Learning from the Tragic Intersection of AIDS and Hemophilia: A Qualitative Inquiry

Background and Purpose

 

Hemophilia is a genetic blood disorder in which the liver fails to produce protein factors needed in the clotting process, resulting in potentially dangerous bleeding after injuries. Treatment for a ‘bleed’ involves intravenous transfusions of the missing factor. Prior to 1992, persons with hemophilia were solely dependent on donated blood-based factor – a reliance that exposed them to the HIV/AIDS virus. In the 1970s and 1980s, approximately one half of individuals with hemophilia became infected with HIV via contaminated blood products, with many infecting their partners and children. The Hemophilia Community reacted to this crisis in many ways: fear, anger, depression, withdrawal and political advocacy.

The intersection of HIV and hemophilia is one of the greatest medical disasters in United States history; however, it has received limited attention in communities not impacted by hemophilia. The role of social work in this tragedy is also largely unexplored; particularly the roles that social workers played in Hemophilia Treatment Centers, hospitals and facilitating advocacy efforts. This qualitative study illuminates a unique window into AIDS history by capturing the stories of individuals, families and professionals impacted by the intersection of HIV and hemophilia.

 

Methods

 

Twenty semi-structured telephone interviews were completed with long-term survivors of HIV and hemophilia, parents of those lost to hemophilia related HIV infection and professionals who supported these individuals and families. Non-probability sampling was used to recruit participants. Interviews elicited personal narratives and reflections, were audio-recorded and transcribed for analysis. Historical documents such as news publications, television reports and films provided contextual data. Thematic coding aligned with Constructivist Grounded Theory using NVivo 11 qualitative software guided an inductive approach to data analysis.

Findings

 

Analysis illuminates complex, multifaceted relationships between the hemophilia community, government, medical providers, pharmaceutical companies and society. These complicated relationships took place in the wider context of AIDS-related hysteria, fear and stigma. Infected participants recall shame and using withdrawal as a coping skill to hide their hemophilia, thus avoiding assumptions and HIV-related discrimination. However, hiding their medical condition meant retreating from their communities of support. Meanwhile, parents were largely public in their demands for research, treatment and policy change. Advocacy was empowering and facilitated engagement among families having similar experiences; however, many report exclusion from these communities following the death of their loved ones, compounding their trauma. Providers were praised for building safe spaces (e.g. Camp Heartland, support groups) where families had opportunities to be transparent, share resources, and create networks for support and advocacy.  

Conclusions and Implications

 

This study captures an inadequately examined history of how HIV-related fear and stigma decimated and further marginalized an already medically fragile and vulnerable community of individuals receiving treatment for hemophilia. The stories illuminate human resilience in the face of trauma and provide insight into the ways that social workers empowered community members to find their voices, build networks and advocate for change. These are important lessons to reflect upon given the current political, social and healthcare landscape in the United States.