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?"

I believe that the greatest unaddressed patient need in the CF community lies in the need for affordable treatments and therapies. For many years, I used an airway clearance system which took thirty minutes to complete, weighed more than ten pounds, and cost thousands of dollars. Recently, I’ve been using a newer nebulizer system as a part of a CF research study. The study only lasted a few months, so when it ended, I had to return the nebulizer system. The newer nebulizer cuts treatment time in half, was lighter in size making it easy for me to bring home from college but costs hundreds of dollars. While the machine has improved my quality of life by reducing treatment time and allowing me to stay healthy and embrace life, the machine may not be covered by insurance, and now that the study is over, patients like me may not be able to afford such an expensive machine. In order to make CF treatments more affordable, I would want to raise awareness, especially to insurance companies, to show how effective these machines are for patients in hopes that these life-changing treatments are available to those in need without having to worry about the financial burdens that come along with the machines. I would want to partner with the Boomer Esiason Foundation or Colton Underwood’s Legacy Foundation since both organizations have greatly supported the CF community with their contributions and could help raise awareness on the issue of affordable treatment options!