C Diff Patient Group Continues Advocacy With FDA Session, Day on Capitol Hill

2023 has been a busy year for the Peggy Lillis Foundation (PLF) for C diff Education & Advocacy. In March, they organized and participated in the first-ever patient-led listening session for C diff held by the FDA. In attendance were 70 FDA staff from 26 offices/divisions across 4 FDA Centers. Included in the event were 7 C diff survivors, 3 caregivers, and 1 clinician. A summary of the patient-led listening session has just been released as the initial session was closed to the public.

PLF's objective for the FDA meeting was to give them, “a comprehensive understanding of the challenges patients face in managing recurrent C diff infections (rCDI)."  

Christian John Lillis, executive director of the PLF wants to underscore the importance of giving people affected by C diff, including survivors and caregivers the opportunity to voice their feedback to public health policy agencies. He explains that much of the general public is not aware the condition even exists.

“March’s Patient Listening Session is the first step in bringing the perspective of C diff patients and caregivers into the FDA’s consideration of preventatives, diagnostics and treatments for this terrible infection,” Lillis said in a statement. “We look forward to growing our relationship with FDA to ensure C diff patients get what is needed to make this infection rare, treatable, and survivable.”

Lillis says a lot of what they do is education, and they brought that to Washington DC during the foundation’s Lobby Day directly following their annual National C diff Advocacy Summit in April.

The summit brings together C diff survivors, clinicians, industry, and stakeholders. The next day was their Lobby Day with lawmakers on Capitol Hill where surivivors had a chance to tell their stories to congress people and their staff.

To learn more about the PLF Summit and Lobby Day, watch this recent interview with Lillis.