The patient advocacy organization has events in place and is ready to launch its annual C diff awareness campaign.
November is C diff awareness month, and with it, the Peggy Lillis Foundation (PLF) for C diff Education & Advocacy will continue its work that it has been involved in for many years. This year, the patient advocacy organization is kicking off the awareness month with its annual gala on November 3, and it will also launch its fifth “See C diff” campaign. The gala is PLF’s cornerstone event for fundraising to support the foundation’s efforts to combat this health care-associated infection.
“We’ve seen enormous progress for C diff patients in the past year, which we are excited to celebrate,” PLF’s Cofounder and Executive Director Christian John Lillis said in a statement. “But we remain committed to raising C diff awareness, empowering patients and their caregivers, and fighting for the policy changes required to end this epidemic.”
The gala will be held at 26 Bridge in Brooklyn from 7-11 pm this Friday evening, and feature a cocktail reception, full dinner, casino games, and more. The foundation’s gala brings together C diff survivors, clinicians, industry, and various stakeholders. Tickets for the event are on sale now. The foundation will be presenting awards honoring and thanking those who have been dedicated to fighting, researching, and raising awareness for C diff. This year’s honorees include the Leadership Award recipient, Sahil Khanna, MBBS, MS; Innovator Award recipient, Kevin Garey, PharmD, MS; and Advocate Award recipient, Pamela McCollister.
In addition, PLF will be hosting a “State of C diff” virtual townhall on November 15, which will look at the progress made in the past year, as well as the challenges that remain for C diff patients, survivors, and their caregivers. The town hall will be led by Paul Feuerstadt, MD, with additional speakers to be announced. Registration is free.
Lillis says one of the issues for C diff and infectious disease overall is the limited relationships between patient advocacy organizations and professional societies.
“In many other disease states, whether it's oncology or diabetes, there is a strong collaboration between professional societies, clinicians and patient advocacy groups,” Lillis said. “And we don't really have that in infectious disease. There are some examples, like in HIV or Hep C, where it has been built to some extent. But because ID physicians are often consulting on acute infections, they don't tend to have the same relationships to patients as people who treat cancer or heart disease to where they have an ongoing relationship. And, unfortunately, the downstream effects of that is patients don't develop a sense of the importance of infectious disease physicians, and the critical role that they play in our health and our wellbeing.”
Lillis believes it is important to raise awareness and points to the numbers to remind everyone about the seriousness of C diff. He says 60% of Americans have not heard of C diff, but that it is the number 1 health care-associated infection in the country. He also says it causes half a million infections and approximately 30,000 deaths annually.
Another aspect he points to is that hospital-associated C diff has declined and community-acquired C diff has increased.
“So now people are getting an illness they've never heard of in the community, and they go to an urgent care clinic, or they go to the ER, and they basically take whatever the first drug they're offered is, without having the knowledge to say, ‘well, I'd rather have this better treatment’…We have 2 new microbiome therapeutics approved, and they're focused on restoring the gut microbiome to help prevent more recurrences. But patients have to know those drugs exists, and they have to understand the disease. And so, I think it's critically important that we continue to push not just for patient education and patient assistance, but also for something like patients being offered the best possible drug, not the cheapest drug,” stated Lillis.
Contagion spoke to Lillis at the recent IDWeek conference in Boston and he discussed what health care needs to understand about the patient experience and rethinking the approach to clinical treatment.