Cystic Fibrosis in Context: A Look into Patient Advocacy, Race, Genetics, and Big Pharma

Despite more people having Sickle Cell Disease (SCD), the Cystic Fibrosis (CF) community receives more private funding, venture capital contributions, and access to participation in political discussions. This divide makes sense given the racial disparities between the mostly black SCD community and the predominately white group of patients with CF. In this paper, I look at how advocacy organizations and scientists build relationships with patients, the impact of race on the history of these advocacy groups, and how conversations about future biotech initiatives differ due to disparities in disposable capital between the two groups. SCD patients have had to combat racism that results in lower access to care, higher levels of medical stigma, and lower access to advocacy involvement, while CF advocates have been able to use their access to monetary capital and time as leverage in their advocacy. Despite these inequities, the SCD and CF communities have both had to deal with the way corporate power steps over patient voices to benefit special interests like venture pharmaceutical companies and stem cell research. To overcome these inequities in advocacy, scientists and politicians need to seek out patients\u27 experiences and priorities with an understanding of outside social determinants like race