DENVER — A lung doctor based in Denver says the disease she treats is sometimes misdiagnosed because of a patient’s race.
Now, Dr. Jennifer Taylor-Cousar hopes a new tool will empower patients to screen themselves for cystic fibrosis and advocate for themselves to receive appropriate medical care.
Taylor-Cousar is a pulmonologist at National Jewish Health. She treats both adults and children diagnosed with cystic fibrosis (CF), a genetic disorder. She helped create an online tool anyone can use to screen for symptoms, and if needed, request formal testing from a medical professional.
“The disease causes thick, sticky mucus in the lungs. It causes those same thick secretions in the gut. People have chronic infections, cough, have a tough time gaining weight,” she said.
“It’s very important to catch it early. The whole reason we do newborn screening is because the earlier you catch it, the better people's outcomes are," she said.
But Taylor-Cousar said some patients are misdiagnosed based on their race.
“Back in 1938, when Dr. Dorothy Anderson describes cystic fibrosis in her original case series, she noted there was a Black child and a Hispanic child. But unfortunately over the years, that message was lost, and it’s been couched as a disease only in white people,” she said.
“Therefore many, many people of color have been misdiagnosed with asthma or something else, or they’ve been diagnosed very late. So their outcomes have been so much worse because of late diagnoses," she said.
The online resource is called the Wright Cystic Fibrosis Screening Tool. It's named for Terry Wright, a Black cystic fibrosis patient who was misdiagnosed for decades. Taylor-Cousar connected with Wright and his wife during a conference, and together, they developed the free online tool.
According to a press release from National Jewish Health, the screening tool is being shared through the Cystic Fibrosis Foundation and healthcare teams around the country. It is available in English and Spanish.
Conner Holmes III was diagnosed with CF as a baby in Denver.
As a Black man, he said he faced questions and doubt from doctors most of his life seeking treatment for his disease.
“They didn’t want to wrap their head around a person of color, a Black person, having that. They just didn’t want to believe it,” he said. “My mom and dad went through a lot, back and forth to the hospital, and even though I was diagnosed with it, [doctors] still didn’t want to believe it.”
Holmes, 62, is now a patient at National Jewish Health. His treatment includes wearing a vest that shakes his body to loosen the mucus in his lungs. With the development of new medicines in recent years, he said his lung capacity has improved a bit.
His mother, Bessie Holmes, hopes the new online screening tool will help other CF patients and their families avoid the questions and doubt her family faced for years. She also hopes it means an earlier diagnosis and treatment for patients.
“That is my hope,” she said. “That they would know sooner that there is help for them, and be able to get that help.”
Conner Holmes hopes patients and healthcare workers alike will understand that race shouldn’t be a barrier to diagnosis.
“I hope we stop putting people in categories,” he said. “If they have symptoms, they have the disease. Stop saying if you’re Black you don’t have this! That’s not the case.”
Among her many roles, Taylor-Cousar also serves as the interim Associate Vice President of Diversity, Equity and Inclusion at the hospital. Its important to her to make sure all patients, regardless of race, receive timely and accurate healthcare information and treatment.
“This tool can help people, as they go to doctors, to advocate for themselves and say no, this disease [does] occur in people of any color and please treat me appropriately,” she said.
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