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African American cystic fibrosis (CF) patients described, in a new interview study, the lifetime of challenges they face in living with a disease often misconstrued as one that only affects white people.
A lack of representation and cultural insensitivity from healthcare teams, mental health concerns, and an inability to participate in clinical studies or receive life-saving medications due to rare genetic mutations were among the challenges these patients faced. Even in their community, there were issues for patients in trying to manage their disease.
“I had to deal with, as a teenager, racism because I didn’t look like someone with cystic fibrosis. As a teenager, when I would miss school, there would be white teachers basically invalidating and minimizing my disability,” one participant said in an interview.
According to the researchers, these “findings highlight the unique challenges faced by underrepresented groups with CF and the need to address health inequities to improve care delivery.”
The study, “The Lived Experience of African American Persons with Cystic Fibrosis,” was published in Creative Nursing.
12 African American cystic fibrosis patients detail their lived experiences
CF is a rare disease, affecting slightly more than 30,000 people in the U.S. It is rarer still among members of the Black and African American population, who account for only about 5% of the cases in the U.S., according to the authors.
With the emergence of CFTR modulator therapies and better overall healthcare in recent years, CF patients overall are living healthier lives and surviving longer into adulthood. However, this sheds light on existing health disparities for Black and African American cystic fibrosis patients.
Particularly of concern, Black CF patients are more likely to have disease-causing mutations in the CFTR gene that make them ineligible for life-saving medications. Moreover, these patients are underrepresented in research and clinical trials — long an issue in terms of drug development for minorities with rare diseases in the U.S.
These patients also have been found to face diagnostic challenges and delays, have more severe disease, and experience worse life quality than other racial and ethnic groups.
The researchers noted that Black and African American cystic fibrosis patients undoubtedly have a unique experience living with this disease. Yet, information is lacking on how these patients “navigate the predominantly white world of CF,” they wrote.
To know more, the team conducted semi-structured telephone interviews with 12 adult African American CF patients in the U.S., with an aim of learning more about their lived experiences. These six men and six women had an average age of 31. Half were on CFTR modulators, while half reported being ineligible for them.
These patients reported experiencing diagnostic challenges early in life. Because the disease is so rare in this population, many reported their parents were faced with a bias that CF was an “only Caucasian” disease.
“35 years ago, they didn’t think African Americans could have this disease,” one participant recalled. “So, as I got sicker, no one would test me for the disease. It was actually my mother who did the research on the symptoms, and she diagnosed me.”
Participants also described shock and eventually, acceptance, about the diagnosis, with a great deal of information-seeking in between. The CF diagnosis also took a heavy toll on mental health and body image for many, with some describing that this was exacerbated by cultural insensitivity from healthcare providers.
Another emerging theme was the desire for a normal life while living with an invisible disease that was central to everything they did. Patients recalled having a different childhood than most due to their disease, but support and encouragement from those surrounding them were cited as reasons for resilience. Throughout their lives, CF continued to be central to decisions about school, work, parenthood, and relationships.
Patients call for more healthcare providers who ‘looked like me’
Finally, participants talked about how a lack of cultural sensitivity and subtle racism has influenced their experiences. Interviewees generally expressed great appreciation for their healthcare teams, but noted that a lack of Black representation on those teams remained an issue.
“What I do desire is if I were to have someone in my CF care team that looked like me because I haven’t seen that,” a participant said.
Additionally, educational materials for CF don’t address the complex experiences of being African American with disease. Participants noted a need for “culturally competent care.”
Most racial biases occurred outside the care team, with individuals dealing with the perceptions from their communities that they did not look like someone who would have CF.
A number of patients had rare CF-causing mutations that leave them ineligible for trial participation. That, in turn, contributes to a lack of treatments for which these patients are eligible. Indeed, lack of access to CFTR modulator therapies that could drastically improve health was cited as a source of frustration.
We must conduct more research with African American persons with CF to fully understand what it means to be ‘rare’ in a rare disease community, with an ‘invisible’ illness.
Taken together, the researchers believe the findings highlight needed improvements in clinical practice, including the inclusion of culturally-sensitive communication, clinician training in culturally appropriate care, and diverse representation on healthcare teams.
In terms of research, the mistrust that some African American patients have in research due to historic mistreatment must be addressed to facilitate their clinical trial participation, they said.
“Finally, we must conduct more research with African American persons with CF to fully understand what it means to be ‘rare’ in a rare disease community, with an ‘invisible’ illness,” the researchers wrote.
That will require more funding to be allocated to researching this issue, according to the scientists.
“The intersection of race and research in rare diseases must be fully explored if meaningful changes and improved outcomes are desired,” they concluded.
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