Youth and HIV in Rakai, Uganda

In the mid-1980s, a strange illness seemed to spread like wildfire among people in southwestern Uganda. Researchers at nearby Makerere University, chiefly Drs. Nelson Sewankambo and David Serwadda, began investigating the illness, which they dubbed “slim disease” for its associated weight loss. They called Dr. Maria Wawer at PopFam to help them explore this new disease.
The illness would turn out to be AIDS, and these three researchers who began looking into the disease would go on to help create the Rakai Health Sciences Program (RHSP), now one of the largest and most influential research centers on HIV/AIDS in Africa. Today, the RHSP includes a 3,600-square-foot, state-of–the-art research facility which combines large-scale HIV surveillance, laboratory, and prevention research projects with the provision of health care and education.

According to PopFam Chair, Dr. John Santelli, principal investigator on two National Institutes of Health (NIH)-funded research projects in Rakai, including one in which PopFam Assistant Professor Sanyukta Mathur is co-principal investigator, the backbone and “the brilliance of the project,” stems from its development of a longitudinal community-based research study.
“Rakai is a fabulous research station which has always been at the forefront of HIV epidemiology and HIV intervention work,” Dr. Santelli said. “It is the population-based cohort that has enabled multiple research projects and the ability to track the progression of the [HIV] epidemic over time.”


Drs. Sanyukta Mathur, John Santelli, & Ying Wei.

Begun in 1994 and known as the Rakai Community Cohort Study or RCCS, the annual survey gathers information on HIV risk, sexual behavior, HIV and other STIs, demographics, and other topics. It is open to all individuals aged 15 to 49 in a 50-village area. In addition to carrying out this work, the RCCS has provided a rich data set for many other related investigations.

“The cohort is like a Christmas tree on which researchers hang multiple specific studies,” Dr. Santelli explained, adding that one could view PopFam’s two NIH-funded studies in Rakai, described below, as “two of the ornaments on that tree.”

The Missing Piece: Youth and HIV risk

Dr. Santelli’s involvement in Rakai grew out of an initial visit he made to Uganda in 2005, shortly after he joined Mailman. “Our colleague, Maria Wawer, started telling me about her work in Rakai and she invited me to come visit.” Dr. Wawer, who now holds a joint appointment between Mailman and the Johns Hopkins Bloomberg School of Public Health, had played an early and highly instrumental role in the development of the Rakai research program.

Dr. Santelli took her up on the offer, visiting Rakai during the opening of the program’s new headquarters. He was impressed with the scope and quality of the research underway, but he also saw an opportunity for research targeting youth.

“[Researchers at Rakai] had focused on all kinds of things related to HIV risk but they had not focused on youth per se,” he recalled. Uganda’s dramatic progress reducing HIV prevalence in the late 1980s and 1990s had recently leveled off and there were signs that new infections were increasing among young people.

Dr. Santelli also knew that use of the longitudinal cohort data would allow researchers to generate findings going beyond the scope of existing research. These studies, by and large, had looked at the prevalence of HIV infection within a population and did not shed any light on the incidence of new infections at different points in time. As a result, the information provided limited guidance for assessing risk or developing prevention strategies.

As a result of his visit, Dr. Santelli wrote a proposal to explore risk and incidence of HIV infection among young people in Rakai and received a $2.2 million, multi-year grant from NIH’s National Institute for Child Health and Human Development (NICHD). Over the past five years, he and his team have implemented this “Rakai Youth Project,” investigating a myriad of issues related to HIV and youth.

During the first phase of work, Dr. Santelli and colleagues examined the annual incidence of HIV infection among young people aged 15 to 24 in Rakai, along with risk and protective factors. The research revealed that risk factors went beyond expected behavioral and biological influences to include things like leaving school or a marriage. A subsequent and deeper analysis of trends in HIV acquisition looked at how changes in social and education policy and the advent of new treatment and prevention programs had affected the risk of infection. This research showed dramatic decreases in HIV acquisition among adolescent women and that this improvement was associated with delays in sexual initiation and increases in school enrollment.

The Rakai project, Dr. Santelli noted, took place during a critical period in Uganda’s history. “We take for granted universal access to primary and secondary education, but that didn’t exist in Uganda before 1997,” he said. This shift in policy, he asserted, has resulted in huge increases in the numbers of kids attending school in Uganda, something that Dr. Santelli’s research found lowered the risk of HIV infection.

“Kids who are in school are much less likely to be engaged in sexualrakai_tree.jpgrisk behaviors,” Dr. Santelli acknowledged, adding that the school environment itself seems to be protective. “When you walk on these campuses you see, on every building and every tree, that they are filled with motivational, aspirational, educational messages about HIV prevention, [but also] the importance of doing well in school and respecting parents…It all creates a social environment where kids have much more of a sense of the future.”

In addition to collecting data through its large research cohort, the RHSP has a smaller qualitative research arm which conducts life history interviews. PopFam Assistant Professor Sanyukta Mathur, also spotlighted in this issue, has managed the Rakai Youth Project since its inception and is a PI on Linkages. She worked with this team to further explore risk factors associated with recent HIV infection among young people. Key to the team's success has been inter-departmental collaborations at Mailman, particularly with Dr. Ying Wei, Associate Professor of Biostatistics and senior co-investigator on the research.

“We selected young people from the cohort who had recently acquired HIV, and their [HIV] negative counterparts,” Dr. Mathur explained. After matching them on a range of demographic characteristics, the researchers conducted in-person interviews in which they asked participants from both groups a set of questions focusing on life transitions and aspirations, relationship status, and behavioral risk for HIV.

“We wanted to compare the life transitions of HIV positive and HIV negative [young] people,” Dr. Mathur said. “You might have anticipated that those who acquired HIV would have had a fairly negative life trajectory [compared to those who did not], that maybe they’d had parents who died of AIDS or didn’t go to school,” she observed.

But the research showed something else: many young people in Rakai had experienced challenging life circumstances, such as the loss of a parent, dropping out of school, difficulty finding work, or early pregnancy. The main difference between the HIV positive and negative youth was the number, type, and quality of their sexual relationships.

“HIV positive young people found themselves in relationships with less power, less communication, less knowledge of their partners’ HIV status, and less awareness of the number of partners that their partner had—all things that put you at risk of HIV,” Dr. Mathur remarked.

An HIV-Prevalent Environment’s Effect On Desire To Have Children

Three years after Dr. Santelli and his team began working in Rakai, they developed a second research study, known as the Linkages project. Through this research they sought to understand how HIV and its risk had impacted people’s decisions about childbearing.

“Many young people in this part of Uganda are married and having children as teenagers; they are living in a place where [HIV] prevalence is six or eight percent, so it is a generalized epidemic in which transmission is primarily heterosexual,” Dr. Santelli explained.


A Rakai mother and her baby.

The five-year Linkages study has used quantitative and qualitative investigation to gather data from heterosexual couples in which one partner is HIV positive, or in which both partners are either HIV positive or negative, to examine issues related to HIV and childbearing. By looking at trends over time, the researchers have sought to learn how the advent of new prevention and treatment programs affected the decision to have children. Although this research is still being analyzed, findings to date demonstrate that “pregnancy and childbearing is a much more important issue [for many people] than is HIV,” Dr. Santelli explained, adding that fertility desire has increased with the advent of HIV treatment. “Reproduction is a very powerful impulse,” he said.

Research and Training for Mailman Students

In addition to serving as a site for valuable research projects, PopFam’s work in Rakai and collaboration with the RHSP has resulted in a wealth of new practicum opportunities for Mailman students. PopFam student Laura Lazar ’15, who is featured in this issue, was one of five Mailman students who participated in studies underway at the research station last summer during their practica.

According to Dr. Santelli, these opportunities were a natural outgrowth of the faculty’s engagement in Rakai and of PopFam’s mission. “We value community-based research and service projects in general in the Department, and we understand that these projects can become great training opportunities for our students,” he affirmed. “So this is a deliberative part of our program model, and like all of our work in Rakai, it has been very rewarding.”