A woman in Maputo, Mozambique receives an HIV test at a local hospital.
In a rural village in central Africa, my colleagues and I stood over a registration book for antenatal care clients with the goal of identifying clinic-level data that could be extracted for a project evaluation. As we made our way through the book, the left sides of the pages were filled with names of women, dates and HIV test results — it was clear that almost all of the women who tested HIV positive received some form of antiretroviral therapy (ART). As my eyes ran to the right across spaces for follow-up records, however, the fields became increasingly emptier, and our team began to discuss the various barriers to services, even a highly effective service like prevention of mother-to-child transmission (PMTCT).
Access and adherence to the greater continuum of HIV care is influenced by several factors, including community-level gender norms and related behaviors. For example, HIV-positive men may avoid HIV testing and may spend a significant amount of their income attempting to address symptoms of their illness rather than confirming their HIV status. Often, these behaviors are driven by fear that knowledge of a positive HIV test result could compromise their leadership at home and cause family instability. Research has also identified instances when men undermine their wives’ access and adherence to ART, even taking their wives’ medication for themselves. Interestingly, despite such challenges, women are more likely to access and adhere to HIV-related treatment and care than men.
Several gender-focused interventions were found to increase adherence and retention in care including, but not limited to, improved ART counseling and the development of peer support groups. Some activities specifically address stigma and gender-related barriers in simple but effective ways. For example, in Lesotho, the Elizabeth Glaser Pediatric AIDS Foundation distributes “Mother-Baby Packs” containing micronutrients and vitamin A tablets to all pregnant women regardless of HIV status. HIV-positive women receive this package, but their boxes also include ART which can be taken privately at home.
Economic realities also compound these social challenges and play a significant role in deterring retention in care. Transportation, medication, and the opportunity cost to seek and receive care rather than working drive many decisions. Combined with other strains such as increased dietary requirements, housing and school fees, a wall between clients and life-saving services becomes more apparent. Simultaneously, men and women’s capacity to work is diminished as the disease progresses without medication — the development of the family and the greater community is impacted.
A recent review of HIV adherence and retention literature highlighted the need for increased linkages between clients and the “informal” community sector as part of the larger continuum of care. Linking individuals, health care and economic strengthening services through community-based organizations will play a critical role in supporting healthy lives for HIV-positive individuals. In 2013, in alignment with this finding, the U.S. Agency for International Development (USAID) awarded FHI 360 the Livelihoods and Food Security Technical Assistance II (LIFT II) project.
LIFT II seeks to increase ART adherence and retention by systematically linking HIV-affected individuals with nutrition, health services and community-based service providers, with a focus on economic strengthening services (e.g., cash transfers, savings and loans programs, agricultural trainings and enterprise development). The project’s technical assistance provides structured coordination, data-based decision making among the network of service providers, and sustainable connections to health and nutrition services. Currently, LIFT II has established clinic- and community-based service provider networks in six countries.
The LIFT II structure is well-positioned to incorporate services that include gender-based violence prevention and post-rape care, mental health and youth-friendly health services. LIFT II works with service providers to implement best practices to provide women with more opportunities to access and be retained in ART services. Activities will include: 1) encouraging men to be supportive partners, 2) promoting the inclusion of women and women’s groups in network activities, 3) educating network leaders about the developmental benefits aligned with women’s health, and 4) guiding provision of culturally appropriate economic strengthening that promote gender equality. As referral networks mature, LIFT II’s technical assistance on gender-transformative activities will also mature to facilitate the treatment of HIV as a long-term disease.
Together, gender, economic strengthening and nutrition-based approaches build an enabling environment throughout the HIV continuum of care. Over time, this will improve the wellness of HIV-positive individuals and bring clients back to health facilities for follow-up visits, increasing retention and decreasing the prevalence of empty fields in the service registers.