Cystic fibrosis affects people of different racial and ethnic backgrounds. As of 2019, nearly five percent of people with CF in the U.S. identify as Black and nearly 10 percent identify as Hispanic. Yet, there is still a misperception that CF only affects those who are white. This impacts every step of the CF journey from diagnosis and access to information on the disease, to quality and delivery of medical treatment and overall health.
Improving the representation of people of color within the CF community -- including those in the CF research workforce -- is critical to the Foundation's mission of serving all people with CF.
As part of efforts to address the health disparities in CF and build a more inclusive CF community, the Cystic Fibrosis Foundation recently submitted comments to a National Institutes of Health (NIH) request for information on improving the racial equity, diversity, and inclusion of the biomedical research workforce. NIH intends to use this feedback to identify and implement policies, procedures, and practices to support a more diverse and inclusive research workforce.
The Foundation's comments focused on four key areas:
- Misperceptions of CF and the Impact of Race on Patients, Clinicians, and Researchers
- Barriers for Entering the Biomedical Research Workforce
- Institutional Culture and Supporting Mentorship
- Health Disparities and Inequities in Research
We applaud NIH's efforts to address the barriers that lack of diversity present in medicine. Confronting these challenges will take all of us. We look forward to being part of these discussions, supporting researchers and clinicians, and advocating for change that will have a meaningful impact on the lives of people with CF.