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Disparities in Funding Exist Between Sickle Cell Disease, Cystic Fibrosis

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A new study found that disparities in funding between sickle cell disease (SCD) and cystic fibrosis (CF) exist and may be linked to decreased novel drug development for sickle cell disease.

The cross-sectional study, published in JAMA Network Open, utilized federal and foundation funding, publications indexed in PubMed, clinical trials registered in ClinicalTrials.gov, and new drug approvals from January 1, 2008, to December 31, 2018.

Federal funding was found to be greater per person with CF compared with SCD (mean [SD], $2807 [$175] vs $812 [$147]; P < 0.001) and foundation expenditures were greater for CF than for SCD (mean [SD], $7690 [$3974] vs $102 [$13.7]; < 0 .001) as well.

The researchers also found that there were significantly more PubMed indexed articles for CF than SCD (mean [SD], 1594 [225] vs 926 [157]; P < 0.001). There were 4 U.S. Food and Drug Administration drug approvals for CF compared with just 1 for CF, however, total number of clinical trials was similar (mean [SD], 27.3 [6.9] vs 23.8 [6.3]; P = 0.22).

The researchers noted that in the United States the birth rate of SCD is 1 in 365 black individuals whereas, CF is 1 in 2500 white individuals.

The authors concluded that, “The findings show that disparities in funding between SCD and CF may be associated with decreased research productivity and novel drug development for SCD. Increased federal and foundation funding is needed for SCD and other diseases that disproportionately affect economically disadvantaged groups to address health care disparities.



Farooq F, Mogayzel PJ, Lanzkron S, et al. Comparison of US Federal and foundation funding of research for sickle cell disease and cystic fibrosis and factors associated with research productivity. JAMA Netw Open. 2020;3(3):e201737. doi:10.1001/jamanetworkopen.2020.1737