Social pressure keeps African AIDS patients in treatment

One of the surprises of the global AIDS epidemic has been the high level of adherence to antiretroviral drug treatment in sub-Saharan Africa, whose impoverished population is so beset with treatment hurdles that authorities once believed that there was little chance patients there would be able to stick to complex drug regimens.

Harvard researchers examining the response to the disease in Nigeria, Tanzania, and Uganda say that patients there are drawing on one resource they have in abundance to help them adhere to AIDS drug plans: their relationships with other people, or “social capital.” That reliance on friends and relatives, in turn, incurs a social obligation on the part of the patients to get well, creating a powerful feedback loop ensuring their adherence to their drug regimen.

“If he is sick, I have to help him so he will be OK,” one patient-helper told interviewers, according to the researchers’ published report on the study. “That’s why I insist, ‘My relative, don’t ignore what they instruct you to do. If they tell you to take [antiretroviral therapy] in the morning and evening – Do it! Don’t feel it is difficult work and don’t feel tired.’”

The lengths to which HIV-infected patients go to make their doctor appointments and take their antiretroviral drugs were also highlighted in the study, published in January in the journal PLoS Medicine. Patients described how they put their AIDS treatment first in their lives, begging or borrowing money for transportation, working in neighbors’ fields, forgoing important spending such as school fees and even food for their children to get to the clinic. And, when short on food themselves, they take their drugs anyway, despite the nausea, dizziness, and weakness the powerful medications can cause taken alone.

The ongoing work is led by Norma Ware, associate professor of social medicine and associate professor of psychiatry at Harvard Medical School. Ware and colleagues from the Harvard School of Public Health, Massachusetts General Hospital, the Harvard Initiative for Global Health, Jos University in Nigeria, Muhimbili University in Tanzania, and Mbarara University in Uganda, conducted 414 interviews of AIDS patients, their treatment partners, and health care professionals.

“One of the most important findings is the fact that this analysis sheds light on the importance of social context on adherence,” Ware said. “It shows that the people in Africa are doing a fine job coming up with treatment support models that function in their context. It’s important to build on these and support them, rather than always thinking everything should be imported.”

The study, which started in 2005 and which was funded by the Harvard University Program on AIDS and the National Institutes of Health, consisted of lengthy, open-ended interviews to allow those being interviewed to tell their stories freely rather than responding to set questions. Ware indicated that the qualitative rather than quantitative approach gives researchers the chance to come across unexpected findings.

The research was inspired by drug treatment adherence rates in sub-Saharan Africa that are greater than 90 percent, higher than levels observed in North America. The work reflects the success of the use of adherence facilitators in poor settings. These helpers support patients in a variety of ways. Some are community health workers who visit patients in their homes, delivering medication and providing support, and others are treatment supporters — often family members or friends — who live closely with patients and remind them to take their drugs.

Ware said the underlying culture in sub-Saharan Africa, which values extended family relationships, is an important factor in setting the stage for the success of adherence facilitator programs and of antiretroviral drug treatment.

“Relationships are critical resources in coping with poverty. They are a plentiful resource in a resource-poor environment,” Ware said during a recent presentation on her work at the Harvard University Center for AIDS Research’s 9th Annual Symposium on June 24.

Ware said work on related subjects continues at the three study sites: Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda. The research team is examining retention, or how well patients continue to make their physician and clinic visits, and plans to also examine the role of social capital in prevention of HIV infection.