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 the greatest unaddressed patient need in the CF community is adult care. With all of the great advancements in CF treatments, CF patients are living well into adulthood. The vast majority of hospitals with CF clinics don’t have an adult care center, especially in smaller communities. This means that adults are having to go to children’s hospitals to receive care. Since CF care is specialized to these children’s hospitals, many emergency room departments are not properly educated on CF needs. I recently suffered an asthma attack and went to the ER closest to my home. Although the doctor knew about CF, she had no awareness of my CF medications. She was hesitant to treat me without consulting with my CF clinic. I would suggest that every children’s CF clinic have designated rooms and appointment times for adult patients. I would also suggest that there be age appropriate inpatient activities set aside for the adult rooms, such as, magazines and Netflix access. I would work with the Nationwide Children’s Hospital in Columbus, Ohio, as well as the Cystic Fibrosis Foundation, to raise money and to generate ideas for a better adult experience at the children’s clinic. Hopefully incorporating these ideas would make being an adult with CF less awkward.