Rare Community Profiles: Peggy Lillis’ Legacy: How the End of an Extraordinary Life Launched a Foundation for C. Diff Education, Awareness, and Policy

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Peggy Lillis’ Legacy: How the End of an Extraordinary Life Launched a Foundation for C. Diff Education, Awareness, and Policy

Margaret Mary “Peggy” Lillis was a remarkable force. Born as the third of nine children in a working-class, Irish Catholic family in Brooklyn, Peggy had a kindness that emanated from her from when she was young—and a commitment to supporting the people around her wherever she went.

She had two sons, Christian and Liam, and separated from their father when the boys were five and two years old. Despite the obstacles that she faced, Peggy moved steadfastly forward in her pursuits. She put herself through college, waited tables to supplement her family’s income, supported Christian as he pursued his bachelor’s degree (he was the first in his family to receive his degree; Peggy was the second), and eventually became a kindergarten teacher. Her goal was to advocate for students in the public education system.

But her care and her love for her community went much further than that. Christian reminisces:

“We didn’t have much growing up. We were quite poor and on welfare for seven or eight years. But we never felt poor. My mother did everything that she could to make sure that we were settled, happy, and taken care of. She raised us to be tough but have tender hearts, and also to look out for people who were less fortunate than we were.

Her perspective was that once you have power, strength, or community, it’s up to you to stand up for the next people who need help. There were always people sleeping on our couch when they needed a hand. Our mom was the second mom to lots of our friends. She was funny, she was warm, she had no tolerance for bullshit, and she bought every single one of her 17 nieces and nephews a present for the holidays. My mother was just an incredible person. She was so loved. She died when she was 56 but she crammed so much into those 56 years and helped so many people.”

Peggy Lillis passed away in 2010 from a Clostridioides Difficile (C. diff) infection, but her spirit still resounds today. The Peggy Lillis Foundation, founded by Christian and Liam to build a nationwide C. diff awareness movement, educate the public, and spur policy, is working to create a world where C. diff infections are better known, understood, more treatable, and more survivable than they are today. Recently, Christian sat down with Patient Worthy to discuss the Peggy Lillis Foundation, what C. diff is, and the importance of raising awareness.

Peggy’s Story

In 2010, Peggy visited her long-time dentist to undergo what should have been a routine root canal procedure. It was Monday; that night, she took her prophylactic clindamycin to ward off an infection and went to Touro College to work towards her Master’s degree.

By Thursday, she had a nagging feeling that something wasn’t quite right—she just felt “off.” She ate some soup and went to bed but woke up at 4 am with urgent diarrhea. At first, Peggy wasn’t too concerned. She didn’t get sick often—maybe twice a year—but as a teacher who worked with five-year-old students, she figured she just picked something up.

Her primary care physician prescribed a prescription-strength anti-diarrheal medication without seeing her. Says Christian:

“Nobody connected the antibiotics she was on and the diarrhea. So she kept taking the antibiotics alongside this prescription-strength Imodium. By Monday, her symptoms hadn’t resolved so she made an appointment for the GI doctor. I showed up to drive her and she didn’t seem like herself. My mom was very quick-witted and sharp, but that day she was extremely lethargic.”

Worried that Peggy was profoundly dehydrated, Christian recommended that his mother go to the emergency room instead. She joked that she had great insurance, so why not call an ambulance? When the ambulance arrived, the medics quickly called another ambulance for life support. Peggy’s blood pressure was 70/40; they were worried she would code.

At the hospital, Christian called his aunt, a nurse, who met him there. The doctors ran some tests before giving Christian the news:

“My mom’s white blood cell count was 40,000; the normal number is between 4,500 and 11,000. She was in borderline septic shock and her kidneys weren’t working well. They said they thought it was caused by a bacteria called C. diff. My aunt was shocked, saying that my mom hadn’t been in the hospital since she gave birth to Liam. I now know that there’s a myth that falsely says that C. diff can’t occur in people who are young or who haven’t been hospitalized recently.”

What is C. Diff?

Christian explains that Clostridioides difficile (C. diff) is:

“A gram-negative spore-forming bacterium. What that means is that it’s found in nature. You can find it in soil. UT Houston researchers went to park benches to swab and found C. diff everywhere.  Spore-forming means a vegetative state and a spore/seed state. Spores can live on surfaces for years. You can ingest the spores and not realize it. 3-5% of the population is colonized at any given time, but not everyone gets sick because the spores are held in check by the rest of the gut microbiome. Most newborns have C. diff in their intestines, but by 2-3 years of age it’s no longer detectable. Most often, people take antibiotics or something that messes with immunity—proton pump inhibitors for GERD or chemotherapy—and, with all the good bacteria killed off, the C. diff grows and gives off damaging toxins that inflame the colon and lead to severe diarrhea.”

People with mild C. diff infections may experience abdominal cramping, tenderness, and watery diarrhea 3+ times per day for more than one day. In more severe infections, people may experience watery diarrhea up to 10-15 times per day, severe abdominal cramping and pain, rapid heart rate, dehydration, nausea, fever, increased white blood cell count, appetite loss, and blood or pus in the stool.

For about 60-70% of people with C. diff, an additional antibiotic treatment for 7-10 days will take care of the infection. However, treatment is ineffective for the remaining 30-40%; either the C. diff recurs or never goes away, a condition called refractory C. diff. Christian shares:

“At the Peggy Lillis Foundation, we hear from the people who are dealing with recurrent or refractory C. diff. There are ways to approach it: additional antibiotics, a six-week course of antibiotics, antibiotic tapers. For people who don’t respond, the FDA has approved two microbiome therapies based on the idea of fecal transplants: one that is orally administered and one that is rectally administered.”

Unfortunately, as in Peggy’s case, treatment is not always sufficient and C. diff can be fatal. A 2023 study published in BMC Infectious Diseases suggests that C. diff infections result in an estimated 30,000 deaths annually in the United States.

A Rush to Treatment

After doctors diagnosed Peggy with C. diff, they placed a central line and began administering fluids. Peggy’s condition seemed to decline, but she maintained her wit and charm. Christian laughs as he shares:

“Once she started getting fluids, she was mad that she couldn’t have a Diet Pepsi.”

Over 50 people arrived at the hospital to see Peggy throughout the day. Doctors told the group that she was the sickest person in the hospital at that moment. By that evening, doctors wanted to intubate Peggy to scan for a toxic megacolon, but they were afraid that she was too unstable and might not survive. Christian and Liam agreed that it needed to be done to give their mother a fighting chance. Says Christian:

“That was the last time we ever spoke to her and could have her speak back to us.”

If Peggy’s condition improved overnight, the family would have more options. If not, the doctors would have to perform a colectomy in an attempt to save her life. By 6am, the choice was clear: doctors needed to remove her colon.

The colectomy went better than expected, but Peggy’s health continued to decline. Her blood wasn’t oxygenating properly. By 5pm, she entered into multi-system organ failure. Her loved ones crowded the hospital, heading two-at-a-time into the ICU to tell her how strong she was.

The ICU doctors asked the family to step out. Thirty minutes later, Christian, Liam, their friends, family, and everyone who held Peggy dear to their hearts learned that she had died from sepsis, a complication related to C. diff. Christian shares:

“It was devastating. I spoke to her almost every day and, to this day, it is the worst thing that has ever happened to me.”

A testament to the mark that she made on the world, over 500 people came to her wake. When people asked what happened, Christian told them that Peggy had developed C. diff from antibiotic use and doctors hadn’t been able to catch it in time.

In the aftermath of Peggy’s death, Christian and Liam learned of two other people in the neighborhood who had died of C. diff: the mother of a family friend and a man successfully treated for prostate cancer who contracted C. diff at the end of chemotherapy. Suddenly, says Christian:

“I began digging into it. There were no patient organizations. Information from the CDC said that what happened to my mom wasn’t possible. C. diff only happened to people who were immune-compromised or 65 or older. We could not accept that her death would be in vain, and I could not accept that awareness wasn’t being raised. Liam and I put our heads together and decided to start the Foundation. Our first event was that October on what would have been my mom’s 57th birthday.

The Peggy Lillis Foundation

When Liam and Christian initially founded the Peggy Lillis Foundation, only 25% of Americans had ever heard of C. diff. Public awareness has since risen to 33%, with the Foundation aiming to increase it to 50% by the end of 2024. When asked why awareness is so critical, Christian shares:

“C. diff only accounts for 25% of diarrhea in hospitals, but if you’re in the hospital, doctors may think about it or detect it. But if you’re in a situation like my mom, you’re taking antibiotics, get diarrhea, and probably don’t connect the two. So if you have bad healthcare or poor insurance, you can be set up for potentially life-changing or devastating outcomes. We want people to be aware that antibiotics are not without risk. Forewarned is forearmed. More so, we need people to be aware so that we can advocate for better treatment, surveillance, and improved antibiotic stewardship.”

Currently, the Foundation is focused on three particular tenets: public awareness, empowering advocates, and shaping policy. The first tenet is explained above. In terms of empowering advocates, the Peggy Lillis Foundation recruits people who have had C. diff, lost a loved one to C. diff, or dealt with C. diff as a caregiver. If anybody is interested in becoming an advocate, Christian says:

“If you have a fire under you, we can help you find a way to use it.”

The Foundation’s annual summit invites 30 advocates for a day of education and networking with scientists and policymakers. The Foundation began an annual Lobby Day in 2018 where they speak with representatives on Capitol Hill about the importance of policy changes. Says Christian:

“The NIH spends $7-8B every year on HIV research. What we’re looking at is lobbying the regulatory agencies to reasonably apportion research dollars to direct funds towards C. diff. Additional policy changes we’d like to see are advocating for the passage of the PASTEUR Act, which is a novel way to fund new antibiotics. The government would pay companies a subscription fee to help them regain their investment and those drugs would be freely given to people who get Medicare and Medicaid. We advocate for C. diff to be designated as a nationally notified disease. We would love to see C. diff patients’ experiences and perspectivesincorporated into clinical guidelines.

Additionally, we want to maintain critical funding for BARDA, the CDC, and the NIH. We had report language included in the 2023 budget that directed the CDC to explore improve reporting for C. diff. Report language isn’t a mandate but a suggestion, but this is our first step in dipping our toes in the water. Earlier this year, we held a patient listening session with the FDA and patient advocates. The FDA uses that insight in how they review documents for approval. We had 70 people from the FDA listen in, more than double what they usually see.”

In November 2023, the Foundation held its annual gala—the largest (and only) fundraising event for C. diff. During the Gala, the Foundation honored Dr. Kevin Garry with an Innovator Award for developing a quality-of-life (QOL) assessment for C. diff; Pam McCollester, a C. diff survivor and mother with an Advocate Award; and Dr. Sahil Khanna with its Leadership Award for his invaluable contributions to C. diff research and clinical care..

Resources for Patients and Caregivers

Of course, the Peggy Lillis Foundation also deeply supports the C. diff community by providing various supportive and educational resources. Their website includes a lifestyle and nutrition guide developed by nutritionists, doctors, and patients; videos and testimonials; resources to help patients assert their needs when visiting the doctor; FAQs; and a C. diff care guide. A peer support program and Facebook group also allow people to ask questions and find community. Says Christian:

“A lot of people experience shame and anxiety around C. diff. Through our resources, we hope to help people feel less isolated and less alone. There are people who have been where you are and survived it, and you can too.”

A Final Note on Infectious Disease

As Christian muses on his mother’s story and the greater need for C. diff awareness, he can’t help but make parallels to the current COVID-19 pandemic. He shares:

“I’ve been kind of stunned by the lack of commitment to ending COVID. It seems like there’s a push to just accept that it will be around, and I feel like we see that a lot in infectious diseases because they tend to be acute. We have huge organizations that work on chronic disease but not infectious disease, but we also have to recognize that things like climate change and deforestation are pathways to novel pathogen exposure. In my younger days, I participated in HIV activism. What stemmed from the AIDS epidemic was the recognition that we, as people, are responsible for each other’s well-being. I can’t help but feel like we’ve failed to learn these lessons. We need more on helping and being there for each other. Maybe we can’t eliminate infectious disease, but we can take it more seriously.”

Learn more about the Peggy Lillis Foundation and contribute to a better future where addressing infectious disease is at the forefront of our progression.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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