Disparate Funding for Sickle Cell Disease vs. Cystic Fibrosis

Sickle cell disease (SCD) and cystic fibrosis (CF) are both serious disorders that are inherited recessively and can greatly impact health outcomes and quality of life. The majority of individuals with SCD are Black, and the majority of patients with CF are white. While SCD and CF have relatively similar profiles in terms of inheritance and prognosis, the incidence of SCD is about three times higher than the incidence of CF.

This study found that despite the parallels between CF and the higher incidence of SCD, research productivity, and disease-specific funding are much higher for CF. Funding per person is nearly 3.5 times higher for CF research than for SCD research.

Moreover, philanthropic foundation expenditures are over 75 times greater for CF research. A significantly higher number of research articles—668—were published on CF than SCD between 2008 and 2018. During this time, despite there being a similar number of clinical trials for both diseases, CF drug approvals outnumbered SCD drug approvals 4 to 1.

To provide equitable care, SCD should receive approximately three times as much funding as CF. However, we continue to observe an opposite trend in funding. Something is clearly at play in causing this disparity, and the role of race cannot be ignored. SCD is a primarily Black disease, and Black patients face medical racism across all realms of health care. Even when they are treated equitably, many Black patients still harbor distrust of the medical system.

Despite the diversity of philanthropic organizations, Black donors face competing demands. Due to pervasive structural racism in the United States, a Black philanthropist wanting to help Black individuals would not be able to divert funds to SCD alone.

To address this disparity, white philanthropists would need to diversify their giving. Because funding is the core of research and quality care, individuals with SCD will only be treated equitably once they receive equitable funding [1].

Source:

[1] Farooq, F., Mogayzel, P. J., Lanzkron, S., Haywood, C., & Strouse, J. J. (2020). Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity. JAMA Network Open, 3(3), e201737. https://doi.org/10.1001/jamanetworkopen.2020.1737