By: Christian John Lillis
Last week, the Peggy Lillis Foundation hosted a historic convening of C. diff advocates and other stakeholders in Washington, D.C. Starting on April 8, PLF brought together 30 members of our Advocates Council from 14 states for three days of education, networking and advocacy. All 30 members either had C. diff themselves or seen a family member suffer or perish from this largely preventable disease. One advocate, Christina Fuhrman, not only survived C. diff herself but battled this superbug again four years later when her 2-year-old daughter became infected. The ground-breaking event made history as the largest single gathering of C. diff advocates in the United States.
On Monday, April 9, the advocates were joined at the Milken Institute School of Public Health by another 40 stakeholders for PLF’s 3rd Annual C. diff Summit. Participants attended learning sessions headed by leading experts in the fields of medicine, healthcare policy, aging, epidemiology and grassroots organizing. The morning presentations included:
- The new C. diff clinical and practice guidelines from the Infectious Disease Society of America and the Society of Healthcare Epidemiologists of America;
- An overview of the Centers for Disease Control and Prevention’s healthcare associated infection surveillance and reporting systems;
- A preview of the Alliance for Aging Research’s forthcoming report on HAIs in nursing homes, and;
- An introduction to PLF’s new campaign, Make C. diff Count.
Following the morning presentations, participants enjoyed lunch and the opportunity to network. The afternoon featured three panel discussions:
- The Future of C. diff Prevention & Treatment;
- Influencing the Federal Government to Fight C. diff; and
- Advocating to Win with Authentic Stories
Throughout the Summit, advocates spent time with others who understand the pain and suffering they had experienced. Because less than a third of Americans are aware of C. diff, and the primary symptom of diarrhea is considered taboo, the opportunity to share their stories was powerful. Advocate Bill Beerman, who lost his mother to C. diff, said, “It was one of the more memorable experiences of my long life.”
On Tuesday, April 10, PLF facilitated the first-ever C. diff Lobby Day on Capitol Hill. Twenty-five C. diff advocates met with 42 legislative offices in a single day. Advocates shared their personal experiences with C. diff as well as facts about and the reality of the disease with an array of senators, representatives and staff members. The advocates also urged action on Senator Sherrod Brown’s STAAR Act and asked for a commitment to maintain or increase funding for the agencies that work to combat C. diff and other HAIs.
Most of the advocates had never met with their representatives before. Despite a few initial nerves, they all took to it quickly and built their confidence up throughout the day. Reliving the pain and suffering that C. diff causes is never easy, but in reflecting on the experience, advocates found comfort in community and shared action:
“Through our pain and losses we have become a family on a mission. I am honored to be part of this mission and
family.” – Lucy Mead
“For me, the word of the day was ‘empowering.’ You really got to feel like you were doing something concrete. Can’t wait to do it again next year.” – Helen Beigel, PLF Board member
“The visits to Capitol Hill left me with a sense of accomplishment. I know some good was done, by me and everyone else.” – Bill Beerman
“I cannot tell you how impressed I was by the courage of those around me. Some of the attendees were dealing with current health issues – a healing broken heel, GI distress – and yet these beautiful people felt so empowered that they navigated Capitol Hill for the first time. We all went from a bit nervous to further driven, and the platform that PLF provided fueled a fire that will never go out. So, thank you.” – Christina Fuhrman
“I am in awe of the work, the people involved, and the impact that the Peggy Lillis Foundation is having specific to
increasing awareness of C. diff and its effects, changing the landscape in terms of making it not just acceptable but absolutely necessary to discuss in public, and improving outcomes as appropriate antibiotic use is advocated.” – Teri Hulett
The Summit and Lobby Day were a huge step forward in growing the movement to fight C. diff. We now have 45 advocates in 23 states, increasingly engaging in a range of activities to build a world where C. diff is rare, treatable and survivable.
We are grateful to all the presenters and speakers as well as the Milken Institute for hosting us. We are also thankful to our friends at 2U for providing the live stream of the Summit.
Again, our thanks to everyone who made the Summit and Lobby Day such a success.
Thank You to Our Summit Sponsors!
Thank You to Our Summit Speakers and Panelists!
Dr. Mini Kamboj, Memorial Sloan Kettering Cancer Center/SHEA
Dr. L. Cliff McDonald, Centers for Disease Control
Missy Jenkins, Alliance for Aging Research
Dr. Michael Mansour, Massachusetts General Hospital
Lynne Batshon, Society of Healthcare Epidemiology of America
Bill Franco, Antimicrobials Working Group
Elizabeth Battaglia, TOMI Environmental Services
Christina Fuhrman, C. diff Advocate
Josh Grehan, Finch Therapeutics
Dr. David Hyun, Pew Charitable Trusts
Amanda Jezek, Infectious Diseases Society of America
Hans Johnson, Progressive Victory
Kyle Kinner, Pew Charitable Trusts
Kathy Leith, Rebiotix
Dr. John F. Kokai-Kun, Synthetic Biologics
Catia Matos Ferreira, Pfizer
Jeanne Otersen, American Federation of Teachers
Barbara McGovern, Seres Therapeutics
Rachael Sparks, Xenex