But Christian, the little boy in the hall, made an eloquent argument for adding flexibility to the normas. “A couple more cases like Christian’s and they’ll come around,” Farmer was saying as we walked across the parking lot toward the Socios car. Then, turning to open his door, Farmer saw Christian’s mother, the woman in the Mickey Mouse shirt. She had followed him at a distance. Now she approached, lowered her eyes, and said in Spanish, “I want to say many thanks.”
Farmer looked away, just a quick glance to left and right. I’d seen him do this in patients’ rooms at the Brigham—look at the patient, then glance up at the TV for a moment, then return, as if disconnecting so as to reconnect fully. He gazed at the woman and pursed his lips and said softly in Spanish, “For me, it is a privilege.”
CHAPTER 18
In April 1998 a special meeting of “TB” was convened at the American Academy of Arts and Sciences in Boston, a meeting to present early results from the small MDR-treatment project in Peru. The meeting was Howard Hiatt’s idea.
Socios was now treating more than one hundred people with MDR in the northern slums of Lima. They had been treating the first fifty-three for the better part of two years, and the results were in. It appeared that more than 85 percent were cured. Their patients were younger on average and had fewer accompanying illnesses than Dr. Iseman’s in Denver, and as with many diseases, youthfulness and the absence of comorbidity were therapeutic advantages. Even so, the cure rate was remarkable. “An astonishing result,” Howard Hiatt had said. The world must hear this news, he’d declared. He hoped, among other things, that if the right people heard it, PIH might be able to secure new financing for their project.
A lot of the world’s ranking tuberculosis experts had agreed to come to the meeting, including Arata Kochi, the head of WHO’s TB program. Farmer had cultivated him. Equally important, Kochi had been a student of Hiatt’s at the Harvard School of Public Health.
Kochi had labored for years to sell DOTS to the world, and as I understood his motives, he felt he had to quell the bad publicity Farmer had begun stirring up. Before the meeting he had decided that WHO should probably have a strategy that included MDR treatment in places where there was significant drug resistance. One of his staff had come up with a new, catchy term, “DOTS-plus.”
Some years after the event, Arata Kochi told me, in his clipped English (Japanese is his native tongue): “MDR is basically because of human errors. If you can’t treat it right, don’t do it. Secondly, many country can’t afford. Difficult, expensive. And of course we use MDR as kind of a scare tactics. But in program review in South Africa we found thirty-four percent of whole TB budget for a few cases of MDR, and they had a lousy DOTS program. We said, Use your money for DOTS. Then Paul Farmer came. A very different approach. Similar to HIV activists. All good clinicians without significant public health experience. Patient in front of me is the most important thing. An unsolvable conflict. They are very articulate and issue is very emotional. How to react? Tremendous challenge for me. These guys, they are screaming. They want to shoot us. Politically we have to respond. Positively. Same time we have to start dialogue.”
Kochi used the term DOTS-plus in his opening remarks at the meeting. “That’s brilliant! That’s great!” Jim Kim told him later, over cocktails. So Farmer and Kim got some of what they hoped for from “TB” before the meeting even started. Speaking about all this some years later, Kochi smiled and said, “DOTS-plus. The world is changing. We have to change, too. If you cannot beat them, join them.” He added, “Then, to some extent, we can control them.”
Kochi had made a strategic concession. In effect, he’d made MDR treatment discussable. But the discussion itself was just beginning.
When panels on international health gather, whether in Switzerland, Indonesia, or Boston, they occupy one place and atmosphere. A room with a huge table or many tables made into a giant rectangle, bottled water and name cards at each seat. Over the rattle of coffee cups, to the shuffle and click of the slide projector, the experts read their prepared remarks, technical terms and acronyms abounding, now and then old saws—“Don’t let perfect be the enemy of good.” In the corridors and hallways outside the lecture rooms, you might, for instance, hear an Italian TB expert say of a Canadian one, “I am going to physically aggress him!” But inside the rooms, calm usually prevails. It’s easy to drift away on the voices, imagining colors in the accents—pinks and purples from the Caribbean and the Indian subcontinent, black and white from Japan—and forget that what is really going on is the writing of prescriptions that may affect the lives of billions.
Hiatt presided, tall and thin, uttering the opening remarks at his usual deliberate pace, as if his tongue weighed every word. The atmosphere was civil, but there were a few heated discussions on scientific issues. An argument of a different sort began on the afternoon of the first day of the meeting, when a bearded man named Alex Goldfarb leaned over his microphone and said, in sonorously accented English, “So. Russia is a TB nightmare.”
Goldfarb was a rumpled-looking microbiologist, a former refuse-nik in the latter days of the Soviet Union. He was working now for the Soros Foundation on the TB epidemic in Russia. One hundred thousand of that country’s prison inmates had active TB, Goldfarb said, and most if not all were being treated with the worst possible regimen—with a single drug—because the government hadn’t come up with the money to buy more. “So. It is a nightmare. So most of these one hundred thousand inmates will probably die without ever knowing whether they have MDR-TB or not.” His group was trying to sort things out and “eemplement some sort of rational approach.” They were setting up demonstration projects, DOTS projects, in several places. There was no telling yet how many Russians had MDR, but it was certain the percentage in the prisons was high.
“Now what to do with these cases?” Goldfarb asked. He answered, “I do not have the slightest idea.” He turned to Farmer. “And I would very much like to know, how much drugs did you use for your fifty-three cases and how much did they cost? We can probably try to eemplement MDR treatment, at least in prison. I don’t think it can be done in the community in Russia, but in prison, at least, if there is money. But the question is the cost.”
Farmer mustered the best case he could, but in the end he had to name the real figures. “I’m not saying that it’s not expensive. It’s been very costly. I’m not saying that it’s not going to be difficult. But I will say, as Dr. Bayona has suggested, that we have managed to overcome those obstacles for that small number of patients. And that leads me to believe that it would be possible ultimately …”
A PIH ally raised her hand. Costs would only rise if the world delayed in taking on MDR, she said. But another expert said, “I’m not sure that no matter how compelling a case that this group or any other group makes, there’s going to be all of a sudden an outpouring of money to treat.” Others raised their voices. Another PIH ally declared, “I don’t think this is a conference of donors, so I don’t think we should be expected to come out of this with pledges, but to say that this is something that the world should pay attention to. I remember signing the oath to assist the patient and do him no harm. I don’t really remember signing that I would do it in a cost-effective way.” There was scattered applause from the young PIH-ers in the room.
Then Goldfarb spoke up again, his voice calm and acidic. “I want to share with you a simple reality. I have six million dollars. With three million dollars I can eemplement DOTS for five thousand Russian prison inmates. And assuming that ten percent have MDR-TB, forty-five hundred will be cured and five hundred will go down with MDR-TB and die. And there’s nothing much you can do. So. I have a choice. And my choice is to use another three million dollars to treat the five hundred with MDR-TB, or go to another region and treat another five thousand. I’m working with leemited resources. So my choice is not involved in the human rights of five hundred people, but five hundred people versus five thousand people. And this is a very practical questio
n for me, because I have six million dollars. And the second question is that if I disclose to the Russian people that I spent six thousand dollars per case in MDR-TB in the prisons with tens of thousands of people dying all around, they will tell me that I am building a golden palace for a selected few. So for those of us who have to make those decisions with leemited resources, it’s a very serious question.”
There was consternation in the room. Hiatt had to bang the gavel. He asked Goldfarb if he couldn’t see his way to using some of Soros’s money, in a pilot project perhaps, to address the question of how MDR affected DOTS.
“Well, I’m sorry,” Goldfarb retorted. “I have to comment. When we talk about Mr. Kochi, who’s not doing an experiment but whose job is to try to control TB globally, there is a different set of priorities. I can’t afford doing a pilot project. We’re not doing a pilot project.”
“My understanding,” said Hiatt pleasantly, “is that my former student, Dr. Kochi, is thinking about control of tuberculosis, not just in 1998 and ’99, because he recognizes that he’s not going to control the problem worldwide, but is thinking about controlling the problem over the next decade, or decades.”
The young PIH-ers glared at Goldfarb. But he’d made an argument that they’d have to answer, sooner or later.
Jim Kim tried rhetoric first in the opening speech the next day. Many people had asked him, he told the crowd, why a little organization like PIH had taken on such a costly and difficult task in Peru. They were right to wonder. “We actually had to make a choice that we would not feed four thousand more children in Haiti perhaps. And if any of you have been to Haiti, there’s hardly anything more morally compelling than the situation of landless peasants in the central plateau.”
But, Jim went on, they’d had “a dream”: “the dream that someday we might sit in this room.” That there might be “a TB All-Star Weekend.” He said, “We took on this project because we thought that by proving that one could do community-based treatment of multidrug-resistant TB, that we might have the opportunity to work with a roomful of people like you. To actually expand resources to a problem that afflicts the populations we serve.”
Other speakers had talked about the need to generate “political will” for treating TB, as if each country had to solve its own problem. But, Jim said, political will was hardly the issue in a place such as Zaire, whose most recent president had stolen about 30 percent of the money loaned by foreign governments and the World Bank. For places like Zaire, money to deal with TB and MDR-TB would have to come from elsewhere. “There are more billionaires today than ever before,” Jim declared. “We are talking about wealth that we’ve never seen before. And the only time that I hear talk of shrinking resources among people like us, among academics, is when we talk about things that have to do with poor people.” The PIH project in Peru could be replicated, and some of what was needed were endorsements from “academics with clout” and the support of “the TB community.”
Jim said, “And let me just conclude this, my brief remarks here at this TB All-Star Weekend, by paraphrasing someone of our tribe, of Paul’s tribe and my tribe of anthropologists. Margaret Mead once said, Never underestimate the ability of a small group of committed individuals to change the world.” He paused. “Indeed, they are the only ones who ever have.”
CHAPTER 19
Many of the policy makers in TB control had now heard the case—the fine clinical results from Peru, and epidemiological evidence that DOTS would fail in a setting of substantial drug resistance. The meeting had also produced—of course—a committee to study the feasibility of DOTS-plus programs. But the arguments about treating MDR were far from over.
In international health near the turn of the twenty-first century, a mentality nearly opposite to Jim Kim’s optimism prevailed. It borrowed from the nineteenth-century utilitarian philosophers, from the notion that one should provide the greatest good for the greatest number, and it was expressed in a language of realism. The world had limited resources. Nations whose resources weren’t just limited but scarce had to make the best possible uses of the little they had. Other countries and international institutions might help out, but these days, if you wanted money from big donors for health projects in poor countries, if you wanted to be taken seriously, your proposals had to pass a test, called cost-effectiveness analysis.
The general technique was used first in engineering, later on in war and medicine. You calculated the cost of a public health project or medical procedure and tried to quantify its effectiveness. Then you compared the results for competing projects or procedures. Farmer and Kim made similar calculations when trying to decide what to do next in Cange. But it seemed to them that the high councils in international health often used this analytic tool to rationalize an irrational status quo: MDR treatment was cost-effective in a place like New York, but not in a place like Peru.
By the time of the meeting in Boston, the project in Peru had begun to establish a new paradigm. It was a challenge to the uses of cost-effectiveness analysis not only philosophically but also factually. The World Health Organization had declared MDR treatment largely ineffective, but not on the basis of any substantial trials. Now Kim and Farmer and Jaime Bayona and the others in Socios had proven that effective treatment was possible, even in a slum in a relatively poor country. Experts in TB control had declared MDR treatment inordinately costly, but no one had tried to reduce the main expense, which was high-priced drugs. Shortly after the Boston meeting, Jim Kim went to WHO headquarters in Geneva. No one he talked to there even knew that the patents on all but one class of the second-line antibiotics had expired years ago. And no one there seemed very interested when he declared, “We can drive down the prices by ninety to ninety-five percent.”
Jim didn’t know exactly how to make that happen. Make the assertion, then figure out the means—this was his strategy. “The big-shot strategy,” Farmer called it, approvingly.
Jim was born in South Korea and grew up in Muscatine, Iowa, in the 1970s. For as long as he could remember, the place had seemed too small for his ambitions. He hardly noticed the Mississippi flowing by the lovely old downtown or the fragrances of grains on summer nights or even the famous local produce, the Muscatine melon. He detasseled corn only once. But, like every schoolboy in town, he knew Mark Twain had praised Muscatine for its sunsets—and didn’t know for decades that Twain had said this only to make a joke about his sleeping habits: “The sunrises are also said to be exceedingly fine. I do not know.”
Jim’s father had schemed and charmed his way out of North Korea and become, proudly, Muscatine’s periodontist, with an office upstairs on Main Street. Jim’s mother had come from South Korea—a grandfather had served as a minister to the last Korean king—and she had studied at Union Theological Seminary with Reinhold Niebuhr and Paul Tillich and become a Confucian scholar, and ended up for many years a housewife in Muscatine. A small, elegant woman walking across the local golf course when her children were too young to play alone, diligently trying to make sense of American sports so she could understand her children’s milieu. At every opportunity she took Jim and his siblings to Des Moines and Chicago so they’d know the world was larger than it seemed from Muscatine. She taught her three children, by example, the arts of debate around the kitchen table, while her husband, who had early morning appointments, went to bed grumbling that he didn’t know what they had to talk about that was more important than a good night’s sleep. She’d tell them to live “as if for eternity” and tutor them on current events, translating for Jim the images of famine and war that upset him on the TV news. Early on, Jim imagined himself becoming a doctor to treat such suffering, and excelling in science quickened his interest.
He was quarterback on the Muscatine High football team, a starting guard in basketball, the president of his class and its valedictorian. But the Kims were the only Asian family in town, except for the one that owned the Chinese restaurant. When they went to the malls of Iowa, adults stared
and children followed them around, the bolder ones approaching, crying out, “Kiai!” and making as if to deliver karate chops. For Jim, embarrassment at his parents’ Koreanness was the loneliest feeling of all. “Go, Hawkeye!” his father, booster of all things Iowan, would cry, Koreanizing the cheer for the University of Iowa’s sports teams. Jim would correct him: “No, Dad. It’s Hawkeyes.”
He went to the University of Iowa and felt liberated there until he was told that Ivy League schools were better. He transferred to Brown, where he discovered an organization called the Third World Center. He became its director. He broke up with his Irish Catholic girlfriend because he suddenly believed he shouldn’t date white women. He made his friends among black, Hispanic, and Asian students. He learned “the pimp walk.” On parents’ weekend he and his friends would dress up in black and stride around the campus, a phalanx of about thirty African American and Hispanic students, and one Korean, sometimes chanting, sometimes maintaining a threatening silence, and noting with pleasure the double takes and frightened looks on the faces of some of the parents.
Before Brown, Jim hadn’t known that the United States interned Japanese Americans during World War II. He read up on the subject, then lectured about it. He embraced the idea of Asian “racial solidarity.” He didn’t realize back then just how complex a matter this could be. He didn’t find out until much later that, for example, Koreans were supposed to hate the Japanese. From time to time, doubts cropped up. It seemed as if, for other Asians at Brown, racial identity meant little more than eating with chopsticks and finding an Asian mate, and the paramount political issue seemed to be the “glass ceiling,” the fact that Asians weren’t yet rising to the very tops of institutions. But the idea of being a member of an oppressed minority was very alluring. Jim decided to learn his native language. “I wanted to learn Korean, be down with my people, be an authorized third world person, so I could say shit.” He got a fellowship to travel to Seoul and happened on an interesting story for his Ph.D. thesis in anthropology—it had to do with the Korean pharmaceutical industry. In Seoul he did his research and made a mighty effort to fit in, hanging out at bars with new Korean friends and performing karaoke—beforehand on each occasion, he’d go to the bathroom and study the words to songs like “My Way.”