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?"

Ten percent of people with cystic fibrosis have nonsense mutations and are not eligible to use modulator therapy. Ninety percent have the most common mutation that these life-saving medications target, however, many individuals are unable to access this advanced treatment. Health disparities and unequal access to CFTR modulators, and other innovative therapies, is the most pressing issue facing the global CF community today. From Scotland to Canada, patients are being denied access to life-saving drugs. In the United States, healthcare coverage, pre-existing conditions, and socioeconomic status are all social determinants of health and access to care, such as a CF patient’s likelihood of receiving a lung transplant. Patients who face these barriers have been left wondering if the kinds of treatments available to others will reach them in their lifetimes. I would partner with Emily’s Entourage organization to expedite research and raise greater awareness on nonsense mutations to close the gap in drug research thus far. Funding and awareness are vital for change, and that is exactly what I would plan to do to connect marginalized CFers to essential resources. Additionally, I would work with pharmaceutical companies to create outreach programs to ensure anyone who is struggling to obtain treatments is provided with support and an avenue to do so. Although there has been great strides towards treating the underlying causes of CF, there is much more to be done to mitigate these disparities and help all of the CF community.