In the early 1990s, Jack left St. Mary’s for a church in a place called Carabayllo, a slum on the outskirts of Lima, Peru. On visits back to Boston, he kept telling Paul and Jim and Ophelia that PIH should start a project down there in his new parish.
Jim Kim agreed, eagerly. For about eight years Jim had happily served—very happily, he insisted—as Paul’s second in command or, as one member of the organization put it, PIH’s bayakou, Creole for a person who picks up excrement. He’d answered the phone at PIH, helped Paul get medicines and appliances for Zanmi Lasante, written grant proposals. When Paul had to get from the Brigham to a meeting, it was Jim who made sure he got there on time and who would escort him out of the hospital, saying, “Okay, Pel, we’re in a hurry. Only one hug and two kisses per janitor.” Now Jim wanted to do more. He wanted to learn how to do what Paul had done in Haiti.
Farmer wasn’t enthusiastic, but once he gave in, he did everything he could to help. First of all, he talked Tom White into putting up thirty thousand dollars, half the initial cost of the project. And Farmer gave Jim advice and encouragement almost daily, often in phone calls between Lima and Cange.
Jim planned to imitate a part of Zanmi Lasante. He’d create a system of community health workers in Carabayllo which they’d call Socios en Salud—a Spanish version of Partners In Health. He imagined a small health improvement project, but he wasn’t thinking small. He wasn’t capable of that. He envisioned a project so well-designed and managed that it would inspire imitation in other periurban slums all over the world. In photos from around this time, Jim appears as a neatly groomed, well-proportioned young man, a few inches shorter than Farmer, with jet black hair swept into a knifelike wave, and wire-rimmed glasses over narrow eyes. He had an expressive face. His eyes would disappear completely when he grinned. He talked fast, and he radiated intensity, especially at this moment. He was excited. He wrote a letter to Father Jack. “I have purchased the three-volume Pimsleur tape system and have committed myself to learning as much Spanish as I can as quickly as I can. Are there any books that you would recommend on Peru?” Almost as soon as he got to Lima, Jim started placing long-distance calls to Paul.
“Pel, you won’t believe what Father Jack just did. He’s hiring all these people because he feels sorry for them, and they can’t do the work.”
Paul would answer calmly. “Don’t confront Jack. You’re new there. Just keep on working.”
Various leaders in Carabayllo asked Socios to build a pharmacy, which would dispense free medicine to the most impoverished people in the slum. Socios erected the pharmacy right next to Father Jack’s church. But Peru was in the midst of a civil war, between the government and the Shining Path guerrilla movement. Some of the guerrillas, it was said, used Carabayllo as a bedroom, and they had their own ideas about what was best for the slum. On midnight on New Year’s Eve, while Jack was saying Mass, the pharmacy blew up. The church had a bank of glass front doors, but Jack liked to preach with them open, so none of the glass flew inward at the congregation. Word got back that guerrillas had planted the bomb because the pharmacy represented “crumbs for the poor,” a palliative designed to curb the growth of revolutionary fervor. Paul and Jim received the news philosophically. As a matter of fact, they were dispensing palliatives, they said. Partners In Health simply had the pharmacy rebuilt, in a different spot. There were many frustrations, small and large, many occasions when Jim felt insulted. Paul would tell him: “Remember, serving the poor in Carabayllo is more important than soothing your own ego. It’s called eating shit for the poor.” This sort of advice was always tonic for Jim. He’d feel as though catastrophe loomed, he’d call Paul and tell him about the problem, and Paul would say sympathetically, “Yeah, I remember something like that happened three times in Cange.”
Farmer also traveled to Lima, to conduct a health census in the slum, as Ophelia had helped him to do a decade ago in Cange. He found many of the same kinds of problems there, but none as acute. Naturally enough, after all his years in Haiti, he wondered if tuberculosis was a problem in Carabayllo. It had been, he learned. For a long time TB control in Peru had been haphazard, but the country had recently created a nationwide program. They’d done this with advice and assistance from the World Health Organization—WHO, a branch of the United Nations. Its pronouncements carry a lot of weight in poor countries, and WHO had declared Peru’s new TB control progam the best in the “developing” world. The praise seemed justified to Farmer when he read the official data. He’d remember, a bit ruefully, telling Jim, “The one thing we don’t need to do here is TB.”
Then Father Jack got sick. In May 1995 he flew to Boston, and Jim drove him to the Brigham, where the doctors diagnosed tuberculosis. The Brigham doctors put Jack on a standard regimen of four first-line TB drugs, a virtually foolproof cure in most locales. But Jack died about a month after starting therapy. A sample of his TB survived him, in a culture at the Massachusetts State Lab, where it was being tested for drug susceptibility. The results arrived a day or two after Jack’s death. They showed that the bacilli from his body were resistant to all four of the drugs he’d been given, and to the one other first-line drug as well.
On the plane to Lima for the memorial service, Farmer wondered aloud to Ophelia, over and over, what he should have done to save Jack. In the hotel room after the ceremony, it seemed as if Paul would never stop weeping. When they went down to dinner and the waiter asked if they wanted to sit in the no-smoking zona, Jim said, “How about a no-cry zone?” And Paul kept on crying but started laughing as well.
Sentiment and remorse became a goad. But the clinical facts of Jack’s death were the real issue. They altered Farmer’s view of Jim’s project. Before, he’d felt that if Jim really needed to do his own thing, Carabayllo made for a reasonable site, another needy place where PIH could help. Now it seemed likely that they’d happened on something much more complicated, also more significant, and maybe even frightening. Father Jack had never before been treated for TB, so there was only one way he could have contracted a five-drug-resistant strain. He had to have caught it from someone else, most likely in Carabayllo.
Back before Father Jack’s death, while helping Jim on the health census, Farmer had asked the project director of Socios en Salud if drug-resistant tuberculosis was a problem in the northern slums of Lima. The director—his name was Jaime Bayona—had examined the official records and found nothing. He’d decided to look further, though. He’d gone to various public clinics and asked the doctors and nurses if they had any patients with highly resistant strains. Invariably they said they did not. But often, Jaime noticed, they paused before answering. So he started asking his question in a different way: “Did you have any TB patients who came and were treated but weren’t cured?”
“Oh, sure,” one nurse had replied, and had proceeded to introduce him to an impoverished woman from Carabayllo named Señora Brigida. Jaime visited her. She told him her story. A government clinic had treated her for TB, but she had relapsed. Her second course of therapy had been interrupted by a strike of medical workers—the government of Alberto Fujimori had cut social service spending drastically, and the health workers had gone out in protest. Eventually her TB had been cultured and found to be resistant to four first-line drugs. She’d been re-treated again—with those very same drugs, strangely enough—and now she was sick again and coughing blood. Along the way doctors had accused her of “noncompliance,” and her son had died of TB, more than likely from a strain of the disease that he’d caught from her. Jaime had related the story to Farmer in the Lima airport just before Paul caught a flight to Miami. Farmer had promised to find the drugs to treat Señora Brigida, and he’d pondered her case, looking down at Lima from the airplane. If drug-resistant TB was abroad in the crowded shantytowns, he reasoned, it would spread across that sprawling city. He thought, “The Peruvian authorities are going to have to pay attention to this.”
But it seemed to Jaime Bayona that they were doing something like
the opposite. Jaime was Peruvian. He’d been an altar boy for a priest friend of Father Jack’s and had earned a degree in public health. Jim had recruited him to direct Socios. Jim had liked him at once—this small, quiet man in his thirties, a man of understated smiles, always neatly dressed, always pushing his glasses back up onto the bridge of his nose. In the aftermath of Jack’s death, Jaime stepped up his visits to the government clinics. He’d ask his question, and sometimes a nurse would bring out a stack of medical records and open them, saying, “We have something here that might interest you, but I can’t show it to you.”
And Jaime would say, “Okay, fine.” He’d push his glasses back into place and stare across the desk at the opened files. Soon he’d taught himself to read patients’ records upside down. Again and again he read stories of patients who hadn’t been cured by standard chemotherapy, or by repeated retreatment with first-line drugs. He’d saunter out of the health centers, then drive as fast as he could to the Socios office in Carabayllo, a concrete building that belonged to Father Jack’s church, now named the Father Jack Roussin Center. He’d hurry inside, sit down at his computer, and type up what he’d read, in e-mails addressed exclusively to Farmer and Kim.
CHAPTER 15
I first saw Carabayllo at night, in Farmer’s company. The road from the airport, four lanes and divided, felt very smooth, even after the driver turned away from the old Spanish colonial center and the skyscrapers of downtown and headed into the settlements of Lima’s northern outskirts. In the median, palm trees rustled past. I gazed out the car window at hillsides smothered in darkness but dotted with twinkling lights, as if by Japanese lanterns, pretty in the night. “Lima doesn’t seem like the third world,” I said.
“Oh, yes it is,” said Farmer. “You’ll see.”
Lima is a vast coastal city, vast and dry. In the daylight the northern neighborhoods seemed like an endlessly spreading slum, the roads choked with traffic and with motorcycle rickshaws and minibuses that served as public transportation, and the banks of the roads littered with broken-down vehicles and garbage, and garbage on fire, and with ramshackle-looking development, like American strip malls that had moldered before being completed. On cement-block walls, there were signs for bars and nightclubs and hairdressers and, everywhere it seemed, for doctors, with the prices for office visits painted on the walls. In the gloomy air of daytime Lima—the sun filtering down through thin fog from the Pacific, then through the perpetual ground-level strata of dust and hydrocarbons—I stood outside Socios headquarters and looked up toward Carabayllo’s hills and realized that the lights I’d seen the night before were mounted on highway-style pylons, towering over one-and two-room shacks. The hovels were perched on the sides of steep, gray-brown hills—giant heaps of sand and rock and nothing growing on them, except for the shacks and a few little gardens beside them and those weirdly outsize light poles.
Many of the people in Carabayllo came from Andean villages. They had jet black hair and high cheekbones. When he first saw them trudging up and down these hills, which they themselves compared to the surface of the moon, even Farmer, with all his firsthand knowledge of Latin American poverty, felt viscerally puzzled. He thought of the places the settlers had left behind, imagining pictures of wild green mountains in coffee table books about the Incas. Looking up at the electric pylons, though, he guessed their reasons. People he talked to told a familiar story, like stories he’d heard from peasants who had migrated to the slums of Port-au-Prince. They had come to Carabayllo in the hope of finding things their hometowns didn’t have: electricity, clean water, schools, medical care, and jobs, also distance from the war between the Shining Path and the Peruvian army.
On one side of Carabayllo, on the lowland beside the road, there were stores, garages, vendors’ carts, kiosks roofed with umbrellas, and, on side streets and the lower hillsides, thick clusters of small houses made of brick and concrete. The light poles and paved roads ascended the hills. The pavement turned to dirt, then roads turned into paths, and the houses grew more and more provisional. Scattered among them, there were dirt-floored convenience stores, metal-roofed cook shacks (where residents bought dinner because they couldn’t afford stoves and the fuel for stoves), barbershops, even graveyards. The air carried a strengthening smell of urine. There were no sewers up there, the only bathrooms secluded places among the boulders above the last dwellings. I looked out to the north. In the distance I could see a river, a line of green, but all around and high above only dirt and rocks. A couple of children were playing nearby with a ball. It got away from them. I watched the ball bounce downhill until I lost sight of it, thinking of gravity, sewage, and disease.
On these hillsides and down in the lowlands, Jaime Bayona had found, rather quickly, ten Carabayllanos with probable MDR. To confirm the diagnosis, samples of each patient’s TB had to be regrown in cultures and tested for drug susceptibility. The general procedure was more than a century old, but beyond the reach of many of the places in the world with the greatest burdens of TB. Peru’s national lab could do the work, but Socios didn’t have access to it. Farmer solved the problem as he’d long since solved it in Haiti, where he couldn’t get cultures done either. He took specimens from those ten patients and packed the jars in his suitcase, eventually depositing them at the Massachusetts State Lab outside Boston. He labeled the jars “Paul Farmer, TB Commissioner”—he was in fact a member of a state TB commission. He enjoyed these transnational diagnostic excursions, for him small acts of redistribution. But the results of the cultures were alarming. When it comes to treating MDR, every drug lost to resistance makes a cure more difficult and expensive, and most of the ten patients in Carabayllo had TB resistant not only to the two most powerful drugs but to all five of the first-line antibiotics, just like Father Jack. In Farmer’s experience, such severe resistance patterns were unusual, but here it seemed as if they might be the norm, and he wondered why.
Farmer flew from Haiti to Lima, and Jaime Bayona took him straight from the airport to a small health clinic, run by the government, at the base of the Carabayllo hills next to Father Jack’s former church, Cristo Luz del Mundo. A sign on the wall outside the clinic read EL PROGRESO. It was a dusty little concrete building with a small cabinet of medicines in a corner—most bathrooms in American homes were better stocked. The ten patients were awaiting the American doctor inside.
Farmer sat on a wooden bench, his stethoscope around his neck, and Jaime sat beside him, to act as interpreter—Farmer couldn’t yet speak Spanish. One after the other, the ten patients came in and sat down on a bench in front of Farmer. Some were so sick they had to be carried in. He studied their chest X rays—the outlines of the encysted cavities, swarming with bacilli, that TB had formed in the lungs of many; the extensive infiltrates that appeared as streaks of white, like cirrus clouds, against a black background; the voids where TB bacilli had eaten the upper lobes of lungs. He listened to their chests through his stethoscope, plugging his ear into their lungs as it were, hearing the crackles known as rales—the sounds of alveoli pulling open against fluid—and the prolonged wheezings called rhonchi—the patient’s breath rushing through narrowed airways.
Farmer was a TB expert. When he was still just a resident at the Brigham, he’d written a treatment manual for the house staff. He had been diagnosing and treating the disease ever since he’d first set foot in Haiti, where nearly everyone was infected and active cases were rampant. Now, as he studied the ten patients’ records, he was aware of a difference from the Haitian norm. In Cange his MDR patients usually told stories of therapy interrupted, by a strike or a flood or the abrupt closing of a clinic. Stories, that is, of severe resistance arising from too little medicine. These ten patients from Carabayllo had a different kind of case history. They’d received free treatment daily, under the auspices of the national TB program, strictly in accordance with the guidelines published by WHO. They’d undergone what the World Health Organization called DOTS. The initials stand for directly obse
rved treatment short-course chemotherapy, a very effective and inexpensive strategy, the same strategy Zanmi Lasante had been using for years. Farmer called DOTS the most significant advance in TB control since the advent of antibiotics. He applauded WHO’s plan to spread it all over the world. But here in Carabayllo, for these ten patients at least, something had gone wrong.
The first round of DOTS hadn’t cured them. When that happened, WHO guidelines called for retreatment with the same antibiotics, plus one. This prescription came from clinical trials in Africa, where it had worked well. In those trials it had seemed that most treatment failures arose because of patients’ noncompliance—because they hadn’t taken all their pills, not because they were infected with highly drug-resistant strains. So when a patient failed standard therapy, it seemed reasonable to try again, by merely strengthening the regimen a little and making sure all the doses were taken.
But the African studies were more than twenty years old, and Peru wasn’t Africa. For one thing, Peru hadn’t used the same drugs during its period of chaotic TB control. And dusty little clinic though this was, it had done its job properly. Farmer felt sure of that. The patients’ records showed they’d swallowed their pills under the direct observation of nurses and aides. Through Jaime, Farmer asked them, one after the other, if they’d taken all their doses. When they answered, saying that they had, he stared at their eyes. He’d been a doctor long enough, he felt, to sense a lie. He believed these people. Three were themselves health workers. They knew what pills they were supposed to take, and they, too, claimed they’d followed doctors’ orders.
Farmer leafed through their records, Jaime leaning over his shoulder, translating. These ten people had all been sick a long time. They’d been treated with DOTS, then treated again, and many had undergone further retreatments, and now all of them had four-and five-drug resistance. In his mind, Farmer reviewed the possible explanations. He’d already ruled out noncompliance, he felt, and poor drug quality couldn’t be blamed—international experts had certified the drugs’ efficacy. And these patients couldn’t have caught the same highly resistant strain, because each one’s TB had a slightly different pattern of resistance.