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?"

One major unaddressed patient need in the CF community is accessing and paying for the high costs of healthcare insurance which provides needed medication and care. According to Science Direct, the average costs for lifetime CF healthcare is approximately $306,332. Depending on the treatment plan and hospitalizations of the individual, these costs could greatly surpass the average. While most people with CF have health insurance, many face gaps in their coverage. Patients and families live in fear that they could lose their jobs, health care coverage, or face costs which may not be covered by insurance. For example, my parents feel limited on where they can work because smaller companies cannot afford our health insurance costs. These factors could delay or forgo care. To resolve this issue, I would partner with the CF Foundation because they have a strong understanding of CF patient needs, connections in the pharmaceutical and healthcare industry, and they could work closely with our state and federal insurance programs to provide a solution. They could work together with policy makers with the intent to provide access and lower the costs of insurance premiums to patients with preexisting conditions. In the CF community, we feel that we are being exploited and discriminated against because we have no other option but to take the drugs. If we don't take the drugs, we face serious health consequences. This issue has gone on for much too long and change needs to happen now.