By: Christian John Lillis
On Thursday, April 27, 2017, 60 people attended the Peggy Lillis Foundation’s (PLF) second Advocates Summit & National Strategy Meeting in New York City. Experts in the fields of medicine, public health, activism, microbiology and more came together to offer ten fascinating presentations and panel discussions to help 20 volunteer C. diff Advocates enhance their activism and leadership.
Our Advocates Council, comprising more than 30 individuals from across the United States whose lives have been devastated by a C. diff infection (CDI), serves as the nucleus for our national movement to fight C. diff. Their personal experience with CDI puts them in a powerful position to drive meaningful change with heartfelt storytelling and passionate advocacy. Knowing the shocking lack of awareness surrounding CDI and cultural taboos relating to discussing its symptoms, our Advocates are poised to have an enormous impact by raising awareness with and educating both healthcare workers and laypeople.
Advocates also shape public policy. PLF is currently working towards improved reporting regulations for CDI in New York and Ohio. Our Advocates play a critical role in these efforts by sharing their stories with their legislators and encouraging their communities to take part in this grassroots activism as well.
This Summit was a chance for Advocates to expand their activist tool kits, as well as build community with each other as well as leaders from health policy, industry, academia, and the law. Advocates joined us from across the country for informative and engaging presentations and panel discussions, including:
- An overview of C. diff infections,
- How advocates can lobby legislators and regulators on infectious diseases like C. diff,
- How survivors and loved ones are organizing to fight C. diff in Ohio,
- The National Academy of Medicine’s new framework for patient and family involved care, and how we change healthcare culture to be more accountable around patient safety and antibiotic use,
- How sepsis survivors and family members lead programs across the country,
- The opportunities and risks for existing and proposed transparency, incentive programs, and patient protections in the Trump era,
- How patients, caregivers, policymakers, healthcare workers, and industry collaborate to combat C. diff infections,
- How hospitals, physicians and other providers can preserve antibiotics and how patients/caregivers can help,
- What legal recourse patients and family members have for holding facilities accountable for transmitting or precipitating a C. diff infection, and
- How the fight against C. diff will evolve in the future.
This year PLF streamed the panel discussion through Facebook Live, allowing 500 people to view parts of the Summit. Advocates and presenters have been unanimous in their praise for the Summit, and in the need to build a nationwide movement to fight C. diff. Attendees have said:
- “I feel empowered to ask questions about the use of antibiotics with my providers and can encourage others to do the same.”
- “Great panel — nice mix of science, the pressures physicians are under to prescribe ‘something’, and communication challenges and strategies for change.”
- “This helped so much! I want to cover all aspects of advocacy for PLF. In doing so, some areas (such as policymaking) are out of my comfort zone. I’ve never been one to let that stop me. All the information made me ready to begin without pause.”
- “I now have the confidence to contact lawmakers in my state.”
PLF’s executive director said, “This Summit exceeded our expectations for education and movement building. We are so grateful to our Advocates who traveled to be with us in person as well as those who watched our live stream. We were excited to have such high caliber speakers and panelist sharing their knowledge, experience and insights with our Advocates and each other. Of course, none of this would be possible without our generous sponsors.” A full list of our sponsors and speakers is below.
If you couldn’t watch the live stream, you can watch all the panel discussions on PLF’s YouTube Channel here: 2017 Advocates Summit Videos. PLF will also be updating our Tools and Resources page for Advocates in the coming weeks to include Summit content. Meanwhile, we invite you to look at pictures from the event: Photos from the 2017 Advocates Summit.
2017 Summit Sponsors
2017 Summit Travel Partner
2017 Summit Presenters & Panelists*
Paul Alper, EHCO
Olga Aroniadis, MD, Montefiore Medical Center
Lynne Batshon, SHEA
Chuck Bell, Consumer Reports
Larry Brandt, MD, Montefiore Medical Center
Ilene Corina, PULSE of NY
Sara Cosgrove, MD, Johns Hopkins Medicine
Chris da Costa, MD, Synthetic Biologics
Catherine Duff, The Fecal Transplant Foundation
William Franco, Antibiotics Working Group
Tom Heymann, Sepsis Alliance
Lauri Hicks, DO, Centers for Disease Control
Bruce Hirsch, MD, Northwell Health
Gerard Honig, PhD, Crohns & Colitis Foundation
Eve Humphreys, SHEA
David Hyun, MD, Pew Charitable Trusts
Amanda Jezek, Infectious Disease Society of America
Hans Johnson, Progressive Victory
Jenelle Krishnamoorthy, Merck
Christian John Lillis, Peggy Lillis Foundation
Tara Montgomery, Consultant
Jason Newland, MD, Washington University
Becky Salay, Trust for America’s Health
Niall Wallace, Infonaut
Susan Watkins, Sanofi Pasteur
*Affiliations are for identification purposes only.