While the Centers for Disease Control and Prevention (CDC) and state health departments do the best they can, C. diff and other HAIs are likely undercounted. Policymakers should ensure that the public knows the breadth of these infections through timely and accurate reporting at the facility-level. There also needs to be more public awareness on C.diff as an infection that is more likely to affect people by the numbers than Ebola or Zika. While the latter two are exotic, the chances of an American being harmed by them is nil.
I had the pleasure of interviewing Christian John Lillis, an advocate for ending medical harm, professional fundraiser, poet and executive director and co-founder, with his brother Liam, of the Peggy Lillis Foundation.
Thank you so much for doing this with us! What is your “backstory”?
I grew up in large, multi-generational, working class, Irish-Catholic family in Brooklyn, New York. My mother, Peggy, had me when she was nineteen and my brother when she was 22. By the time I was five, my parents’ marriage was falling apart. While we were kids, Mom was on welfare and waited tables to make ends meet, while she put herself (and later me) through college. After college, I went to work for Lambda Legal in the fundraising department and fell in love with it. As someone who didn’t have much money growing up, I didn’t have a lot of hang ups about it. I also loved the Robin Hood quality of channeling the resources from those who had a lot to those who didn’t have much, or toward shared community needs like LGBTQ civil rights work. I went on to fundraise for NYU Langone Medical Center, the National LGBTQ Task Force and Teach For America. While at NYU, I met my husband. Mom had become a kindergarten teacher. My brother was a union plumber and engaged to his now wife. Our lives were great.
Then in April 2010, it all went to Hell. My mother had a root canal from her long-time dentist. Her prescribed her an antibiotic to ensure that she didn’t get an infection. A few days later, she came down with voluminous diarrhea. We did not connect the antibiotic use with the diarrhea. Everyone assumed, she had picked up a stomach bug from one of her students. After five days of these symptoms, we took Mom to the emergency room. We were mostly concerned about dehydration. Shortly after we arrived Mom was diagnosed with a massive infection caused by a bacterium called Clostridium difficile or “C. diff.” We learned this infection is generally associated with antibiotic use. Though she was lucid and talking, she was in the early stages of sepsis. Over the next 36 hours, the doctors did everything they could, including surgery to remove her colon. Despite their best efforts and countless prayers, our mother died on April 21, 2010. She was just 56 years old. The grief was epic. After her funeral, I was desperate to understand what had happened to my mother. Through a lot of online research, we learned that no organization existed to fight this disease or help those suffering despite a death toll as high as HIV/AIDS or drunk driving. We agreed that between my professional background and our big network of family and friends we could fill that void. So, in the summer of 2010, we launched the Peggy Lillis Foundation.
Can you tell me about the most interesting projects you are working on now?
Earlier this year, we launched a new campaign, Make C. diff Count. The campaign was initially conceived because our mother’s death certificate doesn’t include C. diff as her cause of death. We believe that every person who is harmed or dies from a healthcare-associated infection (HAI), including clostridium difficile infections, deserves to be counted. Because of gaps in infection and mortality reporting at the state and federal levels, tens of thousands of people are not included in official estimates. The Peggy Lillis Foundation has become a leading coalition of people, nonprofits and industry partners to ensure that every death and every infection is counted. We aim to make C. diff and other HAIs count. Our goal is to dramatically increase public reporting of C. diff and other HAIs to ensure that every person who suffers and dies from these preventable diseases is counted. To achieve our goal, we will work to require that C. diff and other HAIs are recorded on death certificates; advocate for the modernization of nationally reportable disease laws; expand and update state public reporting laws, and increase funding for surveillance, reporting and public education at state and federal levels.
So how exactly does your organization help people?
We are building a movement to end harm caused by C. diff and other HAIs. To that end, we provide accurate, easy-to-understand information on C. diff prevention, treatment, and managing the disease for patients, caregivers, and healthcare workers. Increasingly our focus is on empowering people who have been directly impacted by C. diff to become powerful activists in raising awareness of and advocating for the funding and policies needed to end this epidemic.
Can you tell me a story about a person that you helped?
In May 2013, Judy Dexter lost her months-long battle with C. diff. She left behind a wonderful husband Chuck and their four adult children — Rich, Scott, Mike and Kirsten. Initially, the Dexters used our website for information and when Judy passed, they asked for donations to be made in her memory. The following year, the Dexter family organized a memorial picnic and cornhole tournament, which has become an annual event. The Peggy Lillis Foundation began working closely with the Dexters on raising C. diff awareness and advocacy. As a result, Judy’s story was featured in NBC Washington’s September 19, 2017 report “Beware of Catching Infections at Hospitals.” The Dexters have also been active on Capitol Hill as part of The Peggy Lillis Foundation’s C. diff Lobby Days. We are so proud to help this family build their own legacy in memory of Judy.
This obviously is not easy work. What drives you?
Primarily, my mother’s absence is what drives me. Having a mother who was so young and vital was awesome. Liam and I were incredibly close to her. We talked on the phone nearly every day. We went to movies and concerts together. In addition to her being my mother, she was also one of my best friends. It’s been more than eight and a half years since she has been gone and I’m still acutely and painfully aware of her absence. Our culture gives grief a bad rap. We treat grief and loss as something to move on from thereby denying its radical power. Paul Monette, one of the great chroniclers of the early AIDS crisis, wrote: “Grief is a sword, or it is nothing.” Most days, I can accept that my mother is gone. What I cannot accept is that it will be in vain. That nothing good will come of it. The second driver for me is the community that we are cultivating to combat C. diff. We have met some incredible people from all walks of life. Nothing that I do individually is as heartening to me as watching someone who’s beat C. diff advocate for those who are or will fight the infection. Whether it’s the camera-shy person overcoming it to tell their story, or a political neophyte coming out of their first meeting with a legislator, excited at the power of our movement, watching people get ignited is a major motivator.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
1. Accurately represent HAI infections: While the Centers for Disease Control and Prevention (CDC) and state health departments do the best they can, C. diff and other HAIs are likely undercounted. Policymakers should ensure that the public knows the breadth of these infections through timely and accurate reporting at the facility-level. There also needs to be more public awareness on C.diff as an infection that is more likely to affect people by the numbers than Ebola or Zika. While the latter two are exotic, the chances of an American being harmed by them is nil.
2. Share stories: Earlier this year, The Peggy Lillis Foundation joined the global “I am Resistance Fighter™” campaign, which was started by BD (Becton, Dickinson and Company) to bring awareness to antimicrobial resistance (AMR), which is linked to C.diff. Everyone — from patients to policymakers to hospital CEOs have a role to play in ensuring antibiotics are used appropriately to prevent antibiotic resistant HAIs like C.diff. The campaign aims to use stories like my mom’s to spread awareness of the risks of AMR and how we can all play a role in addressing them. I’d invite anyone with a story to join us in becoming Resistance Fighters by visiting https://www.antimicrobialresistancefighters.org.
3. Talk about poop. Our culture has a real taboo on honest talk about our bowel movements and feces. This cultural taboo prevents people from discussing the symptoms related to C. diff. People suffering from diarrhea symptoms often feel ashamed and isolated. This can prevent them from seeking medical care or sharing their experience with peers thereby stymieing public awareness.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
There are so many. I have had incredible teachers and mentors throughout my career. As the head of The Peggy Lillis Foundation, I get a disproportionate amount of credit for our work and successes. But from the very start, our family and community stepped up to make our vision of turning this terrible tragedy into a powerful legacy for our mother into a reality. In the first couple of years, many people donated their time and services to get this off the ground. But, if I must choose one, I’d have to say my husband, Chris. He was very close to my mother as I was to his. With all respect to Bette Midler, Chris is the wind beneath my wings. He is a pretty quiet Southern guy who somehow fell in love with this loud, brash, New Yorker. For the first five years of The Peggy Lillis Foundation, I worked a full time, 60-hour week job and then spent 20–30 hours to build this organization. Chris cooked and took care of our home all while working himself. He was my sounding board and copy-editor. He didn’t blink when I left a relatively high paying job to live off savings, so we could take the Foundation to the next level. I try to never lose sight of how all his quiet and steadfast love and support has made this possible.
What are your “5 things I wish someone told me when I first started” and why. (Please share a story or example for each.)
1. You have to pace yourself. Building a nonprofit and a public health movement is a marathon, not a sprint. I have definitely burned myself out more than once. It’s only in the last couple of years that I’ve learned better how to manage my time and energy.
2. Put your own oxygen mask on first before helping others. “Do gooders” tend to be terrible at taking care of themselves. Eating well and taking time for yourself to destress and reinvigorate ourselves is important. We are no good to those we want to help if we’re falling apart, physically or emotionally.
3. This will change you and some people won’t like that. To lead the Foundation, I’ve had to change and grow as a person. In particular, I had to face a lot of fears that had been holding me back. It also changed my lifestyle and availability. Lastly, not everyone is comfortable with regularly having my mother’s death and absence brought up. There were people I expected to be our biggest supporters who didn’t like how I changed with the growth of the Foundation. And, of course, some people surprised us by how committed and steadfast they’ve been.
4. Your successes will be paired with a renewed sense of loss. Whenever we have a significant achievement, I want to call my mother and tell her. It’s an odd kind of emotional dissonance that I don’t think will ever go away. I’m sure everyone who’s lost a parent at a young age struggles with wanting to share all their exciting milestones. I just have the added weirdness that most of mine are about my mother.
5. Sometimes done is good enough. I struggle with perfectionism, which can be a real drag on progress. I remind myself that there are typos in “The Davinci Code” and the Harry Potter series but that hasn’t stopped them from being runaway bestsellers. As humans, we’re imperfect. Even materials that go through multiple professional reviews can still contain mistakes. So, we can at least forgive typos in our own rushed emails.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.
We need to demand better from our healthcare system. Per capita, we spend more than any other country, care for fewer people and have worse outcomes across a range of indexes from patient safety to maternal health. Beyond a regular check-up, most people do not think about how our healthcare system works until they or a loved one are ill. At that point, it’s usually too late to affect the care you or your loved one will receive. We have a tendency to blame individuals — the doctor, the nurse — for bad healthcare outcomes. There are definitely some bad or incompetent people in healthcare, but they are a small minority. Most harm and deaths are traceable to systemic failures. Given how much we pay in insurance premiums, Medicare and Medicaid, tax exemptions for nonprofit hospitals and other service providers, we, the public, need to take a much larger role in steering this ship. We’ve picked our little part to work on and I sincerely hope others will be inspired to pick a spot and help steer.
Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might see just see this. 🙂
Atul Gawande. I read his first book Complications while working as a fundraiser at NYU Langone and became a fan. In the aftermath of losing my mother, I find Dr. Gawande’s writings on healthcare, patient safety and the intersection of medicine and culture are so well done. He inspires me to be a better communicator. Dr. Gawande also has the ears of powerful Americans who could make a huge difference in the fight against C. diff.
What is the best way our readers can follow you on social media?
@PeggyFund on Twitter and Instagram