AARP Hearing Center
Stephen Voss
We started the National Organization of African Americans with Cystic Fibrosis (NOAACF) in 2017 to raise awareness of cystic fibrosis in minority communities and to support patients and caregivers.
The problem we’re trying to solve
Nearly 40,000 people of every racial and ethnic group in the U.S. have cystic fibrosis (CF), a genetic disorder that causes significant problems with breathing and digestion. But there’s a misperception that it’s a white person’s disease, which can result in a later diagnosis in people of color. That was the case with Terry, who was only diagnosed when he was 54 even though he had been hospitalized, seen multiple health care practitioners and unknowingly dealt with the devastating consequences of the disease throughout his life. Advances in the diagnosis and treatment of CF have transformed the prognosis of this disease from a severely reduced lifespan to a chronic condition with a rapidly increasing life expectancy. However, minority populations continue to fall through the cracks. There are limited resources and educational materials that specifically address Black, Indigenous and people of color (BIPOC) with cystic fibrosis.
Our mission is to educate patients, families, caregivers and health care providers, and raise awareness that cystic fibrosis can impact anyone. Our work includes outreach to the nationwide network of more than 130 care centers for CF patients and their families. Through these efforts, our long-term goal is to reduce delays in diagnosis and improve outcomes for underrepresented communities.
The moment that sparked our passion
The closest Terry came to being diagnosed was in 2000, when a doctor told us, “If you were not Black, I would say you had cystic fibrosis.” So it was missed. In 2017, we were desperate to find answers because we knew that the clock was ticking. Terry had had several surgeries, and was in and out of the hospital and getting worse. From Michele’s previous work in health care, she knew that infectious disease doctors are often brought in to solve medical mysteries and we reached out to one in our community. After talking with him for 30 to 40 minutes, he said he thought that Terry had cystic fibrosis, which led to him finally getting tested, diagnosed and treated. After we solved the mystery of the illness that had been devastating Terry’s life, it became important for us to do what we could for others with the same problem.
