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Friday, May 6, 2011

Great Reading: Mountains Beyond Mountains

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Tracy Kidder Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World.  2003

    Tracy Kidder met Paul Farmer when Paul was 35. Farmer had graduated Harvard Medical School, also with a PhD in anthropology from Harvard. Worked in Boston 4 months of the year, living in a church rectory in a poor neighborhood, worked the rest of the year without pay in Haiti. Saw himself as a poor people’s doctor and an action kind of guy. About medicine, “I don=t know why everybody isn’t excited by it.”
    He claimed as his mentor, Rudolf Virchow, the principle architect of the foundations of scientific medicine--the first to propose that the basic units of biological life were self-reproducing cells, and that the study of disease should focus on changes in the cell. Virchow made important contributions in oncology and parasitology, coined at least fifty medical terms still in use today, defined the pathophysiology of trichinosis, led a successful campaign for compulsory meat inspection in Germany, designed a sewage system for Berlin that transformed it from a fetid sty into one of Europe’s healthiest cities, found a nursing school and hospitals, was a practicing archaeologist who played a role with Schliemann in discovering Troy, helped to define the field of medical anthropology, was a teacher, physician, and politician (so effective that Bismarck once challenged him to a duel). Most important to Farmer was Virchow’s emphasis on a fundamental law of epidemiology: “If disease is an expression of individual life under unfavorable conditions, then epidemics must be indicative of mass disturbances of mass life.” For this his prescription was “full and unlimited democracy.” Among other apt conclusions, Virchow had stated: “Medicine is a social science, and politics is nothing but medicine on a large scale…It is the curse of humanity that it learns to tolerate even the most horrible situations by habituation…Medical education does not exist to provide students with a way of making a living, but to ensure the health of the community...Physicians are the natural attorneys of the poor, and the social problems should largely be solved by them.”
    Tracy Kidder started out with the attitude, “The world is full of miserable places. One way of living comfortably is not to think about them or, when you do, to send money.”
    Haiti has the distinction of being Latin America’s first independent nation and the world’s first black republic. Haiti is the poorest country in the Western Hemisphere. Per capita incomes are about one America dollar a day. It has the worst health statistics in the Western world. 25% of Haitians die before they reach 40.
    Paul did his main work in Cange in central Haiti, which he first encountered in 1983, in a hospital that he built known as Zanmi Lasante (“Partners in Health”). Patients were supposed to pay user fees, about 80 cents per visit. As the policy was enforced, every patient had to pay the eighty cents, except for women and children, the destitute, and anyone who was seriously ill. And no one, Farmer ruled, could be turned away. A million peasant farmers relied on Zanmi Lasante. A hundred thousand lived in its catchment area, which was served by 70 community health workers. Seven doctors worked there. Zanmi Lasante had built schools and houses and communal sanitation and water systems throughout its catchment area. It had vaccinated all the children, and had greatly reduced both local malnutrition and infant mortality. It had launched programs for women’s literacy and for the prevention of AIDS; in its catchment area it had reduced the rate of HIV transmission from mothers to babies to 4%, about half the current rate in the US. In Haiti, tuberculosis still killed more adults than any other disease, but no one in Zanmi Lasante’s catchment area had died from it since 1988. The money came from a small public charity set up by Farmer called “Partners in Health” with headquarters in Boston. It cost about $150 to $200 to cure an uncomplicated case of TB (vs. about $15,000 to $20,000 in the US).
    Mr. Kidder noted that his local hospital in Massachusetts was treating about 175,000 patients a year and had an annual operating budget of $60 million. In 1999 Zanmi Lasante treated roughly the same number of people for about $1.5 million.
Farmer’s lifestyle involved about 4 hours of sleep a night, no investment portfolio (his paycheck went straight to PIH), no family around, no electricity, no hot water, and lots of unsavory food, what he called “the fifth food group.” Of his work he says, “I feel ambivalent abut selling my services in a world where some can’t buy them. You can feel ambivalent about that, because you should feel ambivalent. Comma.” [“Comma” is a Farmerism that is short for “asshole.”]

    Dr. Farmer speaks of “WLs”—White liberals. “I love WLs, love ‘em to death. They’re on our side. But WLs think all the world’s problems can be fixed without any cost to themselves. We don’t believe that. There’s a lot to be said for sacrifice, remorse, even pity. It’s what separates us from roaches.”
    When he first came to Cange he started his work with a simple needs assessment. He enlisted five Haitians and went from hut to hut through Cange and two neighboring villages tallying up the numbers of families, recent births and deaths, and the apparent causes of morbidity and mortality. He then planned the first line of defense--vaccination programs, protected water supplies and sanitation--and at the heart of the defenses, a cadre of people from the villages trained to administer medicines and give classes on health, to treat minor ailments and recognize the symptoms of grave ones like TB, malaria, typhoid. Then he planned a project for women’s gynecological services, health education, and family planning to reduce local maternal mortality, which led to so many subsequent health and economic disasters in families. The second line of defense was the hospital.
As he undertook the treatment of TB and noted his initially poor results, he designed a study. During the study, each group of TB patients got free treatment, but one group got other services as well, including regular visits from community health workers and small monthly cash stipends for food and child care and transportation to Cange. Of the patients who received only free medicine, a mere 48% were cured. By contrast, everyone in the group that received the cash stipends ($5 per month) and other services made a full recovery. Whether a patient believed that TB came from germs or voodoo made no difference. This study became for him a command to worry more about his patients’ material circumstances than about their beliefs. No patient has died of TB at Zanmi Lasante in 12 years.
    As a footnote, Kidder notes that one of the major causes of the poverty in Cange and Zanmi Lasante was the Peligre Dam in the Lac de Peligre. This project was planned by the US Army Corps of Engineers and built by corporations in the mid-1950s during the reign of one of Haiti’s American-supported dictators with money from the US Export-Import Bank. It was advertised as “a development project.” Under the rubric of improved irrigation and power generation land was taken from peasants (now under water) without compensation while agribusinesses downstream, mostly American-owned back then, benefited. The wealthy in Port-au-Prince received electricity. The peasants received neither irrigation nor electricity.
When asked, “How can you expect others to replicate what you’re doing here?”, he responds, “Fuck you.” Then adds, “The objective is to inculcate in the doctors and nurses the spirit to dedicate themselves to the patients, and especially to having an outcome-oriented view of TB...In other words, ‘Fuck you.’...Do you know what ‘appropriate technology’ means? It means good things for rich people and shit for the poor.”
Farmer got a break o make his vision come into being. He found a like-minded, retired Bostonian, who had run a construction company and done well, and who now wanted to see his money used for work like this.
AIDS came to Cange about two years after Farmer arrived in 1985. One of the things that Farmer is incensed about was the action of the CDC in formally classifying Haitian origin as a risk factor for AIDS. When Farmer did his own research, which he later published, he found that, in fact, AIDS came to Haiti from the US via tourists who mingled with prostitutes in Port Au Prince.

    At the end of the 20th century TB was still killing about 2 million people a yea--more adults than any other infectious disease except for AIDS; TB shared a ‘noxious synergy’ with AIDS. In poor countries, TB was the most common proximate cause of death among people who died with AIDS. About 2 billion people on earth, one-third of all humanity, have TB bacilli in their bodies. It turns into clinical illness in about 10% of those infected. Each year about 2 million people die from TB. The new standard of treatment for TB in the developing world was with standard first-line drugs in a program of directly observed treatment (DOTS). The new problem in TB control and in Haiti was multi-drug resistant TB (MDR). About 750,000 people around the world now have this disease.
    Unfortunately, the official WHO DOTS manual contained the following statement: “In settings of resource constraint, it is necessary for rational resource allocation to prioritize TB treatment categories according to the cost-effectiveness of treatment of each category...In developing countries, people with multi-drug-resistant tuberculosis usually die, because effective treatment is often impossible in poor countries.” This was unacceptable to Farmer. He noted with some annoyance that when there was an outbreak of multi-drug resistant TB in New York City in the late 1980s, centered in prisons, homeless shelters, and public hospitals, no one took this attitude. About a billion dollars were spent and effectively ended the outbreak. In 1993, at the best US center for this disease, National Jewish in Denver, only about 60% of cases could be cured and at a cost of up to $250,000 per case. There seemed no solution to the cost problem. Farmer recruited some allies and went on the international lecture circuit giving speeches citing and rebutting WHO policy. WHO stated that “MDR-TB is too expensive to treat in poor countries; it detracts attention and resources from treating drug-susceptible disease.” To which he responded, “But is treating MDR-TB really too expensive? Even if TB control is to be governed by considerations of cost-effectiveness, it s should be easy to show that failure to diagnose and treat MDR-TB is what is really costly. 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 think DOTS alone will stop outbreaks of MDR. This is nonsense. What will happen if programs treat drug-susceptible TB successfully and let MDR flourish? Transmission of MDR will continue, and even where MDR cases are now a tiny percentage of all TB cases, their relative importance will grow. Moreover, DOTS will amplify already existing drug resistance. In short, failure looms for programs now deemed success stories.” His audience often responded to his talk as “provocative,” to which he responds: “What’s provocative. I just said we should treat sick people, if we have the technology...I remember signing an 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. 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...Strictly speaking, all resources everywhere are limited, but they’re less limited now than ever before in human history. Making a distinction between prevention and treatment is artificial--merely an excuse for inaction.”
As Margaret Mead has stated, “Never underestimate the ability of a small group of committed individuals to change the world. Indeed, they are the only ones who ever have.” Farmer and friends found a way out of the cost dilemma. They analyzed the structural pieces of the problem. The price of a drug has little to do with either its usefulness or the costs of manufacturing it. Often, the price is high simply because only one company makes it. In the case of second-line drugs used in the treatment of MDR-TB, huge amounts of drugs are required because treatment lasts so long. Most candidates for treatment, however, have no money. Thus there is no incentive for drug companies to manufacture quantities of the drugs at “reasonable” prices. Capreomycin is one of these second-line drugs; it is manufactured exclusively by Eli Lilly. Eli Lilly was selling it for $21 a vial in Peru; the same vial in Boston, where Farmer got his supply, cost $29.90. Farmer found out that the drug cost only $8.80 in Paris, and he tried to buy some there. He was told he couldn’t. “There’s a global shortage of capreo due to an emergency in Peru.” Then Farmer encountered someone named Guido Bakker, a Dutchman in his twenties, who worked for a nonprofit company, the International Dispensary Association, IDA. It specialized in driving down the prices of essential drugs, the kinds of drugs that poor countries need most urgently. IDA tended to deal only with generic drug manufacturers. IDA got the MDR-TB drug scarcity problem some relief by teaming with Doctors Without Borders to sponsor generic production. The solution to the problem got a further boost when, after intense political lobbying, they got the WHO to add second-line TB drugs to its list of ‘essential medicines’. This acted as a major inducement to generic manufacturers to get involved. Oddly, various eminent TB experts wrote to the WHO saying that they ‘couldn’t countenance’ the elevation of second-line antibiotics to the essential drugs list. Increased generic supply gradually reduced the cost of these drugs. By the year 2000, projects working with MDR TB paid 95% less for four of the second-line drugs than they would have in 1996, and 84% less for two others. The drugs to treat a 4-drug resistant case of MDR now cost Partners in Health/ Zanmi Lasante about $1500 instead of $15,000.

    Then there is the Cuban example. Cuba has life expectancies about the same as in the US. It has achieved control over diseases still raging in Haiti only 90 miles away. By American standards Cuban doctors lack equipment, and even by Cuban standards they are poorly paid. They are, however, well-trained, and Cuba has more of them per capita than any other country in the world--more than twice as many as the US. Everyone has access to service and even to procedures like open heart surgery. According to a study by WHO, Cuba has the world’s most equitably distributed medicine. Cuba was now in the position of exporting doctors to other needy countries. Cuba also has the lowest per capita incidence of HIV in the Western Hemisphere, and it has the most accurate HIV statistics in the world. (Testing is mandatory.) On an island of 11 million, only 2,669 tested positive as of 2000; the virus progressed to AIDS in 1,003 of these, and 653 died. Only 5 children caught HIV from their mothers, and all of those children were still alive. Because Cuba had acted quickly to clean up its blood supply, only 10 people had contracted HIV from transfusions. Yet Cuba is not a particularly rich country.
    The book concludes with a dramatic story of a boy named John. John’s official age was unrecorded, but he appeared to be about eleven or twelve. He had swellings in his neck, but they were harder than the usually fluctuant swellings of scrofula. Dr. Farmer was concerned about cancer. A PIH physician found an oncologist in Mass General who was willing to make the diagnosis for free, if they could get the tissue there. This required a biopsy that Farmer did not feel comfortable doing. A competent Haitian surgeon was willing to do the biopsy for a thousand dollars. Time for the specimen to travel to MGH resulted in a diagnosis of cancer four days later. It was nasopharyngeal carcinoma, which, if caught early, could be cured in 60-70%. It was decided that it was only practical to stage the disease and administer chemotherapy in Boston. It took a month to negotiate with MGH to do the treatment for free. John was much worse by this time. Now his legs and arms were emaciated; you could see all the bones. He had been given a tracheotomy, required regular suctioning, and was in constant pain from the masses in his neck. It was very difficult to look right at him. In fact, he was too sick to be transported by commercial airline. It was determined that a private flight would cost about $20,000. The question was, Could/should PIH/ Zanmi Lasante use their resources in this way for this patient? When this decision had to be made Farmer was on an international trip and could only be reached by e-mail. Two of his young PIH doctors had to decide what to do and whether to act without his direct involvement. The first e-mail that was sent was:
    “John’s condition is growing more tenuous. He is curious, sweet as can be, interactive with us and they would not have let him on the plane. And yet weak, weak, weak, and I fear would not survive the trip to the airport and they would not have let him on the plane. Polo [Farmer], I know this sounds crazy but he still has his fighting chance. This could still be a localized tumor with abscess tipping him over and increased mass size. I will take responsibility to pay for this flight. We are proceeding with plan while we wait to hear from you.”
    The initial response was, “Serena, honey, please consider other possibilities.”
    This was interpreted as a ‘no.’ Usually Dr. Farmer would say something like, “I trust you. Go ahead.”
Other staffers were injecting comments like, “What are we going to do if another kid like this comes to us?”
    “I'm looking at only one child, The fact that he has free care at the other end makes it excruciating,” Serena said.
    A staffer got on the computer and wrote Dr. Farmer, “You have to say yes or no.”
    The reply came, “Well, it could be worse. I’ll be there within twenty-four hours, but would not try to second-guess all of you there. Getting him on a plane is the only way to save his life, so I’m for it. In any case, his hope is in leaving Haiti, by one way or another, like many other Haitians, alas.”
John made it to MGH, but only to have the initial scans show invasion of bone and metastases through out his body. He is made comfortable, spends some hospice time with his mother in the home of a PIH staffer in Boston, and died in a few weeks.
    In reaction to observing all this, Mr. Kidder feels a need to ask Farmer, only after a decent interval, what were his thoughts on this whole case. Finally, on another 11 hour hike for a house-call, he does. “What about the case of John? What about the twenty thousand dollars that PIH spent on the medevac flight to get him out of Haiti? Not long after John died, a PIH staffer, a relatively new one, said to me that she couldn’t help thinking of all the things they could have done with that twenty thousand dollars. What is your response to that?”
Dr. Farmer responds:
    “Let me say a couple of things about this particular case, if you like. One is, remember of course that John was referred to Boston as dying of a treatable tumor, a very rare tumor. He wasn’t referred to Mass General before we knew what he had. So when he was referred, it was for free care because ha had such a rare thing and it was treatable, and the predicted cure rate was sixty to seventy percent. All right. Good enough. That was what the decision was made on. And there as no way for us to find out that John didn’t have locally invasive disease without metastases, because it required a diagnostic test that we can=t do here. So the other thing is, the bottom line is, why do we intervene as aggressively as we can with that kid and not with another? Because his mother brought him to us and that’s where he was, in out clinic...

    “I have to tell you, though, I’m a little troubled by these comments from the new PIH-er. Because I have to work with these people. The last thing I want to do is expend my energy trying to convince my own co-workers. Now I have to, of course. But I don=t like it.”
Kidder tries to apologize for the staffer, “Your PIH-er wasn’t saying you shouldn’t have brought John to Boston. Only that it was a shame you had to spend so much, given what else you could do with twenty grand.”
    “Yeah, but there are so many ways of saying that,” Farmer replies. “For example, why didn’t the airplane company that makes money, the mercenaries, why didn’t they pay for his flight? That’s a way of saying it. Or how about this way? How about if I say, I have fought for my whole life a long defeat. How about that? How about if I said, That’s all it adds up to is defeat? A long defeat.
“I have fought the long defeat and brought other people on to fight the long defeat, and I’m not going to stop because we keep losing. Now I actually think sometimes we may win. I don’t dislike victory.
    “You know, people form our background--like you, like most PIH-ers, like me. We’re used to being on a victory team, and actually what we’re really trying to do in PIH is to make common cause with the losers. Those are two very different things. We want to be on the winning team, but at the risk of turning our backs on the losers, no, it’s not worth it. So you fight the long defeat.
    “And most of the time when people ask about triage, most of the time they’re asking not with open hostility but deep distrust of our answer. They already have the answer. And that of course is the energy-draining process, because you understand that a substantial proportion of the questions are asked in a, you know, in a very, what’s the word?”
    “With an animus?” Kidder suggests.
    “Yeah.” Farmer is silent for a moment.
    “The salary of a first-world doctor. How about that? Talk about all the money that could have been spent on other things, what about a doctor’s salary?
    “Well, of course. See, the truly humble think of that before they say the other. I’m not truly humble. I’m trying to be humble. So let me ask you another question. What is it that makes people not think that? Why doesn’t a young American doctor say, ‘Gee, my salary is five times what John’s airplane ride cost. And I’m twenty-nine or thirty-some years old.’ If you say that stuff out loud, you sound like an asshole. Whereas if you say the other stuff, you just sound thoughtful. Now what’s wrong with that? What’s wrong with this picture? If you say, ‘Well, I just think how much could have been done with twenty thousand dollars, you sound thoughtful, sensible, you know, reasonable, rational, someone you really want on your side. However, if you were to point out, But a young attending physician makes one hundred thousand dollars, not twenty, and that’s five times what it cost to try to save a boy’s life.’ “That just makes you sound like an asshole. Same world, same numbers, same figures, same currency. It’s just, you know, I never have been able to figure it out. I mean, I’ve figured it out, but I realize now it takes so much time to get to that point, to explain it, without offending someone. I have to limit the amount of time I put into explaining all that or it just sucks your soul dry. “
    This conversation then leads to the last rumination of the book as they complete the seven hour house-call trek. Kidder ponders that some would say that this is what is wrong with the Farmer approach. “Here’s an influential anthropologist, medical diplomat, public health administration, 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. All the serious, sympathetic critiques of Farmer’s work comes 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.” To this he imagines Farmer’s response as something like this: “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.”
    Farmer’s creed has been expressed as, “Patients come first, prisoners second, and students third; that doesn’t leave out much of humanity. He doctors first of all because he believes it is the right thing to do. If you do the right thing well, you avoid futility. Doctoring is the ultimate source of his power. Every sick person is a potential patient, and every healthy person is a potential student. He is fighting poverty all the time, in a long defeat. For him the reward is inward clarity, and the price perpetual anger or, at best, discomfort with the world. Paul Farmer was not put on earth to make anyone feel comfortable, except for those lucky enough to be his patients. He does not want his hospital to be some laboratory for the world. It should be enough just to serve the poor.”
As Kidder leaves Haiti on the long, muddy, unpaved road from Cange to the airport, they get, at one point, stuck behind a slow-moving cart with a sticker on it that in Creole says, “Lord, a word on all this.”
    In an afterword, Kidder notes that Cange / Zanmi Lasante saw its first open-heart surgeries, performed by teams from the Brigham and South Carolina. He feels tempted then to ask Farmer if this was ‘appropriate technology’? He wants, not to hear the answer, but just to hear Farmer say it.

 COMMENT:  This is an absorbing story of a fiercely independent man who elevated common sense to the genius level and has changed the world. 

1 comment:

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