There was one other possibility. Suddenly, suspicions that had been forming in Farmer’s mind seemed likely, indeed inescapable.
The dynamics of tuberculosis make it nearly impossible for a person to acquire resistance to more than one drug at a time, but repeated improper therapy can select for increasingly resistant mutants and create strains resistant to any number of drugs. This was what must have happened to these ten people, Farmer thought. They had gone to the clinics with one-or, more likely, two-drug resistance, and through treatment and repeated retreatment under the standardized DOTS formulas, they had emerged with four-and five-drug resistance. The biological principles were elementary. It wasn’t as if Farmer imagined that he had come up with new science. But for a moment, sitting on the bench in the clinic, the pieces falling together in his mind, he felt an old familiar pleasure. The motion of his mind toward root causes had always excited him. He loved the challenge of diagnosis and all its accoutrements—the stains on the microscopic slides, the beautiful morphologies of the creatures under the lens. But what he called “the eureka moment” had a bad aftertaste this time. Later he would tell me, “God, I’d hate to ever feel triumphant about something so rotten.”
There was a proper procedure for dealing with resistance. When a patient didn’t get better on standard therapy, a doctor should suspect that the TB was impervious to some drugs in the regimen and should find out which drugs as quickly as possible and substitute others. Giving patients the wrong drugs was both useless and dangerous. It could lead to what infectious disease specialists call “recruitment of further resistance.” The term exactly described the process that Farmer saw in the ten patients’ records. He chose to call the process “amplification,” because that term sounded worse. These ten Peruvians had gone to the doctor sick and emerged, about two years later, sicker, their TB becoming resistant to more and more drugs as it went on eating their lungs. Not because they hadn’t followed doctors’ orders, but precisely because they had. And those orders weren’t simple acts of stupidity or carelessness. They were enshrined as official policy. They came from on high, from the people in charge of Peru’s TB program, who had gotten them from Geneva, from the World Health Organization itself.
The story, as Farmer pieced it together, became increasingly painful. After amplifying resistance in these ten patients, the national program had essentially abandoned them. Tuberculosis patients could consult private pulmonologists, but they had to pay for the visits and for the very expensive second-line drugs the pulmonologists prescribed. Farmer and Kim and Bayona would soon meet people whose families had sold most of their meager possessions and had bought as much of those drugs as they could. Not enough to get cured, however, only enough to acquire still further resistance. Others had given up and gone back to their shacks on the barren, dusty hillsides and were waiting there to die.
In effect, WHO had prescribed this for them, too. The official DOTS manual contained the following statement: “In settings of resource constraint, it is necessary for rational resource allocation to prioritise TB treatment categories according to the cost-effectiveness of treatment of each category.” Farmer and Kim began collecting a number of official WHO statements. Some put the case more plainly: “In developing countries, people with multidrug-resistant tuberculosis usually die, because effective treatment is often impossible in poor countries.”
For Farmer, and for Jim and Jaime, there was a larger principle involved. A TB epidemic, laced with MDR, had visited New York City in the late 1980s; it had been centered in prisons, homeless shelters, and public hospitals. When all the costs were totaled, various American agencies had spent about a billion dollars stanching the outbreak. Meanwhile, here in Peru, where the government made debt payments of more than a billion dollars every year to American banks and international lending institutions, experts in international TB control had deemed MDR too expensive to treat.
CHAPTER 16
Peru had established its rigorous TB program, its model WHO program, only four years back, in 1991. This was after decades of inadequately financed and unsupervised treatment, which had spawned drug-resistant strains. It seemed likely to Farmer that these had spread fairly widely. Jaime Bayona had already turned up dozens of probable cases, and he had done this working alone, reading records upside down. So while they didn’t know exactly how many people in the slum had MDR, Kim and Farmer felt pretty sure that there would be more than a handful, more than the ten Jaime had brought to the clinic for Farmer to examine. And the prospect of treating more than a handful was daunting.
Some time ago, when he’d first encountered MDR in Haiti, Farmer had gone to a man named Michael Iseman for advice. Iseman was the world’s foremost clinical authority on the disease, and he worked in the world’s best MDR treatment center, National Jewish in Denver. And yet in 1993 he and his colleagues had reported cure rates of only about 60 percent and costs that had run as high, in one especially difficult case, as $250,000. The disease was hard to treat anywhere, and bound to be harder, if less costly, in Carabayllo than Denver. The main tools, the so-called second-line drugs, would have to be imported. They were very expensive. Some were scarce. All were weak and had nasty side effects, which a patient had to endure for about two years—in the best case, stomachaches and months of intramuscular injections; in the worst, hypothyroidism, psychosis, and, if the doctor wasn’t careful, even death. Most of the patients in Carabayllo would be impoverished. Most would need not just drugs and careful monitoring but encouragement and food and new roofs and water pipes.
Paul and Jim and Ophelia talked again and again, in Boston and on airplanes and by e-mail, about whether they should take on this problem. But there really wasn’t much question of turning away. Jim took an expansive view: “Forgive me for saying this, but the great thing about TB is that it’s airborne.” Tuberculosis was only predominantly a disease of the poor, Jim reasoned. Others got it, too, just from breathing. In the era of AIDS, the affluent world would have to pay attention to the threat of a TB so difficult to treat, and to the dire but real possibility that “superbugs,” strains resistant to every known antibiotic, would spread across borders—between homeless shelters and Park Avenue in New York, between poor and wealthy nations. “We’ve got to say, ‘MDR is a threat to everyone,’ ” Jim declared. “We can scare the world, and if we do this project right, we can have a global impact.”
“Okay,” Paul said. “But let’s try ten patients first.”
They started treating patients late in August 1996, transporting Zanmi Lasante’s TB program to Carabayllo, and tailoring it to MDR and other local circumstances. They already had an indigenous team: a group of young Peruvians trained as community health workers and Jaime to direct them. Farmer and Kim also imported a small crew from Boston: a brilliant epidemiologist named Meche Becerra, still in training at the Harvard School of Public Health, and two female students from Harvard Medical School, protégées of Farmer and Kim, who came virtually to live in Carabayllo, sleeping in one of the small rooms upstairs in the Father Jack Roussin Center. The medical students examined the patients and managed side effects, not as if they were real doctors yet but as Farmer’s pupils. The entire medical team—the students, Jaime, a Peruvian doctor, several nurses, and Farmer—exchanged information by e-mail daily. Farmer sent orders in great detail and devised the drug regimens for every patient, inventing tricks, as he put it, for the most resistant cases. For a time, Jim did some doctoring himself, then turned exclusively to training and management and, later, attempts at fund-raising. They had many problems, especially at first. When, for instance, the health workers learned they’d be visiting the homes of MDR patients, they staged a small insurrection, demanding more pay. Jim and Jaime quelled it in a typical PIH way—Jim arranged a university scholarship for the ringleader, which took him away to Mexico. But the greatest difficulty, the only one they couldn’t seem to solve, had to do with politics.
The Peruvian authorities didn’t want to hear that their
model TB program had a flaw, and it didn’t help that Harvard doctors brought the news. Some of the authorities were downright hostile. Médicos aventureros, adventuring doctors, one Peruvian physician called Farmer and Kim. One said to Jaime, “Paul Farmer, he’s a gringo. How could a gringo know about TB? There’s no TB in the United States.”
“He looks like a gringo,” Jaime answered mildly. “But he’s a fake gringo.”
Neither Paul nor Jim had a license to practice in Peru. Early on, the TB director himself threatened to expel them—and he might have, if Jim and Paul and Jaime hadn’t pleaded with a friend of the director’s, a nun, to intercede on their behalf. But though they were allowed to continue, they had to get official permission to treat every MDR patient they found, and the authorities insisted that las normas, the norms of the national program, be strictly observed. All patients had to complete standard treatment and retreatment before their cases could be deemed “treatment failures.” Only then could Socios take over.
Soon, these rules became excruciating. One of the young Harvard doctors—her name was Sonya Shin—had found a probable MDR victim in Carabayllo, a young man named David Carbajal, and though both she and Farmer had begged the authorities, they weren’t allowed to treat him. So young Sonya had to watch him die. Afterward, she helped David’s sister shave his face and clothe him for the funeral. Consoling Sonya, David’s parents said, “It’s a problem in the system. The system couldn’t do another regimen, because of the fear they would be admitting a bigger problem.” They understood the circumstances more clearly than Farmer, in his fury, could. He wrote an angry letter to the TB managers. This had no effect at all. Inappropriate behavior in a foreign doctor, they replied.
Jaime had already tried to reason with his countrymen, the Peruvian TB authorities, asking that they let Socios have patients earlier, at least once the first round of DOTS had failed and before patients went through the standard retreatment regimen. Socios would pay for everything, he had said. But the leaders of the program demurred. They didn’t want to set a precedent, they explained. Though he didn’t agree with them, Jaime understood their reasons.
Peru’s TB program had come into being back in 1991 largely because of protests staged by residents of places like Carabayllo and by their nuns and priests. Some current leaders of the program had joined in the demonstrations. In an era of fiscal austerity in Peru, they had managed to get the government to put up the money for DOTS, and they had used it well. They had ended decades of improper treatment. A scandal about MDR now might threaten all their hard-won progress. But if they let Socios create a new standard for dealing with MDR around Carabayllo, they would have to meet that standard throughout the country. They didn’t have the money to do that, not unless they took it from their DOTS program, and that would mean a return to the conditions that had spawned MDR here in the first place.
The Peruvians didn’t have Paul’s or Jim’s freedom of action. It would only hurt their cause if they complained, for instance, that they could afford to treat all strains of TB for just a fraction of the money President Fujimori was spending on fighter jets. Besides, the Peruvians hadn’t invented the normas. In January 1997, after David Carbajal had died, Jaime told Farmer, “If you want to change this, forget the national program. You have to go to higher authorities.”
Farmer agreed, and he thought he knew a suitable forum.
He’d been invited to give a speech about tuberculosis in Chicago at the end of February—at the annual North American meeting of an old and distinguished organization called the International Union Against Tuberculosis and Lung Disease. Officials from WHO’s TB division would be on hand, along with many bureaucrats and public health specialists and medical school professors, all members of the confederacy of people who had made TB control the principal work of their lives. In Geneva once, I heard several of them refer to their tribe as “TB,” in phrases such as “TB and HIV have to work together.”
Farmer had some friends in “TB”—it was an old friend who had arranged this speaking engagement. But many members of “TB” had never heard of Farmer. Safe to say that many people at the lecture would know less about his ideas than he did about theirs.
Farmer knew that a lot of his audience didn’t believe one should treat MDR in an impoverished locale: treatment was too expensive and difficult in such a setting, and treating it was probably unnecessary, because MDR wasn’t as contagious or virulent as regular TB and would likely die out in the face of a good DOTS program. In other words, a lot of the audience would view what Socios was doing in Carabayllo as quixotic, even heretical. Farmer also knew that many members of “TB” would view him as a mere clinician, too interested in patients to see the big picture—to see that what was really important wasn’t curing individuals but stopping the transmission of the disease. He rejected that idea utterly: paying attention to individual patients was a moral imperative; it was also essential to controlling TB in communities, as he’d proven in Cange. But he didn’t want to rile up the audience too much. So he’d written what he called a “wimpy” talk. A few days before traveling to Chicago, he rewrote it.
The revised speech began temperately enough, but then Farmer intoned from the lectern, “Myths and mystifications about MDR-TB,” and began reciting a rather long list. He read a quotation from WHO: “MDR-TB is too expensive to treat in poor countries; it detracts attention and resources from treating drug-susceptible disease.” But was treating MDR-TB really too expensive? he asked. “Even if TB control is to be governed by considerations of cost-effectiveness, it should be easy to show that failure to diagnose and treat MDR-TB is what is really costly.” The audience should consider the case of the family in Texas in which one member had exposed nine others to MDR. “Care for these ten persons alone exceeded one million dollars.”
Myth number two: Some people thought that DOTS alone would stop outbreaks of MDR. This was nonsense, Farmer said. What would happen, he asked the audience, if programs treated drug-susceptible TB successfully and let MDR flourish? Transmission of MDR would continue, and even where MDR cases were now a tiny percentage of all TB cases, their relative importance would grow. Moreover, DOTS would amplify already existing drug resistance. In short, failure loomed for programs now deemed success stories.
What about the belief that MDR was less virulent and contagious than regular TB? Mere wishful thinking, Farmer said, moving on through his list of “myths and mystifications,” through, that is, notions shared by many in “TB.” He might as well have called half of his audience fools and villains.
“Thank you, Paul, for that provocative talk,” said the moderator, a TB specialist from the U.S. Centers for Disease Control, a friend of Farmer’s named Ken Castro.
Farmer was on his way offstage. He turned back. “Excuse me, Ken, but why do you qualify my talk as provocative? I just said we should treat sick people, if we have the technology.”
In Lima a few days later, Jaime Bayona heard a rumor that someone in the audience had called the director of Peru’s national TB program and told him, “Paul Farmer says you’re killing patients.” But at least his protest was lodged, and the higher authorities had noticed.
CHAPTER 17
Back in 1994 Ophelia had written, in a letter to Paul: “I am grateful to know about your budding relationship with Didi, and I am pleased for you, really I am.”
The new woman in Farmer’s life, Didi Bertrand, was the daughter of the schoolmaster in Cange, and “the most beautiful woman in Cange,” people at Zanmi Lasante often said. Farmer had known her for a long time and had courted her for about two years when they got married—in Cange in 1996, in the midst of the hectic early phase of the project in Peru. Jim Kim and an old friend from Duke were Farmer’s best men; Père Lafontant and three Catholic priests presided; about four thousand people came, including all of Cange. Somehow Farmer found time for the ceremonies, and for a second wedding reception back in Boston.
By now Peru was taxing PIH’s resources severely
. On average, the drugs to treat just one patient cost between fifteen and twenty thousand dollars. And the number of patients kept growing. Already there were about fifty Carabayllanos in treatment. Their average age was twenty-nine. They were students, unemployed youths, housewives, street vendors, bus drivers, health workers. The actual numbers seemed small, but those fifty MDR cases represented about 10 percent of all active cases of TB in the slum, about ten times more than might have been expected. No telling how many others they had been infecting as they’d traveled around Lima, coughing. No telling either how many people in other parts of the city already had MDR, but Jaime was collecting reports of hundreds in other neighborhoods. In Carabayllo itself, the Socios workers found entire families sick and dying with what turned out to be genetically related strains of the disease—a phenomenon common enough that the health workers gave it a name, familias tebeceanas, tuberculosis families.
Ophelia worried. What had once looked like a manageable project seemed to be metastasizing. When Paul and Jim described the project as an AMC, she’d say, “That’s fine, boys. I agree. But where’s the dosh?”
At the Brigham, a friend of theirs named Howard Hiatt was asking himself much the same question. Hiatt was in his seventies and a personage in medicine—a former dean of the Harvard School of Public Health and former chief of medicine at Beth Israel Hospital, now a professor at Harvard Medical School. He was charged, among other duties, with lending advice and assistance to young doctors pursuing unconventional careers. Paul and Jim were among his favorites, and they were making him nervous. Where, he wondered, were they getting their second-line drugs? How in the world were they paying for them? Then one day the president of the Brigham stopped Hiatt in a corridor. “Your friends Farmer and Kim are in trouble with me. They owe this hospital ninety-two thousand dollars.”