Controversies within Health and Human Rights

• Rony Brauman
• Stephen Marks

I am going to raise a number of controversial issues related to health, medical care, and moral values. But I do not want to start by making a direct link between health and human rights; rather, I will begin broadly and then narrow down my focus to a human rights approach.

I will start with an observation. It is commonly accepted that representations of the human body—also of disease and sickness—are social and cultural constructs, which means that they vary from one time to another, from one place to another. But it is also commonly accepted that modern medicine is based upon scientific descriptions of the human body. This implies that there is a universal or universalist knowledge of health—that there is an accepted approach that applies to health problems the world over—because science cannot vary from one country to another, at least during a given time period.

We, as doctors, are caught in a kind of practical dilemma. As field actors, we like the idea that, whether we be in Laos or Zimbabwe or the outskirts of Paris, our techniques, our know-how, is valued anywhere, anytime. But we also like the idea that social sciences can give us an in-depth understanding of the cultures we become involved in.

Let me give you a couple of examples. During the war in Mogadishu—the last time I personally was confronted with this problem—we obviously had to treat many bullet wounds, and in a number of cases we had to amputate because of massive infections that could not be treated properly. In our experience, the decision to amputate was a medical, technical diagnosis, which doesn't incur any criticism because it poses a solution to a life-and-death situation. Thus we were surprised to find that most of the young people we wanted to operate on refused to be amputated. They preferred—and this took us some time to understand—to die with their entire body than to live with a visible mutilation.

It was quite difficult for the surgeons, the anesthesiologists, and the surgical teams to accept this because it seemed to violate their raison d'être—if you cannot amputate in a war situation, your role is severely diminished. As a result, many of us felt seriously conflicted. And some of the surgeons ironically found themselves in a life-and-death situation. Their lives were threatened because of their attempts to convince the wounded that it was in their best interests to be amputated. From the point of view of the Somali people, their interest was not to be amputated; their interest was not to remain alive at any cost.

That is a rather stark illustration of a clash in values over health and what is important in life. Our technical approach, which to us seemed irrefutable, was scorned by the very people whose lives were in danger.

Another example, which I also experienced personally, took place during a famine in Karamoja, in the northeastern region of Uganda. Although it was a very limited famine, affecting about 50,000 people, food aid was not sent in sufficient amounts, and there was a terrible struggle for survival in the area. So we established feeding stations for the most malnourished children and tried to organize blanket food distribution to surrounding villages, which is the approach traditionally taken by food programs.

We very quickly observed that the food was being taken away from the so-called target population of children under five and pregnant women to be given to the elders in these villages. For us, there is a very direct moral value attached to pregnant women and to children—they are innocent, they are the future, and these are both important values (not for me any longer, I want to be precise, but it was at the time, and I can see that it is still a very commonly shared perception).

But for the the Karamojong, which was the dominant group in this part of Uganda, maintaining their elders was of supreme importance for reasons that may be obvious even in the West: social coherence, social authority, and decent social standards. Whereas the kids—of course, the death of a kid is always painful, wherever one goes in the world—can be replaced easily. An elder cannot be replaced. That is an obvious yet painful observation.

So who was right; who was wrong? Were we right to try to reach these populations that we'd decided were the target groups; or were the Ugandan people right to give a sort of privilege to the elders and to sacrifice the under-fives? The question is of course meaningless. Nobody was right; nobody was wrong.

The only practical response we could come up with was to attempt to increase the amount of food aid so that such a dire choice need not be made. It took us a long time. In fact, we never really reached the right amount of food aid. Part of the team decided they would not be involved—they would turn a blind eye to what was happening in the villages. They preferred to handle it in that way because they were truly shocked by the situation. A number of young MSF [Médecins Sans Frontières, or Doctors Without Borders] volunteers thought that these people were really barbarians, that they were primitive and violent and would sacrifice their children in order to save people who had only a few years to live so were not worth fighting for. Obviously, that was their impression, and we have all had very intense and emotional discussions.

I have introduced these examples to show you the kind of moral value attached to some of the choices we take for granted: they turn out to be purely cultural choices. For us, they are the choices that best reflect our belief in the need to protect and uphold certain moral standards.

At this point, I would like to remind you that, at least from the French point of view, this was the primary excuse or justification for colonial conquest. The traditional colonial discourse in the 19th century was based upon the fact that we, the Europeans, had moral superiority due to our technical superiority. Thus it was our moral duty to conquer territories and to enlighten the people still living in a kind of primitive darkness.

I really think that those of us who believe in human rights are following some of these same patterns of colonial thinking in our approach to cruel and violent situations, although we do not like to admit this and perhaps are not prepared to accept it in ourselves. I think that many of us are still attached to old colonial or cultural imperialist values.

So that was the first problem, first question, first dilemma, I wanted to bring up to feed the coming discussion.

The second problem I would like to bring up is again related to the medical approach. We, the medical community—also known as the aid community and the scientific community—now have the ambition to eradicate most of the diseases on earth.

In 1978 a WHO [World Health Organization] conference was held in Alma-Ata, which set out an incredible program called Health for All in the Year 2000. We are now in 2001, but I have not seen any real analysis of what has been achieved by this program. I also haven't seen any critical discussion of what is meant by the concept of "health" and "health for all"—and actually how anyone could seriously defend this notion.

For WHO, health does not consist of the absence of disease or handicaps; it is the state of complete well-being, physical, mental, and social. Such a definition strikes me as being totally unrealistic. It has nothing to do with the concrete world, with real people, with actual diseases, or with typical expectations about health.

But it is widely accepted—it is also, of course, widely ignored. I am aware of this. Anyway, it cannot be otherwise. I mean, how can you work with such a definition? But this was the basis upon which was elaborated the Year 2000 program.

That meant that we believed we could eradicate all the diseases. I believe that the model derived from the smallpox paradigm—I call it the smallpox paradigm because in exactly the same year, smallpox was declared eradicated from the face of the earth, which was of course a good thing, but which now is used as a kind of general paradigm that applies to any kind of disease.

And here in the States, it is really striking for an old-fashioned European like myself to see how powerful certain health fantasies are. For instance, tobacco—this is just an incidental remark—tobacco is no longer a health problem; it is a moral issue. To smoke is not just bad for health; it is kind of a sin. I have the impression that here in the States you have a quasi-religious approach to health problems. I am really very surprised and stunned most of the time when I read or see things like this.

Returning to my speech: I would like to address the issue of eradication that was the centerpiece of WHO's 1978 healthcare program—although it was modified recently with WHO's Tobacco Free Initiative. The notion that community health workers would provide healthcare information held fast, although it proved to be absolutely inefficient.

The basic assumption was that 90 percent of the world's diseases could be easily prevented or treated. This sentence crops up again and again in the official reports of UNICEF, WHO, UNDP [United Nations Development Programme], and the social agencies of the United Nations system. It also appears as a kind of foreword in most of the health publications published by NGOs.

I think this assumption is absolutely false—it's a demagogic lie that enables a number of NGOs and health and humanitarian institutions to establish their own special laws for the poor. We think that the world's poor and destitute will have the right to benefit from our generosity through the promotion of health education. The West will have the doctors; the developing world will have "health educators." We will have real practitioners; they will have community health workers. This pseudo-scientific, pseudo-technical—and I would say, ideological—approach to health speaks to our belief in our own superior moral status.

In just a few months after the 1978 conference, WHO trained teams of so-called community health workers—giving them pills, disinfectants, a few drugs, whatever... That was much easier and cheaper than getting involved in real healthcare policy for the Third World, which implies that you train people seriously, you pay them, and you organize a huge administrative and logistical system in order to supply health centers, health posts, and hospitals that allow them to function, that allow them to bring real medical care to deprived areas.

But WHO could justify this because those community health workers were getting rid of 90 percent of the diseases through health education and basic healthcare.

Of course, the people who established and promoted this program would never have permitted themselves or their children to be treated by those community health workers. This is what I meant by a "two-level law"—I don't know how to translate it into English, but I think you can understand.

So that is one of the consequences of this demagogic program that was accepted by everybody, because the WHO conference was a consensual conference and everybody agreed to this program and the solutions it proposed.

In conclusion, there is a real need for taking an analytical approach to the premises or basic assumptions beneath issues of health and social justice, as well as to the conception of we mean by disease. To not criticize these concepts has very heavy consequences—although, of course, I know that the corrupt authoritarian regimes in the Third World didn't need the excuse of WHO not to be interested or involved in the provision of proper healthcare. I am not naive enough to ignore this aspect of the problem. But at least we could have refrained from giving these authoritarian leaders such an easy excuse for their negligence. On the contrary, we should have exerted some pressure on them to take things in the right direction.

I am not talking about these huge white elephants—the hospitals that were established after decolonization and were an absolute failure. I am aware that such hospitals were the reason why the whole idea of how to establish a health system was re-examined in 1978.

But the shift that took place was really too big, too extreme. We know, for instance, from eastern African countries—Uganda in the 1970s, Kenya, Tanzania—that efficient health structures could be established and made functional without real foreign injections—although now, given the general economic status of those countries, it could not work without foreign technical and financial assistance. But the structures themselves exist and they should be reactivated. We do not need to work on phantasmic models. We already have the structures in place, provided we are ready to find out how they work.

In closing I would like to describe a very recent experience we had at MSF, which had to do with tuberculosis. In the early 1990s, WHO—again, WHO does what the national experts want WHO to do; therefore, I am not accusing WHO itself but all those who take responsibility for WHO decisions, namely the member states—engaged in another eradication program concerning tuberculosis. The main goal again was to get rid of TB, given the fact that multi-drug-resistant-TB, called MDR-TB, was becoming prevalent again, primarily in Third World countries.

In order to avoid the spread of this MDR-TB, many medical NGOs—not only NGOs who do medical practice in the field—became committed to the WHO program, which instructed that no patient should be treated unless you could get an 80 percent rate of compliance. So if your studies revealed you were unlikely to reach this very high rate of compliance, then better not to treat. The idea was, you should refrain from treating patients than risk spreading MDR-TB and killing many more people.

For the non-medical persons here, I'll explain that you cannot treat TB patients like you treat patients with other kinds of diseases. TB patients need special follow-ups, which requires a TB program with a specialized lab technician, to ensure that they follow the treatment for at least 8-10 months.

After a couple of months, the patients are under the impression that they are cured, that they are okay—an impression that tempts them to abandon the treatment. The problem lies in the so-called "defaulters"—a name that has a moral overtone but refers to those who abandon the treatment prematurely. Defaulters threaten other members of the community because they are vulnerable to developing MDR-TB.

So in the name of this eradication program, in the cause of struggling against MDR-TB, for the sake of nice statistics, MSF and other humanitarian aid groups accepted that human beings, people of real flesh and blood, can be sacrificed. Meanwhile, nobody bothered to ask why the hell pharmaceutical research and development of anti-TB drugs should not be resumed. As some of you may know, the last anti-TB drug was marketed in the 1960s. Since 1965, there hasn't been any new anti-TB drug, so we have only this very limited, very old anti-TB weaponry.

TB is an infectious disease. As with all infectious diseases, it evolves genetic mutations that require new antibiotics. But nobody bothered to raise this issue because, of course, TB patients are poor; therefore, they are not a profitable market. Thus TB research has been nearly if not totally abandoned.

But the WHO, instead of recommending a resumption in TB research, because TB is a real public health issue—and we the NGOs, who stand behind the WHO and like to think of ourselves as the world's moral community—preferred to stick with the cause of disease eradication, even if that meant embracing a policy of human sacrifice. Again, we have a conflict of values: the values of achieving perfect public health standards versus the values of treating real persons in dire need of medical care.

I'm sure everybody was provoked by Rony's observations, as we were supposed to be, but also well informed by them. They suggest for me three areas of reflection on how controversial issues on health and human rights can lead to new avenues and strategies that reinforce both health and human rights:

(1) The idea that medical knowledge is culturally determined and that it is a Western construct to believe that scientific knowledge is universally applicable. Those of us working in the human rights field have faced that very same dilemma since the first effort to articulate human rights in an internationally acceptable language—i.e., the conflict between universality and cultural relativism.

Rony further suggested that the biomedical approach, as used by medical practitioners in Uganda and Somalia and elsewhere, might be perceived as a new form of colonialism. This, too, has been a challenge to human rights work all along. We have been constantly confronted with the question of whether and to what extent the values that we are articulating as universal human rights values are not really a form of Western cultural values being imposed upon radically different societies with different moral bases.

From the human rights perspective, this is in part because different societies, represented through their authorized state representatives, have participated in the norm-creating process that has led to the articulation of international standards. Universal human rights have been agreed upon in the international norm-setting process, principally through the United Nations. There aren't really any other models.

Another partial answer is to point out that the states with which you are dealing have undertaken to respect norms regarded as universal. This does not answer the question of what happens when you get beyond the educated people in the capital, to the people for whom the very words that we know in half-a-dozen Western and Eastern languages do not mean anything when translated into their local languages. That challenge is one we are facing every day.

But in my view, the response that works most effectively is to say that grassroots do not need to be taught human rights from abroad, from other people bringing it in. Rather, they tend to embrace the human rights discourse because of the value it has in changing their social reality and in overcoming the forms of oppression and repression of which they know they are victims.

Now, how does this translate into the comparison between universal human rights and the biomedical model as being universal? I am not quite sure, and I suggest that this is, indeed, a controversy that we need to reflect on and offer comments.

(2) The idea that health is, as the WHO puts it, the "highest attainable standard of physical, mental, and social well-being." At that level of abstraction, there is very little difference between the definition of health and the definition of human rights. Take the full set of human rights. Try to find anything that is not contributing to the physical, mental, or social well-being of human beings. Development likewise embraces essentially the same set of objectives. It suggests a form of holism, a form of interconnectedness for these various processes that, in one sense, is useless because it is at a level of abstraction that does not allow you to engage, for example, in medical practices customized to the situation. However, I would maintain that it does offer some valuable insights into both holism and to the role—and this is what you were essentially attacking—of community-based efforts.

I would like to reflect for a moment on the attack that was made on community-based efforts, and perhaps take as a starting point the evocation of an old European perceiving the moralism that goes into Americans' attitudes towards smoking. Well, it is a very interesting observation because there is definitely some truth to it. Americans are kind of weird compared to the rest of the world when we do that.

On the other hand, there is some truth to the fact that the anti-tobacco campaign is a successful effort at health education. Many Americans have transformed their behavior as a result of being made aware of the link between a behavioral pattern and disease.

Related to that is the definition of the "right to health" in the human rights world. It has attained a degree of specificity that takes us well beyond "the highest attainable standard of physical, mental, and social well-being" of the general WHO definition, and well beyond the Alma-Ata definition of health and the need for community-based efforts in health education and primary health.

A few months ago, the Committee on Economic Social and Cultural Rights adopted General Comment Number 14 to identify various elements that I think are particularly useful to addressing the types of questions that you raised in challenging the definition of health as well as the strategies used to respond to disease.

That definition contains a clear statement of the necessity to take into account how a wide range of rights—not only social and economic, but also civil and political—are necessary for realizing the right to health. It defines and attempts to clarify what is meant by "accessibility to health" and "affordability of health" and "appropriateness of health" and the critical place of non-discrimination, accountability, transparency, and participation.

It is in the practice of linking health and human rights—by dealing with the problems that real health practitioners must face in critical situations, calling on an evolving understanding of the human rights framework—that I think more progress can be made than suggesting that this is a utopian waste of time—or a Utope Sanitaire, I guess, because I have not read your book yet, but I see the title and am dying to read it.

(3) The idea of a biomedical model that entails establishing more hospitals in the capital, more dispensaries in the provinces, and so forth. I think you give too much importance to this model given the reality of poor countries; more can perhaps be drawn from community-based medicine and healing traditions. We should strive to overcome the defects of the community-based approach while also reinforcing that approach, not allowing it to become a tool for corrupt dictators.