5-Questions: Peggy Lillis Foundation
1. Can you tell our readers what Clostridioides difficile (C. diff) is and your personal connection to the issue?
C. diff is a Gram-positive, spore-forming bacterium that can colonize the human colon. It’s found in the environment in soil, air, water, human and animal feces. A small percentage of adults haver C. diff in their guts, where it exists with other bacteria, viruses and a host of microorganisms that we refer to collectively as the microbiome. When the microbiome is disrupted, most often by the use of antibiotics, the C. diff bacteria can reproduce rapidly. In reproducing, it gives off toxins that harm the lining of our colon. This is now a C. diff infection (or CDI). The symptoms of CDI include perfuse, watery diarrhea, fever, nausea, abdominal cramping, dehydration, and loss of appetite.
C. diff was first identified as a source of antibiotic-related diarrhea in 1978 but was mostly considered a “nuisance” disease dangerous only to the elderly. That changed in the mid-2000s when a new, far more virulent strain of C. diff caused outbreaks in North American and Europe. Today, there are half a million CDIs each year, and causes or contributes to 29,000 deaths in the United States.
In April 2010, my mother Peggy, a healthy, 56-year-old kindergarten teacher was prescribed clindamycin by her dentist following a root canal. A few days later, she became ill with diarrhea. She assumed it was a virus from one of her students. But the diarrhea persisted over the weekend, and we became concerned. She had an appointment with a gastroenterologist for that Tuesday, April 20. I agreed to take her. When I arrived, she was very sluggish. I was concerned that she was dehydrated. We decided to go to the emergency room.
Once there, the doctors determined that my mother had a dangerous infection called “C. diff”, and suspected she had toxic megacolon. I had worked in healthcare for years as an administrator and fundraiser but I’d never heard of this disease. Despite her being conscious and feeling a bit better as they gave her IV fluids, my mother was already battling sepsis. Over the next 24 hours, the doctors did all they could to reverse the sepsis, including removing her colon surgically. Sadly, once someone enters sepsis, their chances of survival are about 50%. My mother died on April 21, 2010 from sepsis resulting from a C. diff infection.
2. When did you found the Peggy Lillis Foundation and what is your mission and vision?
We started PLF the summer after my mother died. To be honest, neither me nor my brother can remember the exact day or conversation when we made the decision. I suspect that’s the result of the grief and shock we were experiencing in the wake of her death. But by that summer of 2010, we had a date for our first fundraiser. “Celebrating Peggy’s Life” was held on what should have been her 57th Birthday. So, we usually say we started in June 2010. Our vision is an end to the death and suffering that is caused by C. difficile and other healthcare associated infections. In pursuit of that vision, we are growing a national C. diff awareness movement by educating the public, empowering C. diff survivors and family members, and shaping policy.
3. November is C. diff Awareness Month. PLF created an excellent communications toolkit to celebrate the month. Can you tell us more about the campaign and what you would like our readers to do to help spread the word about this deadly bacterium? Can you tell us why the personal stories you highlight in the campaign are important?
In recognition of C. diff Awareness Month, PLF has a campaign called “See C. diff.” Though C. diff is the most common healthcare-associated infection – killing more Americans each year than HIV/AIDS – only 30% of Americans have heard of it. Every day we hear from people who say they’d never heard of it before their or their loved one’s diagnosis. That lack of awareness compromises efforts to prevent C. diff infection as well as delaying treatment, which can be deadly. Our goal is to increase the percentage of Americans who have heard of C. diff, so they can protect themselves and their loved ones. In particular, we want people to understand the connection between antibiotic use and C. diff.
As you know, about half of all antibiotics prescribed are unnecessary. And we have a false perception that they are without risk. We want to challenge that, while also highlighting other risk factors such as being over 65, staying in a hospital or nursing home, being immunocompromised or even using common antacids. Since diarrhea is a fairly common symptom of any number of illnesses, we want people who have these risk factors to question if they might have C. diff, so they seek treatment quickly.
Last year, we reached about 100,000 people, almost exclusively through grassroots activity. So far this year, we’ve already exceeded that number just on social media. We’re aiming to reach at least 250,000 before the end of the month. We have some excellent partners and have invested in some advertising to complement our grassroots efforts. If all goes well, next year we may aim for 1 million.
For readers who want to help, they can visit Cdiff.org where there is a ton of videos, fact sheets, infographics, and other resources they can share and be part of the campaign.
Human beings are storytellers. Growing up in my mother’s large, Irish-Catholic family in Brooklyn, to be heard you had to be a good storyteller. My grandfather on my mother’s side was a great storyteller. He passed away in 1994, and we still share stories he told us at family gatherings. So stories are “sticky.” We remember them and relate to them far more than we do numbers or statistics. I see the power of telling my mother’s story when a nurse or doctor comes up to me at a conference and tells me about how it affected them. Or when a patient writes us to say that my mother’s story or another story on our website gave them hope.
We prioritize the personal story of C. diff survivors or people who we’ve lost because it draws people in, so we can educate them. Particularly today with social media, the image of a person draws much more attention than text. “See C. diff” has a sub-campaign, “You Know C. diff,” which features photos of our Advocates Council members with their job, marital status, hobbies and so on, and then reveals that they have had C. diff. This campaign helps people see that this isn’t an abstract threat, or something that only happens to elderly people. It can and does happen to anyone. It also breaks down the stigma of a diarrheal disease.
4. The Peggy Lillis Foundation is very involved in pushing for federal action on C. diff. What would you like to see Congress enact in the next session? What more could federal agencies like CDC and FDA be doing more of? Do you have an ask of the White House once President-Elect Joe Biden takes office?
The COVID-19 pandemic has revealed that our country’s healthcare and public health systems are not fit for purpose. This isn’t an accident. It’s a bipartisan failure of our political leadership over the past 40 years to invest in public health. For Congress and also state houses, funding public health from infrastructure to staffing to state-of-the-art technology is critical. A big part of our 2019 Lobby Day was asking members to support increasing funding for the CDC by $1 billion over ten years, so it could modernize our public health data infrastructure. Right now, we have maybe 50 different systems at the state level, that are trying to incorporate data from electronic medical records that capture it differently. And, we have instances where states are still collecting case reports of C. diff and other infectious disease by fax and mail! So, regardless of the economic impact of the pandemic we need investment.
CDC, particularly its Division of Healthcare Quality Promotion, has really done an excellent job of engaging with patients and advocates over the past few years. Obviously, the agency has had a rough time during COVID-19, but that seems largely due to political interference. The civil and public health service professionals at CDC are excellent. It’s been heartbreaking to see them sidelined when we needed them most. Still, we are currently circulating a petition urging CDC and its partners to designate C. diff as a Nationally Notifiable Disease. That designation would make case reporting mandatory for every CDI, whereas the current tangle of federal and state laws leaves lots of gaps. We’d like to see public reporting of CDIs in as close to real time as possible, so that patients and communities know when there’s an outbreak.
Like CDC, FDA has been overwhelmed by COVID-19. But the agency has also dragged its heels on developing a coherent plan for fecal microbiota transplants (FMT). FMT, which is the practice of taking feces from a healthy donor and infusing it into a patient with C. diff to restore their microbiome, is the treatment of last resort for C. diff patients. Since 2013, FDA has hedged on regulating FMT and microbiome therapeutics based on the practice. It developed guidelines but then decided to allow enforcement discretion so hospital and private stool banks to operate outside of them. Specifically, it’s not requiring the filing of an Investigational New Drug application, which would create a significant burden for providers. It’s created a lot of confusion for providers and patients.
I’d like to see FDA develop a roadmap that preserves access to FMT as it’s currently practiced until we have one or more microbiome therapeutics available to patients. But more than anything I’d like to see the FDA engage patients and family members in meaningful ways. Over the past seven years, FDA had four public meetings on FMT, but it wasn’t until the fourth one last November that I and another patient advocate were actually put on the agenda. That’s a gross oversight.
For President-Elect Biden, I’d like to see him use this terrible pandemic, as a reason to push for the kind of investment in public health I’ve been talking about. The president has a bully pulpit that he can use to raise awareness and bring pressure to bear on Congress. So far, we’ve lost about 250,000 Americans to COVID-19. It’s incumbent on the Biden administration to ensure that those deaths are not in vain. People need unimpeded access to healthcare. We need to bring our public health infrastructure into the 21st Century. We need to help our fellow Americans understand that public health is a collective endeavor. Infectious diseases don’t care about our political preferences. Prior to COVID-19, we were losing hundreds of thousands of Americans every year to preventable healthcare associated and, increasingly antibiotic resistant, infections. That was unacceptable before COVID and is unconscionable now.
5. What freaks you out most about C. diff? What gives you hope?
From my perspective, C. diff came out of nowhere and killed one of the most important people in my life. It’s been over a decade and I miss my mother every day. It’s not as acutely painful as it was in the first few years, but when my nephew was born, I was so excited but also devastated that he would never know his grandmother. In the decade since Mom died, about 300,000 other families have experienced a similar loss. What scares me if the possibility of a new, even more deadly strain. I’m also concerned that though we have new antibiotic and microbiome therapeutics that should be available soon, it’s going to be a fight to ensure patients have access to them. No one should suffer or die from a preventable and treatable infection.
My mother, despite having had a fairly tough life as a single parent, was an optimist. I am not but I am a person who has a lot of hope. The new therapeutics, some of which may be available next year, give me hope. The growing number of clinicians and scientists who are committed to eliminating HAIs like C. diff gives me hope. That we’ve been able to take the tragedy of my mother’s death and build an organization that is the leading edge of a growing movement to fight C. diff gives me a lot of hope. But, mostly, it’s the members of our Advocates Council, everyday people, who have been harmed by or lost a loved one to C. diff, who truly inspire me. Watching a young mother who never went to college, take the education and skills we provide, and then testify in front of the Presidential Advisory Council on Combating Antibiotic Resistant Bacteria, gives me a ton of hope. Or taking a guy who works as a radiology tech, and lost his mother too, up to Capitol Hill and see him so fired up to talk to his representatives gives me hope. My mother was a tough lady. She didn’t back down from any challenge. So watching her legacy grow through these amazing people, who push themselves out of their comfort zones to collectively fight this disease, is what really gives me hope.