By Raising Awareness of C diff, Foundation Hopes to Minimize Risk

Among healthcare professionals, Clostridioides difficile (C diff) infection is known as a life-threatening illness and a key reason for the recent focus on antimicrobial stewardship. However, outside of the healthcare profession, much less is known about the bacteria and its potentially devastating impact on patients.

One of the groups hoping to raise public awareness is the Peggy Lillis Foundation, which was started in 2010 following the death of its namesake. The foundation recently held its 13th annual gala, an event focused on raising awareness of C diff. Contagion interviewed the foundation’s co-founder and executive director, Christian Lillis, to find out about the organization’s work, the state of C diff awareness, and the group’s efforts to support science and policies that might help lower the risk of C diff infection.

Contagion: First, how did the Peggy Lillis Foundation start and how do you focus your advocacy efforts today?

My brother Liam and I started the Peggy Lillis Foundation (PLF) in the summer of 2010, following the death of our mother from a community-acquired C. difficile infection. Prior to getting C diff, our mother was a healthy 56-year-old kindergarten teacher. Our parents split up when we were very young so for most of our lives, Mom was a single parent. The suddenness of her death—she was only ill for six days—and the tragic nature of it spurred us to want to understand what happened.

The first time we ever heard the term “C diff infection” was when Mom was already admitted to the hospital. We would go on to learn that this infection afflicts at least half a million Americans every year, and causes or contributes to over 30,000 deaths, more than HIV or driving under the influence. Yet, back in 2010 less than a quarter of Americans had heard of it. We couldn’t make sense of a disease that was so prevalent being so unknown.

Our initial goal in starting PLF was to raise awareness of the disease, its risk factors, symptoms, and treatments so other families could be spared the loss we suffered. For the first few years, we focused on awareness raising. Eventually, we realized that raising awareness was a long-term project and people needed help now. So in 2014, we expanded our mission to build a nationwide C diff awareness movement to educate the public, empower survivors and family members, and shape policy. We studied successful patient advocacy movements from HIV to breast cancer, and they all engaged in activities around education, empowerment, and public policy.

Today, we have ongoing media efforts as well as our annual “See C diff” campaign which commemorates C diff Awareness Month each November. Last year, we reached over a million people. We have an Advocates Council comprising survivors and family members that we train and coach to engage, do public speaking, media outreach, peer support, lobbying, and advocacy. Earlier this year, our efforts led to the inclusion of language directing the CDC to explore expanding surveillance for C diff in the 2023 Federal Budget. Most recently, several of our advocates shared their experiences at an FDA Advisory Committee for the first-microbiome therapy for recurrent C diff. These Advocates helped ensure that the Committee voted overwhelmingly to approve this new therapy.

Contagion: Your website tells your mother’s story, but it also includes the stories of many other people with C diff. Why was it important to you to tell others’ stories?

Personal stories about C diff serve two purposes. First, they help people who are battling the disease to feel less alone and isolated, which is a big problem for our patient population. Our culture has a lot of taboos around discussing feces. People sharing their experiences with a diarrheal disease helps to combat that stigma and make room for people to discuss it. Our stool can tell us a lot about our health so busting that taboo is important for C diff and other issues.

Second, people relate to other people. While statistics can help us understand the prevalence and statistical risk, most people—myself included—tend to fear the unknown and unusual without recognizing the more likely sources of poor health, injury, or mortality.

You may recall that in 2014, there were a few cases of Ebola in the United States. The media went into complete hysteria as did many politicians, which led to the public being terrified about Ebola. Now, Ebola is a huge problem, particularly in West Africa. But it’s nowhere near as communicable as C diff, and the chances of someone in the US becoming infected are vanishingly small. Still, about 85% of Americans have heard of Ebola. Meanwhile, hundreds of people die from C diff and other healthcare-associated and increasingly treatment-resistant infections every single day in the United States.

Stories are far more mentally “sticky” than statistics. We hear from people all the time that reading our mother’s or another survivor’s story helped them realize they had C diff or gave them the courage to advocate for themselves. It’s sort of “Oh, if it could happen to this nice kindergarten teacher, maybe it can happen to me.”

Contagion: You recently had your annual gala, and C diff Awareness Month is November. Can you talk about the importance of this month and of the gala to your efforts and to the wider fight against C diff?

Given the relatively low public awareness of C diff infection, having a month dedicated to raising awareness of them is crucial. Last year we reached 1 million people, most of whom had never heard of C diff. This year, we’re aiming to reach 1.2 million. The more people who know about C diff, the more likely people are to minimize their risk by not taking unnecessary antibiotics, recognize the symptoms in themselves or others, and demand that we have better prevention and treatments.

The gala also helps in this regard because it gives us the opportunity to honor unsung heroes in this fight like doctors, researchers, survivors, and policymakers. By highlighting their work, we also call attention to C diff infections as well as solutions that often could be replicated to reduce transmission, speed diagnosis, and improve treatment.

Contagion: Which scientific research or advancements have you the most excited? What do you think are the biggest areas in need of further research?

As I mentioned earlier, we’re likely to see the first-ever FDA-approved microbiome therapy in the next couple of months. For patients who don’t respond to standard therapies for C diff, mostly antibiotics, fecal microbiota transplant (FMT)—where you take the stool from a healthy donor and put it in someone with C diff—has been the treatment of last resort. It’s highly effective but also has a lot of unknowns so it’s been considered experimental. There are many researchers and several companies exploring how we can add back in the good microbes we need, rather than just kill “bad” bacteria. I’m very excited about the future of microbiome therapies not just for C diff but for a range of chronic and infectious diseases.

We definitely need more research into how C diff spreads and why some people really struggle to get cured. It seems some people’s bodies don’t mount the correct immune response but it’s unclear exactly why. Knowing that could lead to more targeted treatments.

Contagion: A lot of what you advocate for are better policies, both at the governmental level and at the hospital/health system level. Can you talk about some of the key policy changes you would like to see, and where they stand?

Our number one priority is to have C diff designated as a Nationally Notifiable Disease. That designation would mean that every case is counted regardless of where it’s diagnosed. Currently, C diff reporting is largely mandated by the conditions of participation for facilities accepting Medicare and Medicaid. So the majority of hospitals have to report, and—if their rates are bad—they get their reimbursement rates cut. But certain kinds of hospitals—children’s, rural and critical access—are exempted. Having a system of reporting that results in punitive measures disincentivizes testing and reporting, which is counterproductive.

We want facilities to track their cases and learn how to minimize them. Plus, about half of all C diff infections are occurring in the community, and few of them are captured by hospital reporting. If C diff was nationally notifiable your primary care doctor would have to report it, as well as walk-in clinics, nursing homes, and outpatient centers.

We’d know the full extent of the epidemic, which itself would help raise awareness and spur more resources. And we’d also know which of our efforts, from education to testing for colonization to antibiotic stewardship, were having the greatest impact.