On March 31st, Peggy Lillis Foundation convened its tenth annual National C. diff Summit in Washington, DC. This year, we welcomed many new faces from patients and industry professionals. Attendees were presented with various topics ranging from the role of diagnostics to the importance of patient education, with a focus on the volunteers and how they can contribute.

What’s New in C. diff

The morning half of the summit was focused on science-based sessions such as “C. difficile: A Big Problem for Little Kids” with Dr. Stacy Kahn of Boston Children’s Hospital and “The C. diff Dilemma: How Hospital Policies and Environmental Contamination Keep Infections Alive” from Bobby Warren, MPS of Duke Center for Antimicrobial Stewardship and Infection Prevention. 

“It was an incredible experience, and such a seemingly genuine group of people. You did an amazing thing starting the foundation,” Sara, Kentucky 

Attendees also heard from our lead sponsor, Nestle Health Science, on “Clostridioides difficile Infection and Quality of Life: Unveiling the Hidden Struggles.” Speakers Dr. Alla Paskovaty and Dr. Chloe LeBegue-Polley delved into the mental and emotional toll that patients experience as a result of multiple C. diff infections. 

The Next Class of C. diff Advocates

The afternoon portion of the Summit focused on educational sessions for volunteers to empower them as C. diff advocates. Speakers engaged with volunteers on a variety of topics, from “How to Provide Patient Education ” by Dr. Bruce Hirsch and Mollie Lauck, CRNP, to “Legislative & Regulatory Advocacy ” by Tim Clark of Ferring Pharmaceuticals and Kevin Brennan of Bluebird Strategies. 

Healthcare Advocacy at a Time When It’s Needed Most

The day after our Summit on April 1st, eighteen PLF volunteers from twelve states visited their legislators. The states represented were: Arizona, California, Delaware, Kentucky, Maryland, Massachusetts, New York, Oregon, Texas, Utah, Virginia, and Washington. Our volunteers spoke with their House and Senate offices about the damaging impact proposed cuts to critical public health agencies will have on access and innovation for C. diff and other diseases. They also shared concerns about the effects of tariffs on the cost of diagnostics, which are already underutilized. Lastly, we asked legislators to co-sponsor and support the HELP Copays and Safe Step Acts. 

Several volunteers were lobbying for the first time. While some initially expressed apprehension, they felt empowered by the experience. Denese from Arizona said, “This experience has lit a new fire in my heart for advocacy and awareness for a common cause: that C. diff one day be rare, curable, and survivable.” We are thankful to the staff from our partners at Ferring Pharmaceuticals and bioMérieux, who accompanied some of our volunteers, which helped ensure their meetings went smoothly. 

We are grateful to all our volunteers who traveled from their homes to DC for the Summit and Lobby Day. The C. diff epidemic can be ended only if we continue bringing stakeholders together to build a movement for change.