No car to drive to the clinic? No money for a taxi? No food to eat? No matter. People living with HIV/AIDS in sub-Saharan Africa overcome daunting challenges to take their antiretroviral therapy as prescribed.
The question is why. Why are people who have so many hurdles to clear able to take between 94 and 96 percent of their doses while people in North America take only 70 percent?
New work by HMS researchers explains that these patients assign top priority to HIV treatment. They do so out of commitment to the friends and family who help them, not just to stay healthy themselves. Staying well preserves good will so these critical resources will continue to help in the future. This explanation, described in the January PLoS Medicine, may point to new ways of sustaining the success seen in many HIV treatment programs in sub-Saharan Africa.
Surprise StudyA small study of adherence rates in Uganda in 2004 provided some of the first evidence of high antiretroviral therapy (ART) adherence rates in impoverished regions of Africa. “We were pleasantly shocked,” said David Bangsberg, HMS lecturer on medicine at Massachusetts General Hospital and the Harvard Initiative for Global Health. “It was the highest level of adherence ever reported.”
Follow-up studies plus a meta-analysis in The Journal of the American Medical Association in 2006 confirmed that patients have exceptional adherence rates in these poorer regions. The findings helped squelch concern that low adherence would lead to the spread of a drug-resistant virus.
But they did not explain why adherence rates were so high. To try and answer that question, the PLoS paper’s primary author, Norma Ware, HMS associate professor of global health and social medicine, carried out an ethnographic study of ART patients in the sub-Sahara.
Ethnography is an investigative tool used in anthropology to study unfamiliar cultures. The point of this ethnography, said Bangsberg, who is also a co-author on the PLoS study, “is to go in there without expectations to understand what the meaning is of taking medications.” Such an approach made sense given that ART adherence in Africa had defied expectations.
To understand the study’s design, it helps to first understand how ART has evolved in Africa in recent years. In 2003, the United States funded the U.S. President’s Emergency Plan for AIDS Relief. This program has scaled up ART availability by infusing $18 billion to provide free therapy to more than two million people in Africa and other impoverished regions. HSPH receives some of this funding to carry out the program in Nigeria, Tanzania, and Botswana.
Though free drugs made things easier for patients, the barriers for many Africans remained high. In response, African clinics started to “scale out” by devising new ways to bring medicines closer to the people who need them, said Ware.
Some programs also implemented a form of peer support. Each patient receiving ART designates a “treatment partner,” a close friend or relative who agrees to help the patient take his or her medication regularly. The partner expects the patient to comply and also does whatever he or she can to help the patient. Examples include helping the patient find money for transport or preventing the patient from becoming isolated by stigma.
While these adaptations focus on lowering the barriers to adherence, “we don’t know a whole lot about the factors that influence success,” said University of Connecticut psychologist and HIV/AIDS behavior researcher Seth Kalichman. “The right approach for understanding that is an open and ethnographic approach. Its findings can help inform interventions.”
Life LinesTo complete her ethnography, which received seed-funding from the Harvard University Program on AIDS, Ware collaborated with medical centers in Nigeria, Tanzania, and Uganda and worked with African investigators to interview and observe 158 patients, 45 treatment partners, and 49 health care workers. Interviewers collected stories by asking subjects to describe their most recent dose taken or missed, their clinic visits, and the treatment help they gave or received. Observations of clinic visits helped corroborate these stories.
Ware then systematically analyzed these interviews to extract and categorize behavioral strategies. She did this by first asking how. How do people manage to take their medication? Among these varied stories, Ware detected a general strategy—what she termed an “uber-category”—of prioritization. People use strategies such as begging, borrowing, and doing without as ways of keeping clinic appointments and prioritizing their medication, she said.
The next question Ware asked is why. Why prioritize ART over necessities, even necessities such as food? The interviews and observations suggest an answer. In addition to wanting to stay well, “people prioritize their health in order not to damage their relationships,” said Ware. “There’s a whole set of relationships of mutual obligation that are stronger there than they are here. They are stronger there because that’s what people rely on for survival. Because people live that close to the line.”
This reasoning explains why people adhere to their prescriptions even when they are desperate, depressed, or hungry. “In Africa,” wrote Agnes Binagwaho, permanent secretary for the Ministry of Health in Rwanda, in a PLoS perspectives column, “taking prescribed ART is a community effort.”
The work opens the door to new studies that will help public health researchers design programs that not only boost adherence but also maintain it. “Understanding the importance of treatment partners led us to hypothesize that people might become lost from care if they don’t have that kind of support,” said Ware.
This is particularly important because Ware’s study, as with most adherence studies to date, focused on people who have been taking ART for less than a year. During this time, patients experience dramatic health improvements and have not yet developed long-term side effects. As treatment extends over years and into decades, sustaining adherence becomes more challenging.
Ware’s findings suggest that treatment partners and, more broadly, community obligations, may point to valuable social tools that can help promote and maintain high adherence. One question to ask next is how much, said Bangsberg. How much does each different social lever contribute to adherence? Figuring out which interventions are most critical will help programs decide how best to invest their resources.
Students may contact Norma Ware at norma_ware@hms.harvard.edu for more information.
Conflict Disclosure: The authors report no conflicts of interest.
Funding Sources: The Harvard University Program on AIDS and the National Institute of Mental Health
