Why have you dedicated your life to fighting for good healthcare for the world’s poor?
To be honest, I’m not quite sure what all the reasons are. I got interested as an undergraduate in North Carolina when I met a Belgian nun who was helping migrant workers. Meeting them was a kind of epiphany. I would ask: if the working conditions here are so bad, why would you come to America? Their answer was: have you been to Haiti? And of course, I had not.
So you went to Haiti: what was it like?
It was the early 1980s, I was 22 years old and I couldn’t wait to talk to ordinary Haitians. I was disappointed that there were no hospitals to train Haitians to provide their own people with proper healthcare. Eventually, I found a small charity called Eye Care Haiti that ran mobile outreach clinics. In the central plateau region of Haiti, there was no medical care to speak of, no clean water, no arable land, and nothing in the way of primary education.
What was the worst thing you saw?
A young pregnant lady came to us with severe malaria. She slipped into a coma and needed a blood transfusion. But there was no blood in the hospital and we couldn’t raise enough money to take her to a hospital in the capital and to buy the blood she needed. Eventually, she and her unborn baby died because there was no blood and no money to buy blood.
So you decided something had to be done?
When I was still at medical school at Harvard, a group of us got together, including Ophelia Dahl from Eye Care Haiti, and our Haitian co-workers. We thought it was obscene that Haitian people should live in such deprivation so we created Partners in Health (PIH) in Boston and a corresponding organisation called Zanmi Lasante in Haiti. Businessman Tom White kicked it off with $1 million.
How is this charity different?
We see healthcare as a fundamental human right, which should be available free. Our care is delivered not only at a clinic or hospital but in villages where patients live. Each patient chooses an accompagnateur, usually a neighbour, who is sometimes also a patient. PIH trains the accompagnateur, who accepts the responsibility for supervising daily care such as administering drugs and giving support. We think this is one of the most effective ways of removing structural barriers to good care for AIDS and other chronic conditions and diseases. PIH is also committed to working with our co-workers as equals. This is solidarity not just in name but in deeds. We asked ourselves: should we work with poor people and ask them to invest their time and effort free while we pay expensive western consultants? We decided, no, we shouldn’t.
How big a problem was AIDS in Haiti at that time?
By the mid-1990s, AIDS was a huge problem. We decided to test everybody for HIV: to our astonishment and great sadness, up to 40 percent of the people who came to us with other problems were HIV positive. This was at a time when I was shuttling between Harvard and Haiti, training in infectious diseases. It was bizarre because I was getting off the plane in Boston and begging my patients to take their antiretroviral drugs, and at the other end of the journey I was being begged by patients to get them the drugs. That was very tough.
Has your charity expanded?
PIH works in Peru, Russia, Rwanda, Mexico, Lesotho, Malawi, Guatemala – and Boston where we imported the Haiti model.
I got into a little bit of trouble with some colleagues for saying that patient outcomes are better in Haiti than in the US. For chronic conditions such as AIDS or diabetes, you take a drug every day. In the US, you treat a patient with a chronic disease and send them home, but often they lack appropriate support so they get sick again. Our system doesn’t deal with these social problems as well as in Haiti.
Tell me about your fight for tuberculosis care.
I was invited to talk at a big US conference, where there were influential people, many of whom believed in not treating multi-drug- resistant tuberculosis (MDR-TB). They thought it too expensive and difficult in such a setting, and that treating it was probably unnecessary because it wasn’t as contagious or virulent as regular TB and would likely die out in the face of a good, then WHO-standard “DOTS” programme. But I thought, even if TB control is to be governed by cost-effectiveness, it should be easy to show that failure to diagnose and treat MDR-TB is what is really costly. And we were able to show through epidemiological results that DOTS would fail where there was substantial drug resistance.
An underlying difficulty that you seemingly have to deal with is the pervasive idea that some lives are more valuable than others.
I struggle with this every day. After the Chinese earthquake, even my friends said things like: “Well, you know they don’t value life in the same way as we do in the west.” Or that “Africans have 10 children because they know half will die”. I am still learning how to respond to such statements. Without the human rights model, we will go on believing it’s OK to say some lives are worth more.
Do organisations like the Gates Foundation fund cures for specific diseases because it is sexier and easier than funding infrastructure? Will they fail?
No, they are doing this because they know we need them, and preventives such as vaccines. What they’re doing is great. Many of them, which are very new, are discovering that any new treatments will need effective delivery systems if they are to be used where they’re needed most. These investments, whether in prevention or cure (or, best, both), are long overdue. They are not doomed to fail, but rather to reveal just how significant our lack of investment has been over the past decades.
Has your health been affected by your work?
I get the odd bout of malaria and once I contracted TB. I also came down with amoebic dysentery in Haiti. I ended up in a shabby hospital in Port-au-Prince with no toilets or beds so I had to lie on the floor. I also contracted hepatitis A. This was severe. My friends at PIH thought I would need a liver transplant, but I didn’t.
Coming full circle, how do you think the seeds of your work were sewn?
My dad bought a bus at a public auction originally for family vacations that was formerly used as a mobile TB clinic. It was great, but my mother hated it – I guess it was harder for her with six kids to raise and a job as a supermarket cashier. But I really never had any complaints about what we called the Bluebird Inn. We lived in Florida, which never gets really cold but it does get terribly hot, so we were outside all the time. But I have nice memories about the Bluebird Inn. My friends, though, thought it was very, very weird.
That sounds like poverty, US-style.
We never really felt poor. As kids we were around migrant farm workers from Mexico and Haiti like the ones I met as a student. Maybe they made the same money that my mother did working at the supermarket, but my parents were educated people. My father was a schoolteacher for a while and mother later went to college and got a degree and she knew her children would also go. We didn’t feel the deprivation because we had lovely parents who encouraged us to read and who read to us Aesop’s Fables, Shakespeare plays and Alan Paton’s Cry, The Beloved Country.