{"id":911,"date":"2011-06-29T15:14:24","date_gmt":"2011-06-29T19:14:24","guid":{"rendered":"http:\/\/artsci.case.edu\/magazine\/?p=911"},"modified":"2017-02-09T12:01:03","modified_gmt":"2017-02-09T17:01:03","slug":"at-the-epicenter-of-the-epidemic","status":"publish","type":"post","link":"https:\/\/artsci.case.edu\/magazine\/2011\/at-the-epicenter-of-the-epidemic\/","title":{"rendered":"At the Epicenter of the Epidemic"},"content":{"rendered":"
\"The

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.<\/p><\/div>\n

When Janet McGrath<\/strong> 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. \u201cThere was no Ugandan who did not know someone with HIV,\u201d she recalls.<\/p>\n

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.<\/p>\n

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\u2019 ability to obtain medical care and adhere to treatment.<\/p>\n

McGrath\u2019s 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.<\/p>\n

Understanding the Complexities<\/h3>\n

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\u2014a 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.<\/p>\n

The success and longevity of the Uganda project are due in large part to Robbins\u2019 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.<\/p>\n

Two facts about HIV led to this recognition. \u201cFirst, the virus is transmitted primarily through sexual relationships, which are complex social phenomena,\u201d McGrath explains. \u201cSecond, 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.\u201d<\/p>\n

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<\/strong> (GRS \u201997) is a professor of sociology and anthropology at Makerere University in Kampala, Uganda\u2019s capital city. David Kaawa-Mafigiri <\/strong>(GRS \u201907) is a lecturer in Makerere\u2019s Department of Social Work and Social Administration.<\/p>\n

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\u2019s 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.<\/p>\n

The Global Partnership grants require that \u201cat least half of the resources go to training local investigators to conduct social science research,\u201d 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.<\/p>\n

McGrath was motivated to launch CeSSRA because she recognized that social scientists at Makerere were actively engaged in research on the country\u2019s AIDS epidemic. \u201cI knew there would be great interest in building a program there and keeping it going,\u201d she says.<\/p>\n

Despite All Obstacles<\/h3>\n

At one time, AIDS treatment consisted of daily \u201ccocktails\u201d 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.<\/p>\n

\u201cAdherence is essential to the outcome,\u201d McGrath says. \u201cFailure 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.\u201d<\/p>\n

CeSSRA\u2019s 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.<\/p>\n

\u201cIn Uganda, as in all underserved areas of the world, people face physical and social challenges not even considered in the affluent U.S.,\u201d 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.<\/p>\n

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. \u201cThat has opportunity costs,\u201d McGrath says. \u201cThat is a day that he or she has not sold any bananas\u2014which is a hit to the family income.\u201d<\/p>\n

Given the distances they may travel, patients are at the mercy of fuel prices\u2014and so is the study. \u201cBetween 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,\u201d McGrath says, shaking her head.<\/p>\n

Once patients obtain their medications, they need a place at home to keep them. \u201cAlthough the drugs do not usually need to be refrigerated, there may be privacy issues\u2014the patient may not want everyone in the house to know,\u201d McGrath explains. \u201cWhen one interviewer visited a participant at home, someone walked in unexpectedly, causing the participant to say quietly, \u2018I can\u2019t talk to you now. You have to go.\u2019\u201d<\/p>\n

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.\u00a0 But many households have no access to safe water, and obtaining quality food is a growing challenge\u2014\u201cespecially in urban areas, where it must be trucked in, and where rising fuel costs translate into rising costs for food.\u201d Nor is it easy for patients to obtain the vitamins that doctors recommend. \u201cThere isn\u2019t a Walgreens on every corner, and vitamins are not included in assistance programs.\u201d<\/p>\n

Despite these problems, however, adherence is high. \u201cThe patients value the meds,\u201d McGrath says. \u201cThe meds saved their lives; they feel and look much healthier. So, despite all obstacles, they work very hard to stay on them.\u201d<\/p>\n

At the Forefront<\/h3>\n

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.<\/p>\n

\"CeSSRA

CeSSRA conducts workshops on ethnographic research methods for students at Makerere University. Photo by Lawrence Greksa.<\/p><\/div>\n

To bring about such changes, HIV prevention programs must take account of people\u2019s attitudes and beliefs about sexual relationships. \u201cIn Uganda, like anywhere else, sex is part of an intimate relationship between human beings,\u201d McGrath says. \u201cSome people take the view, \u2018I love this person; I trust this person. I don\u2019t use a condom with someone I love and trust. That\u2019s only for people you don\u2019t know or trust.\u2019\u201d For this reason, merely distributing condoms is not an effective prevention strategy.<\/p>\n

Despite their success in combating HIV, Ugandans are concerned that the decline in infection rates may be reversed if people take it for granted. \u201cTwo decades ago, everybody knew people who were dying: People with AIDS had a very public death because of their emaciated and sickly appearance,\u201d McGrath says. \u201cBut because the drugs are so effective, the younger generation today does not experience that. Today, people who are HIV-positive look healthy.\u201d<\/p>\n

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. \u201c\u2018Treatment as Prevention\u2019 is the slogan,\u201d McGrath says.<\/p>\n

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.<\/p>\n

McGrath is confident in the center\u2019s ability to pursue its mission. \u201cThe social sciences are vibrant at Makerere University,\u201d she notes. \u201cI\u2019m 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.\u201d<\/p>\n

Science journalist Trudy E. Bell was a Presidential Fellow in Spring 2012, leading the SAGES seminar \u201cTruth and Consequences: Science, Media, and Public Policy.\u201d<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

When Janet McGrath<\/strong> 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. …Read more.<\/a><\/p>\n","protected":false},"author":97,"featured_media":933,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[15],"tags":[],"acf":[],"jetpack_featured_media_url":"https:\/\/artscimedia.case.edu\/wp-content\/uploads\/sites\/147\/2011\/06\/14215746\/2682_thumbnail.jpg","_links":{"self":[{"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/posts\/911"}],"collection":[{"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/users\/97"}],"replies":[{"embeddable":true,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/comments?post=911"}],"version-history":[{"count":7,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/posts\/911\/revisions"}],"predecessor-version":[{"id":1902,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/posts\/911\/revisions\/1902"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/media\/933"}],"wp:attachment":[{"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/media?parent=911"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/categories?post=911"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/artsci.case.edu\/magazine\/wp-json\/wp\/v2\/tags?post=911"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}