Getting Patients Involved in C diff Advocacy, Treatment Guidelines

The Clostridioides difficile (C diff) organization, The Peggy Lillis Foundation (PLF) has had a big year. The patient advocacy group helped in getting a bill into Congress. Their work in advocacy and having conversations with Congresswoman Yvette Clark (D-NY) and her staff, led to Clark introducing the legislation, the Peggy Lillis Clostridioides difficile Inclusion Act, into the House of Representatives this past summer. The act calls for C diff to be recognized as a nationally notifiable infectious disease and condition.

PLF was instrumental in getting the bill introduced. “C diff is a disease that affects more than half a million Americans. It leads to around 30,000 deaths, and yet most Americans haven't heard of it,” PLF CEO Christian Lillis said. “And if you have an E coli outbreak in lettuce, everyone knows about it. Everyone knows as a recall, everyone knows to wash their food. And yet we don't have that same kind of surveillance or alert around a contagious disease. And so our feeling is if we were counting all the cases, we would understand that it's probably bigger than half a million people, and that it's probably more than 30,000 deaths. And then from there, we could start to really understand what it's going to take to change course and to really resolve it.”

As part of its governmental advocacy, PLF has a Lobby Day in Washington DC every year where they speak to Congressional representatives and their aides. They bring along PLF board members and people who have had C diff and are involved in the organization. And while he is grateful for the people who are involved with PLF and the greater fight against C diff, he acknowledges they are a small organization and he would like to see more people participate in advocacy. 

“Another thing that we're really focused on is how do we continue to get people who have survived C diff and who have maybe benefited from these new products to become ambassadors around the disease? We know it can be embarrassing; we know it's not the sexiest thing to talk about; but until we get more and more people to know that it exists, people can't engage in prevention. They can't advocate for themselves and for others.”

He also says this is important so that patients and former patients can get involved in treatment guidelines.

“We're definitely focused on the fact we need to have more of a patient voice in guidelines, the AGA guidelines, the IDSA guidelines—they don't have patients on those committees,” Lillis said. “As somebody who has been working with patients for 15 years, when I read the guidelines, I can tell that a patient hasn't seen them. And this isn't so much about the science, it's about the delivery.

In addition, PLF will have their annual gala next month during C diff awareness month and honor both people who have had C diff, and medical professionals.

Next year PLF is going into a noted anniversary year and plan to revolve a significant amount of their plans into it. "We are going into 2025 celebrating our 15th anniversary year, and so we really want to look back at what we've accomplished, look forward a bit towards to what still remains to be done, but also really celebrate all of the people, the sponsors, the press—everyone who has helped us to raise awareness of this disease, to empower people that have this disease, to empower their families, and to push for new treatment."