CF Foundation Seeks Minority Patient Voices on Inequalities in Care, Research

CF Foundation Seeks Minority Patient Voices on Inequalities in Care, Research
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In an effort to address racism within the cystic fibrosis (CF) community and the health disparities it fosters, the Cystic Fibrosis Foundation (CFF) is asking for greater input from people of color with CF .

“We feel great urgency to confront the challenges facing people of color across the CF community; we are also committed to taking steps that will result in meaningful, lasting change,” the foundation wrote in a press release.

While CF affects people of all racial and ethnic backgrounds, Blacks, Hispanics, and other minority groups in the U.S. lack equitable recognition and representation.

In discussions with the CFF, Black CF community members expressed the need to build trust both with the foundation and the community as a whole. Their concerns included a lack of representation in clinical trials, and a lack of access to adequate treatments because their disease-causing mutations are too often not suited to existing therapies.

“They have expressed concern about the lack of representation across a range of settings, and report upsetting experiences in healthcare settings about the ways their race impacts their care,” the CFF stated.

Those wishing to contribute their insights and experiences to the CF Foundation are invited to complete this interest form.

Obstacles to quality healthcare among minority populations are well documented. In rare diseases, where barriers to care can already be high, lower economic status leads to poorer social determinants of health, and minorities are chronically underrepresented in many population genetic studies.

In the ongoing survey, people of color with CF described several challenges related to underrepresentation.

Infants of color carrying CF mutations are less likely to be found through newborn screening. Accordingly, they tend to be older than white children when first diagnosed, and are two-and-a-half times more likely to fail to thrive.

Many studies have shown non-white populations are underrepresented in clinical studies.

The CF Foundation Patient Registry reported that an estimated 8.2% of CF patients identified as Latino and 4.6% as Black as of 2014. But among 29 clinical trials that reported race and ethnicity, Latinos accounted for 2.0% of participants and Black patients for 1.0%, a 2016 study found.

Less well-studied mutations often cause CF in Black and Hispanic populations, limiting patients’ access to CFTR modulator therapies. While some 72% of Caucasians carry the F508del, recognized as the most common CFTR mutation, it is found in  an estimated 44% of African-American and 54% of Hispanic CF patients.

Black and Hispanic people with CF are also at higher risk of dying than white CF patients in the U.S. One nationwide study reported that Hispanic CF patients died at an average rate that was 1.27 times higher than that of non-Hispanic patients. Similar findings have been reported among Black populations.

Black, Hispanic, Asian, and Middle Eastern CF patients also tend to find access to lung transplants more restricted.

The foundation is also recruiting individuals to join a working group focused on understanding how racism affects the Black CF community, including access to research and quality care.

All community members, regardless of racial background, interested in this and other foundation initiatives are invited to join its Community Voice. Other questions can be directed to [email protected].

“It is our goal to develop a diverse and inclusive CF community that promotes equity,” the CFF stated on its Community Voice interest form.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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