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Empowering Change: Highlights from the 9th Annual C. diff Advocacy Summit & Lobby Day

On April 15th, Peggy Lillis Foundation convened its ninth annual National C. diff Advocacy Summit in Washington, D.C. This year, we welcomed fresh perspectives and insights into the difficulties patients and healthcare professionals are facing in the battle against C. diff, as well as some new strategies to prevent and treat the deadly infection.

(L-R: Mary Miller, RN, and Cindy Hou, DO)

What’s New in C. diff

Presentations ranged from more science-based, such as “Breakthrough Binding Proteins: A Paradigm Shift in Primary and Recurring C. diff,” to ones emphasizing public awareness, like “Reaching Out: Educating the Public on AMR.” We also proudly hosted several panels that featured patient voices, including our Advocates Kee Kee Buckley, Pamela McCollister, Carol Raye, and Maryann Webb. Watch the event on our YouTube channel here to see these sessions and more (now with improved recording quality!). 

Thank you to sponsors, presenters, and attendees whose participation and support are key to the Summit’s success.

(L-R: Kee Kee Buckley, Carol Raye, and Pamela McCollister)

Advocacy in the Name of Change

The day after our Summit, April 16th, a group of 11 PLF Advocates took to Capitol Hill for a day of advocacy in Congress. C. diff experts, survivors and their loved ones met with staff and members of Congress to share their stories and promote the sponsorship and passage of the Safe Step (S 652/HR 2630), HELP Copays (S 1375/HR 830), and PASTEUR (S 1355/HR 2940) Acts. We met with 17 offices last week and continue to hold virtual meetings with Advocates who could not join us in person. Many offices were amenable to the Safe Step and HELP Copays measures and also indicated interest in the soon-to-be-introduced Peggy Lillis C. difficile Inclusion Act.

The Peggy Lillis C. difficile Inclusion Act would mandate the addition of C. diff to CDC’s Nationally Notifiable Diseases Surveillance System (NNDSS). NNDSS tracks numerous infectious diseases across the US, including foodborne illnesses, sexually transmitted infections, and many hemorrhagic fevers, for reference. While C. diff infects half a million Americans every year, kills 30,000, and has annual attributable healthcare costs that are the second highest of CDC’s five topmost urgent antimicrobial-resistant (AMR) public health threats, it remains one of only two pathogens with that classification that are not a part of the NNDSS. Tracking C. diff would allow for greater research and prevention to reduce harm to the multitudes of people impacted by the deadly infection every year.

Congresswoman Yvette Clarke (D-NY), whose congressional district includes PLF, and who sits on the influential House Energy & Commerce Committee, plans to introduce the legislation soon. We are working closely with her and her staff to build support for the legislation and will share updates when the bill is officially introduced with instructions on how to ask your Representatives to cosponsor the bill.

(L-R: Peta-Gaye Greene, Vincent Young, MD, PhD, Victoria Houston, Christian John Lillis, and Jennifer Ryan)

Be a C. diff Savior

This year’s Summit and Lobby Day events were a great success, bringing together a passionate and driven community of C. diff academics, industry professionals, clinicians, and patient advocates in the spirit of change and in memory of our namesake, Peggy Lillis. Where the Summit provided grounds for constructive discussion around the field of C. diff treatment research and barriers to care, Lobby Day built on our collective motivation. It allowed us to deliver impassioned and fruitful arguments to our Senators and Representatives. While we look forward to giving a more in-depth report on legislative outcomes, we leave you now with the words of CEO Christian’s remarks from last Monday:

“Whether you’re a physician, a pharmacist, a C. diff survivor, or a family member, you are playing a crucial role in changing how C. diff and resistant infections are surveilled, prevented, and treated. Whether you work in a hospital, a government agency, a diagnostics company, a biotech firm, or a pharmaceutical company, you can be a savior.

All you need to do is be like Peggy: protect the vulnerable, stand up to bullies, and shelter those who need it.”

Christian John Lillis
Peggy Lillis

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