History of the Rakai Health Sciences Program
Submitted by administrator on Tue, 11/23/2010 - 12:06
The Early days:
The RHSP is currently one of the largest and oldest community-based research endeavours on HIV/AIDS, associated infections and reproductive health, in Africa. The program which until 2004 was known as the Rakai project is currently conducting HIV prevention studies, basic and clinical laboratory research, and operations research/evaluation to develop improved strategies of service delivery.
However the idea for what become the Rakai Health Sciences Program originated in about 1985 among Ugandan researchers at Makerere University, principally Drs. Nelson Ssewankambo and David Serwadda. They were among the first medical researchers to recognize the spread of HIV in Uganda, and in 1985 had published, in collaboration with a number of colleagues, the first paper on “Slim disease” in the country (Serwadda, Mugerwa, Ssewankambo et al. Lancet, 1985). In particular, they were struck with the severity of the epidemic in Rakai District in the south-western part of the country. They also recognized that there was a lack of reliable information on the rates of HIV in Rakai and on the ways in which the infection was spreading in this rural area. Without such data, it was very difficult to plan good prevention programs or to provide basic services for infected individuals and for their families. With encouragement from the Uganda AIDS Control Programme and the US CDC in Uganda, they set about to identify resources to initiate community level HIV studies, a process that would take some years. Uganda, it should be remembered, had been in a state of civil war for most of the past 7 years, a situation which did not encourage major investments in research and public health. Finally, in 1986, the war came to an end with the success of the Resistance Movement under General Yoweri Museveni who became President that same year.
In August, 1987, Dr. Maria Wawer was asked by Columbia University to visit Uganda. The goal of the trip was to determine the feasibility and advisability of using a modest sum of USAID funds, left unexpended at Columbia from a contract which was about to end, to conduct a small HIV/AIDS project with “some Ugandan doctors” who had been submitting proposals to various funding agencies for over two years. With Maria in tow, Nelson and David organized a trip to Rakai District. Rakai was where they and their colleagues had first identified HIV/AIDS in Uganda, known locally as “Slim disease” because of its associated weight loss. Although Nelson and David were trained as Clinicians (they subsequently received masters degrees in Clinical epidemiology/public health; Nelson from MCMaster University in Canada, David from John Hopkins), they were convinced that tracking the rates of and trends in HIV prevalence and HIV incidence would require a community-based approach.
What David and Nelson wanted was a community cohort study, in which individuals living in selected communities would be reinterviewed and provide blood for HIV testing on an annual basis. Getting data on the whole community would help in determining which groups of people were most at risk, how they were distributed in the population of Rakai, the types and prevalence of risk factors, population-level rates of HIV (crucial in projecting health and prevention needs), mortality and health status of HIV-uninfected persons, and the effects of HIV on families and the entire community.
The Milano South View Inn.
The initial survey team consisted of 6 household census takers/interviewers, on lab tech and the driver. Since there was insufficient room at any of the battered health centers in Rakai to accommodate the survey team, the Rakai Project rented a few rooms in Kyotera Town, at the Milano Inn, then a typical bar-girl hotel. The team spun blood samples with a hand centrifuge at night, under a single 40 watt light bulb dangling from the ceiling (on those lucky days when there was electricity). Latrines and two sinks in the courtyard were the extent of the facilities, other than the bar itself, which served very little in the early years. Beer (seldom cool-please refer to “electricity” above) became available around 1990. Bedrooms were small and many were windowless. However, the inn’s staff somehow managed to keep the premises and the linens clean and the noise level down, and they were both pleasant and supportive.
Working together, Nelson, David and Maria developed a proposal for a pilot study which was submitted, via Columbia University, to United States Agency for International Development (USAID). Columbia had some unexpended USAID funds from a contract which was ending and was given permission to utilize these monies for the Rakai Study.
In 1988, what had been coined the “Rakai Project” by David initiated the first community cohort, which would lay the foundation for all future Rakai Project research. In the cohort study (which initially included 21 villages and was subsequently, with funding from the US National Institutes of Health (NIH) expanded to 31 villages), all consenting residents aged 13-59 were visited in the home once a year, were interviewed and were asked to provide a blood sample. The information, collected on 1,280 participants in the initial survey round, provided the first comprehensive snapshot of the extent of the HIV epidemic in Rakai. About a third of adults living in trading centers on main roads had HIV, compared to 22% of adults in smaller trading villages on secondary roads and 10% of residents in rural villages further from the roads. Because the proportion of persons infected with HIV was so much higher along the main roads, having even one sexual partner in the latter village conferred as much of a risk of HIV acquisition as having three or more partners in a rural area.
Still moving on:
There is also great satisfaction in knowing that Rakai has contributed to the global effort in the fight against HIV/AIDS. Rakai data o the viral dynamics of HIV, epidemiological and behavioral trends, interactions between HIV and sexually transmitted infections (STIs), HIV effects on pregnancy and fertility, and social and demographic consequences of the epidemic have affected global policies on HIV control and care. Very importantly, RHSP studies on HIV prevention, ranging from assessment of the effects of ABC, to testing field trials have contributed to shaping the fight against HIV. The recent Rakai finding that male circumcision reduces the risk of heterosexual HIV acquisition by about half in men, along with similar results in two other trials in Kenya and South Africa, has provided proof of the effectiveness of the first new prevention strategy to be developed in over a decade. Male circumcision has the potential to change the HIV/AIDS paradigm in many regions, particularly in East and Southern Africa.
When it comes to the Rakai communities in which we work, it is not up to us to proud. Rather, the population of Rakai should be commended for its strong collaboration and the way it has helped to shape the Program’s research and services. The community’s ongoing dialogue with the Program whether through the community Advisory Board, the District Medical Services, Local Community representatives, village leaders or town hall meetings attended by all – provide the RHSP with valuable feedback as to what is and is on considered important in improving health and wellbeing, and how it should be executed.
The way forward:
To coordinate these efforts and provide better support and services to the wide growing population in Rakai district and neighboring districts a new Rakai Health Sciences Center was opened in May 2005, to provide a world-class environment to conduct cutting edge science- in the middle of rural Africa. We salute the RHSP staffs who have managed to keep the enterprise rolling even during times of electrical, fuel and water shortages, and providing that investments in resource poor regions can succeed.
With the support of the Presidents Emergency Plan for AIDS Response (PEPFAR) through the Uganda-CDC program, the RHSP has been able to initiate HIV antiretroviral therapy (ART) in Rakai, and are currently providing this service to almost 900 persons. In addition, all HIV+ persons have been provided with drugs, bed nets and clean water facilities to prevent opportunistic infections. We are grateful to have this opportunity. However, we still have much to learn regarding the most cost-effective and clinically appropriate ways of managing and sustaining large treatment programs in rural resource poor settings. In additional, unless we become ever more successful in preventing HIV acquisition, no treatment program will be sustainable in the long run. RHSP has also initiated studies on development and disabilities in infants and children affected by or infected with HIV. With the advent of ART such children have the opportunity to live long lives.
In the past years, the RHSP has become more involved in research on Malaria, TB, STIs and other infections which affect a large proportion of the Rakai population, whether or not they have HIV. We are committed to providing training opportunities and careers paths for RHSP employees, interns and field work placements. We also have innovative training programs, such as the “sandwich PhD” in which doctoral students at Makerere University take and receive credit for specialized course.
Despite these many changes, the RHSP remains committed to those that led to its establishment as the Rakai project, in 1987. This is built on a deep commitment to and appreciation of the importance of working with communities in the battle against HIV and other infectious and reproductive health problems facing Africa. Disease control and prevention cannot be accomplished unless communities are fully involved in making a change. In addition, clinical and laboratory studies are much more meaningful if their findings can be interpreted within the Social, behavioral and demographic context of the people affected by health conditions. The building blocks of the RHSP are thus the villages of Rakai district, which have worked with the program since the very beginning and have helped to shape it into what it is today.
