Health for the Poor




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. 



That
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.