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In this podcast episode, we have Christian John Lillis, executive director of the Peggy Lillis Foundation for C. diff Education & Advocacy. Christian shares his experiences as a patient advocate and discusses the challenges he faces at medical conferences. He also highlights the discriminatory laws in certain states and calls for medical societies to boycott those that impede evidence-based care. Join us for this insightful conversation on patient advocacy and health care rights.

Christian John Lillis is executive director, Peggy Lillis Foundation for C. diff Education & Advocacy.

He discusses his KevinMD article, “Conferences’ duty of care in the face of discriminatory health policy.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Christian Lillis. He is the executive director of the Peggy Lillis Foundation for C. diff Education and Advocacy. His KevinMD article is titled “Conferences’ duty of care in the face of discriminatory health policy.” Christian, welcome to the show.

Christian John Lillis: Thank you so much for having me, Kevin. I really appreciate it, and I appreciate you publishing the article. I think it’s an important message.

Kevin Pho: So we’ll get into that article a little bit, but first off, just briefly share your story and journey to where you are today.

Christian John Lillis: Career-wise, I have always been somebody who worked in nonprofits. I was a fundraiser for many years. My brother and I grew up with our mother, Peggy, who was a single mom from the time I was five. We grew up kind of poor, but she eventually went to college and became a kindergarten teacher, and her life was great and our lives were good.

In April of 2010, she went to the dentist, had a root canal, and was given clindamycin prophylactically. A few days later, she came down with pretty severe diarrhea. She didn’t really communicate the severity of it to us at that time, and at first we thought, “She’s a kindergarten teacher. She caught something from the kids.” No one was really that concerned about it. But it persisted for a few days, and she spoke to her doctor, and her doctor gave her something prescription-strength. Still, even with that, she was having sort of breakthrough diarrhea.

So finally, that Tuesday (she had gotten sick very early in the morning on Friday; it woke her up), I came to meet her and take her to see a GI doctor. But when I got there, she just didn’t seem right. I thought she was dehydrated, so we decided to go to the emergency room instead. Within half an hour, 45 minutes, the doctors had assessed that she had toxic megacolon. She was going into septic shock, and it was caused by this bacteria called, well, back then it was called Clostridium difficile. Now it’s called Clostridioides difficile, or C. diff, which is probably what people are more familiar with. I had never heard of it, and I had worked at NYU Langone Medical Center as a fundraiser. I had worked in hospitals and private doctors’ offices all through college, so it was shocking.

Despite the best efforts of the doctors at that hospital, which is just a local hospital here in New York, not an academic medical center, she passed away the next night at 7 p.m. from sepsis. We were very close to our mom. I have a younger brother named Liam, and he’s coincidentally a plumber for one of the big hospitals here in New York. I mean, devastated doesn’t begin to express it. It’s been 13 years, and I can talk about it better than I used to, but we just didn’t understand how this thing that we’d never heard of came along and kind of snatched our mother away from us.

My mom had eight siblings and 18 nieces and nephews, and she was a very popular person. She was very well known in our community. Grief can kind of mess with your memory, and I don’t actually recall my brother and me deciding to start the Peggy Lillis Foundation. But she passed away on April 21, and by July we had a date for the first fundraiser and were handing out cards. It was because the more we dug into it, the more we realized how many people this affects. Back then, the estimate was about 14,000 people a year. Now, whether it’s the direct cause or a contributing cause, it’s around 30,000. Post-COVID, that doesn’t seem like that high a number, but it’s more people than HIV at this point, and it’s even more people than drunk driving.

I think if she’d been in a fatal accident, like a car accident, we would have raised money for MADD. But there was literally nothing out there for patients. With my background, our big family, and our network of people who really wanted to do something in her memory, we decided to start the Peggy Lillis Foundation.

Kevin Pho: So through your advocacy work for C. diff, tell us some of the main misperceptions about C. diff that you commonly encounter and want to clear up.

Christian John Lillis: The two biggest ones are, first, that it’s only something that affects the elderly and immunocompromised. That was true probably until the late ’90s, early 2000s, when a new strain developed that was much more virulent and deadly, the NAP1 strain. The other one is that it’s a hospital problem. Certainly there are issues with people getting C. diff in hospitals, and as you know as a doctor, there are a lot of things that go on at a hospital, whether it’s surgery or chemotherapy, that require people to be on antibiotics, which is a big risk factor for C. diff.

But over the past 10 years, certainly since we started this, there’s been a shift to much more community-acquired C. diff, where younger people are getting it, people who sometimes haven’t even taken antibiotics. Though of course, there are antibiotics in our food; there are a lot of ways that we get antibiotics into our bodies. So the two would be that this can happen to anyone, and that it does happen in the community. I think approaching half of all of them are in the community.

So those are two things, especially for health care workers who maybe haven’t thought that much about C. diff since medical school or their residency because they don’t work in a specialty that sees it. Oftentimes we hear from people that they go to their doctor, and their doctor doesn’t even test them for it because they’re 45, and it doesn’t occur to the doctor that they could have C. diff. So those are two big ones.

Kevin Pho: All right, let’s talk about your KevinMD article titled “Conferences’ duty of care in the face of discriminatory health policy.” So tell us, how did your article come together?

Christian John Lillis: So I’m gay. I think that’s shocking when people hear me talk for a while. But even back in high school and college, I was kind of an activist around those issues, and my mother certainly regarded herself as a feminist, and I do consider myself one as well.

I had agreed to speak at the Making a Difference in Infectious Diseases conference, which your audience may be familiar with. I’ve spoken there before, and we’ve had advocates, C. diff survivors, speak there. It’s a great conference. It’s mostly ID pharmacists, but they’re kind of growing who goes to it. At the same time, in the background, in the last year, something like 500-plus laws have been introduced to either ban drag performances or ban gender-affirming care for trans teenagers. And then the ones that are most troubling, though all of them are troubling, are these freedom of conscience laws, which basically say that if you’re a physician or a health care worker who has strongly held beliefs or a religious conviction, you don’t necessarily have to provide care that doesn’t align with your beliefs, nor do you have to treat people who don’t align with your beliefs. The laws are written so broadly that they could be interpreted very drastically.

So at that point, the conference was in Florida, just kind of the beacon of all of these things, and I was really torn. I was very close to canceling speaking. But I mentioned earlier that I’m a fundraiser. I’ve been planning events for hundreds of people for years and years, and I understood that the conference organizers had booked the hotel a year ago. These things take a long time to plan. So I decided I was going to go, and I was going to talk to them and to the people there and sort of get their read on it. But probably in the last 15 or 20 years, it had never occurred to me that, with my being gay and somebody who I think is kind of visibly gay, if I’m speaking and talking and walking around like that and something happened to me, maybe somebody wouldn’t help me. So that part of it irked me and scared me a little bit.

But the genesis of the article was when you look at these laws that they’re passing, and we could extend it to the abortion bans as well, or abortion only until six weeks, this is politicians, often cynically in my view, getting in between patients, health care workers, and their physicians. They are trying to tell doctors and nurses and other providers what they can and can’t do, not based on the medical consensus but based on a religious conviction, a belief that this is going to help them win an election. That part of it, to me, is very, very cynical. And I think that for professional societies, who spend all of this time and energy developing guidelines, adhering to guidelines, and teaching guidelines, to have, frankly, a bunch of people who aren’t doctors or nurses or health care workers dictate what you can and can’t do is just not something that those societies should support.

If you have a conference for a thousand people in Orlando, you’re bringing your money and your people there. So to me, that’s a concern: At some point, you’re starting to ask people, what if somebody doesn’t know they’re pregnant, they have an ectopic, and that happens while they’re at the conference, and then they can’t get the needed abortion to save their life? I just feel like professional societies have to take a stand on this.

And much of the freedom of conscience law, I mean, I’m sure you’re familiar with the four tenets of medical ethics, and none of them say you should let somebody die because you don’t agree with their lifestyle or you don’t agree with who they’re married to or their religion. Again, they’re written so broadly. That was basically the beginning of it. I certainly understand, particularly throughout the rest of this year, that there are conferences that are scheduled that have been worked on for years and years. But I really feel like we’re calling on doctors, nurses, and their professional societies to take a stand, to stand with patients and also to stand for medical ethics. So that was kind of the genesis of it.

Kevin Pho: Now, when you brought up your concerns to this conference, what was their response?

Christian John Lillis: They were actually quite supportive, and they themselves were kind of concerned. They’re concerned about a future where they were to go forward and continue to hold their conferences in states that have abortion bans or have the freedom of conscience stuff, and also around transgender care. There’s been so much lying about what doctors provide to trans people under the age of 18. They’re not having surgeries; it’s incredibly rare, and that’s only with parental consent. And I think, especially with what happened around COVID and the pandemic, where there was so much misinformation, people are concerned, and they want to make sure that there’s integrity around medicine and that they are not supporting a place that would interfere with their ability to practice medicine or would potentially bring harm to the people attending their conference. So they were very receptive to the argument.

I think the big thing is, where’s the line? Because I did research for this article, and just about every state, including New York, has had some bill introduced. So I think we have to look at what the things are. Whether it’s a ban on trans-affirming care, bans on abortions, or the freedom of conscience things, I think those are really concerning, and I think that’s what medical societies have to evaluate and say, “If you have these laws on the books, we’re not going to come to your state.”

Kevin Pho: Just for some context, you mentioned Florida, of course, as a state with freedom of conscience laws. How many other states in the country have freedom of conscience laws on the books?

Christian John Lillis: I believe there are three others that have gone into law, but there are many that have been introduced. I think one of them was vetoed, I think the one in Wisconsin or Michigan. The Democratic governor vetoed it, and they didn’t have the numbers to override the veto.

But even something like, because we were talking about Florida, even something like “Don’t Say Gay.” I’m Generation X. We didn’t get a lot of sex education in high school or middle school to begin with. And if you can’t say gay, and if you can’t talk about reproductive and sexual health in just the course of doing normal sex ed, it may not be a shock, but I think gay people have sex somewhat differently than straight people, and we deserve to have education that helps us protect ourselves, stay safe, and not transmit infectious diseases to each other. And again, that’s something that I think medical societies should stand with.

Kevin Pho: So you run a lot of events, or you’re very familiar with how these events are run. In your ideal world, tell me how they should proceed going forward.

Christian John Lillis: I think there are two things. We’ve certainly seen individual doctors, and a couple of the societies, like the Endocrine Society, have been very vocal around the laws against trans-affirming care. I think we’ve seen some societies step forward around the abortion bans. So I think we need the professional societies to take strong stances against these kinds of laws, because, I mean, I’m going to make the slippery-slope argument, but it’s a slippery slope. What is gender-affirming care? Is it Viagra? Is it a hair transplant? Is it hormone replacement therapy for women who are post-menopause?

Again, I think that we need to have good regulations and good guidelines that guide health care, but these are not, again, based on the consensus. So if there are laws that prevent you from practicing medicine along the lines of the medical consensus, either broadly or for your specialty, I would seriously consider not having a conference there.

Kevin Pho: So you mentioned the Endocrine Society as one taking strong stances. In general, is that the norm among other medical societies?

Christian John Lillis: I have to admit I haven’t done it. I’ve sort of lasered in on the ones that are related to trans stuff. I think the AMA has made a statement about some of this stuff. I do understand the reticence to sort of become a political actor as a professional society. But as someone who studied political science in college and has worked in LGBTQ rights and now patient advocacy and rights, it’s all political. Who gets care is political. How care is paid for is political. So attempts to remain neutral just don’t work.

I think we’ve seen it particularly around obstetrics, with the varying degrees of abortion bans, where people don’t want to practice in certain states anymore. We’ve definitely had HIV society members come out and speak about it, and we’ve had brave individual doctors who practice in these states come forward. So I just think that they need their societies to have their backs, and the patients do too.

Kevin Pho: We’re talking to Christian Lillis. He’s the executive director of the Peggy Lillis Foundation for C. diff Education and Advocacy. His KevinMD article is titled “Conferences’ duty of care in the face of discriminatory health policy.” Christian, tell us some of your take-home messages that you want to leave with the KevinMD audience.

Christian John Lillis: I have two things. Your audience may or may not be aware that for C. diff, we recently had two new, I would say treatments, but the FDA says they’re preventatives, so we’ll go with the FDA. We’ve had two microbiome therapeutics, or microbiome preventatives, approved by the FDA, one last year and one this year. One of the things that it’s made me realize is the degree to which, culturally, we expect infectious diseases to be treated cheaply. Whereas with another disease, maybe if you’re in oncology, or hip replacements, there’s a whole range of things where no one bats an eye at a five- to six-figure price tag for that treatment. But things like antibiotics and now these new microbiome therapeutics save people’s lives.

With C. diff in particular, every time you get a recurrence, you are more likely to end up in septic shock, and you’re more likely to die. So for these drugs to interrupt that rate of recurrence and to give people back a healthy gut microbiome, their lives, their ability to go to work, to spend 10,000 or 15,000 on those drugs, I think, makes sense. And if we look at the antibiotic market, we’re having such a hard time getting new antibiotics developed because it costs a billion dollars. And if we’re not going to sell them, and if everyone expects to get a Z-Pak for a $5 copay, that’s not a market. I mean, I’ve even had some docs that are like, “I’m for single-payer now,” because they’re just kind of exhausted by all of the hoops they have to jump through. So I think one of the lessons we should take from COVID is that we need to prioritize preventing infectious disease and treating infectious disease, and making sure that we keep that in the same way that we keep chronic diseases.

And then the other thing that I would say, and this goes back again to this moment that we’ve all been living through with the pandemic and the official end of the pandemic, though there’s still a lot of COVID happening, is that I just feel like our political leaders have been unwilling to learn what COVID could teach us, whether that’s a stronger view of prevention or learning how to communicate better about vaccines and public health. Your audience may be aware that of the, I think, $4 trillion that we spend on health care in this country, only 3 percent of it goes to public health and prevention. There’s that old saying, “An ounce of prevention is worth a pound of cure.” So I think we have to fight to ensure that there’s not amnesia, that we don’t forget what happened.

We started the Peggy Lillis Foundation because my mother died, and we’ve lost over a million people to COVID. We have millions of people with long COVID. So what I’d like for us all to do is to understand that infectious diseases are still a serious threat, even if you live in a sort of post-industrial country. We need to take them seriously, we need to educate the public about them, and we need to make sure that there are antibiotics in the future. I’m sure every doctor who listens to this at some point needs to prescribe an antibiotic, and we’re on a course to not have new ones. So yeah, those are my two big takeaways.

Kevin Pho: Christian, thank you so much for sharing your time and insight. Thanks again for being on the show.

Christian John Lillis: Thanks for having me.