HOW MUCH IS a human life worth? Tough question, but it would seem fair to say that it’s worth more than $4. Still, the lack of that paltry amount kept an anthrax-infected villager from making a lifesaving trip to the Zanmi Lasante clinic in central Haiti. There, clinic doctor Paul Farmer could have given him a simple infusion of penicillin, which saved the lives of two other infected villagers who did make the trip. When Farmer checked in with his recovering patients the next day, they told him word had come of their neighbor’s death.
“We’re living in a world where someone can die from anthrax for lack of transportation funds,” Farmer said, as he recounted this story for a group of doctors and students gathered in a stately Harvard Medical School auditorium. They had come on a December afternoon to hear a panel discuss ethics and public health. Without turning around, Farmer flashed a slide on the screen behind him. A chart showed that Defense Department spending on bioterrorism nearly doubled this year, up to $9 billion from $5 billion in 2000. “So far as I know,” Farmer said, “we don’t have cases of bioterrorism-induced anthrax. We do have universities like this one receiving hundreds of millions of dollars to set up think tanks and research institutes on bioterrorism.” Farmer paused, then made his point: “But it is impossible to get someone into a clinic for treatment of this disease — not in theory, but in practice.”
SOME PEOPLE can accept this fatal irony. Farmer cannot. Thirteen years ago, he and a fellow Harvard Medical School graduate, Jim Yong Kim, formed Partners in Health, an organization dedicated to making sure a $4 bus ride never becomes a matter of life and death. Since then, the group has grown from a one-room Cambridge operation to one of the boldest projects in international health today.
At first glance, PIH looks like your typical late-night-ad missionary group: a flagship hospital in Haiti, a women’s-health program in Chiapas, Mexico, and tuberculosis programs in Peru and Cambodia. But what sets PIH apart is that it is not content simply to dole out care. Farmer, Kim, and their loyal staff try to address what they see as a huge injustice: millions of poor people die every year from diseases that we know how to cure and treat.
One of those diseases is drug-resistant tuberculosis, a deadly form of the airborne illness. It takes six months and daily medication to knock out regular TB, which kills two million people a year. It takes two years and stronger drugs to cure patients with the resistant form — a small but growing percentage of TB patients. Already overwhelmed by routine TB, the World Health Organization (WHO) had no program for treating the drug-resistant form. In effect, the WHO allowed these patients to die. But in 1998, Kim and Farmer used their success treating the disease in Peru to persuade the agency to change its policy. Today there are WHO-sponsored pilot programs for patients with drug-resistant TB in Haiti and Peru.
This success with TB has won PIH a lot of attention. The Bill and Melinda Gates Foundation recently awarded Harvard $45 million in Microsoft money specifically to aid the Peruvian TB effort. (That’s about 10 times the annual budget PIH depends on for all its other work combined.) And Pulitzer Prize–winning journalist Tracy Kidder followed Farmer around the world for an August 2000 New Yorker profile and an upcoming book.
Now PIH hopes to duplicate that success for AIDS patients. The clinic in Haiti where Farmer works is now one of the few places in the world where the poorest of the poor can get the lifesaving anti-AIDS drug cocktail, and PIH staffers are training local health-care workers to deliver it. Eventually, they hope to introduce their system in hard-hit regions like sub-Saharan Africa, home to 2.4 million of the three million people who died of AIDS last year. “They do extraordinary things from a medical point of view, from a humanitarian point of view, and from a public-health point of view,” says Jeffrey Sachs, the director of Harvard’s Center for International Development. “[Farmer] demonstrates convincingly that if we care to do it, if we think hard about doing it, then yes, we can save thousands of lives.”
Not that PIH’s approach is universally accepted. Many public-health leaders worry that intensive treatment for a minority of TB patients will draw resources away from other health programs. They also worry that, if done poorly, treatment for drug-resistant TB could create super-resistant, possibly incurable forms of the disease. Similar arguments often meet plans to bring anti-AIDS drugs to poor countries.
Speaking to a Harvard audience, though, the tall, thin, fair-skinned Farmer declared that those arguments make little sense to poor people who are dying. And those are the people he answers to. “Patients do not have this debate,” he said. “Their families do not have this debate. It is we who are having this debate.” He had flown in from Haiti the previous night, and was headed for Russia the next day, to check up on a TB program there. “I have yet, as an HIV doctor, to hear a patient say, ‘Well, I am not cost effective.’ The clamor from the affected is, ‘Please make sure we have equal access to care.’”
LAST FALL, Partners in Health moved from Cambridge to a Huntington Avenue brownstone on the edge of Harvard’s medical campus. The organization shares a space with Harvard’s Program in Social Change and Infectious Disease. Farmer and Jim Yong Kim, who both have MDs, as well as PhDs in anthropology, created and run the program. A list of courses, which includes “The Social Roots of Disease” and “Culture, Poverty and Infectious Disease,” is posted outside Kim’s office door.
Inside, Kim works the phones. A Korean native in his early 40s, Kim has a wide, pleasant face and a thinning hairline. He wears a suit and tie. Except for a few pieces of Haitian folk art, his office looks as though he forgot to finish unpacking. Two books sit on a wall-length shelf, including Dying for Growth, an anthology on globalization and health that Kim helped edit. Snapshots of his infant son, Thomas, hang over his desk. (The child is named after Boston developer and philanthropist Thomas White, who has virtually bankrolled PIH for most of its existence.)
While Farmer tended to patients in Haiti, Kim spent a good deal of time in Geneva, tending to the World Health Organization. “I’m not really a policy person at all,” he says. “I just sort of inherited it.” Kim explains that he and Farmer share several key influences. One is Paulo Freire’s classic 1968 manifesto Pedagogy of the Oppressed (“True generosity consists precisely in fighting to destroy the causes which nourish false charity,” it reads in part). The other is the radical Catholic doctrine known as liberation theology, which preaches that the Church should be in the business of fighting poverty and oppression. So, he says, they work alongside the poor and answer to the poor, not to the WHO or government health ministries. That means that PIH was not satisfied with the contention that health ministries could not handle treatment of drug-resistant TB. Rather, PIH looked at the sick and asked how it could be done. Sometimes the work takes PIH staffers as far away as Russia. Other times it takes them just a mile or two up Huntington Avenue: in addition to the overseas efforts, PIH works closely with the Soldiers of Health, a program that sends advocates door to door to check on the health-care needs of their neighbors. The people of Roxbury may be five minutes away from some of the best hospitals in the world, but poverty often keeps them from getting the care they need, says Kim.
Sometimes, Kim and Farmer literally take their work home with them. In December, PIH sent a wide-eyed four-year-old Haitian cancer patient to Boston for treatment that couldn’t be delivered in Haiti. Maveline Israel and her father, Josue, lived in Farmer’s Harvard Square apartment for more than two months while doctors at Massachusetts General Hospital treated the girl for Wilm’s tumor. This childhood kidney cancer is a death sentence for children in Haiti and other poor countries. Here, doctors can completely cure 80 to 90 percent of patients.
THE ODDS were not as good when Farmer and Kim went to battle for people with drug-resistant TB. When they made their initial plea, they found little support among their colleagues. Kim says they were dismissed as zealots. At one point, he recalls, a critic vociferously dressed them down at a meeting. The room broke into applause.
Until 1999, the conventional wisdom — and WHO policy — was that poor countries didn’t have the health workers, clinics, or money needed to administer intensive TB treatment properly. And ultimately, Kim says, they were told that poor countries were not interested in taking on such a program. “They said to us, ‘But Jim, Paul, that’s not what the countries want,’” Kim says. “But who are these organizations dealing with? Ministers of health riding around in their SUVs with their cell phones. These are the elites, and what the elites and the poor people want do not match.”
So they went back to Peru, trained community health workers, and set up patient support groups. By 1998 — two years later — they had cured 52 people. That doesn’t sound like a huge number, but without PIH, all 52 would have infected others and then died.
By 1999, the WHO had a plan in place to address drug-resistant TB. Then PIH negotiated massive price cuts with the companies making the drugs they needed, thus bolstering the effort. “I get in trouble with the WHO all the time,” Kim says, “but the WHO moved incredibly quickly on this.”
Their efforts have made an impression. Richard Laing of the Center for International Health at Boston University helped set up Zimbabwe’s TB program and remains involved in the debate on how best to contain the disease. He says PIH proved it could be done by doing it, and that’s refreshing in a field where policy tends to be driven by “experts, not evidence.” He adds that PIH has proved its point so thoroughly that most critics have been silenced: “Nobody is doubting that you can treat these people anymore, when five years ago the policy was ‘no treatment.’”
Now PIH wants to do for AIDS sufferers what they did for those with resistant TB. They currently oversee community health workers who deliver antiviral drugs to AIDS patients in rural Haiti. Instead of handing patients drugs and sending them home, health workers make sure that patients take the drugs in their presence. This approach — known as “directly observed therapy short-term” (DOTS) — has been key to TB treatment.
Right now, however, AIDS requires a lifetime of treatment, not just two years. PIH’s “HIV Equity Initiative” comes at a time when other groups are pushing for treatment in Africa and demanding that drug companies lower prices. But unlike TB drugs, most AIDS drugs are still under patent, in demand, and very expensive. Price cuts will not come easily. Unlike TB patients, moreover, treated AIDS patients are not cured, and, while not as infectious, they remain contagious even after their symptoms have disappeared. That said, Richard Laing says he still supports PIH’s effort: “It’s still worth trying, because if they can’t do it, then we’re really in trouble.”
A DECEMBER 29 e-mail from Paul Farmer, who had returned to Haiti from his work with TB patients in the squalid Moscow prisons, reads: “Friday evening, rest of medical staff gone — so it’s me, the auxiliary nurses, and 67 inpatients. One guy is at death’s door. A new diagnosis of pulmonary TB. He can’t lie down, he’s so short of breath. Pregnant woman in with hyperemesis [excessive vomiting]. She looks fine now. Am going to check on a kid with a hematocrit [red-blood-cell count] of 10% — one of the lowest I’ve ever seen — who is febrile [feverish] while receiving a blood transfusion. No idea what’s going on with him. Both parents at bedside. The kid who lost his arm to gangrene a couple of wks ago asked me to take a portrait with his mom, so I did, just now, with my new digital camera. They look great.”
Meanwhile, 1600 miles away, little Maveline Israel, the cancer-stricken four-year-old, was bouncing around Farmer’s wood-paneled flat in Harvard’s Eliot House dorm. Farmer spends more time in Haiti than anywhere else, and his flat is filled with Haitian art, as well as inexpensive furniture and pictures of himself, his Haitian wife Didi, and their daughter Catherine, a toddler. After four weeks of chemotherapy, Maveline was feeling better and surgeons are ready to remove her cancerous kidney. The pink lights embedded in the soles of her running shoes twinkled as she ran from lap to lap. Her head was covered with tiny braids and colorful plastic barrettes. She sidled up to Josue, a fisherman and father to four other children. He had carried Maveline on his shoulders for over an hour to get her to a clinic after she developed a large mass on her side. After they went to Port-au-Prince for an ultrasound, the doctors told him she had cancer. “I prayed and cried because I knew Maveline was going to die,” Josue recalled, speaking in Haitian Creole through a translator.
Serena Koenig, a doctor at Brigham and Women’s Hospital who works with PIH, helped make sure that didn’t happen. Cuddling Maveline, she describes how she and others scrambled to line up free care here.
“With a mass like that and a little girl like this, she was coming to the United States,” says Koenig. “What would you do if this was your child?”
This is the concept that drives PIH — what would you do if this was your child, your family, your life? Farmer calls it the “golden rule.” It is the day-to-day contact with patients that keeps this concept real for the PIH staff.
One might think Farmer could better serve the poor by sticking to policy work. Ophelia Dahl, who has worked with PIH since its inception, doesn’t. “That’s what drives him,” she says. “I don’t think he could do one without the other.” Farmer does not argue with that, except to note that he also gets a great deal of satisfaction from doctoring. “I look at policy people and see the errors they’ve made, and I feel that they would not make those errors if they were grounded in patients and families,” he says.
On January 28, volunteer doctors at Massachusetts General Hospital removed Maveline’s cancerous kidney. Three days later, Farmer’s plane landed at Logan Airport. He went straight from the airport to the hospital.
Groggy and hooked up to a tangle of IVs and catheters, Maveline nevertheless seemed to be recovering. But Farmer soon learned that she had an aggressive form of Wilm’s, which meant that her chance of survival had shrunk from 80 to 20 percent.
Farmer went to visit Maveline Saturday evening after seeing patients all day at Brigham and Women’s Hospital, where he is on staff. She looked miniature in the bed as Farmer leaned over the rail, took her hand, and spoke softly to her in Creole. Her now-animated father sat at the end of the bed, smiling and telling stories. He did not yet know about her new prognosis.
Maveline represents many things to Farmer. She is a reminder of sick children in poor communities who have no chance of surviving cancer, or even of being diagnosed. She’s a dose of “mindfulness” for those who work in Boston’s resource-rich hospitals. And Maveline represents the standard that PIH would like to see applied to every patient — the standard of what you would want, expect, or demand if it were your daughter, brother, or wife. “She’s such an interesting little person,” Farmer said, sitting on an undersize bench in the playroom down the hall. “Even if she represents nothing beyond Maveline, she’s already plenty. She’s huge. Most patients are that way for me.”
Tinker Ready is a Cambridge-based freelancer who writes about science, medicine, and health policy. She can be reached at firstname.lastname@example.org.