The Benefits of Making C diff a Nationally Notifiable Infectious Disease
In the second part of our interview with Christian Lillis, cofounder and CEO of the Peggy Lillis Foundation, he discusses what the passage of the Peggy Lillis Clostridioides difficile Inclusion Act would do for reporting of the infection as well as the potential ancillary effects around antibiotic development and antimicrobial resistance.
Earlier this summer, congresswoman Yvette Clark (D-NY) introduced legislation into the House of Representatives, which calls for Clostridioides difficile (C diff) to be recognized as a nationally notifiable infectious disease and condition. The bill titled, the Peggy Lillis Clostridioides difficile Inclusion Act, specifically would do the following:
- Require states to collect and report data on confirmed cases of C diff
- Require Health and Human Services (HHS) to establish standardized data elements, including demographic information, clinical information, and laboratory results, for the reporting of cases of C diff.1
The bill is named in honor of Peggy Lillis, a single mother and kindergarten teacher in New York City who lost her life to a C diff infection after being sick for only 6 days. This tragedy led her 2 sons, Christian and Liam, to cofound the Peggy Lillis Foundation for C diff Education and Advocacy in the summer of 2010.
“While she might be a little slightly embarrassed by the idea that her name is running around Congress, I think that she would ultimately be proud, you know of myself and my brother and all the people who are have joined together to get this done in her name,” Lillis said of what his mom would think of the bill being named after her.
Christian and the organization played a large part in advocating for the bill’s introduction and had an ongoing dialogue with Clark and her office for years before the congresswoman decided to sponsor the bill.
Beyond the significance of collecting data of C diff, Lillis says this should work towards changing the approach to clinical care.
“We are still undercounting the morbidity and mortality of this disease. And so in my ideal world, we report every infection, first because it's important for our scientific endeavors, but also because all of those people should count,” Lillis said. “This is a preventable infection, and anybody who dies from it, we should be aware of that, and we should make sure that their death counts towards changing policy.”
He says this is also a larger conversation around antimicrobial stewardship and the development of new antibiotics.
“I'm sure the people watching this are going to know that we don't have a strong antibiotic pipeline,” Lillis said. “And I think the more that we can show that these infectious diseases are killing Americans, the more of an argument we have for producing more of these drugs.”
In the first part of the interview, Christian talks about his personal experience in how he became involved in C diff advocacy.
