In pursuit of our mission to build a national C. diff awareness movement by educating the public, empowering advocates, and shaping policy through a variety of efforts.
Executive Director Christian John Lillis speaking at the Center for Disease Control.
Some of our programs are open to volunteers, and we always welcome the participation of C. diff survivors, caregivers, and experts. Please learn about our programs and how you might get involved below.
See C. Diff
In 2019, to commemorate “C. diff Awareness Month,” we launched a public awareness campaign, “See C. Diff,” to raise awareness of this preventable but all too often deadly infection. Though C. diff is the most common healthcare-associated infection, only 30% of Americans have heard of it. This lack of awareness compromises efforts to prevent C. diff infection and delays treatment, which can be deadly.
Through See C. diff, PLF raises awareness of C. diff infection, its risk factors, symptoms, and treatments. Utilizing an array of online, print, paid, and earned media, PLF partners with leading nonprofits, professional associations, industry leaders, and our own network of C. diff advocates to reach the 70% of Americans who don’t yet know that C. diff is a potential threat. In 2022, we reached more than 16 million people. Click here to learn more or join the campaign.
C. diff Stories
When we’re first diagnosed with an unfamiliar infection, we want information. But we also want to understand what we’re facing. To this end, PLF has collected over 150 stories from C. diff survivors and caregivers. These stories provide insight for people battling C. diff and their caregivers. Some stories are cautionary tales that demonstrate the need for patient advocacy. Others clearly show that most people who battle C. diff will recover and that there is life beyond C. diff. Please visit our C. diff Stories page to learn more and share your story.
The media, from newspapers and podcasts to television and Instagram, plays a powerful role in raising C. diff awareness. In partnership with patients, caregivers, physicians, scientists, and policymakers, PLF leverages a wide array of media to raise C. diff awareness far and wide. In addition to publishing multiple editorials and essays, our work has been featured in publications including Consumer Reports, USA Today, Forbes, the AARP blog, and Inside Health Policy. We have also been featured on CNN, CBS Evening News and many podcasts. Peggy’s story and our work have also appeared in “Missing Microbes: How the Overuse of Antibiotics Is Fueling Our Modern Plagues” by Dr. Martin Blaser and “Flush: The Remarkable Science of an Unlikely Treasure” by Bryn Nelson. Visit our News & Events page for more media coverage.
PLF has developed two guides with useful information reviewed by our Scientific Advisory Council for medical accuracy. The Care Guide contains information on infection prevention, diagnosis, treatments for C. diff, and more. The Nutrition and Lifestyle Guide includes tips and recipes to help C. diff patients meet nutritional needs, recover from infection, and restore their gut microbiome.
Peer Support Network
Peggy Lillis Foundation’s Peer Support Network is an online support program for people affected by C. difficile infections (CDI). Individuals are connected with experienced mentors who have survived or cared for someone with CDI. Peer supporters offer guidance and assistance based on their lived experiences with C. diff but do not serve as medical or counseling professionals or dietitians. If you are in a medical emergency, please call 911. If you are in a mental health crisis, please call your local crisis center or the National Suicide Prevention Lifeline at 800-273-8255.
To apply for Peer Support, please click below.
The Peggy Lillis Foundation’s Advocates Council
The Peggy Lillis Foundation’s Advocates Council is a nationwide network of individuals whose lives have been impacted by a Clostridium difficile (C. diff) infection, whether directly or through a loved one. Comprised of volunteer community leaders, the Council is the nucleus for our national movement to raise C. diff awareness by educating the public, empowering advocates and shaping policy.
Supported by PLF, Advocates engage in a wide range of activities to educate the public, support and empower CDI sufferers and caregivers, lobby for CDI-related laws and regulations at the state and federal level, and help build a powerful and sustainable movement.
National C. diff Advocacy Summit
Since 2015, PLF has convened an annual Summit for C. diff survivors, caregivers, clinicians, researchers, and policymakers. Our Summit serves a dual purpose of educating and training new and returning members of our Advocates Council and building a network of scientists, clinicians, policy experts, and companies aligned in our fight against C. diff.
Public policy plays a crucial role in combating infectious diseases like C. diff. From government programs that insure tens of millions of Americans like Medicare and Medicaid to funding for basic research through the National Institutes of Health, health policy can make an enormous difference in how seriously C. diff is taken, how available diagnostic tests are, and the kinds of treatment that are covered. Health policy also plays a key role in determining minimum infection control standards, infectious disease surveillance, and countless other programs and regulations that can help or hinder C. diff patients. Following the path tread by healthcare activists from HIV/AIDS to breast cancer, the Peggy Lillis Foundation activates our Advocates and supporters to take action on critical legislative, funding, and regulatory issues.
Advocates Leslie Gilford and Devan Mullins
Annual C. diff Lobby Day
Since 2018, PLF has convened the sole Lobby Day for C.diff on Capitol Hill. Every year, we bring C. diff survivors and caregivers from all across the country to meet with their representatives. Our advocates meet with their Senate and Congressional offices to discuss funding our critical public health agencies, legislation to make diagnostics and treatments more accessible, and to invest in new preventatives and treatments, including antibiotics, among other issues. For example, our Advocates helped successfully prevent the repeal of C. diff reporting by Medicare and Medicaid. If you want to join our annual Lobby Day, please apply to our Advocates Council.
Making C. diff Count
Peggy Lillis Foundation believes that every American who is harmed or dies from a healthcare-associated infection (HAI), including clostridium difficile infections, deserves to be counted. Because of gaps in infection and mortality reporting at the state and federal levels, tens of thousands of Americans are not included in official estimates.
We aim to dramatically increase public reporting of C. diff and other healthcare-associated infections to ensure that every American who suffers and dies from these preventable diseases is counted. To achieve our goal, we will work to require that C. diff and other HAIs are recorded on death certificates; advocate for the modernization of nationally reportable disease laws; expand and update state public reporting laws, and increase funding for surveillance, reporting and public education at state and federal levels.
To date, we have led a petition that has collected over 2,000 signatures. More importantly, we got report language tasking CDC with exploring ways to expand C. diff reporting, including potentially adding it to the list of Nationally Notifiable Diseases.
Legislative & Regulatory Reform
Legislative and regulatory reform has been a key part of PLF’s work for nearly a decade. In addition to our successful advocacy around Medicare and Medicaid support, PLF has brought patient power and perspectives to a range of legislative and advocacy efforts, including:
- President’s Advisory Council on Combating Antimicrobial Research Bacteria (PACCARB): Our executive director testified before PACCARB in 2017, sharing Peggy’s story and asking for increased focus on C. diff and antibiotic stewardship. In 2019, our Board member Christina Fuhrman also testified before PACCARB.
- PLF’s executive director was among the three patient advocates who attended the 2015 White House Forum on Antibiotic Stewardship.
- PLF Advocates have submitted public comments to the American Dental Association, urging a decrease in the use of prophylactic antibiotics.