Education and Advocacy in DC: The PLF C Diff Summit and Lobby Day

The Peggy Lillis Foundation is hosting its annual National C diff Summit, which is going to be held on Monday, March 31, at the Kellogg Conference Hotel at Gallaudet University in Washington DC. The annual event brings together clinicians, industry, C diff patients, caregivers and other stakeholders. This year’s Summit will feature scientific updates in the morning, networking for all attendees over lunch, and hands-on training for volunteers in the afternoon.

Volunteers will receive training on lobbying and testifying to regulatory bodies, speaking to the media and presenting at conferences, providing emotional and logistical support to C diff patients and family members, and serving as patient advisors on clinical trials, among other topics.

PLF’s CEO Christian John Lillis says the summit is returning to its roots and taking a back-to-basics approach, where they put the emphasis on people with the condition and growing their advocacy. 

“The past couple of years, coming out of COVID, the summit has tended to be more science heavy, but this year we're back to basics,” Lillis said. “We are really focused on recruiting new volunteers, and getting new people into the movement.”

The summit’s scientific presentations will include:

• C diff Patient Experience - Alla Paskovaty, PharmD, Nestle Health Science
• The C diff Dilemma: How Hospital Policies and Environmental Contamination Keep Infections Alive - Bobby Warren, MPS, Duke Center for Antimicrobial Stewardship and Infection Prevention
• Rapid Diagnostics Role in Helping to Prevent C diff - Andrea Womble, PA-C, bioMerieux
• Developing a First-in-class Live Biotherapeutic Product to Prevent Recurrent C diff Infection - Quinn Dinh, MD, Vedanta Biosciences

The afternoon volunteer education sessions will include:

• Patient Education - Bruce Hirsch, MD; Mollie Lauck, MSN, CRNP, PHRN
• Public Speaking - Christian John Lillis, CEO of Peggy Lillis Foundation
• Peer Support - Kee Kee Buckley, Pam McCollister, Jamie Webb
• Regulatory Advocacy - Tim Clark, Ferring Pharmaceuticals, Kevin Brennan, Bluebird Strategies

Lobby Day

The next day, interested advocates can be part of an experience where they go up to Capitol Hill and lobby members of congress about C diff. “Despite being in the fifth year of COVID, we still fail to take infectious disease seriously…I think it's important for Congress to hear from people who have lost a loved one to a disease like C Diff,” Lillis said.

He says the advocates will meet with Senate and House legislators from California, Connecticut, Kentucky, Massachusetts, New Jersey, New York, Oregon, Pennsylvania, Texas, Utah, and Washington. They will speak to them about preserving and reserving the cuts to critical federal public health agencies, including HHS, CDC, FDA, NIH, and others.

Lillis says they will be focusing on the following:

• Reintroduction and passage of the Safe Step and HELP Copays Acts
• The importance of maintaining or increasing funding for federal public health in the FY2026 budget
• The potential negative impact of tariffs on the cost of diagnostics manufactured in Canada and Mexico, which may lead to a decline in CDI diagnoses and antibiotic stewardship

For anyone interested in attending this free conference, individuals can register for it here.