“Between the Concrete and the Clouds: Living Your Human Rights Principles.”
Keynote address delivered by Paul Wise
Human Rights at Stanford
October 14, 2009
Helen Stacy: It is my great pleasure to welcome Paul Wise, Professor of Pediatrics here at Stanford Medical School. Paul has been at Stanford since 2004 and is doing some extraordinary work in child health care around the world. Let me tell you a little about where he came from and what he has done. He was Professor of Pediatrics at Austin University, and was Vice-Chief of Health Inequalities at Brigham and Women’s Hospital. He was also director of emergency and primary care services at Children’s Hospital of Boston and was Director of the Harvard Institute for Reproductive and Child Health at Harvard Medical School.
For us particularly in the Human Rights Program, of interest to us, for human rights activists, practitioners and theorists is Paul’s focus on child health policy, particularly the disparities that race, ethnicity and socio-economic status visit upon children around the world. Paul works in Latin America, in fact he is getting on a plane to Guatemala in about 4 hours time. He has worked and continues to work in the fields of tuberculosis and HIV/Aids in South Africa and India. Paul has a particular interest in the question of giving children a zone of peace in areas of conflict. We share an interest in the responsibility to protect as an international doctrine which would prevent nation states from harming their own citizens. We share an interest in the way in which that doctrine could be focused specifically on children as a group so that they can be the beneficiaries of protection in times of civil war, whether or not that means that they are protected from the ravages of their own government’s violence or whether it might mean making a space for international aid workers to come into a country from outside. It is an interesting subject for me as an international lawyer, as it is clear to me that the responsibility to protect as international doctrine has been really damaged by some of the events of the past years, where democracy promotion has been used as a rationale for invasion and other forms of intervention from the outside into countries that are in a state of civil unrest or great internal need. Paul and I remain optimistic about the idea of requiring nation states to be responsible for their own people and when it comes to optimism and also modesty you have here someone who is hard-working, incredibly passionate but also wonderfully modest and a wonderful colleague to have. Thank you Paul
Paul Wise: Thanks to you Helen, Larry and everybody here. One of the great joys of coming to Stanford has been the warm welcome I received from Faculty at FSI and particularly at CDDRL. I am particularly happy to be present at the inauguration of the Human Rights Program.
What I would like to share with you in the next few minutes is a problem, a challenge that confronts many students at places like Stanford who are trying to figure out professional careers and professional identities in a world that is both unstable and highly stratified, particularly students engaged in learning a technical expertise – engineers, pre- meds, who are going to go on to do work in medicine or public health, primarily focused on getting technical skills to provide technical interventions in the real world. It is also a challenge that has ripped apart global child health in very important ways, and created tensions between the medical public health community and the human rights community in ways that are extremely counter-productive.
Let me begin by showing this [slide]. This is a young child from the Central Plateau of Haiti with tuberculosis, HIV and malnutrition. We could spend quite a bit of time talking about how babies get TB, HIV, all the treatments and diagnosis, all the technical aspects of how we deal with issues like this, but the challenge that I would like to talk about comes from the fact that this child, with tuberculosis, HIV and malnutrition, lives in this house -- that the primary problem is trying to address profound clinical problems like HIV, TB, etc in settings of profound poverty; recognizing that the diseases that we see clinically in small children in the places in the world that we are most worried about are diseases of profound material deprivation. How does one think about providing clinical care in a setting of profound material deprivation? Historically, since WWII, the focus was “these are diseases of poverty, let’s get rid of poverty.” The focus was on economic development and that these diseases, these problems with little children would disappear as the developing world develops. And we’ll send in a little humanitarian relief for tsunamis, famines, etc. But the primary focus was on social and economic development.
Through the 50s and 60s and pretty much through the 70s, this was the basis of global child health work. But in the 80s this started to change. There were two main reasons for this. The economists weren’t doing so hot. Development wasn’t going very well. Poverty was persistent and was in fact getting worse in many parts of the world. There was growing frustration with sitting and waiting for that. At the same time, the 60s and 70s brought about a whole new array of new technical strategies, highly efficacious technical capacity to prevent and treat the primary traditional threats to child health. And the combination of frustration with the economists and this growing capacity to intervene brought about a profound change in the strategies to address child health in the world. Rather than seeing infant mortality as merely an indicator of economic development, for the first time we were going to go after infant mortality directly. UNICEF and other groups around the world built a new strategy, a technical strategy, called the GOBI (Growth monitoring, Oral rehydration, Breast-feeding, and Immunization) strategy, highly focused technical interventions focused on reducing young child mortality in the development world.
Growth monitoring: It was noted in the 60s and 70s that merely by weighing kids in poor communities would actually help improve their growth and reduce malnutrition, and it was noticed that merely identifying kids at real risk from malnutrition within the families of communities meant that the community could redistribute its resources towards the kids most at risk.
Oral Rehydration: Diarrhea and dehydration are major killers in this area. In the 70s work in Bangladesh and Asia, showed that you could prevent death from dehydration and diarrhea using oral rehydration therapy.
Breastfeeding: In the 1980s the big infant formula companies were marketing their products to some of the poorest communities on earth. They would hire local people and dress them in white to look like nurses as a marketing tool.
Immunizations: A whole new battery of immunizations was coming available in the 1980s.
And so GOBI became the core program of global child health improvement throughout the world in the 1980s. But that began to change in the 1990s. A lot of pressure was put on the GOBI strategy during the 90s because of the growth of the human rights movement. A focus on international law and legislative changes led to questions like “What does GOBI have to say about child soldiers?” “What does GOBI have to say about child labor?” “What does GOBI have to say about trafficking young sex workers?” This culminated in the UN Convention on the Rights of the Child and was ratified by every country in the world except one. The United States. This very important convention set in motion a shift in global child health strategy towards child rights and human rights and social reform as the core focus for global child health. We saw groups like UNICEF shift their framework away from highly technical strategies like the GOBI strategy, towards a more comprehensive social reform initiative.
That became central to the child health movement throughout the 90s. However, at the end of the 90s into the 2000s people began to notice something, and it is shown on this slide – the annual decline in under-5 mortality. Improvements in mortality were beginning to slow, particularly in the places with the highest mortality. This rang alarm bells throughout the global child health and public health community. Something was going wrong and we were beginning to plateau. This work which began to show some stabilization in these mortality patterns was associated with a series of articles in medical journals, particularly “The Lancet,” a British health journal generally recognized as the most important global health journal in the world. They said that not only are mortality declines slowing down but let’s look at what these kids are dying from. What the expert panels found was that the vast majority of the persistent mortality in the developing world was preventable with interventions we already have now. And the fact that the slowing down was preventable unleashed a public rage in the global child health community. It was directed at the rights-based approach of UNICEF and other global child health actors. And the editor of the Lancet wrote a lead editorial basically trashing UNICEF and its Director Carol Bellamy. I don’t usually read quotes when I give talks, but this quote is perfect for capturing the rage and the frustration so I am just going to read it to you.
“UNICEF clearly has a pivotal role to lead the world’s efforts to make children a global priority. Under Bellamy’s leadership UNICEF is presently in a poor position to do so. Her distinctive focus has been to advocate for the rights of children. This rights-based approach to the future of children fits well with the zeitgeist of international development policy but a preoccupation with rights ignores the fact that children will have no opportunity for development at all unless they survive. The language of rights means little to a child stillborn, an infant dying in pain from pneumonia or a child desiccated by famine. The most fundamental right of all is the right to survive. Child survival must sit
at the core of UNICEF’s advocacy and country work. Currently, shamefully, it does not.”
[June 2003, The Lancet, Editor Richard Horton]
You almost never hear language like this in medical journals. The only place I hear language like this is in biblical studies. They really go after each other personally. So this is unusual and it captured so perfectly this cleavage in the field, this tension between those focused on technical strategies, the child survival world, and those focused on social change, on child rights. It is exactly the dilemma that students come to me, sometimes in tears, trying to navigate as they go through a pre-med or public health curriculum and then spend time in Ecuador, where they realize all these clinical problems are generated by profound poverty. How do we navigate this territory? Well, clearly this kind of a cleavage, this kind of antagonism is intensely counter-productive, and the question becomes, “Is it in fact necessary?” And the real question, from a conceptual point of view, and one I have to address in the epidemiology of health inequalities is how, in fact, can clinical innovation speak to the social determinants of health? How important are clinical capabilities in addressing profound inequalities in health outcomes?
I’d like to take a step back here, to look at an illustration, kind of a case study to see how we might be able to rethink and begin to explore ways that these two antagonistic arenas can be integrated. There are three groups of people. [slide]. Similar exposure, but look at the outcomes.
In group one 3% died. In group two 14% died In group three 54% died
Similar exposure but widely divergent outcomes. How could something like this happen? Well, the first possibility is that you have differences in underlying risk in the populations such that group one is low risk and group three is very high risk and any serious exposure is likely to give you widely divergent outcomes. For example group one could be young adults and group three could be frail elderly, and any serious exposures are likely to give you very big inequalities in health outcomes. That’s possibility one. Possibility two is that risk may be exactly the same, but you may have differential access to an effective intervention, such that group one got the intervention and group three did not. Now, I could ask you all for a bunch of different explanations, but my basic suggestion to you is that there are really only two ways that you can get an outcome like this, and they are differences in underlying risk and differences in access to effective intervention, or both. And we know they tend to travel together, like two birds flying on the same gust of wind. But they are not the same thing. And any other suggestion of how this could have happened I would have pointed to one of these two categories.
Now, this may have been an outbreak of infectious disease or toxic exposure but it was the sinking of the Titanic. It was the first class, second class and third class female passenger list. And what happened at the sinking of the Titanic? Differences in underlying risk or differences in access to an effective intervention? You saw the movie? Remember when Leo was trying to get up the stairway and it was blocked off? They loaded the boats by deck, by class. Now, I use the example of the Titanic because it’s a great illustration of differential mortality but it’s also an important reminder that social class can affect who lives and who dies when you least expect it.
Now, taking the lesson of the Titanic and bringing it back to our conversation about global child health allows us to create a discipline for the conversation and for me as a researcher a way to discipline and organize the epidemiology of disparity creation to a very simplistic framework. It is certainly a way to organize the policy conversation. And it looks like this. You can organize it to factors that generate differences in underlying risk and differential access, but what is this thing in the middle? Efficacy. It has to be there. Because if you have an intervention wholly without efficacy, that doesn’t do anything, do you really care if there are differences in access to it. No. But what happens if efficacy is high -- things move towards a differential in access, and even small differences in access to that intervention can dominate disparity in outcomes. However, when efficacy is low it doesn’t really do much. Access falls away -- things move towards differential risk and differential risk will be expressed and dominate disparities in outcome. So when people ask me does access to care really make a difference to disparities in child health I hate to give this answer, which is, “It depends” It depends on the efficacy of the intervention. Because if the efficacy of the intervention is high, be it primary care, tertiary care, high tech, low tech, if it is highly efficacious it’s in play and even small differences in access can have a huge impact on disparities in outcome.
And part of what I do in my research is look at the epidemiology of new efficacy coming out of labs off protocol. What does it do to inequalities in health? What it begins to show is that the pivot is on efficacy. As efficacy grows, so does the burden on society to provide it equitably to all those in need. This is a very dynamic framework. We are living at a time where efficacy is growing all the time. Welcome to Stanford. Welcome to Silicon Valley. That is what this place is all about. So, as efficacy grows, and it is growing all the time, so too does the justice burden on society, to provide it equitably to all those in need and in fact justice tracks with efficacy in this context. It doesn’t matter what kind of efficacy it is, it just matter whether it is efficacious or not.
Now, I want to tell you a little story about how this works in the policy world. Very early in my career I was asked to provide Senate testimony on a bill that was introduced to expand funding for enhanced pre-natal care for women in the US to reduce infant mortality disparities. My research was on infant mortality reduction so I got very excited, put on the only suit I ever had and flew down to DC. I was a little disappointed because they decided not to have the hearing in the Senate Office Building – I was brought up in college on Watergate, so I saw the Watergate committee sitting up behind the table and me giving testimony. They were going to do it in a community hospital, to be one with the people. I was disappointed to know that I was not the only person to testify. They had
about 800 people to testify. We were sitting in a big auditorium with dingy lighting in August with no air conditioning. They asked the Assistant Secretary of Health to testify. This was first Bush administration and they came out against the bill, and the Assistant Secretary of Health was giving the administration’s position against the bill to expand pre-natal care in the US. And the Assistant Secretary of Health was a good guy, knew a
lot, but he spoke in a terribly monotone voice. He was droning on and on. I was interested in this stuff and even I was dropping off. And then the Assistant Secretary said “… and
we really don’t know whether pre-natal care works …” and the lead Senator, who was about 6’6” and from Minnesota stood up, leaned over the table and whacked the table. It was like 3rd grade. Everybody in the room was startled, including the Assistant Secretary. The Senator looked at him and said “Are you here to tell me that that the position of this administration is that pre-natal care doesn’t work?” And you have never seen such tap-
dancing in your life. The Assistant Secretary said we would never say that pre-natal care didn’t work; we just want to do more research to improve it, to refine it, to make sure it works better. The Senator said “Thank you very much. I am glad you clarified this point” and sat back down again. Very boring testimony for the rest of the session (except for mine, of course). So, why did the Senator jump up and bang the table when the efficacy
of pre-natal care was questioned? It’s because when you question the efficacy of pre- natal care you by definition undermine advocacy pleas for enhanced access to it. In other words there must be a perception of efficacy in order to advocate for enhanced access to that capability or else it just doesn’t work in the policy world. I tell this story because something that drives me crazy in watching this antagonistic social change/medical intervention conflict take place is that I often hear social scientists or lawyer devalue clinical capability in order to elevate social causation of health problems and health inequality. That is not a progressive position to take. I understand where it is coming from – I went to med school; I certainly hang out at FSI because I am totally committed
to the notion that social forces determine health, certainly health inequality. But it is not a progressive position to devalue clinical capability in an attempt to elevate social causation, because you paint yourself into a political box that ultimately undermines, cleaves, enhanced access to this clinical capability. And at a time when we are struggling
to provide access to health care for everybody in this country and around the world that is not a progressive position to take.
So, by focusing on efficacy and allowing us to look at a framework like this and organize the policy conversation in a more disciplined way, we begin to see things take place in a different way.
[slide]. This is a man in Central Haiti with HIV and tuberculosis; another man from Haiti with HIV and TB, a little baby in Guatemala with HIV and we come back to our friend who started this whole conversation in the beginning, with HIV, TB and malnutrition.
Now, when it was recognized that anti-retroviral therapy was quite effective, highly efficacious in the US and Europe, there were pleas to get it out to the world, to people like these here. But the arguments were that it is very expensive and it is very
complicated to provide – it’s not just giving a pill, it’s complicated. The most interesting attack was that by focusing on anti-retrovirals it was a distraction away from the underlying social causes of HIV in these communities, which we all recognize are profound. In fact the response by the world community was “Forget about it; we’re not going to do it.” Of course, there were some people who were not going to accept that, who felt that this was the because efficacy and social justice track together that this was
not acceptable and they were going to put in motion anti-retroviral therapies in places that
people were not willing to do it, but they would do it anyway. And this man got anti- retroviral therapy. That’s the same man after one year anti-retroviral therapy. This man now works in the pharmacy at the Partners in Health program in Central Haiti. This little girl after anti-retroviral therapy is this little girl getting a checkup for pre-school. And this little baby – you can barely see in his mother’s arms there, but the technical, pediatric
term for this is “butterball” – chunky, doing much better. This stuff works. Now why people should be shocked that it works in Haiti and Highland Guatemala, when it works just fine in San Francisco is sort of beyond us. But the point is that this little butterball is still living in the same house, but there is technical capability to improve lives and address many of these complicated health problems.
If we can do it in Haiti we can pretty much do it anywhere. What spawned was a movement to get anti-retrovirals out to the places that really needed it. And a bunch of mechanisms were created -- the WHO, the 3x5 campaign, (get 3 million people on anti- retrovirals by 2005), the global fund, PEPFAR, which is the US Presidential Emergency Fund, was a mechanism to get funding, to get anti-retroviral therapy out to the people who needed it in the developing world. The problem was, of course, that people began to realize that the 3x5 campaign turned into the 1.5x5 campaign. In other words it was very
successful. Those 1.5 million people wouldn’t have got anti-retroviral therapy without the
campaign. However, it didn’t reach their goal, because it began to hit problems with provision on the ground. They found it very hard. There was money sitting in banks, in the global fund, but they couldn’t get the money out to actually provide services. What we began to see was not only a lack of improvement in many of the worst hit places, vis- a-vis child health mortality, but things were getting worse. It wasn’t that declines in infant mortality were beginning to plateau, but numbers were going up for the first time in a long time in places like Congo, DRC, Nigeria. What some people began to realize is that the traditional way that the clinical and public health community were trying to get these technical strategies out was beginning to hit a wall. And that wall, in fact, was getting harder and worse. [slide]. This graph is basically all child mortality in the world, by where it is coming from. You can see that child mortality is coming down in the world, nicely over time, although you can see a little bit of slowing over time. But let me call your attention to this: By the year 2015, more that half of all child mortality, and certainly the majority of preventable child mortality is going to be coming from Africa, and in fact mostly from sub-Saharan Africa.
When you begin to look at this more closely, particularly what we are doing about services in Africa, you can map where foreign aid is actually going. This is done by groups that look at these things. And basically what I am going to call your attention to is the pale green and pale blue places. Those are the places where the amount of money
being spent on health divided by DALYs (Disability Adjusted Life Years). It is basically bad health outcomes; a ratio of spending to need. And the light green and light blue places have the lowest ratio – a little money for a lot of need. When you hone in on Africa what you see is that there is a pattern to this. It’s quite varied. There are some places like Namibia and South Africa which are doing ok, but in other places it is totally awful in terms of where foreign aid is going towards health. When you look at absolute mortality, at where children’s mortality is taking place it looks something like this. [slide]. When you look at where it’s coming from, in Africa the places with the very low spending to need ratio are places ravaged by civil conflict, and refugees. When you look at this, it looks like this. [slide]. I have put these little explosions in places that are deemed high conflict areas. In fact, high conflict areas are precisely the places where NGOs and foreign aid don’t want to go. Not too surprising. But when you look at where the actual need is you get a graph that looks like this. [slide]. No, nobody spiked the coffee with LSD – this is the contribution of each country in sub-Saharan Africa to preventable mortality. These are the countries that contribute the most. In fact, when you look, as we have been doing in our work over the last year, where preventable mortality is actually occurring about 50% is occurring in countries where none of the NGOs, none of the big funders want to go. They are places like the DRC, parts of Nigeria, Ethiopia, and in the last year or so Zimbabwe. What is basically suggested is that when we really get down to this, we need to recognize that child health truly reflects the exercise of power. That even though we have all this technical capacity to improve child health, and we know that it works when it can get out there, that ultimately provision, and therefore the equity issues associated with it, will depend at some level on the exercise of political power.
The question that we are trying to confront collaboratively with all of you here is: To what extent will the provision of this enormous and dynamic medical capability require political reform? We put together a series of activities that we are calling the Children in Crisis Project that is trying to look at these issues in a collaborative way; to begin to bridge the gap between the child survival world and the human rights world. Carol Bellamy, the head of UNICEF, was a lawyer, the people screaming at UNICEF about their child rights were doctors. This was more an argument about disciplinary pre-
eminence than it was about the reality of how things work on the ground. Our mandate, in this project, is to try to provide a bridge, a linkage, between the child rights and technical survival community in ways that may be helpful. At first the thing that really drove me to the exercise of power is: Where do we get great new ideas about questions of
sovereignty, about the responsibility to protect? How can diplomatic and legal cover be created for the provision of technical interventions in the places that I began to look at?
I was particularly informed by people like Steve Krasner, who is here and Francis Fukuyama, who will be here and of course books and expertise like this and Helen’s book that are being used by people like me, technical, a pediatrician (although I was a Latin- America Studies/PoliSci major in college). The point is that there is an enormous amount we need to learn conceptually and legally, in the rights community and the political science community to be brought to this issue. We also require new technical innovation. If we have 48 hours every six months to go into a war zone, to a children’s zone of peace, or during a truce like El Salvador or in the DRC; in parts of Lebanon then what should be the package of technical interventions, and how do we actually do it. That is going to require technical innovation. Design people, engineers, medical scientists need to design new ways that are responsive to the political requirements of moving into areas where
50% of preventable deaths are occurring. Coming up with 3 year projects to build an infrastructure and train nurses may be fine in Botswana, but it isn’t going to work in Southern Kivu Province in Eastern Congo. Last we must build relationships with people on the ground - agencies and NGOs struggling to provide these kinds of services in areas that are politically unstable. That, of course, will be an important part of what we are going to do, and what I’ll be doing in Guatemala and in Eastern Congo in late November. But my great hope, and the reason I was very happy to speak to a group of students and educators, is that my hope is that we can train a new generation of leaders who will not fall victim to these disciplinary antagonisms and tensions. All of the work we are doing involves students at different levels to try to create a generation of leaders who can navigate this territory in a much more constructive way. Here are med students working on a TB project in Highland Guatemala, going door to door looking at stoves and the social determinants of TB in these areas. They are working with community health workers who are organizing politically as well as technically. They are doing oral health, but through school change and through community health workers. They are providing education in dental care and if you don’t think that’s important to children, when I walk through town they always ask me if I have any Colgate, tooth paste! It’s expensive, but it is important.
Basically, my argument is that we need to craft educational and service experiences that are directly instructive and help these students navigate this territory in a way where they can begin to create new kinds of professional identities and career paths, that integrate a sophisticated understanding of the justice requirements of health and the political requirements for the provision of health in these areas, just as they are learning organic chemistry and becoming really good clinicians in very high-tech, dynamic environments like this. [slide]. Here we see a young medical student dealing with a victim of domestic violence in Highland Guatemala. [slide]. This Jerry Blauet, an intern in Boston, who works in rehabilitative medicine, and who has also won the Boston and LA wheelchair marathons several times. She has integrated her work in rehabilitative medicine in Guatemala with a profoundly political agenda directed towards community involvement to support people with disabilities and disabling conditions. My hope is that this new generation will come out of places like Stanford through collaborative programs like the one I am trying to describe. It’s not going to be easy, but my hope is that with leadership, with Helen, Larry, Deborah, Tim Stanton, and others who combine FSI capabilities with medical school skills, that this generation will be able to do this in ways that I never had in my training. That these students will be able to craft a professional identity and career path that recognizes that the dual struggle – the struggle for efficacy and the struggle for justice will always be inextricably linked.
My hope, basically, is that we recognize that scientific investigation and discovery will always be critical. But so too will be the generation of political will. Solidarity if you
will. And solidarity is never discovered, it is always created. My commitment to this area is based on my strong belief that there is an actual opportunity to move in this direction – to fill the gap between the worlds of both child health and child rights in ways that ultimately ensure that our programs and policies will be both effective and just.