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 "I think Rachael King, Dr. Sam Kalibala, and I, completely separately, as we didn’t know each other at the time, had the same reaction to the devastating news of HIV/AIDS as far as the involvement of a huge sector of African society that had been active in terms of health care and prevention for generations, before we even had documents.." |
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We met completely fortuitously. Rachael and myself at UC Berkeley in the US, and then Sam, who was one of the founders of TASO. We had no idea we would land in Uganda at all. Rachael came to work on a UC project in Rwanda on HIV/AIDS called Project San Francisco. I was going to work in Rwanda with the International Red Cross. I arrived there three days before the war and we were forced out of the country.
It was suggested that we pay a visit to Dr. Kalibala. This was December 1990. We met with Sam in Kampala and we clicked, we were all talking the same language. He said, ‘you write the proposal; I will make it happen here’.
We flew back, as the Rwandan situation did not clear. We only came back seven months later, but in the meantime we wrote a proposal, and sent it to a number of potential donors but without having any idea. But then at Rockefeller, the person in charge of the health division knew very well Sam Kalibala. He knew very well Uganda, and said maybe we can fund this project. It was a very unconventional proposal, but AIDS was also crazy and unconventional. It is probably because of AIDS that a project that was off the beaten track was funded.
Initially, it was about documenting the effectiveness of traditional medicine with the treatment of one of the rare, but very specific, conditions that hits young people with HIV: Herpes Zoraster, Shingles, very debilitating. Even conventional doctors here and in Rwanda had mentioned that many of the patients seemed to find relief by going to traditional healers. So, we embarked on this, and that is how a project started.
The reason it was made possible in terms of logistics - it is not easy to land in Uganda in 1989, three years after the war, when you could see a lot of the stigmata still - and start a project like this. The fact is I had run into Doctors Without Borders (DWB). I didn’t think that was going to be for me because I thought all they were doing was war medicine, but then I was quickly corrected by one of the founders in Geneva. He said ‘oh no, we are interested in a public health project’. I told them that if our project were funded, I would have to leave them. He said they were also interested in the project. When they saw it, they said ‘if you get funded we will give you administrative support’. So that is what happened. I started; Rachael came two years later under the umbrella of DWB. We carried on this project in collaboration with TASO, that is where Sam was, and it went from a small project on the effectiveness of herbal medicine for shingles, to a more comprehensive care and prevention project. It was not just because we envisioned it that way, it was because the healers got involved. The first healers that we collaborated with really expressed this interest. They wanted to know more, they wanted to see more, to talk to their peers and their communities about this.
Gradually we formed what became a much more important part of Theta, because, not only the need, but also the interest of the donors. After Rockefeller came in, there was considerable reluctance to fund clinical, observational research in relation to traditional medicine, and that had to do with a number of factors. In part liability, but also biomedical research is confined to a few institutions, NIH in the US, MRC in the UK, Pastor Institute in France, and it is not going to be taken over by donors who don’t have the medical and scientific expertise. The private foundations are much more comfortable with training, education, and prevention. So that is how it developed, but it also responded to a recognized need by the Ugandan Minister of Health, which could also send its support, not from a financial perspective, but from a technical and political perspective.
The president of Uganda, Museveni himself, is extremely supportive. He continues to be supportive of research on traditional medicine. He doesn’t try to initiate much action at the Ministry of Health, but he has always been paying great lip service and manifested his support. So, over the years, Theta started to train – that is a little bit of an arrogant proposition- to share information with healers, to try to empower them with knowledge of HIV/AIDS. That was quite an enterprise if you know that healers were repressed and underground for many years, so it wasn’t simple to come up and say, well let’s do this about HIVAIDS, let us teach you or let’s exchange views.
A big part of the effort was to set up the collaboration and gain the trust. Once that was done, Theta went from district to district, working with the health authorities and developed a kind of strategy that has worked pretty well in involving the healers in prevention and care, I think without being too arrogant. The normal standard of services, whether they are government or non-government, would have great difficulty with their reach. Healers are part of their villages; they are part of their community. They are as poor as others are; of course, they speak the same language, the cultural language, and that is an enormous advantage over standard health workers. But it takes years of involvement, it takes an anthropological approach to gradually become able to communicate with communities at the level of those who have been there for generations, who maybe are already respected, trusted, and can communicate.
Fast forwarding to where we are now. I think Theta has established that healers can play an important role in HIV prevention and care. And, of course, it is not just about HIV, but it is a point of entry. As I said, maybe a project of this type would never have been funded if it hadn’t been for the desperation caused by HIV on all sides. But today, in the last three, four years, the role of healers can be explored even further. We no longer have just a prevention message and psychosocial and emotional support for people with HIV. We have more tools available, biomedical, technical tools, that are available to people living with HIV to prolong their lives, to improve their lives, to communicate with their peers in their community what they are going through. And, of course, the whole history has changed. Stigma is not the same issue it was twenty years ago. And in that, Theta has to rise to the challenge to bring this new knowledge to its core mission, which is to improve the quality of health care and the access to health care services to underserved communities through the establishment of cooperation between biomedical and traditional health practitioners. I think in the last three, four years that is what the Theta strategy has been directed at. Challenges, though, are not few.
Because of the advent of new therapies, there is an enormous focus on treatment, but it tends us to ignore the other part of the pie. The majority of people with HIV/AIDS today do not need ARVs, they are not eligible, and their immune systems are not down enough to qualify for ARVs. Those who benefit from ARVs still have many other needs in terms of psychosocial support, nutrition, and communication with their families and their communities. Very few people in this country has access to basic services to just know their status, and from there to know what to do, or how they might prevent mother to child transmission, or to access simple support services when they have HIV. In all of this, the traditional healer – and they form a sector in general– could play a very important role. And at the same time, without being exclusive, in involving traditional healers in supporting people on treatment. For example, we don’t know how people benefit or don’t benefit in using traditional medicine for stimulating the immune system. We could document how people with HIV can boost their immune systems using traditional medicine therapies. If there are many years before they need ARVs, this adds years to the quality of life. It is extremely important in terms of the spread of the epidemic.
Theta has focused on service delivery now for many years. It has not banked so much on the accumulation of evidence over the years. As a consequence, it lags in terms of competitiveness in the donor community, even though the work they have been doing is extremely significant, important, and unique in the region. So, they are facing the challenge of minimal funding and staff, and the need to document what they have been doing and produce the evidence, publish it, and gain creditability.
This is an organization that has reached its’ adolescence, and it is a tricky part of its life. The difficulty right now is to continue to respond to the demands of districts, healer groups, healer client groups - Theta’s activities with healers has expanded to many aspects of the care and support and treatment of people with HIVAIDS - and at the same time there is the need to document what they have been doing for the last 12 years.
Dr. Caitlin Mullin: What would you prioritize in terms of the documentation?
There are a number of aspects: documenting the training and the spreading of information, and documenting the effectiveness in terms of prevention. That is not an easy proposition; it is not easy to separate the healers from every thing else that have been done in their communities. You have to remember this is Uganda, and many activities have taken place over the years, not just TASO, many. That makes it the success story that it is, but at the same time, it makes it very difficult to ascribe the success to any particular intervention on its own.
The other aspect important to document is the clinical observation work regarding the effect of traditional medicine protocols on different conditions. So far, one paper was published on Herpes Zoraster; another paper on the effect of herbal medicine on skin rash, non-specific dermatitis which is effecting many people living with HIV and very debilitating. There is another study, which has been completed but not written up, on the effect of herbal medicine on malaria. There are some people from the institution I work for, University of California, who are interested in researching the interaction between HIV and herbal medicine. Another fascinating study using Theta’s protocol, is studying the effect of some herbal preparations on boosting the immune system.
The third aspect important to document is the work Theta has done on trying to support people living with HIV through the involvement of traditional healers. Healers find it extremely easy to organize clients who live with HIV into community groups working towards different enterprises, whether it is incoming generating activities such as farming, nutrition education, or drama groups to increase community awareness. They have even founded schools for AIDS orphans. There is a variety of these initiatives that have been taken up by the healers without being told, ‘you do this and you do that’. Theta was trying to empower healers that they could do a lot more for their communities than talk about HIVAIDS. They didn’t wait very long to take this up and there are a lot of community initiatives supported by healers. Many projects are thriving because of the commitment and personal involvement of the healers who are important persons in their communities. They may not be extraordinary in size, but impressively diverse and creative in terms of what these people do, and wholehearted in terms of their commitment and with not much monetary return. I think the healers have the capacity to galvanize people around a cause, which is not as straightforward when it comes from a doctor, even a Ugandan doctor.
So these three aspects of their work: 1) the prevention training work; 2) the research, the clinical observation and documentation on herbal medicine; 3) and the involvement of communities in mitigating the impact of HIVAIDS in providing psycho-social and in providing material support for people suffering from HIV, these three aspects, would go a very long way in showing what Theta has accomplished in these years. We do a major disservice to the community if this is not documented. Some documents have been written for UNAIDS, but not by Theta themselves.
It is a vicious circle being tied to funding, which commits Theta to continued service, and then, to take the time to write the papers. Finding its own identity, Theta has been imprinted by a number of people who were part of the founding, very heavy personalities. Now it is no longer that stage. I think it is important that I and the other people who were so instrumental in shaping the direction of Theta don’t have so much of a dictate on the direction of the organization at this time.
Traditional medicine is not documented in a way biomedical science will consider. If you document in the same way a traditional healer does, ‘see, this is my patient and he has been cured’, nobody accepts it. A very different rule of proof than biomedical science, but it doesn’t foster dialogue. The only way to foster dialogue with the biomedical community is to use their language. There is a lot of disconnect. People say working with traditional healers is important, but it doesn’t translate into much. It is really survival, survival of the luckiest, depending on contacts. The current trend into donor interests and traditional medicine is still very marginal.
I think I had no idea how much marginality still characterizes traditional medicine, especially African traditional medicine as opposed to complimentary medicine. I had the illusion we had made some inroads. There is still a lot of prejudice and misunderstanding about what a healer is, and they are not necessarily witches or sorcerers. It is self-perpetuated. You can’t much accuse the missionaries now, but Ugandans themselves. The Christian Ugandans are very much tainted by this ideology. And even the Theta staff, from childhood they have been told these guys are bad.
Addressing Caitlin: Have you read Some Spirits Heal, Others Just Dance, and ethnography on Zambian traditional medicine? He is part of the advisory committee on the Bridging the Gaps project.