New Tool Helps People of Color Screen for Cystic Fibrosis
Cystic fibrosis (CF) is a lung disease that affects about 90,000 people worldwide. CF is most common within the white population. However, it affects people of all races and ethnicities. “The recognition of CF in Black individuals and people of other racial and ethnic backgrounds has been markedly inadequate,” said pulmonologist Jennifer Taylor-Cousar, MD, co-director for the adult CF program and the interim associate vice president of Diversity, Equity and Inclusion at National Jewish Health.
People with CF often experience abdominal pain, diarrhea, difficulty gaining or maintaining weight, sinus congestion and productive cough. If not treated, a vicious cycle of inflammation, chronic infection and irreversible damage to the airways occurs early in life. People with CF require lifelong treatment with multiple daily medications. A misdiagnosis ultimately leads to early death.
Following the virtual North American CF conference in the fall of 2020, Dr. Taylor-Cousar met Terry Wright. Wright was an Arkansas resident in his 50s. His CF symptoms were misdiagnosed for decades. “In spite of having multiple symptoms consistent with CF, he and his wife Michele were once told by a physician that he couldn’t have CF — because he is Black. This implied that CF is solely a ‘white people’s disease.’ Because of the misdiagnosis, he spent years undergoing surgeries that didn’t help, and spent countless days in the hospital throughout his life,” said Dr. Taylor-Cousar.
Dr. Taylor-Cousar and the Wrights discussed the possibility of developing a free online tool. This tool would be accessible for anyone to self-screen for symptoms of CF. Dr. Taylor-Cousar offered her medical expertise to create and refine the tool to reach a broader population. She and the Wrights then presented the tool to the Cystic Fibrosis Foundation’s (CFF) education committee. The committee found the tool qualified as an effective screening tool for public education about CF.
The Wright Cystic Fibrosis Screening Tool© is now being shared with CF care teams through the CFF. It is also being accessed by the general public on social media.
The new tool helps people identify symptoms that could be related to CF. It also aids medical providers in identifying individuals with CF. This includes patients who are Black, Indigenous, and People of Color (BIPOC). “The sooner we get the word out about this new tool the better. It could literally save, or change someone’s life,” said Dr. Taylor-Cousar. “Once they have a diagnosis, there are new disease-modifying therapies for CF for which people may be eligible.”
Once the screening is completed, individuals can take the information to a doctor, who can refer them to get a test to confirm if they have CF. Patients can undergo a short procedure called a sweat test, during which the sweat glands on their skin are stimulated with medicine and the amount of chloride they can reabsorb is measured.
Dr. Taylor-Cousar continues to research CF while working with patients. She was recently the lead author on a paper published in The Lancet (Opens in a new window) (Opens in a new window) (Opens in a new window) (Opens in a new window) (Opens in a new window) that detailed how far CF treatments have advanced. “In the 1980s, few people with CF lived beyond their teens,” said Dr. Taylor-Cousar. Thanks to medications and innovations like the new screening tool, physicians are making great strides in extending and enhancing CF patients’ lives.
To learn more about how National Jewish Health doctors are working together to develop innovative treatments for cystic fibrosis, visit our program page here.