Foundation’s Lobby Day is an Opportunity for C diff Patients, Caregivers to Meet With Congress

Throughout the course of the year, the Peggy Lillis Foundation (PLF) works to help people with C diff to be a voice of awareness and educate everyone about this potentially debilitating infection. PLF’s work culminates in their 2-day event, the annual National C diff Summit and Lobby Day, which takes place in Washington DC, on April 13–14.

The Summit is held on the first day and the second day’s festivities is called Lobby Day, which just as the name suggests, is an opportunity for people with C diff and their caregivers to meet with members of Congress to help them understand the issues they are dealing with in hopes of drawing attention and getting congressional members to make some beneficial changes.

This year, PLF’s CEO Christian Lillis says there are a couple of specific topics they want to discuss, starting with access to therapeutics.

“We're asking members to help us get insurance to cover these new drugs...These drugs are not getting covered,” said Lillis.

Another major topic they are lobbying for is to have the Department of Health and Human Services (HHS) recharter the microbiome interagency strategic plan and interagency working group to allow for them to meet regularly to discuss C diff therapeutic funding and related-issues.

“There's a lot of early studies showing us the impact that they can have, but without a coordinated approach, it's challenging to get there. Our primary ask is for additional funding for late stage antimicrobial development, primarily through BARDA, but also perhaps through other agencies. Right now, there are 2 or 3 C diff specific antibiotics awaiting phase 3 trials, and the biggest obstacle is that there is a real lack of private investment,” Lillis said.

“There has been a chilling of investment in biotech over the past several years, and in the case of these new compounds, the phase 2 trials not only showed them to be highly effective at initial cure, but substantially better at preventing recurrence. So in one phase 2 trial, only 4% of treated patients had a recurrence in the next 6 months. That is an enormous difference from vancomycin, where 25 to 30% end up with a recurrence in 6 months.”

He explains getting more efficacious antibiotics across the finish line could create less human suffering in the way of recurring infections and reducing healthcare costs overall.

“It's not just that the patients would benefit, which, of course, we really, really care about, but it would benefit the system overall,” he said. 


This 2-day event will be held in-person and is free to attendees. To register for the Summit, go here.

In our final episode with Lillis, we delve further into the human and financial costs associated with reoccurring C diff.