover, that spread has driven down the alarming infection rate of other diseases like tuberculosis. Finally, with drugs available that can help the suffering, denying treatment is simply immoral, he argues.
“The wealth of the world has not dried up,” he writes in Infections and Inequalities, one of several books he has written on AIDS and the poor. “It has simply become unavailable to those who need it most. ... The struggle for social and economic rights for the poor must become central to every aspect of AIDS research and treatment.”
Farmer also points out that drug-resistant HIV has already emerged in the United States, prompting only the mildest public alarm. And the few surveys that have been done suggest that patients in developing nations are no less diligent in taking the drugs than people in cities like San Francisco.
“That’s way off base, the drug resistance argument, along with the argument that the drugs are too expensive,” Farmer said. “Now that the drug prices are coming down, drug resistance is emerging as master excuse No. 1.
“The way it’s sounding to many of us is that drug resistance is the privilege of the wealthy nations,” he added. “But God forbid that a poor place should ever generate a drug-resistant strain. Then suddenly the funding’s cut off.”
Farmer has long experience with Haiti’s AIDS epidemic. He has studied, lived and worked in the country since 1983, before the first cases were diagnosed there.
The Clinique Bon Sauveur was built in 1985, two years after Farmer arrived in Cange as part of his anthropology studies. The first case of HIV in the Central Plateau was documented a year later, in 1986.
Despite an education campaign and condom promotion, the infection rate seemed to be growing, Farmer realized. Moreover, a seemingly disproportionate number of women were testing positive for the disease.
Realizing that prevention efforts were failing, Partners in Health launched what they called the HIV Equity Initiative. In 1995, six months after studies were published documenting the effectiveness of the new generation of AIDS drugs, the group began offering AZT to pregnant women to block mother-to-child transmission of the disease.
As word spread about the effectiveness of AZT, more women appeared at the clinic seeking HIV testing. In 1997, the clinic began offering the first three-drug regimen to victims of rape. The following year, they began offering the anti-retroviral cocktail to a small group of male and female patients who were no longer responding to treatments for their opportunistic infections, diseases like tuberculosis and severe pneumonia that often end up killing AIDS patients.
As the number of patients receiving the therapy has grown — Farmer currently provides the anti-retrovirals to 44 patients — the clinic has developed techniques to save money while increasing its reach. It has developed cheaper alternatives for diagnosis, treatment and the care of AIDS patients that Farmer thinks could easily be copied elsewhere.
Until now, drugs have been purchased in the United States at market prices, supplemented by drug drives in Boston and elsewhere. As American AIDS patients have changed therapies, they have donated their unused, unexpired drugs to Partners in Health for the Haiti program.
Farmer’s HIV-positive patients are carefully monitored and treated for opportunistic infections before they are put on precious anti-retrovirals. In many cases, treating tuberculosis and other maladies improves a patient’s health without putting them on the cocktail.
“We’ll treat people who don’t have active tuberculosis, because those people do so well just with TB drugs,” Farmer explained. “And they can be asymptomatic for years after treatment. So people who don’t have TB, but who have one of a certain number of signs and symptoms of advanced HIV disease,” are treated.
The clinic serves a population of about 125,000, a figure that Farmer hopes to double. Assuming an infection rate of 5 percent among adults in the 15- to 40-year-old age group, the clinic’s team estimates about 7,500 people are infected with the HIV virus in the region the clinic serves.
Of that group, an estimated 750, or 10 percent, likely would require immediate anti-retroviral therapy. Helping those people should be well within the capacity of the clinic as long as its funding continues to grow, Farmer said.
“As far as HIV goes, we’d like to offer complete coverage of a population,” Farmer said. “That is to say that every person in that area who has advanced symptomatic HIV disease, and who would benefit from anti-retrovirals, would have access to them.”
Tim Collie can be reached at firstname.lastname@example.org or 954-356-4573.