by Amy Zhou
Donor funding for HIV/AIDS has given many patients in poor countries access to lifesaving treatment. The availability of antiretroviral therapy (ART) has turned HIV from a death sentence into a manageable chronic condition. And the benefits don’t stop there. The World Health Organization, donors, NGOs, and AIDS activists are now promoting the use of treatment for preventative purposes. By placing more patients on treatment, the HIV virus can be suppressed, and therefore those living with HIV have a much lower chance of transmitting the virus to other people. Now, ART is not only used to treat those with HIV, but also to slow the spread of the epidemic. From the perspective of policymakers, there are many benefits to preventative therapies. But how do women patients feel about these new prescriptions for lifelong HIV treatment?
Responses of women from Malawi—a small country in sub-Saharan Africa—are revealing. In 2011, Malawi took the first step toward the “treatment as prevention” approach, adopting a policy that focused on women. This new policy for the prevention of mother-to-child transmission of HIV, called Option B+, would place pregnant and breastfeeding women on lifelong ART as soon as they are tested positive. Starting treatment early reduces the risk of HIV transmission to the child and has long-term health benefits for women. Option B+ also made it easier to provide treatment to patients. Previous policies placed women on ART while they were pregnant and breastfeeding, but would stop treatment afterwards if their immunity levels or disease progression did not qualify them to continue onto lifelong treatment. This became a redundant process. With an average fertility rate of about 6 births per woman, many women would start and stop ART and soon start again with the next pregnancy (Schouten et al. 2011). The new policy thus streamlined the treatment provision process.
However, amidst the global enthusiasm for Option B+, it seemed that women were ambivalent about treatment. Tracking clinic attendance across Malawi, Lyson Tenthani and other researchers found that about 20% of women who started ART through Option B+ were “lost to follow-up” – i.e. they did not return to the clinic for 60 days or more (Tenthani et al. 2014). This lost to follow-up rate was 5 times higher than women who started treatment for their own health. Why, despite increased access to ART, did women refuse or stop taking treatment?
Part of my dissertation research examined this puzzle. I wanted to understand treatment decisions from women’s point of view, and how broader social and economic forces shape their decision-making process (Zhou 2016). I learned from public health research that there are many possible barriers that can make it difficult for women to access treatment, such as stigma, lack of support from husbands, no transport to the clinic, and insufficient knowledge of HIV and ART. But these barriers could not explain why so many more women stopped treatment after Option B+. It was also difficult to know which barriers were more or less salient for women’s treatment decisions. I drew from research in medical sociology that focused on describing how patients assessed the efficacy of treatment through their own experiences with illness and drug-taking. With the help of a research assistant, I interviewed 65 HIV-positive women who started treatment through Option B+. In order to capture a range of experiences, I included 29 women who started and stayed on ART, 10 who initially refused, and 26 who started but stopped for some time.
Women were automatically tested for HIV when they came to the clinic for their pregnancy. Many were surprised to find out that they were HIV positive. With Option B+, women would be tested, undergo counseling, and start treatment on the same day. All of this could feel overwhelming. A young woman, for instance, found herself wondering: “should I live a life of medicines?” She explained to us that she was only 19 years old and pregnant with her first child. While she understood the benefits of ART, it was hard to imagine still taking this medicine 10 years (and more) into the future. She wondered what ART would do and how she would feel after so many years of treatment. Moreover, most women came to the clinic feeling healthy; they did not see any symptoms that would normally warrant taking medicine. For healthcare providers, a positive HIV test clearly shows that a patient needs to start ART. But for women, there was a lot of uncertainty surrounding treatment – they physically felt fine, and they did not know how treatment would fit into their lives years and decades in the future.
I found that treatment needed to make sense in light of women’s life circumstances. And it did for some women. They felt their health improved after starting ART. Previous illnesses like malaria and colds occurred less frequently, and they generally felt stronger and more capable of work. Improved health also had economic benefits. Work in Malawi often includes physical labor. Women did farming, sold items at the market, did piecework (which includes informal jobs, such as working in another family’s house or garden), and a few ran small businesses. Feeling healthier after taking treatment meant that women were able to work and make more income for themselves and their family.
For other women, however, treatment made their lives more difficult. Side effects made them feel worse than before. The vomiting, dizziness, and nightmares that often come in the first months of taking ART seemed to be signs that they were becoming sicker after treatment. Women felt confused and were unsure if the drug was working properly. These side effects also hindered their ability to work and make a living. Women felt too sick to do their household tasks, farm, ride their bicycle to work, travel to the market, run their business, and so forth. In addition, for a few women, taking treatment had a negative impact on their marriage. Some of their husbands did not support taking treatment, and would throw away pills or threaten to divorce. These tense situations at home put some women in a difficult position of choosing to stay in a marriage or risk divorce by continuing treatment.
I learned that it is important to contextualize women’s treatment decisions within their broader social and economic circumstances. Women refused or stopped treatment not because they lacked knowledge of HIV, were difficult patients, or believed in cultural or religious myths about the disease. Almost all of the women I interviewed received extensive counseling, and knew that taking ART would help prevent transmission of HIV to their child and would be good for their own health. And as mothers, they were very concerned for their children’s health. But for some women, treatment side effects, the inability to properly work, and marital problems were too much to handle. Women lived in a context of poverty and uncertainty. Malawi is one of the poorest countries in the world, with more than half of the population living on less than the global poverty line of US$1.25 a day (UNDP 2014). In these conditions, it could be difficult to take treatment for preventative purposes, especially if it meant several months of side effects. Each day of income mattered – women could not easily afford to be sick and not work.
There was also a disconnect between how we in the global North saw treatment and how women in Malawi actually experienced it. It was much easier for international agencies and researchers like myself to focus on the future benefits of treatment. Research showed the health benefits of starting treatment early, and we could imagine a future HIV-free generation if women started and stayed on treatment. But this was a privileged position to take. For the women I talked to, their present life circumstances did not always allow them to take treatment for those future benefits. That future felt distant and intangible. Treatment prescriptions not only need to align with patients’ health needs, but also their social and economic needs. For health policies and programs, this may mean incorporating poverty alleviation strategies along side with medical treatment. Providing patients with food supplies, for instance, may ease some of their economic concerns. And counseling and treatment support during the early months of starting ART may also help women accept their status and make sense of side effects.
Amy Zhou is a doctoral candidate in the Department of Sociology at UCLA. Her dissertation explores how global health priorities are negotiated and transformed in developing countries. She received the CSW Elizabeth Blackwell, MD, Graduate Award for her article “The Uncertainty of Treatment: Women’s Use of HIV Treatment as Prevention in Malawi.”
Schouten, Erik J, Andreas Jahn, Dalitso Midiani, Simon D Makombe, Austin Mnthambala, Zengani Chirwa, Anthony D Harries, Joep J van Oosterhout, Tarek Meguid, and Anne Ben-Smith. 2011. “Prevention of Mother-to-Child Transmission of HIV and the Health-Related Millennium Development Goals: Time for a Public Health Approach.” Lancet 378 (9787): 282–84.
Tenthani, Lyson, Andreas D Haas, Hannock Tweya, Andreas Jahn, Joep J van Oosterhout, Frank Chimbwandira, Zengani Chirwa, et al. 2014. “Retention in Care Under Universal Antiretroviral Therapy for HIV-Infected Pregnant and Breastfeeding Women (‘Option B+’) in Malawi.” Aids 28 (4): 589–98.
UNDP. 2014. “Human Development Report.” United Nations Development Programme.
Zhou, Amy. 2016. “The Uncertainty of Treatment: Women’s Use of HIV Treatment as Prevention in Malawi.” Social Science & Medicine 158: 52–60.