By Christian John Lillis
On April 8, my organization, Peggy Lillis Foundation (PLF), will host 25 advocates from 14 states at our National C. diff Summit. The following day, we will also lobby on Capitol Hill for much-needed action. These advocates, who include stay-at-home parents, retired federal workers, nurses, and law enforcement members, have all had their lives marred by Clostridium difficile (C. diff). Several are among the nearly 500,000 Americans battling this preventable illness every year. Others have lost a loved one to it, as nearly 30,000 families do annually. They’re all committed to raising awareness of C. diff and needed policy changes to end its harmful impact.
PLF was founded by me and my brother, Liam, following the April 2010 death of our mother Peggy from a community-acquired C. diff infection. Mom was only 56 years old when a prescription of broad-spectrum antibiotics following a routine dental procedure caused her to acquire this deadly infection. We had never heard of C. diff prior to her being hospitalized for severe diarrhea. From the time her doctors gave us her diagnosis â toxic megacolon and sepsis caused by a C. diff infection â until her death was just 36 hours.
Mom was a kindergarten teacher who believed in lifelong learning and the power of being well-informed. Armed with those values, my brother and I researched C. diff doggedly. We wanted to understand what happened to our mother and what could be done to prevent it from happening to other families. Back in 2010, very little information was available on C. diff and there was no organization dedicated to its education and advocacy. With the help of our friends and family, we founded PLF in June 2010 to ensure our mother’s death wouldn’t be in vain.
Initially we focused on raising C. diff awareness and providing information to patients and caregivers. Back then, fewer than 20 percent of Americans had heard of it. Today it’s close to 33 percent. But it soon became clear that public awareness alone was not enough to make a substantial difference in the disease’s trajectory. We began to focus more on policy and healthcare practices that were contributing to the epidemic, including overuse of antibiotics which leads to antimicrobial resistance (AMR) and poor sanitation in healthcare facilities. We built relationships with healthcare workers, policy makers, and public health experts. We became engaged in advocating for increased public health funding, raising awareness of antibiotic stewardship, and better tracking and reporting of C. diff and multidrug-resistant organisms.
At the time, few patients and family members were engaged in this work. While a range of groups and coalitions, including professional societies like Infectious Disease Society of America, nonprofits like Pew Charitable Trust, and industry groups, were active in advocacy around antimicrobial resistant infections, I was often the only patient advocate in the room.
There are so many patients that are unaware of how AMR is intrinsically linked to C. diff. As a result, there is a great need to build a strong and motivated coalition of patients, professionals and advocates to unite in addressing the challenge of AMR. The Peggy Lillis Foundation, as well as many of our supporters joined the Antimicrobial Resistance Fighter Coalition, founded in 2017 to bring together world leaders, organizations and those affected by AMR to join forces, share stories, raise awareness and drive action towards combatting AMR.
The lack of patients and families in the fight against C. diff and AMR meant policies that could reduce the harm they cause were not on the public’s radar. It also showed up in the funding allocated from the federal government. For example, in 2016 the National Institutes of Health budgeted $3 billion for HIV/AIDS, whereas the combined budget for antibiotic resistant infections and C. diff totaled $438 million. Meanwhile, aggregate costs for just-hospitalized C. diff patients is estimated at $8.2 billion.
Determined to build a movement capable of confronting these challenges, in August 2015, we launched our Advocates Council and held our first National C. diff Advocacy Summit in New York. At that inaugural event, we provided 25 advocates with information on C. diff, the federal regulatory framework for dealing with C. diff, and how the epidemic intersects with other issues, including aging, antibiotic overuse and misuse, infection control, and the larger movement to end medical harm. We also trained these advocates on how to tell their stories effectively to raise awareness and inspire action by policymakers, health care workers, and the general public and how they can work in their local communities to educate patients, raise money and engage healthcare workers. It was a huge success, not only in providing useful information and training to the advocates, but also in building relationships among our advocates and healthcare workers, scientists, and other stakeholders.
Following that first Summit, advocates engaged in a range of activities to raise C. diff awareness and promote better policies, including:
• Participating in the successful campaign to ensure increased funding for CDIs and antibiotic resistance in the 2016 federal budget;
• Presenting their stories to healthcare workers at quality improvement meetings, hospital leadership meetings, and on webinars by professional societies and Medicare’s Partnership for Patients;
• Being featured in print, broadcast and online media stories about C. diff and antibiotic overuse, as well as publishing op-eds in a variety of local newspapers around the country
• Joining Lobby Days hosted by the Stakeholders Forum on Antibiotic Resistance and the Pew Charitable Trusts; and
• Testifying in front of their state legislatures in favor of bills that would increase reporting of C. diff by hospitals and nursing homes.
Last year, we moved our Summit to DC and added a federal Lobby Day. Twenty-five advocates met with 42 legislative offices in what was the first-ever C. diff Lobby Day. Advocates shared their personal experiences with C. diff as well as facts about the disease with senators, representatives and staff members. Most had never met with their representatives before. Despite a few initial nerves, they took to it quickly and built up their confidence throughout the day. In the months since, our advocates have remained in touch with the federal legislators and have begun building relationships at the state and local level.
Our advocates and larger network, including many healthcare professionals, also played a key role in preserving existing federal reporting standards. Last May, Centers for Medicare and Medicaid Services (CMS) proposed a rule that would have significantly reduced the reporting of C. diff and other healthcare-associated infections (HAIs). PLF submitted a public comment with over 300 signatories to CMS vigorously opposing the elimination of patient protection programs that report healthcare-associated infections, including C. diff. Our opposition was based largely on the fact that current reporting is insufficient. After strong pushback from many other individuals and organizations, CMS said on August 2nd that it will continue public reporting of HAIs.
Our 2019 Summit and Lobby Day builds on our many years of success. The Summit will feature presentations on top challenges to combating superbugs, the process of designating a disease as nationally notifiable, learning from recent state level successes in passing sepsis regulations, and new policies to end harm caused by C. diff. The next day our advocates and partners will be meeting with legislators from 14 states to educate them about C. diff and other antibiotic resistant infections as well as enlist their aid in combating these diseases more vigorously, including incentivizing greater Infection control efforts.
In the years since losing my mother, I have become convinced that ending the preventable harm caused by antibiotic resistant organisms is an “all-hands-on-deck” situation. We need doctors to be judicious in their prescribing of antibiotics and patients to stop expecting them. We need healthcare facilities to invest in the people, policies and technologies that prevent the spread of infections. We need federal and state public health agencies to educate the public on how these diseases can be prevented. We need scientists to continue pushing for innovative treatments and measures to prevent infections, including new antimicrobials and microbiome-based therapies. Most of all, we need our leaders to act swiftly and decisively to ensure that our country is responding to these public health threats.
I hope you will join us in our movement to fight C. diff.
Peggy Lillis Foundation’s 2019 National C. diff Summit will be held at Gallaudet University on April 8, 2019. It is free to register but space is limited. The event will also be livestreamed. To learn more visit, www.peggyfoundation.org.