Meet the 2020 Scholars

"What do you believe is the greatest unaddressed patient need in the CF community, and if you could, how would you try to fix it? Who would you partner with (e.g. public figure, organization) to help fix the issue and why?"

A common saying within the CF community is, “Once you met one CF patient. . .you have met one CF patient.” Cystic Fibrosis is a complex disease with different patient impacts. I have friends with my same mutation, yet their symptoms look drastically different. Unfortunately, our current medical system does not allow for flexibility of treatment within a diagnosis. There is no one applicable treatment for all CF patients. Brilliant medical practitioners struggle daily with finding specific treatments insurance will allow in coverage for individual patients. This results in a delay of treatment thus compromising the patient’s well-being. Furthermore, as CF patients get older, this cumbersome process of debating appropriate treatment and delayed insurance approval comes at the expense of the patient’s health. Unfortunately, there isn’t a simple answer to streamline the process of “prior authorizations, appeals, second appeals, approval or denial.” But doctors should be free to do what they do best, save lives not file paperwork and justify treatments. As a cystic who has been denied prescribed treatments, I know this is a real obstacle for our community and it deserves a meaningful conversation. Often times, the prescribed treatment is to keep me out of the hospital thus saving my insurance company money in the long run. If I had a platform that united major insurance providers along with members of the CF community, we could work together in not only the fight for a CURE but also a fight for common-sense CARE.