by Anne-christine d’Adesky

Introduction

Thirty years ago, the paved highway leading from Port-au-Prince to Haiti’s high, forested interior was a winding feat of engineering. Today, it would be generous to call what remains of it a road, especially during the summer rains. Better to view the steep, gutted dirt track as an ideal test for the most powerful, rugged four-wheel drive vehicle, one that requires a driver to continually monitor the vertical angle of ascent and wonder mutely at the sight of rusting overturned trucks that litter the mountain pass. Since most Haitians are peasants and rank among the poorest of the poor, they either gamely hang on to overloaded trucks that lurch along the road, or they trudge along on donkey or foot.

For the majority of people heading for the village of Cange, where the Zanmi Lasante (Creole for Partners in Health) medical complex is located, there is little choice in making the journey. They and their family members are sick, desperate and penniless. Many have tuberculosis and HIV. They leave their mud shacks in the mountains to arrive at all hours of the day or night, some shouldering dying relatives on hard wood pallets like an awkward religious cortege. At dawn, dozens are camped out, waiting to be seen by the clinic’s small staff.

The sight of the large complex suddenly looming above the trees in an otherwise barren landscape seems nothing short of a miracle, a kind of Oz. How, one thinks, did this get here ? And who in their right mind would build it ?

The answer is a group of idealists led by Dr. Paul Farmer, 40, a gangly white American doctor and anthropologist from Harvard who views health as a fundamental issue of human rights. Farmer came to Haiti in 1983 and quickly found his calling in Cange. Many of the district’s sharecropping families had been displaced by a huge hydroelectric dam built on the nearby Artibonite River. (The dam now provides most of the electricity for Port-au-Prince, but, ironically, none to the surrounding villages.) His vision was a medical center that could provide care to rival a rich place like Harvard, but one that was rooted in a concept of community ownership and development. He benefited from the commitment of Père Fritz Lafontant, a well-respected Episcopal priest who mobilized community support for the project.

With several friends, Farmer founded Partners in Health as a small nonprofit organization that now sponsors the Cange center and similar projects in Peru, Mexico, Cambodia and Roxbury, Massachusetts, a poor Boston neighborhood. Today, PIH’s modest staff at Cange provides care for up to a million people, including 100,000 people in the catchment area. Fees for health services are nominal or free. In addition to primary care and a focus on endemic illnesses like typhoid, malaria and dengue fever, the project has a maternal health and pediatric program, a state-of-the-art STD clinic, and a recently built tuberculosis and infectious disease center. It has taught local residents to become health workers and counselors, trained midwives and nurses. PIH has also built schools, homes and communal water systems and provided work for area residents. No wonder locals regard Dokte Paul, or Blan (Whitey) Paul, as the closest thing to a saint or God they’re likely to encounter.

Bringing Medicine to the Country

Over the past year, Farmer and his team have generated new headlines and more visitors to Haiti for their boldest project ever, one that has put Cange at the center of the international AIDS map and fueled a passionate debate among public health policymakers. His team is determined to prove that it is possible not only to treat the poorest Haitians with HIV and AIDS using expensive antiretroviral combinations (HAART, or highly active antiretroviral therapy) but to offer a community-based model of HIV care that could be applied in other poor countries. They advocate a strategy of Directly Observed Therapy (DOT) that his team has perfected against multidrug-resistant tuberculosis, or MDR-TB. If it can be done in Haiti, they argue, it can be done anywhere.

Haiti is among the poorest countries in the world, with a per capita gross domestic product of US$400 an unemployment rate over 70%. Most Haitians live in rural areas, as sharecroppers working infertile land. This year, the Bush administration renewed the suspension of international aid and virtual embargo against Haiti in response to allegations of voting improprieties during the year 2000 national elections. Millions of dollars in aid have been blocked along with the activities of major donor health agencies, and poverty in Haiti has become still more crushing.

PIH has been battling AIDS in Cange since 1986. It began administering AZT to pregnant women in 1995, with great success. In 1997, a prophylactic regimen (AZT, 3TC, and a protease inhibitor) was first offered to exposed health workers and victims of rape.

The chief treatment lesson has come from resistant tuberculosis, a chronic illness. Although tuberculosis is clearly different from AIDS, it shares certain features that pose a tremendous challenge to daily and long-term management. Both diseases require patients to take several drugs daily and to substitute second-line drugs to overcome cases of drug failure and drug resistance, including multidrug resistance. The medicines may trigger noxious drug-related side effects. MDR-TB patients often have severe lung damage after failing for years on previous regimens. They must brave an additional two years of daily combination therapy, including injectable antibiotics. A key difference is that resistant TB can be cured, whereas HIV combination therapy is now viewed as a lifelong maintenance regimen. The longer patients must take drugs, the greater the chance of resistance developing, which makes MDR-HIV a real threat.

The above problems are often cited by critics as a good rationale for avoiding the introduction of antiretroviral therapy in African and other poor countries. They argue that, aside from the cost, it’s just too hard without an adequate health infrastructure and trained professionals who can assure patient compliance. They worry that mass introduction of HIV medications in poor countries will lead to the development and spread of new MDR-HIV strains that will make it harder to treat AIDS in the future.

Although he admits that drug resistance is an issue, Farmer belittles these concerns. The PIH initiative is called HIV Equity, for good reason. The fight for access to HIV drugs is fundamentally one of justice : "The people who say you can’t treat the poor with these drugs are just looking for a reason not to do it," said Farmer, taking square aim at what he calls the heart of the problem : greed and indifference. "It’s amazing how many excuses people can come up with when they don’t want to do something. The bottom line is that rich countries and governments don’t want to pay for poor people. Not here, not there. I’m not saying HIV and AIDS isn’t a complex medical disease [^] it is, but it can be managed with existing medicine and using DOT."

TB is the Model

When Farmer starts talking about how his team approached the problem, his anger is quickly replaced with a boyish enthusiasm. "I wish everyone could see what we are doing here. I really think MDR-TB is a great model for HIV because in fact, it’s even harder to treat resistant TB in my opinion. Of course, it’s true that people don’t have to take the TB drugs for as long, but the TB drugs are tougher and they don’t always work as well. The problem is that not many people really know how to treat resistant TB."

An estimated two million people a year die of TB, a contagious disease caused by a bacterium that thrives in settings of poverty and overcrowding. Very few strategies exist to combat MDR strains, which are spreading throughout the world. It is considered a chronic illness that is too expensive and almost impossible to treat. Instead, most governments have adopted a standard aggressive treatment for active TB called DOTS [^] the "S" stands for "short-course" [^] regimen using first-line drugs that was created by the World Health Organization for global TB management. In Haiti, as in many poor countries, TB remains the primary cause of death among HIV-positive individuals, and TB is often the first marker of HIV infection.

In 1995, Farmer and a PIH colleague named Jim Kim, also a dual MD-anthropologist, learned that a priest and friend of theirs from Moscow had died of drug-resistant TB. The man, Father Jack, had previously worked in Carabayllo, a shantytown outside Lima, Peru. There, they discovered a fast-growing epidemic of MDR-TB, with most patients resistant to all five "first-line" TB drugs. Since Peru had a strong national DOTS-TB program in place, with high cure rates, the news was especially alarming [^] and not welcome.

"They were not happy," Farmer noted of Peru’s Fujimori government. "We were all freaked out."

He paused, sighing. "The problem is, people with MDR-TB can infect other people with resistant strains. So it becomes necessary to treat. What’s the point of treating active cases and allowing the spread of more powerful resistant strains ? That’s a recipe for a public health disaster."

Bucking conventional wisdom, he and Kim began using second-line TB drugs in individually tailored regimens and called their strategy DOTS-Plus. In Lima, and soon in Haiti, they set up support groups for MDR-TB patients and trained community residents to become drug buddies who provide emotional support and administer the medicine, assuring adherence. In Cange, these people are called accompagnateurs [^] a French word that means "someone who accompanies." Haitian patients have another name for them : "anj" [^] angels. Since the meds are hard to take without food, patients are given a small stipend for food (US$10). The accompagnateurs are also given a bag of food in exchange for their labor. In Cange, it may require a trip of several hours on foot to find a patient. Even by Haitian standards, it is a Herculean endeavor.

But the results have been quick and impressive. In both Carabayllo and Cange, MDR-TB rates have fallen dramatically. Last year, 90% of all registered TB cases were considered cured in Zanmi Lasante’s district, compared to only 26% in other regions of Haiti. Now the challenge is how to extend such success to the rest of the country.

Dr. Joia Mukherjee is Farmer’s right-hand woman at the Peru project. She did stints in Uganda before tackling MDR-TB and HIV. "Our program is focused on treatment equity [^] we treat with the best drugs, if it’s here or there," she said. "That would not seem to be controversial, but of course it vaulted us into the international TB stage because it was expensive [^] nothing more [^] and complicated." She paused, adding an aphorism that Farmer is apt to repeat to visitors : "We’ve been successful because we remove the barriers to compliance. The doctor may be noncompliant, but not the patient."

The PIH team has been busy applying their community-based DOTS-Plus model to other settings, such as Russian prisons, where there is an exploding MDR-TB epidemic. There, 20% of inmates have active TB, and [^] not coincidentally [^] STD and HIV rates are escalating.

Mukherjee believes that MDR-TB provides a critical new paradigm for public health and global HIV control : "What has succeeded before in public health are answers that are fairly straightforward and one shot, like vaccination and the eradication of guinea worm. MDR-TB is the first example that looks at treatment of a complicated medical disease with a complicated treatment regimen on a public health scale, rather than a doctor-patient individual scale. I think the treatment of HIV will fall under that category. We’re talking about the public health treatment of a chronic condition."

A Pilot HIV Program

The HIV Equity initiative technically began in 1998, when HAART drugs were offered to several patients with severe AIDS who no longer responded to syndromic treatment of their opportunistic infections. In Cange, pulmonary TB is the big OI, followed by wasting (chronic digestive disease) and neurological complications of HIV. Like most PIH projects, the program began on a shoestring, using recycled drugs donated from Boston doctor-friends and hospitals. Today, 65 people with advanced HIV disease are receiving what Haitians call "tritherapie," a three-drug HAART regimen. There is a very long waiting list. Almost 4,000 locals from the catchment area have HIV, and Farmer estimates that 10% might be sick enough to qualify for treatment. But that’s a guesstimate. Even with all the encouragement at Zanmi Lasante, AIDS remains a highly stigmatized illness, and less than a handful of people have publicly revealed their HIV-positive status. Many Haitians believe in voudon, an animist religion ; to them, AIDS is the product of a curse by a neighbor, something requiring divine intervention.

HIV testing tends to occur when very sick people come to health centers for help. "Until we arrived, people viewed AIDS as a death sentence," explained Dr. Leone, an easygoing Haitian doctor at Zanmi Lasante. Smiling, he added, "Now they aren’t so sure."

Patients are selected for HIV treatment according to criteria that are still under development but include advanced HIV disease, wasting, severe neurological complications of HIV, anemia or thrombocytopenia (low platelets) and recurrent OIs that don’t respond to antibacterial or antifungal treatment. Initially, Farmer’s team has avoided splurging on expensive CD4 cell and viral-load tests. It still relies on basic laboratory data available in most rural health clinics to monitor patients using clinical parameters such as weight gain and body mass index, renewed energy, and resolution of opportunistic infections. Within a short period, most patients on triple therapy feel better and begin to gain strength. To counter its critics and test its thesis, PIH sent recent patient blood samples to Boston for viral-load analysis.

The first results are in : 83% of patients in the HIV Equity initiative had undetectable viral load counts. In some patients, the drop had occurred within days. CD4 cell counts had risen quickly in some, more slowly in others. With few exceptions, the patients were tolerating the regimens well and adhering to their medication. Initial drug-related side effects like vomiting were minimal and easily managed.

"We were so stunned to see that some patients fell to undetectable within two weeks," remarked Dr. Leone. As to drug-related toxicities, he noted, "Nothing strong has emerged yet, nothing like metabolic problems. But we know they can and so we are really paying attention to any signs of that." Drug resistance is a factor PIH anticipates. If and when a patient appears to failing therapy, based on clinical markers, it hopes to do a resistance test prior to switching regimens [^] that is, if there is money for those expensive tests.

Publicizing the Personal Experience

In late August, a forum was held at Zanmi Lasante on "Health and Human Rights." Over a thousand area residents crammed inside a church there, along with a number of outside Haitian doctors, politicians, and Farmer’s colleagues from Carabayllo and Chiapas. Several of the treated HIV patients testified about their experience to date. All are converts to tritherapie, with nothing but good things to say about the HIV Equity initiative. As they testified to the Lazarus-life effect of HAART, amazed voices in the back of the church whispered in Creole, "Gade gwo moun la !" "Look at that fat guy !" For Cange residents, the clinical details of combination treatment are hard to grasp, but not the sight of a neighbor given up for dead.

Teofa, née Bernardin Gracia, laughs, nodding, when he hears this. A 32-year old man who looks 18, he was frail and unable to work when Farmer found him. Like his neighbors, he had heard about AIDS and knew about condoms, but he regarded the epidemic as a distant threat. He was married, with three children, and sexually faithful to his common-law wife. He had no idea HIV was the cause of the illness. His wife, it turns out, is also HIV positive and ill ; she too has started triple therapy. Their children are all HIV-negative.

"The drugs we take for HIV, they are so important we don’t even think of them as drugs, but as something God has brought us," Teofa said passionately. "I was doing so badly. I hadn’t prepared my funeral yet, but others were talking about it. The minute Dokte Paul came and found I was infected and put me under treatment I became normal." By normal, he explains, he means he can work even if he can’t do heavy labor. He can care for his children, who are his life.

"There are a lot of people who say that you people in such a small poor country, you can’t get access to those drugs, you can’t manage them," he continued. "But for me, it’s not true." That includes managing drug resistance, since he’s been one of 15% of patients who haven’t hit the undetectable viral load marker yet. Farmer recently sent Teofa’s blood to Boston for resistance testing, and he’s since switched to a new three-drug combination. "I’m confident," Teofa said, undeterred. "Anyway, I’ll do what I have to make sure it succeeds." He added defiantly, "We are the evidence of the success. There is poverty, and we are poor, but that’s not a reason to say we can’t manage a big thing like this. And if we succeed, it shows all of us can manage this."

Teofa had not warned his wife that he was going to come out publicly as HIV-positive at the Cange forum. He was a bit worried about the repercussions. But he had to testify, he said, because he felt a responsibility to his community and to the project. He wants to spread the message of hope. "I am not afraid, I am not hiding. I want to live and take care of protecting others. I tell them, if you don’t want to disclose, you can find another means, but you can protect yourself and others."

The drugs are tough to take, but Teofa has never missed a dose. Food is the biggest hurdle of the day : "I took my medicines without food this morning [^] I had to. [sigma] I wasn’t negligent about the medication because I didn’t have food. The problem is, then, it makes me feel bad. I have nausea, I have to lie down. If I eat, it doesn’t do that."

Food is the critical issue for many of Dr. Leone’s patients. He commented, "We talk about that in the support groups, where we focus on unexpected reactions, side effects, what you must do, what the ideal behavior is to manage[sigma] We also accompany the patients so they have that support to help them take charge of their own treatment. There are certain patients who give signs of less adherence and so we make appointments to talk to them, to address the barriers."

The highlight of the forum was a declaration by the HAART patients to the world, a passionate defense of their right to HIV therapy. "We have a message for all people here and anyone who will listen. We are seeking solidarity. The fight we wage to get care for people with AIDS, with tuberculosis and other diseases, is the same fight we’ve been waging for a long time [^] for the right of all people to be able to live as humans."

HIV Medicine in the City

With the spotlight on Cange and its early success, the question remains how replicable the pilot project is for the rest of Haiti and the world. "They are doing excellent work," admits Dr. Jean Pape, a veteran HIV physician and Cornell graduate who heads the main HIV program in Port-au-Prince, GHESKIO. Pape collaborates with Farmer’s group. "There is a difference between a private initiative with private resources and a public health program. The key difference is money. Haiti doesn’t have much," Pape said before adding, "Well, Haiti doesn’t have any."

By collaborating with US partners like Cornell, and with backing of the Haitian Ministry of Health, Pape’s group has put in place a strong national HIV prevention program, reducing the rate of infection to the present 4%. It has also treated a small number of private patients who could afford access to US-priced drugs, offered postexposure prophylaxis to health professionals and rape victims when possible, and provided AZT to pregnant women. As a premier HIV research facility, Pape’s organization recently launched the one of the first human phase II HIV vaccine trials, which is also taking place in Brazil and Trinidad and Tobago. Most important, the Haitian government has strongly and publicly backed these efforts. Haiti could do much more and is prepared to if the money were there, although buying drugs might not be its first step.

"I am worried, frankly, about going too fast," stated Pape, who admits a tendency toward caution. "We have to build the infrastructure, to make sure we succeed." He worries especially about drug resistance. "We can’t afford to fail, because the consequences would be too enormous." That said, he champions HAART as an opportunity to build the infrastructure, provide the training, and educate communities. "What Paul has done so well is mobilize the community," he observed admiringly. "That’s a lesson for all of us."

Cange is different from urban Port-au-Prince. Many residents of the capital are slum-dwelling displaced peasants with no ties to the local community. Will they encounter health workers as dedicated as those in Cange ?

"Most Haitian doctors view their patients quite differently," said Dr. Patrick Joseph, a young physician at GHESKIO, laughing wryly. "They don’t view them as equals. I’m not sure they are capable of it." Then there is the vision thing, the man behind the Cange project. Joseph remarked softly, "Not all of us is a Paul Farmer."

Farmer points out that Lima is an urban setting similar to Port-au-Prince, and the DOTS-Plus model works well there. In Lima, a sense of community ownership grew out of an investment, of heart and compassion as well as money. "It can be done," insisted Farmer. "Whether people want to do it is another matter."

For now, the road to Cange presents the most immediate barrier preventing outsiders from evaluating for themselves the merits of this community approach. "If they can get here, we’ll give them lunch," Farmer joked. "If they stay too long, we’ll put them to work."

Source : http://ww2.aegis.org/pubs/amfar/2001/AM010902.html