Empowering C diff Advocacy, Supporting Community: Insights From the National C diff Advocacy Summit

Pharmacy Times interviewed Christian John Lillis, CEO and co-founder of the Peggy Lillis Foundation, on the scope of the Peggy Lillis Foundation's 2024 National C diff Advocacy Summit and their work connecting and supporting patients with Clostridioides difficile (C diff) and their loved ones and survivors of the disease.

Pharmacy Times: What is the focus of the Peggy Lillis Foundation's 2024 National C diff Advocacy Summit, and who are the stakeholders represented at the event?

Christian John Lillis: This is our 9th annual National C diff Advocacy Summit. We had our first one in 2015, and our goal was to bring together C diff patients and survivors from all across the country, because there was a real lack of community, and a real lack of a sort of cohesive movement of people that had either battled C diff and survived it, or had lost a loved one to C diff.

So, that first time back in 2015, we had dinner and we had like 30 people in the room, including those who had lost a loved one to it, and I think that at that point, that was the largest convening of that kind of person that had ever happened. And so, since then, as the summit has grown, we have looked to include folks from industry who largely fund the summit, but also, folks from academic medical centers, scientists from biotech, involving the press more so that we can raise more awareness of the disease, inviting regulators from the FDA and CDC. So really, our goal is to create a central place once a year where everyone who's invested in slowing, interrupting, stopping this epidemic that infects half a million Americans and claims 30,000 lives every year, can sort of be in community, think together, and build bonds that then throughout the year and the years to come result in things that we couldn't have predicted. So, it's really kind of our main hub for sort of enriching and re-energizing the movement to fight C diff every year.

Pharmacy Times: What are some highlights from the Peggy Lillis Foundation's 2024 National C diff Advocacy Summit?

Lillis: A highlight for me this year, and it's the second year in a row we have done it, is that we have had made C diff patients and C diff survivors participate in panels, and also folks who are both C diff survivors and clinicians present. That brings a unique perspective from somebody who's working inside the health care profession, which is highly associated with people getting C diff as a result of interacting with health care facilities, to see both sides of it and therefore be able to bring a perspective that is richer for being both clinical and patients at the same time.

Key Takeaways

Community Building and Advocacy: The Peggy Lillis Foundation's annual National C diff Advocacy Summit serves as a central platform for connecting patients, survivors, industry stakeholders, academics, scientists, regulators, and press to collaborate in combatting Clostridioides difficile (C diff). The summit plays an important role in fostering community, sharing knowledge, and driving collective action against this disease.
Patient-Centric Perspective: The foundation highlights the importance of incorporating patient and survivor perspectives in health care discussions. By involving survivors of C diff who are also clinicians in panels, the summit provides a unique viewpoint that combines clinical expertise with lived experiences, enriching the understanding of challenges and solutions in C diff treatment and care.
Pharmaceutical Collaboration: The Peggy Lillis Foundation collaborates closely with pharmaceutical professionals and pharmacists in the fight against C diff. Pharmacists play a key role in antimicrobial stewardship and treatment decisions for C diff patients. The foundation values pharmacists as allies and provides resources to support them in optimizing patient care and advocating for effective treatment strategies.

Pharmacy Times: How does the Peggy Lillis Foundation work with professionals in the field of pharmacy?

Lillis: So, the Peggy Lillis Foundation is actually incredibly fond of pharmaceutical professionals. We have many on our scientific advisory council. We have been working for many years with the Society of Infectious Disease Pharmacists. We consider pharmacists to be some of our best allies in combating C diff by being the people who lead antimicrobial stewardship programs, and who often are determining which antibiotic is the safest for somebody who has had C diff in the past. So, they're playing a very vital role in that regard. And then we launched a new website last year, so if folks haven't checked it out, I'd highly recommend it. We have a section that is for clinicians, and it has our patient care guide, it has a lifestyle nutrition guide, which is really taking people beyond the sort of immediate treatment of C diff, and what is it like to kind of live a life that is C diff safe, meaning building your microbiome through diet, through exercise, through supplements, and through also being cognizant of antibiotic use. There are so many stories on our website that can be highly instructive. If people want to share them with their team in a hospital or use them as an example we also have a huge video library of patients telling their stories that we are happy for pharmacists or the heads of pharmaceutical departments and hospitals to use as a way to educate their staff and keep their staff grounded in why their job is so crucial.

Pharmacy Times: From your work in patient advocacy, what is the patient perspective on treatment and associated outcomes for C difficile currently?

Lillis: Treatment for C diff is a little contentious at this point because we have some new therapies—both of which because it's a new modality of live microbiome biotherapeutics—we worked to help get approved. But we don't yet really have guidelines that recognize them and [help make clear] where they are in standard of care or [how they] will change the standard of care over time.

So, I do think that sort of understanding the degree to which vancomycin (Vancocin; ANI Pharmaceuticals) fails, and whether or not fidaxomicin (Dificid; Merck) is a better bet. And then if those 2 things have not worked for a patient, understanding what are the live biotherapeutic options that are out there that are FDA approved now, but also that for [pediatrics] and [sic] we do not have really an option, none of the live biotherapeutic options are approved for those purposes. So I think we kind of celebrated too quickly and felt like, ‘Oh, my God, now we have these new treatments, and the world's going to be rosy,’ and instead, what we're finding is that it's going to take time to sort of change practice, change the standard of care, and, obviously, pharmacists have a role to play in that, whether they're serving on guidelines committees, or thinking through what's in their own formulary and what they keep on hand.

Listen, nobody likes to fight their bosses, but sometimes you have to fight the good fight and tell your bosses that you need something on the formulary because it's better for patients than the other thing. Another role, I think, is looking at budget and looking at what is being spent, because oftentimes, what we see with C diff is that people who are given the least expensive treatments at the outset, a significant percentage of them will recur, will end up hospitalized, and will end up with dehydration, and in the long term that costs the health system more money than if they were given the best possible therapeutic option at the outset. I think pharmacists have a role to play in making that case.