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?"

In the past few years, I have come to understand how complex a disease like Cystic Fibrosis is, its effects extending beyond my lung capacity and pancreatic function. At the age of ten, I was referred to a gastroenterologist for liver complications. Just a few months later, thinking I had enough with all the complications, I was diagnosed with Cystic Fibrosis-Related Diabetes. My new regimen included additional medications to keep my liver content, more regular lab work, and daily insulin injections. Prior to these additional diagnoses, I perceived myself as having enough health complications for a lifetime - with these new add-ons, my work had just been tripled. In this vein, I believe to improve the quality of care in the CF community, we must work towards better coordination of care. Because I see multiple doctors to address all aspects of my health, I have found that it is easy for information to get lost in translation, or for one specialist to hyperfocus without paying enough attention to the implications on another area of care. To reimagine my goal of greater coordination, I would partner with Dr. Fauci, who has demonstrated his adept communication skills. Dr. Fauci’s ability to provide instruction would help to inform the community about all aspects of Cystic Fibrosis and how to best approach their care. Improving the coordination of care in the CF community would allow for a smoother flow of information across specialties and ultimately, a more holistic and comprehensive approach to Cystic Fibrosis.