Paul Farmer
Professor of Medical Anthropology, Harvard Medical School
“Reinvigorating the Struggle: A Clinical and Social Justice Perspective on International Health.”
March 17, 2003

This is what Haitians call indecent poverty, which would suggest, of course, that they have a clear notion, or at least a notion, of what descent poverty might look like. The floor on your house is not dirt, its cement. In descent poverty the roof of your house is not thatch, it’s tin. And I have to say when I went to Haiti 20 years ago, I didn’t know there was a distinction, but immediately when you’re there it makes obvious sense. And so I practice medicine mostly between these two very distinct, it’s like the Hayes Adam Hotel and the Cheap Ride. It’s the Brigham women’s Hospital, which is one of the giant teaching hospitals here, and the hospital that we’ve built at the middle of a squatter settlement in rural Haiti. And many people have actually derided us for trying to build a medical center in the middle of a squatter settlement saying that it seems like a very unwise use of resources.

But interestingly, those critiques have not come from the Haitians, but from people like you or me. So we decided early on that we would actually listen to the people living there in indecent poverty, and ask them what they really want. And have been following of course also evidence based medicine and what we knew to be a set of clear priorities in public health, but also listening to what people what. This is the starting point in indecent poverty.

These images I’m going to show you are more targeted towards the non-medical people here, but the impact of our administration using modern medicine in a very poor part of the poorest country in the Western hemisphere can be very dramatic indeed. This is a child with extra pulmonary tuberculosis, and for the infectious diseases people here, this is a person with tuberculosis peritonitis and which really went undiagnosed for some time. And this is the same patient with four months of a series of drugs that cost about 50-60 cents a day. I am convinced that very much generic problems of what it means to be a human today, in a world that is driven by social inequalities. And that’s what’s obsessed me over the last 20 years going as an American to Haiti in 1983.

The two examples I’m going to use, one is arcane and the other is well known, the arcane one just very briefly, and I presented this in a more drawn out fashions to my medical colleagues already, this is also a woman also with tuberculosis, but she on the other hand could not be treated with 50 cents a day. This is a woman with a kind of tuberculosis that’s resistant to conventional therapy of the disease, which is now very inexpensive. So to treat her costs a lot of money and so she, this was actually in a hospital room not in Haiti, but in a slum in Lima, Peru. And as an aside, her son who had been caring for her, her young adult son, later fell ill with the same disease because its an airborne disease. She had what’s called in our circle multi-drug resistant tuberculosis, but had been declared untreatable because the medications were too expensive and because its complex to deliver medications with toxities and side effects, etc. And just to give you an idea about how straight forward this message was, and this is from the World Health Organization speaking about the disease that is obviously killing this women, the comment made here is: “MDR-TB is to expensive to treat in poor countries,” and then there’s a semi-colon in this sentence, a complex sentence, and it even says something else, and “ treating it detracts attention away from the real task at hand.” Again, this is going to strike the non-medical people as jargon, but the point is perfectly generic. It’s not about infectious disease only, certainly managing the patients and treating them correctly is a job for a specialist, whether infectious disease or pulmonary specialist, but this is a general problem. You see here two claims, 1) that is too expensive, and the other, that it is not a good idea because it will distract our attention from what we should really be doing. Now interestingly, this is what I call a conversation stopper, and you can tell in reading, the intentions of those who wrote and disseminated this wildly, they’re not saying “okay lets stop and figure out how to bring down the prices of the drug,” nor are they saying “lets find a way so that we can do this without distracting attention from the more straight forward job.” This is a comment that’s designed to stop a conversation. Again, my argument here today is that, in a general audience, is that this is a general problem in the world today.

Now, very rapidly so we can go on to the other more well known example. This is a group of young people from the same slum who we, as you can see, I was younger then, I had more hair, who in 1996 we trained these young people to try and help us care for these patients with the drugs that they needed. If the infecting strain, that is the kind of TB that was infecting them, was resistant to some drugs, that didn't mean that it was resistant to all drugs, and it of course wasn't. Finding the right drug, and doing the right thing for these patients, which is to treat them correctly, the patients who had been told that they were untreatable, actually it turned out that they weren't untreatable. We started doing this August 1996 and this is inside a slum dwelling in Lima. We began treating a small number of patients, which has now become a huge number of patients, with results that surprise everybody. These results were published in the New England Journal of Medicine. The uncureable patients had an 83% cure rate. That led us to say "well, what is really behind this problem," and the point that was behind the problem is, of course, again, social inequality is the basics, and then a long list of problems which I will give you a more vivid example; one which is already known, and that is HIV.

We moved this (picture of someone coughing) forward ore rapidly because it is an air born disease. You get TB when someone sneezes or coughs. Having double standards of care, whether you live in a Peruvian slum or in Charlottesville, it doesn't end up working out that way. For example, it's true that the Bronx has a very different per capita income than Manhattan, however, why didn't it work when the same disease became epidemic in New York. To say, "well, we treat it in Manhattan because its cost effective there, but unfortunately it's not cost effective to treat it in the Bronx." Now that would seem absurd, but that is of course, the claim that is being made and unfortunately these pathogens do not respect national borders. If you look, as we did, in the public literature we readily found cases that originated in Peru but were diagnosed in affluent settings in North America and Europe. This was just looking at the published literature, this was not calling friends on the phone and saying "hey, have you had any multi-drug resistant cases of TB from Peru," because I've done that too and found that the whole thing, would be red, the map, would be completely red.

So what about a non-air borne disease? Before I close, this is of course in Russia, as you may know. This story is told in this new book, how our group got dragged into not a poor unindustrialized country but an industrialized country that was going through very dramatic political and economic changes, and had, as you might imagine, an epidemic of TB. You might not know that it was drug resistant TB. Again, how long was it before there would be patients, who unlike the people stuck in these slums in Latin America, who got on a plane in Europe and ended up staying in the United States with active pulmonary multi-drug resistant TB? And the answer was, already, it had already happened. We had found a case of a person from the former Soviet Union who boarded a plane, I think it was Belgium, and ended up in a state called Pennsylvania, who was sick with a strain resistant to 8 drugs. And of course, this is going to happen again and again. 85% of all Vermont's TB cases are among the foreign born, but this was a case of active TB on a plane, which of course has very different implications that we can talk about if people are interested.

The general point, though, is that social inequalities are not only driving forward the epidemics, I would argue, and one could make complex arguments about this, which is what some of my research is about: how does that work. Because it sounds easy to say that social inequalities drive forward epidemics but it's actually quite complex, and as you might imagine, there is a very different set of mechanisms when you are looking at an airborne pathogen, versus a sexually transmitted pathogen, versus a an insect born pathogen. But social inequalities get their way into the body in a host of ways that are important.

Now let me move forward to the second example. Now I wont spent time talking about epidimiology or numbers. HIV, as people in this room already know, has become the leading infectious cause of adult death in the world today, and has surpassed all other pathogens it seems, including the plague in the 14th century according to body count. This is the big plague of our time, HIV, 14 million children in Africa orphaned by the disease. You can imagine the kind of social disruption that's going to cause. The impact on life expectancy is what you might expect: dramatic decline in life expectancy and complete reversal of the gains of modern public health and medicine in the space of as single generation, in fact, in a single decade. These are not projections, they were made as projections some time ago, but these are from an article published a few months ago in the British Medical Journal. These are no longer projections, but they are just as bad or worse as predicted.

So what is to be done? There are a lot of things that can be done. I'll just mention that I'm an infectious disease doctor, so there are a fairly clear set of instructions in a way for me. And I'll show you a very similar (graph), look at the shape of these curves, and this is a very similar shape curve, but is the opposite curve. This is not a decline in life expectancy, this might as well a decline in death expectancy. So something important happened in this country in the mid 90's, and that was, of course, the development of effective therapies. Not ideal, not therapies that eradicate the organisms, but therapies that turn HIV from a death sentence to a chronic and manageable disease. So those two curves remind us of what underpins different differential chances of survival in the world today, and those are largely social inequalities.

And what can be done? Well let me just, again, I'm seeking here today to focus on the general, and argue that this should be of interest to anyone whether one is a law student, or medical student, or professor of medicine, or philosophy professor, or an undergraduate, or community health worker, whatever. The only point I'll make about these is that they were both published again very recently last summer, and they make some very curiously specific claims. These are the abstracts of two papers published in another intellectual journal, the Lancet, especially in international medicine. It says, well, it's 28 more times more cost effective to prevent than to treat. Now, nobody is going to be prefer to treat a debilitating illness than to prevent it. Having spent a lot of my adult life as a physician working in HIV prevention, especially with young people, I can assure you that there's nothing fun, even with the tools, with managing a chronic infectious disease. If there are diabetics in the room who have to take insulin every day, they know what I'm talking about. this is difficult, of course mostly difficult for patients, but difficult for physicians as well.
Now remember this claim here, and again you see, now that I've shown you this other slide about multi-drug resistant TB, I'm going to ask you to think about these statements and ask if they're meant to start a conversation or to stop one. When I read them, I had the distinct impression that it was really about ending a conversation, or delaying a conversation, and ended up asking, I was in Haiti, when these were published and I asked a research assistant in Harvard, to look how they found the data, how they determined that curiously specific number. I found that one, they had two sources of data, one was a mathematical modeling project done with a computer, not from actually having tried and costed this out, and the other was projected expenses for a project that was being planned for a country in Western Africa.

Now, last summer, of course, we've been doing this for some years, so we had real data, we had our own experience. Even without knowing what the source of the data was, you'd have to argue that it's not wise to make such confident claims. There are reasons to be humble about it. First of all, the cost of the drugs and other inputs are changing rapidly. And let me speed this up and show you what's happened. First of all, this is a protease inhibitor, and this was a study done by the Pan-American Health Organization in 2001. Notice the highest price for this particular drug is in the poorest country. Now again, I would argue that that is not a very scientific or sensible way to approach a problem like this. The most HIV infected country, which, again, not accidentally, is the poorest one, is the country in which the drug costs the most in the open market. So, already before looking at what could happen, you see what's happening and it just doesn't make sense.

And here is our own experience. Average wholesale prices on the market here ranging about $10,000 per patient per year, the regiments that are being discussed are named here but I'm not going to cover them because I'm sure not all of you here are interested. Again, the general point is that the average wholesale price is about $10,000 dollars. We, by last year, PIHSUS Partners in Health had reduced the price through a variety of mechanisms, which we can discuss if people are interested, to under $700 dollars for these same two very effective regiments. And this year, from the International Dispensary Association, we just got our first shipments of drugs costing under $1 dollar a day. So again, to make a claim with this very sharp specificity, 28 times more expensive to do one thing over the other, is not a very wise thing to do.

Now, even if it is wise or not, you can imagine that patients might feel strongly about these matters. That's one thing that doctors and anthropologists get to do, is they get to talk to patients and I'm going to let you hear what some of these patients have to say about this by quoting them. But how could we respond? Well first of all, it's hard to do research across these steep international gradients when we're using first world diagnostics or research endeavors, but the very much third world therapeutic endeavors. And this is of course a big debate in medical literature now, about 10 years after it became a big debate in the afflicted communities themselves. That's a common I can make wearing more my anthropology hat, because I actually did a lot of my Ph.D. thesis talking to Haitians about what they thought about this, and got a whole book full of commentary in the late 1980's. Now its in our literature, but it was in their public discussion long before it was in our scientific literature.

The point is, and this is not a criticism of research and policy makers, I'm involved in both of these communities: both the research community and the policy making community. We're asking a different set of questions. We're asking if these services are sustainable, are they appropriate technology, are they ranking priority, which are important questions to ask, and they're going to be questions we have to keep asking. However, we mustn't expect the patients and their families to be asking these questions. They aren't asking questions like that at all, and I'm sure it's obvious that they're asking a very different set of questions and asking for a very different set of responses. So, we ended up trying to treat this disease in the middle of one of the poorest parts of Haiti and we ended up calling our effort the HIV Equity Initiative, and this is going back to 1998, by the way, which is a significant point because by accident, we ended up becoming one of the oldest so called demonstration projects in the resource absent, as one of my colleagues here said, resource absent world. That was not our goal, our goal was, as you can imagine, to remmiediate inequality to access to care, save lives and prevent death. Prevent children from becoming orphans. But the very short story is that it relies not only on the doctors and nurses, who are also absent from rural Haiti, but rather on community health workers. So here's a community health worker who is visiting a patient every day, to give the life saving triple therapy.
And just a couple words about what happened when we made the decision in 1998 which was a very painful one because we didn't have the resources, and why didn't we have the resources? Because, we couldn’t' find backers. And why would they not back us? Because, the argument was that this was not appropriate technology or sustainable in a community as poor as this one. So we ended up relying on, you would be amazed on the sources of the medications. First of all, people had been supporting us on the other project that I mentioned, the multi-drug resistant TB project, so private donors, people who I respectfully call church ladies. Interestingly enough, patients in the US who collected for us, HIV patients, who collected for us un-expired medications when their regiments changed. That of course is no way to run a project, we did not want to run our project like that. We needed to have security so that we would know there would be no drug stock-outs. But in 1999 we were able to change the fates of many.

The people who got the regiments who lived in the __, call them group A, and the reason this was not intended as a research project, is just that in Group A we put the sickest patients we were sure needed these medications right away. This is not what might be called in certain fields cherry picking, we didn't choose patients that we thought would do well, on the contrary, we chose patients that were sickest and put them on therapy. Group B were from the same communities here we had community health workers and could in principle deliver the regiments in the manner that we chose, which was through community health workers with daily home visits, just like we treat TB. And Group C, These are patients all of whom received free care whenever they showed up in our clinic, our HIV clinic, but they didn't live near us so we couldn’t' be sure when they would show up. And to put it mildly, the different in outcomes by 2002 was nothing short of startling. First of all, none of the first 100, and we call this dot hard directly observed therapy with highly active anti-retroviral, and none of the patients died, or have died of the first 100. And now, this is some many years later, whereas 11% of those who received aggressive community based care with everything but anti-retroviral, they still did much better then you would expect, but they did not do anywhere near as well as those who received the anti-retroviral. And this red one keeps on going up as I find more data (bar graph), because we counted as everyone that we couldn’t' find of the first 100 patients as alive until we could show that they were not alive when we found them. Since I made this slide for the retrovirus meetings in February in Boston, I can tell you now in March that number is now 28% and not 24%, and this is again, not surprising but it is one of the first time that it has been documented in a country as poor as Haiti, maybe the first time.

Now, again, back to generics. No pun intended for those of you who follow the debate about drugs. What about the argument that stigma around HIV will prevent us from using these regiments in places like Haiti or Southern Africa, as we may say in scholarly terms, poppycock. Not only is there no evidence to support that often heard claim, we have patients telling us just the opposite, and look why. This is a man (picture of emaciated Haitian) who the day he started anti-retroviral therapy, and the same fellow about a year and a half later (picture of same man, healthy looking) and this is a translation of his comments made in an interview when we were talking about how these drugs had affected his life. And we have lots of these stories, they are just stories. This is a woman dying in the summer of 1999 in her home, and the same woman 2 years later who is now an HIV outreach worker with our clinic. And she says the medicines are eloquent enough. And they are eloquent, and their impact in settings like Haiti if they are used correctly is of course very dramatic.

Another example is a woman who came in weighing 73lbs with decimated TB and HIV, and the same woman 8 months later giving a speech about the importance of access to care. The speech of the patients, which is actually called the Declaration of Courage is available in the PIH web site, its been translated from Haitian into French, English and Spanish.

In any case, I want these to serve as points of discussions about these inequalities so I'm going to go back to the generalities. This is what's happening in Haiti. You know, we hear a lot about corruption and violence in Haiti, but this is the real violence, is the violence of a shrinking economy. What is called in both of these books structural violence. People who wake up in the morning, and as one woman said to me, it's the same fight every day for food, wood and water. This is a struggle very different from the one that we face. Certainly, a guy like me is filling a gap. This is too small to see, but the country, it's interesting that in Latin America the country with the most doctors per population and the country with the least are the two neighboring islands of Cuba and Haiti.

I like my work, I'm filling in a gap, I'm glad to be an infectious disease doctor in a place that has a lot of infectious diseases, but the bigger problems are not going to be fixed by people like me who are filling in a gap. It's not the basic problem. The basic problem is this one (graph), and I'm never sure that this image is very decipherable, but it’s a way of looking at what's happening in the world. This is a doctors eye view, but I think its probably true for many other, even law or other disciplines, I think it's probably true even generically. We're discovering great new things, particularly in temples of learning like this one, you're making scientific discovery, we're making advances, but we don't have a good plan to make sure that these discoveries are used equitably, to say nothing of having a plan to make sure that they are used where they are needed most. So we have what you might call a growing outcome gap in the world today. I believe that human progress will go forward, and much of it will come from places like this one, but we need, very much I believe, a strategy to move resources where they need to go. To do that you need much broader based alliances, you need people, as they say, of all walks of life to do that.