Yordanos M. Tiruneh Northwestern University Committed to Live: Strict Adherence to Antiretroviral Therapy in the Face of Economic Hardship Yordanos M. Tiruneh Northwestern University

Background There was a reservation to make Antiretroviral treatment (ART) accessible for people living in poor settings. Despite variable methods, studies conducted to assess Adherence to ART among people in such settings reported comparable or even better adherence levels than Westerners. Few studies suggest that social support may have facilitated greater treatment adherence in Africa (Ware et al. 2009)

Research Question How does ‘ART’ as a conventional form of treatment that arose out of socio-economic and scientific advances of ‘the West’ is interacting with economic, social and cultural realities in Africa? More specific: How do People Living with HIV/AIDS (PLWHA) in Ethiopia navigate economic barriers, pursue resources, make health management choices, and shape their lives in the wake of free antiretroviral treatment?

Methods Ethnographic study – in an urban HIV clinic Six months of fieldwork 105 - In-depth interviews Ethnographic observation Participants: Adults who had been on ART for at least six months. Data analyzed using Grounded theory

Study Participants Socio-demographic Female- 59% Mean age - 38 years Average number of months on treatment – 32 Majority (37%) were single Only (14%) had college education (63%) were orthodox Christians. More than two thirds (70%) had no income or had an income of less than $50 a month

Major Economic Challenges Food insecurity Health care costs Cost of tests and additional treatment Costs associated with changes in lifestyle- cost of “good’ food. Cost of transportation to access care

Strategies Used Deplete one’s resources Seeking social support Support from friends, families, neighbors, and acquaintances Participation in civic organizations helping PLWHA When support is unavailable- Prioritization and making trade offs It is a matter of life. We can’t buy life in thousands. We will deduct from our food expense and buy the prescribed meds. It is a must!

Strategies - Cont’d In the worst case scenario, ignoring needs and learning to “live without” Taking pills without food Walking to the clinic when they do not have transportation Ignore illness symptoms that need treatment to avoid additional cost Forget about the food; it’s for the haves. For the have-nots, it’s still better to take it[medication] without food than leave it. …

Motives for adherence despite abject poverty 1. To fight physical death Everybody expected me to die. After I started the medicine and as I got well physically, I guess people started to even doubt whether we [my wife and I] have the virus or not for certain.

2. To fulfill social responsibilities I did not want to take the medication and live longer; I always wanted to go to a holy water site and die there. But I think about my son, and I often think what might happen to him if I die. I decided that I have to live for him; to see his future. I live only for this reason; otherwise I do not even get enough to eat [let alone enjoy life in its fullest].

3. To fight social death and claim social re-birth I am happy as people who didn’t shake hands with me before, embrace me today. People have started to give me the right treatment. … Before I started the treatment, I had stopped going to social gatherings, but now I go to weddings, funerals, and I am active in social life.

Differing from Ware and colleagues’ argument (Ware et al Differing from Ware and colleagues’ argument (Ware et al. 2009), my study points to three other observations. People with lower social capital resources were equally or even more adherent to medications especially if they have social obligations Social relationships with no attached benefits could be liabilities in the face of pervasive stigma Economic crisis and the accompanying epidemic of poverty in African countries affected social cohesion of its people, which is the foundation for the various forms of social capital

Conclusions Unless we address the structural problem (poverty and other forms of inequalities), social capital by itself would neither fully explain variation in health outcomes nor ameliorate the economic challenges faced by PLWHA in Africa. Rather, the lingering economic hardship in such settings is affecting social cohesion of its inhabitants, which is the foundation for social capital. Further research is warranted to the study the link between optimum illness management and social capital resources.

Thank you for your attention!