He concludes the dismount, saying, “I’m glad we came, because now we know how grim it is and we can intervene aggressively.”
I know what this means: a new house with a concrete floor and metal roof, further arrangements for improving the family’s nutrition, school tuition for the kids. Here’s a good deed in progress, and a perfect example of the Farmer method. First, you perform what he calls “the distal intervention” and cure the family of TB. Then you start changing the conditions that made them especially vulnerable to TB in the first place.
I am aware of other voices that would praise a trip like this for its good intentions, and yet describe it as an example of what is wrong with Farmer’s approach. Here’s an influential anthropologist, medical diplomat, public health administrator, epidemiologist, who has helped to bring new resolve and hope to some of the world’s most dreadful problems, and he’s just spent seven hours making house calls. How many desperate families live in Haiti? He’s made this trip to visit two.
I think of the wealthy friend of Howard Hiatt’s who balked at contributing to PIH because, while he knew about Farmer’s work in Haiti and considered it impressive, he doubted anyone could reproduce it. I’ve heard variations on that theme. Farmer and Kim do things that no one else can do. Zanmi Lasante won’t survive Farmer. Partners In Health is an organization that relies too much on a genius. All the serious, sympathetic critiques come down to these two arguments: Hiking into the hills to see just one patient or two is a dumb way for Farmer to spend his time, and even if it weren’t, not many other people will follow his example, not enough to make much difference in the world.
But standard notions of efficiency, notions about cost-effectiveness, about big people performing big jobs, haven’t worked so well themselves. Long ago in North Carolina, Farmer watched the nuns doing menial chores on behalf of migrant laborers, and in the years since he’s come to think that a willingness to do what he calls “unglamorous scut work” is the secret to successful projects in places like Cange and Carabayllo. “And,” he says, “another secret: a reluctance to do scut work is why a lot of my peers don’t stick with this kind of work.” In public health projects in difficult locales, theory often outruns practice. Individual patients get forgotten, and what seems like a small problem gets ignored, until it grows large, like MDR. “If you focus on individual patients,” Jim Kim says, “you can’t get sloppy.”
That approach has worked for PIH. And I can imagine Farmer saying he doesn’t care if no one else is willing to follow their example. He’s still going to make these hikes, he’d insist, because if you say that seven hours is too long to walk for two families of patients, you’re saying that their lives matter less than some others’, and the idea that some lives matter less is the root of all that’s wrong with the world. I think he undertakes what, earlier today, he called “journeys to the sick” in part because he has to, in order to keep going. “That’s when I feel most alive,” he told me once on an airplane, “when I’m helping people.” He makes these house calls regularly and usually without blan witnesses, at times when no one from Harvard or WHO can see him kneeling on mud floors with his stethoscope plugged in. This matters to him, I think—to feel, at least occasionally, that he doctors in obscurity, so that he knows he doctors first of all because he believes it’s the right thing to do.
If you do the right thing well, you avoid futility. His patients tend to get better. They all get comforted. And he carries off, among other things, images of them and their medieval huts. These refresh his passion and authority, so that he can travel a quarter of a million miles a year and scheme and write about the health of populations. Doctoring is the ultimate source of his power, I think. His basic message is simple: This person is sick, and I am a doctor. Everyone, potentially, can understand and sympathize, since everyone knows or imagines sickness personally. And it can’t be hard for most people to imagine what it would be like to have no doctor, no hope of medicine. I think Farmer taps into a universal anxiety and also into a fundamental place in some troubled consciences, into what he calls “ambivalence,” the often unacknowledged uneasiness that some of the fortunate feel about their place in the world, the thing he once told me he designed his life to avoid.
“The best thing about Paul is those hikes,” Ophelia says. “You have to believe that small gestures matter, that they do add up.” Earlier today Farmer said that he’d brought on others to fight “the long defeat.” The numbers are impressive. They include priests and nuns and professors and secretaries and businessmen and church ladies and peasants like Ti Jean and also dozens of medical students and doctors, who have enlisted to work in places such as Cange and Siberia and the slums of Lima. Some of the students and doctors work for nothing, some earn much less than they could elsewhere, some raise their own salaries through grants. I once heard Farmer say that he hoped a day would come when he could do a good job just by showing up. It seems to me that time has already arrived. A great deal of what he’s started goes on without him now, in Roxbury and Tomsk and Peru and, some of the year, in Haiti. Meanwhile, other definitions than the usual, of what can be done and what is reasonable to do in medicine and public health, have spread from him. They’re still spreading, like ripples in a pond.
How does one person with great talents come to exert a force on the world? I think in Farmer’s case the answer lies somewhere in the apparent craziness, the sheer impracticality, of half of everything he does, including the hike to Casse.
We still have to get back to Zanmi Lasante. The sun is setting by the time we finally leave Alcante’s family. Gray clouds billow over the mountains we crossed earlier today. “The westering sun is rebuking us,” says Farmer.
He and Ti Jean confer. They decide we can’t walk back the way we came, not across rivers and over steep paths in the dark, without a flashlight. What they mean is they don’t think I’d make it. I’m not pleased that they think this but am relieved that they do. We arrive back in Casse around dusk. An old man rides down the dirt street on a horse, then a young man on a motorbike, whom Farmer stops. He asks the driver if he’ll give one of our party, the pharmacist, a lift to Cange, and the young man says he will, but for a hundred dollars. “What’s your name?” says Farmer in Creole.
“Jackie,” he replies. Then he asks, “Are you Doktè Paul?”
“Yes. We know your machine eats gas and we’ll replace it. We brought some money for a family here, and they are living in squalor, unlike you, Jackie. And if you get sick, I won’t ask you for a hundred dollars.”
A little crowd has gathered to listen in. Now everyone, including Jackie, laughs. So it’s settled. The pharmacist will ride with Jackie back to Cange and send a truck for Ti Jean and Farmer and me. Farmer didn’t even break a sweat in the previous hours of walking, and now he feels like walking some more. (“Everyone thinks I’m unhealthy,” he says to me. “In fact? Healthy as a horse.”) So we won’t wait in Casse for the truck. Ti Jean and Farmer and I will walk along the dirt road that leads from Casse to Thomonde, the route the truck will have to take.
We stroll out of the village in fading light. The air is merely warm now, the kind of air that I’ll remember on winter nights in northern places and think I must have dreamed. Soon, there being no electrical lights for miles and miles in any direction, the stars pop out en masse, bright enough, it seems, to faintly light the road. “This is nice,” Farmer says to me. “A break from my clinic, from airplanes. I know your feet hurt, but I do in many ways prefer walking.” A cozy feeling seems to spread from him. It’s as if we’re three kids out after bedtime and we can say whatever is really on our minds but don’t have to. I sing a snatch of an army marching song. “You had a good home but you left.”
“You had a nice bus but you left,” sings Farmer.
Roosters crow in the night. Now and then a dog barks. Then we hear a strange sound coming toward us, like something scraping the road. “What is it?” Farmer asks Ti Jean.
Ti Jean says, “Job pa
-l.” The literal translation is: “Its own job.” He means, “Don’t ask.” In a moment, the shapes of a pair of men appear, dragging some sawn lumber down the road toward Casse. A few minutes later we hear a squeaking sound approaching. Farmer asks Ti Jean what it is, and Ti Jean answers more emphatically. “Zafè bounda-l!.” Which means, “Its own ass!” That is, he’s telling Farmer to shut up and mind his own business. A moment later the shape of a person on a squeaky old bicycle passes in the starlight.
This continues. Another figure passes us, and Farmer says, “Bon-soir,” and Ti Jean shushes him, then issues these instructions: If someone passes you at night and doesn’t speak, you too must remain silent, but if the person asks who you are, you must say, “I am who you are,” and if the person asks what you do, you must say, “I do what you do.”
What’s the danger? Farmer asks.
Ti Jean says you might be talking to a demon who will steal your spirit. Then you’ll wake up in the morning with diarrhea and vomiting, and the doctor will say you have typhoid or malaria, but in fact the problem will be more complex. “You should take the medicines,” says Ti Jean. “But then you should also go to a Voodoo priest.”
We stroll on. Farmer says that Ti Jean’s discourse has reminded him of his first ardent explorations of Haiti and of the dozens of Voodoo ceremonies he attended. Contrary to almost everything he’d read about their luridness, he found them long and boring. “The majority were held because someone was sick.” He asks Ti Jean his opinion. Are half of Voodoo ceremonies attempts to drive away illness?
“Three-quarters,” says Ti Jean.
“Isn’t it amazing,” Farmer says to me, “that this simple fact has eluded all the many commentaries on Voodoo?”
We’ve walked three hours from Casse, eleven hours in all today, when I finally feel as though I can’t go any farther. When I say so, Farmer calls a halt. I’m grateful that he doesn’t tease me. We sit down on the side of the lumpy dirt road, on the crest of a hill, facing east. I have a candy bar, and we share it like a trio of Boy Scouts under the stars. Ti Jean points out a blinking red light far away, a radio tower across the border in the Dominican Republic. Staring at it, I hear Farmer’s voice beside me, his gentle doctor’s voice, asking how I feel. I tell him the truth—tired but feeling fine. And then, clear of all his duties for now, his last patient of the day attended to, he lies back on the ground and stares at the stars. “There’s Orion’s belt …”
From somewhere in the valley below us comes the sound of drums. I recall the time I spent here in the central plateau with the American soldiers, and I remember the sound of Voodoo drums wafting into the army barracks in Mirebalais at night and how unsettling it was to some of us sitting there, in all its mystery. I’m sure we’d have felt different if we’d known we were probably hearing ceremonies to cure the sick. For myself, right now, I like the sound, like so many hearts beating through a single stethoscope.
AFTERWORD
In June 2002, seven years after the death of Father Jack Roussin, WHO adopted new prescriptions for dealing with MDR-TB, virtually the same as PIH had used in Carabayllo. For Jim Kim this marked the end of a long campaign. “The world changed yesterday,” he wrote from Geneva to all of PIH. The prices of second-line antibiotics continued to decline, and the drugs now flowed fairly smoothly through the Green Light Committee to, among other places, Peru, where about 1,000 chronic patients were either cured or in treatment. About 250 were receiving the drugs in Tomsk, and, largely because of the efforts of WHO, the Russian Ministry of Health had finally agreed to the terms of the World Bank’s TB loan—150 million dollars to begin to fight the epidemic throughout the country.
The twin pandemics of AIDS and tuberculosis raged on, of course, magnifying each other, in Africa and Asia, eastern Europe and Latin America. Mathematical models predicted widening global catastrophe—100 million HIV infections in the world by the year 2010. Some prominent voices, some in the U.S. government, still argued that AIDS could not be treated in desperately impoverished places. But this view seemed to be fading. The prices of antiretrovirals were falling, even more dramatically than the prices of second-line TB drugs. This was thanks to a growing worldwide campaign for treating AIDS wherever it occurred. Jim Kim had often said that the world’s response to AIDS and TB would define the moral standing of his generation. In 2003, a new director general took over at WHO, and he asked Jim to serve as his senior adviser. Meanwhile, the example of Zanmi Lasante was growing, and Cange had become a favorite destination for global health policy makers and American politicians.
The Global Fund money was delayed, as such monies often are, but Farmer chose not to wait, and in the summer of 2002 the expansion of Zanmi Lasante began—the expansion of the entire system, including antiretroviral treatment, throughout the central plateau. To pay the bills until the Global Fund money arrived, PIH borrowed $2 million from a commercial bank in Boston—Tom White guaranteed the loan and soon paid off a part of it, and the PIH employees with the highest salaries took care of interest payments on the rest. In essence, Farmer’s plan was to “beef up” the health facilities in the central plateau, first of all in towns near Cange. He dispatched teams of Haitian and American doctors and technicians to three towns. One team went to a settlement called Lascahobas, some miles north of Cange. When they arrived, they found a wretched, nearly empty private hospital and a nearly empty public clinic, which had almost no drugs on hand, unreliable electrical power for a few hours a day, and a staff of one doctor and five nurses who all went home for good at 1:00 P.M. Serena Koenig, a member of the Lascahobas team, described the situation as “a nightmare.” But by October, after a month of beefing up, that clinic had a generator, a lab, a full supply of medicines, and doctors on hand all day. And the place was packed with patients, about two hundred daily, sometimes three hundred. The decline in foreign aid to Haiti and to the Haitian government continued, and so did the flood of patients to Cange. But not many came from Lascahobas anymore. The passenger truck from there to Zanmi Lasante, which used to be completely filled, had stopped making the run for lack of riders.
Haiti was still bleeding away, like its topsoil. The whole situation was “rotten,” Farmer wrote. He added, “But there are some spots of hope.” With help from Ti Fifi, a group of Cangeois had drafted a petition to President Aristide asking for electricity. By late October, pylons were being erected to carry power from the dam at Péligre to Cange for a few hours a day. And the Red Cross had announced plans to establish a transfusion post at Zanmi Lasante. Nearly twenty years since Farmer had watched a woman die in Léogâne for lack of a transfusion, and he finally had a blood bank that could serve the central plateau, a source of blood that patients wouldn’t have to pay for. “No more weeping over blood,” he wrote to me.
Some of his e-mails were ebullient: “We’re growing by leaps and bounds.” Zanmi Lasante’s staff now included more than two hundred community health workers, about a dozen nurses, and twelve doctors, among them a Cuban surgeon and a Cuban pediatrician. They were caring for more than three thousand HIV patients, and providing antiretrovirals to about 350. They now had the equipment and trained personnel to do some of their own high-tech AIDS diagnostics. Meanwhile, Père Lafontant had managed the construction of a second operating room. Also in 2002, Cange saw its first open-heart surgeries, performed by teams from the Brigham and South Carolina. I felt tempted to ask Farmer if this was appropriate technology—not to hear the answer, just to hear him say it.
ACKNOWLEDGMENTS
I feel grateful to all the people who appear in this book, and especially to Jaime Bayona, Ophelia Dahl, Howard Hiatt, Jim Yong Kim, and Tom White. I feel grateful beyond measure to Paul Farmer and, I must say, to the fates that allowed my path to cross his.
I want to thank my editors, Kate Medina and Richard Todd, who supported this project, encouraged me, and lent painstaking editorial assistance. My thanks to John Bennet, Ann Goldstein, Marina Harss, and David Remnick at The New Yorker; to the wr
iters Stuart Dybek, Jonathan Harr, Craig Nova, John O’Brien, and Doug Whynott; to Fran, Nat, and Alice; and to Georges Borchardt, Evan Camfield, Benjamin Dreyer, Amy Edelman, John Graiff, Jamie Kilbreth, Jessica Kirshner, and Michael Siegel.
I want to express my gratitude to Didi and Catherine Farmer, to Jorge Pérez, to Serena Koenig and Carole Smarth, to the brilliant and lovely Mercedes Becerra, and to all the other members, past and present, of Partners In Health, especially the following: Ania Barciak, Donna Barry, Heidi Behforouz, Arachu Castro, Chris Douglas, Elizabeth Foley, Ken Fox, Hamish Fraser, Nicole Gastineau, Melissa Gillooly, Raj Gupta, Ann Hyson, Keith Joseph, Kathryn Kempton, Kedar Mate, Ellen Meltzer, Joyce Millen, Carole Mitnick, Mark Moseley, Joia Mukherjee, Kristin Nelson, Denise Payne, Michael Rich, Cynthia Rose, Aaron Shakow, Jenn Singler, Mary Kay Smith-Fawzi, Laura Tarter, Chris Vanderwarker, David Walton, and Michelle Welshhans. I wish to thank Gene Bukhman, Ed Nardell, and Peter Small for speaking to me about drug resistance in tuberculosis and other related matters. I am in debt to many others as well: John Ayanian, Ethan Canin, Jennie LaBalme, Anne McCormack, Todd McCormack, Haun Saussy, and Jackie Williams for sharing their reminiscences and insight; Leon Eisenberg, Byron Good, and Arthur Kleinman for talking to me about Paul Farmer’s student years and subsequent career; Guido Bakker and Richard Laing for helpful discussions about drugs and drug pricing; Liam Harte and Aaron Shakow for discussions about utilitarian philosophy and cost-effectiveness; Christine Collins for a tour of the Brigham; Elena Osso for helping to show me Carabayllo; Aryeh Neier for discussing the background of the Open Society Institute’s work on TB in Russia; Arata Kochi and J. W. Lee of WHO, also Mario Raviglione for long, pleasant conversations in Geneva; Jamie Maguire and Marshall Wolf for discussing Paul Farmer’s medical career with me; Julius Richmond for many long chats about PIH and international health; Michael Iseman for an interview about Paul Farmer’s work and for correcting some of my misconceptions about tuberculosis; the lovely Oksana Ponomarenko for making my trip to Siberia possible, and Tim Healing, Sasha Pasechnikov, and Sasha Trusov for helping to make it informative and congenial; Bill Foege and Mark Rosenberg for discussing a wide range of matters.