The Peggy Lillis Foundation's CEO and Co-founder Christian Lillis discusses the organization's initiatives for C diff month, and offers a glimpse of the upcoming Scientific Symposium they are hosting next week.
Today marks the first C diff Survivors Day (November 14), which was developed by the Peggy Lillis Foundation (PLF) for C diff Education & Advocacy. C diff Survivors Day will honor patients who have had
“Survivorship has come to mean a lot of things. And I think people tend to think about, ‘oh, I'm a cancer survivor’… but they don't think about it when it comes to infections. And yet, particularly with recurrent C diff, the survivorship of it could mean that you are living with GI upset and difficulties for the rest of your life,” Lillis said. He points out that along with physical GI issues, survivors can live with anxiety, post-traumatic stress, medically induced trauma, disability, and lost careers.
PLF expanded their eighth annual “See C diff” awareness campaign to include Survivors Day and Pediatric C diff Awareness Week (November 2-8).1 The overall campaign runs during National C diff Awareness Month in November.
C diff affects about half a million Americans each year.¹ Within this is a subset of approximately 20,000 children who receive a C diff diagnosis each year, according to Stacy Kahn, MD, director of the Fecal Microbiota Transplantation program at Boston Children’s Hospital.1 Pediatric recurrence rates are lower than adult rates, so only a few thousand children develop recurrent disease each year, Lillis noted. Kahn added that these patients often spend months with symptoms while moving from one treatment to the next.1
According to Lillis, the new observances came from 2 concerns: children with recurrent C diff have very few advocates, and survivorship takes many forms.²
Lillis pointed to 2 access barriers arriving together. FDA action at the end of 2024 made fecal microbiota transplantation (FMT) much harder to obtain, and several newer C diff therapies are not approved for children.² “It’s a very small population. But if antibiotics don’t work for them, they have nothing left,” Lillis said.
For example, the mothers of two boys with recurrent C diff contacted PLF. One boy, who is 12, developed recurrent infection after emergency surgery for injuries from a head-on collision, and the infection disrupted his physical therapy and further surgery.² The other, aged 7, developed recurrent C diff after receiving clindamycin for strep throat; his mother contacted about 100 physicians and hospitals and found no one willing to perform FMT. With PLF’s help, both children received an off-label treatment, and both are now free of C diff.²
C diff survivor stories can also challenge a lasting clinical assumption: C diff is largely a hospital-acquired infection, according to Lillis. Antimicrobial stewardship and isolation programs have helped reduce hospital-onset C diff and related deaths since about 2020, but community-onset infection is growing. These patients tend to be younger, often lack traditional risk factors such as age older than 65 years or recent hospitalization, and may develop C diff after an outpatient or dental procedure.
Lillis said clinicians often test these patients for parasites and viruses before they consider C diff. He also called for research into why some survivors recover fully while others have lasting health problems. Possible approaches include further microbiome research and rehabilitation through nutrition or supplements, carried out by the National Institutes of Health or by companies developing C diff therapies, he said.
Vancomycin, for example, is still the most common initial prescription even though it fails in about 40% of patients, according to Lillis, and PLF is pushing for fidaxomicin as first-line therapy. Over the past 16 years, the field has gained fidaxomicin, 2 approved live biotherapeutic products, and other new agents. Even so, many patients do not receive these therapies until their third or fourth recurrence, Lillis noted. “The scientific progress doesn’t matter to the patient because the patient doesn’t have access to progress,” Lillis said.
Next year, PLF plans to concentrate on “closing the gap” between available science and patients’ lived experience. Its goals are insurance coverage for newer therapies and guideline recommendations for using them earlier.
PLF’s Third Annual Scientific Symposium, set for November 19 and 20, will include phase 2 results for new anti-infectives moving into phase 3 trials. It will also cover prevention strategies, such as vaccines and monoclonal antibodies for high-risk groups like nursing home residents.1,2
Speakers include Alice Guh, MD, a medical epidemiologist at the Centers for Disease Control and Prevention, and Stuart Johnson, MD, an infectious disease specialist and professor at Loyola University Chicago. This year’s program adds a poster session and lightning talks from early-career investigators working in basic science.2
Registration is open
