Last week, congresswoman Yvette Clark (D-NY) introduced legislation, the Peggy Lillis Clostridioides difficile Inclusion Act, into the House of Representatives, which calls for Clostridioides difficile (C diff) to be recognized as a nationally notifiable infectious disease and condition.1
This bill is named in honor of Peggy Lillis, a single mother and kindergarten teacher in Brooklyn, New York who lost her life to a C diff infection. Her son, Christian, and his brother, Liam, cofounded the Peggy Lillis Foundation for C diff Education and Advocacy in the summer of 2010, following the death of their mother from a community-acquired C difficile infection. Prior to getting C diff, their mother was a healthy 56-year-old kindergarten teacher. Christian who is CEO of the foundation, says there was a suddenness to her death, (she was only sick for 6 days) and the tragic nature of it spurred the brothers to want to understand what happened.
Christian and the foundation have been working for sometime on getting C diff recognized as a notifiable disease and has been committed to the cause through his organization. The foundation has been active in education and advocacy holding their annual C diff Advocacy Summit in April in Washington DC. During the summit the foundation has a day packed with speakers including physicians, experts, and thought leaders who will hold sessions and panels diving into various topics like performing and interpreting C diff diagnostics, obstacles to optimal treatment, antibiotic stewardship opportunities for C diff patients, and racial disparities in C diff testing. The foundation’s advocates also spend time up on Capitol Hill lobbying Congressional members.
“For too long, we have witnessed a tragic lack of research, knowledge, and support cause tens of thousands of Americans to lose their lives to C diff infections, and many more to suffer from debilitating medical conditions due to the disease. In many of their cases, like that of my constituent Peggy Lillis, this deadly infection came as a devastating surprise,” said Clarke. “My legislation will require the CDC to acknowledge C diff infections as the pervasive and serious disease that it is, and will put our nation on the necessary path towards overcoming it. I’m proud to stand as a leading voice against C diff in Congress, and I look forward to working alongside the many like-minded and dedicated advocates in this space to see my legislation become law.
Specifically, if passed, the bill would:
- 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
What You Need to Know
Congresswoman Yvette D. Clarke introduced a bill to have Clostridioides difficile (C diff) recognized as a national notifiable infectious disease.
If passed, the bill will mandate states to report confirmed C diff cases and require Health and Human Services (HHS) to set standardized data elements for reporting, including demographic and clinical information.
The bill is named after Peggy Lillis. Her sons founded the Peggy Lillis Foundation to advocate for C diff awareness and prevention.
What is a Nationally Notifiable Disease?
Nationally notifiable infectious diseases are recognized through the Centers for Disease Control and Prevention (CDC), and there is a list of approximately 120 diseases and conditions that are tracked, including infectious diseases, bio-terrorism agents, sexually transmitted diseases, and noninfectious conditions. The list is tracked through the CDC's database, the National Notifiable Disease Surveillance System (NNDSS), and public health officials from local, state, and territorial public health departments who voluntarily report confirmed cases to the CDC.2 NNDSS is available to the public, and for those who are interested in learning more about specific outbreaks, people can go to the CDC’s national surveillance page.
Although C diff can be treated with antibiotics, it can be life-threatening and in fact, there are an estimated 30,000 deaths annually in the United States.1 It is highly contagious and can create outbreaks in hospitals, and long-term care nursing facilities.
“We are grateful to Congresswoman Clarke for introducing this legislation to improve our efforts to track C diff infections, which will allow us to take more direct actions to prevent C diff and save lives,” Lillis said.
As with all legislation, it will need Congressional support and need to be voted on in order for it to be enacted. There has not been any timetable set or follow-up announced at this point in time.
