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Health for the Poor
An interview with Joia Mukherjee
D r. Joia Mukherjee is Medical Director of Partners in Health (PIH), an organization committed to providing a preferential option for the poor in health care. For over two decades, PIH has worked with sister organizations based in settings of poverty in Haiti, Peru, Siberia, Mexico, Guatemela, and the U.S. A global leader in the treatment of tuberculosis and HIV/AIDS in resource-poor communities, Dr. Mukherjee divides her time between Brigham and Women’s Hospital (Boston, Massachusetts) and PIH clinical sites in Peru, Haiti, and Russia. I interviewed her in May 2005.
RAJ PANJABI: You have worked with Partners in Health for a number of years in Haiti, as a physician and medical director, and previously in Africa, working to deliver comprehensive health care in poor communities. What are the main challenges you and your colleagues have faced in such settings?
JOIA MUKHERJEE: The main challenge is profound poverty. There is one risk factor above all others for early death and it is poverty. In any community in the world, the poorer you are the more likely you are to die prematurely. Medicine can only address one part of that equation because we have to make sure that people have enough food to eat, that children get to go to school, and that people have a roof over their heads. That is why the human rights approach is very important—not only political and civil rights, but the social and economic rights, which are often the most neglected.
Partners in Health responds to these challenges by staying focused on its mission to provide a “preferential treatment option for the poor.” Could you tell us what this means and how it guides your efforts to combat HIV and tuberculosis in rural Haiti and other resource-poor areas?
Much of public health is determined by a very utilitarian philosophy where you have a small pie and you cut up the pie and you use it to benefit the largest number of people. Yet, when you talk to people who are suffering, they are not thinking of these utilitarian philosophies, rather they are thinking of survival. I think we have to take the side of the poor and say that the current size of the pie is insufficient. We have to fight for a bigger pie. To really deliver health care and a better standard of living is impossible to do with the resources that exist today. Preferential option for the poor makes PIH a different organization and continues to guide our work. For example, in HIV, once there was therapy that saved and prolonged peoples’ lives, we said, “Okay, we have sick people, they have this condition, and they want to get better so we are going to get those drugs for them.” The right to health care is placed above what is considered to be cost-effective or sustainable in the public health community.
Many in public health circles point to a lack of infrastructure as one reason to limit investment in and expansion of treatment in favor of disease prevention efforts.
is one in a series of arguments that have been used as a justification
for not treating HIV. The first one and the most common is, “We
have limited resources, can we figure out what gives us the biggest
bang for the buck?” That is the “small pie” argument.
The second big argument is, “Even if you had all the money
in the world, the infrastructure is lacking so you cannot just throw
money at a problem.” AIDS, or any other disease, demands development
of advanced health infrastructure. If we use the lack of infrastructure
as an excuse to stop us from treating the sick and building the
needed infrastructure, it is a circular argument. Yes, there is
insufficient infrastructure, but we will build it as we have the
money. Part of what we are doing is not trying to find a quick fix,
but actually building the structures that will be able to really
take care of people. The third argument is that you don’t have
people with proper training. However, without money and the infrastructure
people cannot be properly trained.
One practical way Partners in Health has addressed the problem of a missing infrastructure is through creating a system of community health workers and accompagnateurs.
What we say is that while there isn’t much health infrastructure in the classical sense, there are plenty of human resources that are woefully underutilized in communities where the unemployment is 70 percent. We put people to work as community health workers, train them, and pay them a salary. Ac- compagnateurs help us perform active case finding. They assure adherence to antiretroviral or anti-tuberculosis drugs. They can alert the clinic staff to the presence of adults and children who are at risk or sick in the communities. It gives our program a whole extra-clinical layer of capacity. This human potential is an important part of building infrastructure and addressing absorptive capacity. It is also the way to provide employment and empowerment of poor people, particularly of women—by giving them jobs.
Could you describe the key features of the program and why it has been so successful in tackling diseases of poverty, like HIV and tuberculosis?
The key features are finding community members who are dedicated people, who are serious, and who are interested in serving their communities; providing them with training about the management of disease or whatever public health intervention you are looking at; and then paying them a salary. Now that is where it gets very controversial. A lot of the public health movement has been built on volunteer health workers. But, in our view, people who are very poor cannot just volunteer for the rest of their lives. Whether it is payment in kind, in terms of food or access to schools or health care, or the payment of salary, we feel very strongly that health workers need to be compensated. Our HIV accompagnateurs came out of the tuberculosis model. In the 1970s the directly observed therapy—the DOTS strategy—was employed on a large scale in the world to treat tuberculosis. The similarities between TB and HIV are that TB is also a chronic disease that needs multi-drug therapy for a long period of time—in the case of TB, this means six to eight months and, in the case of HIV, for life. But we know that adherence to the therapy, being able to take your drugs every day, is very critical to achieving a good outcome for the individual patient as well as to prevent the spread of resistant microbes in the community.
One of the big things that our accompagnateurs do is visit the homes every day of HIV patients who are on antiretroviral therapy. The accompag- nateurs give them one dose of antiretroviral therapy, leave the second dose of the day with them, and make sure they have enough food and water to take their medicines. Also, we train our community health workers to recognize common side effects for people who are on antiretroviral therapy and they report to a supervisory nurse on a monthly basis. If anything happens in the interim, the accompagn- ateurs alert the medical staff to side effects, problems with adherence, or other problems a patient is having. They are considered a very valuable part of the medical team, having regular meetings with the nurse and the doctor in the treating health center. We think it is a successful model.
Did Partners in Health face any skeptics when it proposed the idea of treating HIV in this manner, similar to the way tuberculosis had been addressed using a community-based approach?
The skeptics say one of three things. First they say, “It is an invasion of the patient’s privacy.” In other words, to have a community health worker come to the home is an invasion of the person’s privacy. Our patients really do not mind having a community health worker visit and support them. They like their community health workers and they get to choose from several different people. The patient may also choose to come to the clinic or meet the accompagnateur in a neutral location rather than have the community health worker come to their home.
Another argument from skeptics is, “How can you pay community health workers, it is not sustainable.” Again, we think that the notion of sustainability is not an option-for-the-poor notion. The only thing that is sustainable in these environments without the massive infusion of money, which is what we think is needed, is the current level of chaos and poverty. To sustain this level of suffering is unacceptable. Just as the world has decided that antiretroviral therapy must be done, we think also that paying community health workers must be done. It makes sense to add the salary of a community health worker at somewhere in the neighborhood of $500 to $800 per year to the cost of the regimen. If you imagine that each community health worker follows about ten patients, it adds $50 to $80 to the yearly cost of a regimen. If you can delay the development of resistance for a year or two, you have saved a lot of money—if you want to look at it from a very cold and calculated, cost-effectiveness model.
The last skeptic argument we hear is, “This is a chronic disease, people do not want to do directly observed therapy for life.” I think that is probably true. We have not run up against that yet. I am sure there are groups that will study this. We are studying here in Boston, for example, asking when is an appropriate time to take people off DOT? Has taking the therapy become part of the routine of their life and in those cases can you transition them off of having a daily health worker? But right now, DOT is providing a lot of emotional and medical support for our patients and jobs for people in the community. Neither the patients nor the accompagnateurs have raised any objections, so we are not interested in transitioning people off in Haiti at this time.
This is what pragmatic solidarity is about, isn’t it?
In many cases, our health workers are people from the community living with HIV themselves. Instead of an invasion of privacy this is, rather, solidarity with other community members. Often it is the perfect model to help patients understand the importance of taking the therapy. The patient sees this community health worker; they know how sick they were before they started taking the medicine, they see that they have become a healthy and contributing member of society. Also, the community health workers know what barriers a person faces.
I have heard some in public health argue that community-based interventions work well in small communities, but they do not address the deeply rooted causes at a structural, policy, level.
I think what we do is give people hope in terms of their medical illness. But the structural causes of this really lie in international financial institutions like the World Bank and the IMF. They lie in policy that is made in Washington, Paris, and Geneva. As physicians we should also be activists against the policies that we know are hurting our patients. For us, the option-for-the-poor solidarity starts in the community, but it goes all the way up to Washington where we hopefully speak for the communities most affected, arguing for structural change in international lending, in development assistance, in poverty alleviation, and in primary education.
Partners in Health has received requests from health ministries, most recently from the health ministry in Rwanda, to implement similar community-based programs in their own countries.
We are starting a program in Rwanda now. We are working with a model of integrating HIV care into the primary health-care system in Rwanda, in rural areas.
Are there contrasts between the kinds of challenges you anticipate facing in a post-conflict African nation, like Rwanda, and what you have faced in Haiti?
Each country has its own context. From an economic standpoint, Rwanda and Haiti are quite similar in terms of GDP and the number of people who are subsistence farmers. The health infrastructure in Rwanda is much more intact than it is in Haiti. But I do think that the aftermath of the genocide and the fractious nature of community there will be a bigger challenge for us than we have faced so far in Haiti. We hopefully will be learning from our Rwandan colleagues and community members where we work. However, I think the integration of primary and HIV care will be very similar. I think the differences will exist in what we find at the community level.
You and your colleagues have stressed that this type of integrated community-based approach, coupled with an understanding of the social roots of disease, is essential if equity in health is to become a reality for the world’s poor. Why do you think a community-based model is so crucial?
HIV is a symptom of a much larger problem of social inequality and poverty. There have to be some top-down solutions in terms of funding. But the only way to really find HIV patients and ensure that they are being treated is by providing basic health services. You cannot just open an HIV clinic and expect people to walk in the door. This is because people are sick, they are poor and stressed, and they may not know much about HIV. Maybe they do, but most people don’t think they have HIV until they start getting ill. We think the best way is to provide health care in a community and to build trust and hope so that people will come forward for testing. Also, we have learned lessons from decades of programs in poor countries addressing diseases, like tuberculosis, that are linked to the epidemic: tuberculosis needs to be managed at the community level because the drugs need to be given every day. You can’t have people traveling back and forth to a capital city or a tertiary care center to get their tuberculosis treatment because the majority of people don’t live in those areas, especially in rural countries like Rwanda.
We know, based on the logistics and the difficulties of people’s lives, that care has to be brought as close to home as possible so that the poorest people have access. Also, because these diseases are stigmatized, it is really important to get within the community and work with people who understand the struggles of their neighbors and friends to really be effective.
Having worked in poor communities for many years, you must encounter a lot of despair. What keeps you hopeful in these situations?
That is where being a doctor is a great thing. I do sometimes feel that it is overwhelming, but when you are a doctor you get to make the person better. The whole world isn’t going to be better in a single day, but you get to see people you know you have helped and that is incredibly rewarding. When we feel despair about the big picture, we can take a look at a small picture of a child getting better from diarrhea or a patient who has been cured of tuberculosis or an HIV patient who is now working as a community health worker who was carried in on a stretcher because his or her HIV was so severe. That is what keeps me hopeful. Also, I think it is not fair of us, as privileged, middle-class Westerners to be despairing because the poor depend on us to not be despairing. If we despair we get to go home to our nice beds and sleep. If we want a better world for people who are essentially voiceless, then we have done them a disservice. It is not about our despairing as much as it is about the people whose life and death depends much more on our actions than even our own does.
Could you tell us about your background, what drew you into medicine, and perhaps what part of your training you rely on most in your current work?
I am from suburban Long Island. My father was from Calcutta, India. My mom is from a labor union family in Chicago and is Irish Catholic. What drew me to medicine was having a lot of experiences early in my life of seeing poverty, particularly in Calcutta. While visiting my father’s family and my cousins there, seeing people with leprosy and seeing children starving to death on the street as a little girl had an enormous impact on me. This got me very interested in social justice. I think we learn to look away as adults. If it is in our consciousness as children, then it becomes much harder to look away. The HIV epidemic started when I was in college in 1981. It was obvious to me within a year or two that this was going to be like leprosy, like tuberculosis: a disease of the poor and marginalized. It was natural for me because I had already been very interested in the social injustice of how disease is distributed on the planet.
What part of my training helped the most? Probably, it was getting out of the hospital environment so that I could go to patients’ homes, work in the community, and also go overseas to see the reality. I think what happens is we get pacified by what we can do for people in the United States. If you go into the international setting too late in your training it is overwhelming because you are so used to seeing all the miracles of modern medicine and it is hard to believe that is so different in poor countries. It is like the time before antibiotics or before surgery.
I would say that going abroad early in my training was helpful. Also, doing a lot of community work even before I went to medical school I think was very helpful in teaching me how to work respectfully with community members who are, in many cases, less educated than you are, but much more wise. That humbling experience needs to occur and continue to occur throughout your training.
Raj Panjabi is at the University of North Carolina School of Medicine and a member of Sociologists Without Borders.
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