Skip to main content

2021 C. diff Summit Puts Focus on Patients and Caregivers

Peggy Lillis Foundation for C. diff Education & Advocacy held our 6th Annual National C. diff Advocacy Summit virtually on April 20 and 22. As always, we had an array of knowledgeable and passionate speakers and presenters committed to the fight against C. difficile infections (CDI).

As we struggle to overcome the COVID-19 pandemic, the impact of infectious diseases on people afflicted with them, their families and communities is increasingly apparent. With that in mind, this year’s conference put a spotlight on C. diff patients and family members. The decision to highlight C. diff survivors and family members was also informed by the feedback we received on our petition to the Centers for Disease Control. Hundreds of C. diff survivors and caregivers responded to our petition urging the CDC to make C. diff a nationally notifiable disease, noting that they felt “unheard and unseen” by our healthcare system. So we decided to not only involve members of our Advocates Council more in planning this year’s Summit, we also had several of them speak on panels. The result was a C. diff Summit unlike any other.

Unique sessions included a keynote presentation from C. diff survivor and author of “What Doesn’t Kill You” Tessa Miller, which focused on the psychological toll of dealing with recurrent C. diff infections. We’ve known for some time that people who battle severe and recurrent C. diff end up with an array of mental and emotional issues, namely PTSD. However, these issues are generally not considered by infectious disease doctors or gastroenterologists when treating people with refractory or recurrent C. diff. Further, mental health care is unaccessible for the majority of Americans. So many who do suffer from post-CDI anxiety, are unable to get help. Epidemiologist and former ACT UP member Gregg Gonsalves explained how people have and can engage in advocacy to improve research, treatment and public awareness of diseases.

In addition to Tessa and Gregg’s contributions, this year’s Summit featured two sessions led or co-led by C. diff Advocates, including one on how to enhance the interaction between C. diff patients and clinicians, as well as our first ever “Ask An Advocate Anything.” These sessions dug into the dark underside of dealing with CDI; battling sepsis, caring for an ill parent, inability to eat or drink, as well as some notes of optimism. How clinicians can be better partners to patients who are battling C. diff. How survivors can share the hard-won knowledge they have with others.

We also heard from an array of scientists and clinicians, sharing the latest knowledge about C. diff infections, including:

  • The link between economic class and community-acquired CDI
  • The diagnostic, therapeutics and regulatory challenges in combating pediatric CDI
  • Preventing CDI through antibiotic stewardship
  • The unmet treatment need for CDI

Finally, we had two sessions explicitly dedicated to advocacy. One, “An Advocacy Agenda for Fighting Superbugs”, focused on recent and upcoming legislation like the Public Health Infrastructure Saves Lives Act (PHISLA) and the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act, both of which would have positive impacts on CDI surveillance, diagnosis and treatment. Our executive director Christian John Lillis gave a presentation titled “Disposable Seniors” that examined the four-decades bipartisan disinvestment in public health, coupled with a lack of concern for seniors, has led to an America that was a near-perfect environment for the COVID-19 pandemic to rage out of control.

If you couldn’t join us or want a refresher, you can watch all the session recordings on our website.

We are grateful to all the speakers, sponsors and over 200 participants who made our 2021 National C. diff Advocacy Summit a huge success.

Leave a Reply

Your email address will not be published. Required fields are marked *