The Center for Social Science Research on AIDS (CeSSRA) is the result of a collaboration between Janet McGrath of Case Western Reserve University and two Ugandan anthropologists, Charles Rwabukwali (left) and David Kaawa-Mafigiri, at Makerere University in Kampala. Photo by Mike Sands.
When Janet McGrath traveled to Uganda in 1988 to take part in an HIV/AIDS research project, the east African nation was an epicenter of the epidemic. Among some segments of the population, prevalence rates had reached 30 percent. “There was no Ugandan who did not know someone with HIV,” she recalls.
Twenty-three years later, the situation has improved dramatically. Infection rates among some groups have declined by two-thirds since the late 1980s. Thanks to the increased availability of antiretroviral drugs, mortality rates among AIDS patients are a fraction of what they were just five years ago.
But the work is not finished. And social scientists, including McGrath and her colleagues, continue to play a critical role in fighting the epidemic. Their research into social practices and cultural beliefs helps public health officials design effective HIV prevention campaigns. It also provides insights into social conditions affecting patients’ ability to obtain medical care and adhere to treatment.
McGrath’s contributions go even further. With funding from the National Institutes of Health (NIH), she is helping to increase the capacity of Ugandan social scientists to carry out this vital research.
McGrath first went to Uganda as a member of a team led by Dr. Frederick C. Robbins of the CWRU School of Medicine. Robbins, who died in 2003, had shared the 1954 Nobel Prize for Medicine and Physiology for developing a technique for growing poliovirus in a test tube—a breakthrough that made possible the creation of the polio vaccine. More than 30 years later, as the recipient of an International Collaboration for AIDS Research grant from NIH, he was mounting a very different effort against another deadly virus.
The success and longevity of the Uganda project are due in large part to Robbins’ leadership and vision, McGrath says. He recognized the need for cross-disciplinary approaches, combining health sciences and social sciences, to understand the complexities of HIV infection.
Two facts about HIV led to this recognition. “First, the virus is transmitted primarily through sexual relationships, which are complex social phenomena,” McGrath explains. “Second, as health care providers working in underserved populations are keenly aware, HIV infection and subsequent treatment touch on all aspects of daily life, with far-reaching impacts on the lives of those infected.”
Over the years, McGrath has worked with Ugandan colleagues on several HIV/AIDS research projects. Her two principal collaborators both received doctoral degrees in anthropology at CWRU. Charles Rwabukwali (GRS ’97) is a professor of sociology and anthropology at Makerere University in Kampala, Uganda’s capital city. David Kaawa-Mafigiri (GRS ’07) is a lecturer in Makerere’s Department of Social Work and Social Administration.
Today, McGrath and Rwabukwali co-direct the Center for Social Science Research on AIDS (CeSSRA) at Makerere, and Kaawa-Mafigiri serves as associate director. Founded in 2007, the center is funded by NIH’s Global Partnerships for Social Science AIDS Research initiative, which fosters collaborations between American researchers and colleagues in other countries where there is a high incidence of HIV/AIDS.
The Global Partnership grants require that “at least half of the resources go to training local investigators to conduct social science research,” McGrath notes. Thus far, CeSSRA has trained and mentored 18 Ugandan social scientists, mostly students at Makerere. The center also convenes campus-wide workshops on social science methods.
McGrath was motivated to launch CeSSRA because she recognized that social scientists at Makerere were actively engaged in research on the country’s AIDS epidemic. “I knew there would be great interest in building a program there and keeping it going,” she says.
At one time, AIDS treatment consisted of daily “cocktails” of several different drugs. Although regimens have been greatly simplified in recent years, patients still require ongoing monitoring of their health. And once they are put on antiretroviral medications, they must take them for the rest of their lives.
“Adherence is essential to the outcome,” McGrath says. “Failure to adhere is damaging not only to the health of the individual, but also to the health of the society, since it can give rise to drug-resistant viruses.”
CeSSRA’s research examines how patients manage the day-to-day challenges of staying on antiretroviral medications. The center is following 950 adults currently on such medications to gain an in-depth understanding of their experience receiving care. The study population is evenly divided between men and women and between urban and rural residents. Participants are interviewed four times over a period of two years to document the obstacles they face.
“In Uganda, as in all underserved areas of the world, people face physical and social challenges not even considered in the affluent U.S.,” McGrath says. For example, although the medications are available at low or no cost, patients may travel great distances every two to three months to obtain them.
Imagine a roadside fruit vendor traveling two hours each way between home and clinic. Then consider the time the vendor may spend at the clinic itself. “That has opportunity costs,” McGrath says. “That is a day that he or she has not sold any bananas—which is a hit to the family income.”
Given the distances they may travel, patients are at the mercy of fuel prices—and so is the study. “Between June 1 and August 1 this year, the price of gasoline shot up so high that participants were not coming in to be interviewed because the amount of money we give them for transportation was not sufficient to pay the actual costs,” McGrath says, shaking her head.
Once patients obtain their medications, they need a place at home to keep them. “Although the drugs do not usually need to be refrigerated, there may be privacy issues—the patient may not want everyone in the house to know,” McGrath explains. “When one interviewer visited a participant at home, someone walked in unexpectedly, causing the participant to say quietly, ‘I can’t talk to you now. You have to go.’”
The researchers have discovered other obstacles as well, McGrath notes. Patients need clean drinking water to swallow the pills, and they are told to take some medications with food. But many households have no access to safe water, and obtaining quality food is a growing challenge—“especially in urban areas, where it must be trucked in, and where rising fuel costs translate into rising costs for food.” Nor is it easy for patients to obtain the vitamins that doctors recommend. “There isn’t a Walgreens on every corner, and vitamins are not included in assistance programs.”
Despite these problems, however, adherence is high. “The patients value the meds,” McGrath says. “The meds saved their lives; they feel and look much healthier. So, despite all obstacles, they work very hard to stay on them.”
Along with advances in treating AIDS, Uganda has made great progress in reducing rates of HIV infection. Although the reasons for this decline are much debated, McGrath believes it is probably due to a combination of factors, including changes in sexual behavior.
CeSSRA conducts workshops on ethnographic research methods for students at Makerere University. Photo by Lawrence Greksa.
To bring about such changes, HIV prevention programs must take account of people’s attitudes and beliefs about sexual relationships. “In Uganda, like anywhere else, sex is part of an intimate relationship between human beings,” McGrath says. “Some people take the view, ‘I love this person; I trust this person. I don’t use a condom with someone I love and trust. That’s only for people you don’t know or trust.’” For this reason, merely distributing condoms is not an effective prevention strategy.
Despite their success in combating HIV, Ugandans are concerned that the decline in infection rates may be reversed if people take it for granted. “Two decades ago, everybody knew people who were dying: People with AIDS had a very public death because of their emaciated and sickly appearance,” McGrath says. “But because the drugs are so effective, the younger generation today does not experience that. Today, people who are HIV-positive look healthy.”
McGrath points to one strategy for avoiding a resurgence of the epidemic. Recent data indicate that if patients receive treatment early in their infection, their viral loads can be decreased to very low levels, thus decreasing transmission. “‘Treatment as Prevention’ is the slogan,” McGrath says.
Unfortunately, her team has found that there is commonly a delay between receiving an HIV test and seeking care. People might know they are HIV-positive but postpone treatment until they develop symptoms that interfere with daily living. Moving forward, the CeSSRA team has a keen interest in expanding its research to further understand the complexities of living with HIV, with the ultimate goal of improving outcomes for all HIV-infected persons.
McGrath is confident in the center’s ability to pursue its mission. “The social sciences are vibrant at Makerere University,” she notes. “I’m just one person on a very large team, all the rest of whom are Ugandan. CeSSRA is a truly collaborative effort between Case Western Reserve and Makerere University to help understand HIV in society.”
Science journalist Trudy E. Bell was a Presidential Fellow in Spring 2012, leading the SAGES seminar “Truth and Consequences: Science, Media, and Public Policy.”