While we know that cystic fibrosis is a disease that can affect people of every racial and ethnic group, there is additional research that shows people of color with CF experience unique challenges and often negative experiences that can lead to poorer health outcomes. Studies have shown these inequities can include delayed diagnosis and lower representation in clinical trials.

To work toward addressing these inequities, the CF Foundation convened the External Racial Justice Working Group — a collaboration between Foundation staff and external advisors from the broader CF community, including people with CF, family members, researchers, and care team members – to focus on the unique challenges Black people with CF experience. Informed by deep listening efforts with the community, this group has developed recommendations for the Foundation to address inequities in three key areas: health equity and outcomes, diverse workforce development, and community.

Health Equity and Outcomes Recommendations

For health equity and outcomes, the Foundation is working to support improvements in care and care delivery to help achieve more equitable outcomes for Black individuals with CF. Efforts are focused in the areas of initial diagnosis, care and management, research for new therapies, and improving overall understanding and awareness of inequities.

Diverse Workforce Development Recommendations

For diverse workforce development, the Foundation is working to advance a robust pipeline of health care professionals and researchers from multidisciplinary backgrounds focused on CF who are equipped to address the changing health care needs of all people with CF. Evidence has shown that diverse perspectives in research can generate greater innovation and productivity, key components needed to accelerate our efforts to find a cure for CF. This is why the Foundation is focused on efforts to both grow and support the diverse CF workforce, through fostering opportunities that support inclusion, recruitment, retention, and career advancement across cultural backgrounds.

Read more on the recommendations.

Next Steps

This year, the Foundation will develop a roadmap to continue implementing these recommendations, with additional insights focused on community following in the coming months. The recommendations identified by the External Racial Justice Working Group will help the Foundation identify ways to improve our programs, processes, and policies. While focused on the unique experiences of Black people with CF, there is potential to expand these learnings to benefit and reach other groups.

While we have made important progress laying a foundation for the complex, long-term, and sustained effort required to achieve our goal of finding a cure, we know that there is still much to accomplish “until it’s done” for everyone. For additional information on these efforts, visit cff.org/OurCommitment or subscribe to email updates on our commitment to equity, racial justice, diversity, and inclusion.