Persistent Plagues, Persistent paradigms & the Responsibility of Physicians in the HIV Epidemic:
Persistent Plagues, Persistent paradigms & the Responsibility of Physicians in the HIV Epidemic:
Humanity is facing a health crisis of unprecedented proportions. Infectious diseases are devastating poor populations around the world, flourishing where health has already been weakened by poverty and inequality. We're all used to the statistics by now: 40 million infected with HIV worldwide, 30 million infected with HIV in Sub-Saharan Africa, 2 million deaths from Tuberculosis (TB) annually, 2000 deaths from malaria daily. Yet effective treatments exist for each of these diseases; in rich countries, and amongst the rich in poor countries, antiretroviral drugs have transformed HIV into a chronic, manageable illness. When treatment is available, both tuberculosis and the much more deadly multi-drug resistant tuberculosis (MDR-TB) are curable. Despite the enormity of the crisis, and the availability of effective treatments and interventions, the rich world simply hasn't mobilized the resources needed to end this catastrophe. For HIV, the persistent paradigm in public health (for years obsessed with the cost-effectiveness of an intervention over its effectiveness) has been treatment for the rich, prevention for the rest of the world- the statistics above provide some insight into the successes of this approach. While the U.N. has estimated that only $10 billion will be needed annually to address the HIV, TB and malaria epidemics in poor nations (the three diseases account for 6 million deaths each year), to date wealthy states have managed to donate a paltry $2 billion. The U.S., whose contribution should be $2 billion annually, has thus far donated $200 million.
The poor around the world are not dying a silent death (numerous grassroots organizations fighting for access to expensive antiretroviral drugs to fight HIV exist throughout Africa), but for the most part their screams have fallen on deaf ears.
Dr. Jim Yong Kim is a physician and medical anthropologist, and co-founder of Partners in Health; a Boston based grassroots organization that works in solidarity with poor communities in Haiti, Peru, Russia and Bostonâ€™s inner city. He is a co-editor and co-author of Dying for Growth: Global Inequality and the Health of the Poor, available from Common Courage Press.
For several years, people involved in international health have been almost obsessed with the notions of affordable treatments and cost-effectiveness. What impact has this had on international health funding?
Well, we've said this in so many different ways, and in so many different places. I like to look at it this way. President Bush asked the US Congress to increase the defense budget for this coming year by $48 billion. This would make the increase in our budget larger than the entire military budget of any other country in the world. And our total military budget of $350 billion is almost as much as what all the rest of the world spends combined, on defense. Let's also look at the $1.3 trillion tax cut that was given mostly to the rich in the US. Now my understanding is that the rationale for this tax cut is the principal that giving money back to the rich will stimulate the economy. Now, that may be true on some level but I have never seen any data that suggests that giving money back to the rich stimulates the economy in a way that is good for everyone. That's the theory, but I have never seen any data. If you look at what cost-effectiveness analysts are asking poor people and their advocates to prove, we're being asked to prove that a dollar or two dollars or three dollars- nothing, small amounts of money- are going to result in dramatic improvements in the health of poor people- or else we're not going to get the money. So the burden of proof once again falls on the poor. The burden of proof hardly ever falls on the rich in matters such as this. The rich don't have to prove that a trillion dollar tax cut will in fact lead to stimulation of the economy and better lives for everyone. The military doesn't have to prove that it needs the 48 billion dollar increase in spending. But the poor have to prove all the time that even a penny given to them is going to have dramatic results, even when their living conditions are so impossible.
We've done some research into the origins of the cost-effectiveness idea. Cost-effectiveness analysis (CEA) was implemented early on by engineers in the military, as a tool to aid in determining, for example, what would be the best way to build a bridge; or where the best place to build a bridge might be. These were exercises designed to choose between several more or less equivalent options. When this concept emerged, some social critics argued that CEA was a dangerous thing, because it lead to the misconception that these important decisions about how to use resources, was in fact a mechanical decision and not a moral and ethical one. I think that's the fundamental issue. CEA is definitely important- we certainly want to know which is the most effective way of treating our MDR-TB patients, we want to know among several different options what's the most effective way of treating HIV patients. But what it's been used for is to justify withholding treatment for the poor. More than one senior public health official has presented to me the following scenario: "Lets look at the situation of a man who is HIV infected, whose wife is HIV infected and who has some HIV infected children. Now, you ask that man whether he would rather have treatment for himself, or prevention to make sure that his children and all the other children in the community are not infected. I think that man would choose prevention, because he would think more about the future." And this was said in a very complimentary way, complimenting the decision making processes of the HIV infected man. I would simply say that no human being should ever have to make that choice. That is an inhuman question, an inhuman set of circumstances. To think that cost-effectiveness absolves us from the moral responsibility of treating that person is just wrong. We have the drugs, the prices have gone down dramatically and the Global Fund has said that it will pay for drugs that are made by the generic manufacturers. All the legal structures are in place so that poor people can have access to generic drugs in any country in the world. The structures for purchasing and beginning to deliver the drugs are there. I think that for us not to provide treatment to the poor, in addition to comprehensive prevention programs, is to shirk our moral responsibility. To say that you can either do prevention or treatment, and CEA will help us choose which one to do, just doesnâ€™t make sense. CEA does NOT help us to choose which one to do â€“ to deny someone treatment is a moral decision. This is a decision based on moral choices. It means that one chooses not to question the military budget, one chooses not to question the trillion dollar tax cut, one chooses not to insist that poor people have access to treatment. Applying CEA to this situation is simply a way of putting a false sense of legitimacy to a fundamentally flawed moral choice.
What impact have ideas like cost-effectiveness and neoliberal economics had on the health of the poor?
Instead of insisting that we (those working in international health) spend more, instead of insisting that we fundamentally change our paradigm in terms of how we deal with the problems of global health; we went on thinking that if we took the small amount of money that was left after debt repayment and divided it up more effectively, that that would somehow absolve us from guilt in standing by and watching as we failed in providing adequate health care for poor people.
The example I always bring up is the situation in the Democratic Republic of the Congo, formerly Zaire. Zaire was run by one of the worst kleptocrats in history, Mobutu Sese Seko. It was well known in development circles that Mobutu took 30% of every overseas development dollar and stuck it in his personal bank account. This was well known, and yet he was supported by Belgium, France, the US and other First world governments because he was anti-communist. For a long time- maybe still today- being anti-communist and doing what powerful countries told you to do were the only important criteria for a leader to receive Western support. So here was Mobutu stealing the country blind, building a dozen or so mansions in Belgium- apparently he had quite a few when he died- and we, the rich world, supported him. After he died, the people of the DRC had to pay back the country's debt, 30% of which Mobutu stole. So what did we do in Zaire during the period of Structural Adjustment? Well we reduced the overall expenditures in health by 83%. The powerful of the world supported a despotic, kleptocratic leader; continued to give that leader loans- even when we knew that the accounting stopped in his office for 30% of every development dollar- and then demanded the poor of the DRC to pay that debt back. And because more of the government resources had to be devoted towards debt repayment, health expenditures were reduced by 83%. Then public health people came in and said, "OK we've reduced health expenditures by 83%, now we'll take the remaining 17% and divide that in the most cost effective way possible." That is to me the most vivid illustration of cost-effectiveness analysis gone bad. What we should have said as public health people is, "Look, we can't sit by and watch this go forward. You've got to forgive what is clearly odious debt." And that's a term I use very specifically, because odious debt is debt that is accrued through conditions that are so outside the sphere of normal human activity, that one can declare it illegal and unjust. There is a history of declaring debt as odious; when the US took over Cuba from Spain, they declared the Cuban debt to Spain odious debt, and told Spain that Cuba would no longer be responsible for paying that back. So there is certainly a precedent for declaring debt odious, and declaring that the people do not have to pay it back. The case of Mobutu is a perfect example of odious debt. Yet what we did, was we pretended that that all did not happen, and went in and simply tried to put in more cost-effective measures, and reorganize the health budgets; while at the same time robbing it of funds for the sake of debt repayment. The public health people were told not to ask questions about the politics, not to ask questions about debt forgiveness, not to ask questions about the overall amount of money being spent. They were told to just do the best with what was given. For the most part, we accepted that charge. We went forward trying to do the best we could, and tried to get the most return for a very small budget. We should have said "No, we are health people. This is fundamentally unhealthy, and perhaps even deadly, and so we can't participate in it." I think many of us are saying that now, which is very encouraging to me.
So you feel that people in developed nations are waking up to the health crisis facing the third world?
Not nearly to the extent that they should, but certainly more so. The co-epidemic of HIV and TB are the worst social disasters that we've faced in hundreds of years. So, I think the American and other First World publics are waking up to this, but not nearly fast enough and not nearly soon enough.
Right now there are 40 million people living with HIV in the world; nearly 30 million of who live in Sub-Saharan Africa. Are we closer today to providing them with treatment than we were, say, two years ago?
I think we're closer, but I think we're also still thinking on a scale that is not appropriate to the epidemic. There's no question that the discourse has changed. It used to be, that people would say, "Well you know treatment is important, but we just can't do it." That was even just a year ago. At the International AIDS Conference in Barcelona this past summer, we were hearing everyone give lip-service to treatment, saying "You can't separate treatment from prevention, but let's focus on prevention." So that's still what you hear. Our group has actually treated patients with HIV in Haiti; we've done even more complicated interventions, multidrug-resistant TB treatment interventions in places like Peru, Haiti and Siberian prisons; so we know how difficult complex health programs in poor settings can be. But it's definitely doable. The amount of commitment and effort that has to go into getting treatment to everybody is enormous. And we clearly haven't put up enough money. The notion that we can put up $2 billion, which is currently what the Global Fund for AIDS, TB and Malaria has, and then wait to see if it works, is crazy. We have to start hundreds or thousands of different, focused, pilot projects for the first 6 to 9 months, and then move rapidly into replication and national scale-up after that. We need to start as many different programs immediately, so that over time- and I'm talking about the next nine months to a year- we'll learn a tremendous amount about which approaches are effective and which are not; and which approaches that work in Zimbabwe do or do not in Botswana or the prisons of the former Soviet Union. We have to start these projects immediately, and get them moving. Not only that, but we have to set up a system where the degree of collaboration and communication between projects reaches an unprecedented level. I think we can do it.
What is the real fundamental barrier that must be overcome in order to provide the sick in the Third World with HIV treatment?
As an anthropologist I study cultural history, and in my reading, the last hundred years or so is remarkable for a series of fundamental changes in our notion of the limits of our humanity. For example, it used to be that women were thought of merely as appendages to men , but that's changed- there's still a long way to go- but there have been real changes. Men of the world beginning to embrace the full humanity of women â€“ shamefully we have to admit that this is a fairly recent phenomenon. The civil rights movement- again we have a long way to go- but we decided that it was inhuman to treat African American people in the US as second-class citizens, to deny their humanity. So at that time, our humanity expanded a little bit more. If we look back on those times, most of us consider the kind of sexism and racism that existed, as a primitive part of our past. I think that that the vast majority of us would see lynchings, and the turning of fire hoses on African Americans during the civil rights movement, as primitive and cruel. My conclusion from these observations is that our collective moral task is to identify and root out that which is primitive in our lives today. To deny millions of humans around the world access to effective, life-saving interventions, will clearly be seen as part of the primitive past by our children and their children. We need to make that shift in our sense of the limitations of our own humanity. We need to embrace fully the connectedness of our lives to those of the global poor. And after that, it's money and lots of hard, hard work. But I think once we take that step and re-define our humanity in a way that is more appropriate to our best, most deeply held aspirations of what we want to be as a society; it's not going to be difficult to raise appropriate funding . And it's not a lot of money. For 2 to 3 billion dollars a year from the
Also we're going to have to get serious about taking on these epidemics in all their complexity. This is going to be one of the hardest things we've ever done as physicians and public health specialists. We have to fund it appropriately and rapidly develop the necessary human resources throughout the world. You mentioned 30 million infected in Africa, but the US National Intelligence Council predicts that because of Nigeria and Ethiopia which are in the rapid growth phases of their epidemics, the number could double in five years. We're talking about 60 million people infected with HIV in Africa, by 2007. At that point we're going to see such dramatic drops in life expectancy, such dramatic demographic changes in communities, that no one will be able to ignore it. But we have a choice. By 2007 we could have programs all over Sub-Saharan Africa, India, China, Russia, we could have programs that are treating people and learning from each other to develop more effective ways of providing prevention, support, care and treatment; or we could be having the same arguments we're having today: should we treat or not treat? And by that time, it will be so late that catastrophes in poor countries will begin to have a global impact. . Maybe then we'll act. But the thing about infectious diseases is you can't take back inaction. Infectious diseases keep on going, and you either pay now, or you pay much, much more later. By that time I can't imagine what the cost will be.
During the Viet Nam war in 1967, Noam Chomsky wrote an essay entitled "The Responsibility of Intellectuals". In the midst of on-going American atrocities in Viet Nam, he wrote, "It is the responsibility of intellectuals to speak the truth and to expose lies." Today in the midst of the health crisis facing hundreds of millions of humans living in the poorest places on Earth, what do you think is the responsibility of physicians?
Well, the article by Chomsky is a really interesting one, in that most of the article is saying that the real responsibility of intellectuals, the way it plays out, is to simply confirm the existing social order, and to support the powerful by justifying all the things that they're doing. I think there's a similar situation in terms of what we see today. There's a lot of conventional wisdom out there that says that taking a really aggressive approach to HIV or TB or the other major killers in developing countries, is too difficult, too complicated, and not cost-effective. There's a lot of conventional wisdom that simply justifies the current state of the world. So unfortunately, that still seems to be the real responsibility of physicians. Physicians of many stripes have been saying, "Well it's too difficult; we have to make priorities, and the priority is prevention, not treatment, we have to be reasonable." I think that this type of thinking has let policy makers, politicians, and those with access to major resources around the world, off the hook. Right now because there is a debate about whether we should treat or not, it seems perfectly reasonable to people with access to resources to hold off and wait before taking action; to wait while thousands die each day. Now with HIV, TB, and malaria killing so many people; with HIV continuing to grow at rates that are beyond what anyone had thought, with places like Botswana losing almost 25 years of life expectancy within a decade; in the context of such horrific problems, we can safely say that physicians- particularly those who understand these problems, and the reality of very effective treatments for HIV- I think we have a much larger responsibility. We have to start looking at the social impact that deaths from HIV are going to have in places like Africa, and very soon in India and China. We have to step up to the plate and say, "Well yes, it's going to be difficult to treat everybody, it's going to be difficult to get effective preventive services on the ground and working, but we have no choice." As physicians we cannot stand back and let this happen in front of our eyes. Martin Luther King in his book Why We Can't Wait was trying to make the argument that the people of good will all around him who were telling him, "Slow down, you're going too fast; we canâ€™t expect so much change so quickly;" these people who he called "white moderates," were not only wrong, but in fact he argued that they might even be the enemy. In one very famous quote, he said that it's not so much the words and actions of the children of darkness that he worries about, but it's the silence of the children of light that truly troubles him. That's the situation that doctors face. All of us can sit very comfortably here in the rich world, and debate over a glass of wine how complex and difficult it might be to begin and sustain treatment programs for HIV; how difficult it would be to treat drug-resistant malaria; or drug-resistant TB; and lament the difficulty, and lament the fact that so little can be done. But history won't forget. History won't forget that we sat back and mused about a problem that was destroying a huge portion of an entire continent, and killing poor people throughout the world who don't have access to care. People will look back on us in 15, maybe even five years, and ask what we were doing. What were we doing when we first knew of the destruction that these epidemics were having on poor people throughout the world? Some physicians might say that the real responsibility of physicians and intellectuals in the AIDS crisis is to be reasonable, and to warn of the difficulties of implementing a program, and to talk about the possible cost-ineffectiveness of programs. This essentially is to rule out the implementation of interventions that people are screaming for. The fundamental issue here is that there are medicines that can effectively treat many of these illnesses; that while the interventions are difficult, they are not impossible; and whatever it takes we have to find a way to get these programs working. My own view is that if we seriously take on the treatment of HIV, TB, MDR-TB, and all of the other maladies that kill poor people in developing countries, but that don't kill- so quickly, anyway- wealthy people in both rich and poor countries; that in attacking those diseases and by establishing treatment programs we will have a much broader impact on the healthcare system, and on the social system as a whole. That, I think, is our fundamental responsibility. This is a defining moment for humanity. We have to make a decision. Are we going to choose to sit back and watch as Sub-Saharan Africa, and later other parts of the world simply crumble away? Or are we going to immediately engage in an effort to tackle these diseases, and establish treatment, prevention and care programs the likes of which we've never seen before in poor countries; but which are simply requirements for poor people to live decent lives in the midst of these epidemics. I think that if we turn away, we will be sending a message to our children, we will be sending a message to future generations that we chose the path of inhumanity. But if we choose the correct path, which is to take these illnesses on, we just might witness a fundamental frameshift in our humanity. We will consider poor people living in poor countries with infectious, treatable diseases, as part of our humanity. That will be an advance and an evolution to a better state of being of truly historic proportions.
Faiz Ahmad is a medical student at McGill University, and coordinator of the McGill International Health Initiative. Faiz.email@example.com