November is Clostridioides difficile (C diff) Awareness Month, so Pharmacy Times interviewed Christian John Lillis, co-founder and executive director at Peggy Lillis Foundation, to learn more about how far the medical field has come in advancing C diff awareness in the field. Additionally, Lillis sheds light on the role of the pharmacist in advancing C diff education and championing antibiotic stewardship best practices.
- Current Awareness and Knowledge Gaps: Despite efforts to increase C diff awareness among medical professionals, there remain significant knowledge gaps. While some clinicians, particularly those in academic medical centers, are well-informed due to their involvement in teaching and staying updated with research, many others, including doctors and nurses, possess varying depths of knowledge. The challenge lies in combatting misconceptions, such as viewing C diff as a disease that primarily affects the elderly or considering it a nuisance, rather than acknowledging its severe impact and potential fatality.
- C diff Awareness Campaigns: The Peggy Lillis Foundation, aiming to enhance public awareness, launched the "See C Diff" campaign during November (C diff Awareness Month). This campaign seeks to educate people about C diff risk factors, symptoms, treatment options, and prevention strategies. The Foundation has successfully expanded its reach through social media efforts, earned media coverage, and collaborations with various organizations, increasing its reach from 80,000 to 16 million Americans.
- Pharmacists’ Role in C diff Education and Antibiotic Stewardship: Pharmacists hold a critical role in advancing C diff education and antibiotic stewardship efforts. They can advocate for stewardship practices within their institutions, educate both clinicians and patients on antibiotic usage, promote awareness events, and engage in larger health care policy discussions. Additionally, they need to stay updated on current treatment guidelines, including new microbiome therapeutics, and advocate for their inclusion in formularies despite cost concerns, emphasizing their potential cost-effectiveness in preventing severe infections and readmissions to hospitals.
Pharmacy Times: November is C diff Awareness Month—how far have we come in advancing C diff awareness among medical professionals, and how much further do we need to go?
Christian John Lillis: Since we started the Peggy Lillis Foundation in 2010, I've noticed a significant but uneven increase in C diff knowledge among clinicians. Clinicians who work at academic medical centers tend to be the best informed. And that's likely because they teach, and they keep abreast of research.
From there, most doctors and nurses will be somewhat aware of C diff, but their depth of knowledge and how current or recent it is can vary significantly. And that's not necessarily the fault of clinicians, as 6 million pieces of medical literature are produced every year. So even the most committed physician can only absorb a tiny percentage of it.
When it comes to working with clinicians and educating clinicians, our biggest challenge is combating myths that they have developed, due to when and where they trained, and what specialty they practice in. For example, many clinicians consider C diff to be a hospital acquired infection that primarily affects the elderly. Some of them even consider it a nuisance disease, as opposed to something that is, incredibly debilitating for a large percentage of people and also, deadly to about 30,000 people every year. And again, that's just because they don't see it in their practice.
"For example, many clinicians consider C diff to be a hospital acquired infection that primarily affects the elderly." Image Credit: © luchschenF - stock.adobe.com
Also, C diff as a nuisance disease was true until the early 2000s. At that point, a new strain, called the North American pulse or NAP1 strain became the predominant strain and that particular strain the, NAP1 strain, is much more virulent. The toxins that it gives off are much more damaging to our intestinal tracts, and therefore, it's much more deadly.
In addition to that, particularly over the past 10 or so years, we've seen much more C diff infections in the community. So first, it started with people who had recently been on antibiotics and outpatient. But now more and more, we see people that don't even have a history of taking antibiotics in the past 6 weeks. And it's unclear whether that is the disease evolving again, or if that has something to do with the health and wellbeing of our population, like are we losing some immunity to this disease, is that due to antibiotic overuse, antibiotics and food, antibiotics and drinking water in other places. So, we're at a point now, because we have had some success in reducing hospital-acquired C diff, where about half of all the infections occur in the community. And a big problem with that is that only about 40% of Americans have ever even heard of C diff. That doesn't mean they can define it for you. That doesn't mean they know the risk factors of the symptoms. They just heard the word. So more than 60% of Americans have no idea what this disease is. And if you get it in the community, you don't have a doctor or somebody in the hospital who might recognize it. So, people often go undiagnosed or misdiagnosed for weeks or months.
So, I would say we have a way to go in terms of increasing awareness among clinicians and evening out the knowledge that they have. And that's something that we have been working with everybody from IDSA, to Contagion Live and Pharmacy Times, to help increase that knowledge and even it out.
Pharmacy Times: The Peggy Lillis Foundation is an organization focused on patient advocacy and raising awareness about C diff. What are some of the focuses of The Peggy Lillis Foundation this month to support advancing C diff awareness?
Lillis: So, starting in 2018, we developed a month long campaign to commemorate C diff awareness within November called See C Diff. Again, going back to the sort of general lack of knowledge that Americans have about this disease, we really wanted to, generate broader public awareness. For example, 85% of Americans have heard of Ebola, and the chances of you getting Ebola in the US are vanishingly small. We've only ever had one person die from Ebola in the US and that was because of a failure to rescue that person.
So, this other disease C diff, which is a genuine threat, if your immunocompromised, or even if you're healthy, you can get this infection. And more than 60% of Americans have never heard of it. So, we want to make a difference in the number of people who have heard of it. So, we started very small, we developed the campaign in partnership with this great consultant, and in the first year we've reached about 80,000 people, solely through social media efforts. And then in the subsequent years, it's gotten bigger and bigger, to the point where last year, we reached about 16 million Americans, mostly through earned media. So, newspaper articles, magazine features, interviews, podcasts, and through partnerships working with groups like Sepsis Alliance, or the IDSA. Last year was also the first time that the CDC recognized C diff Awareness Month, which we had been advocating for for a few years. So, overall, it's been kind of growing and building, and this year we're hoping to reach 20 million people.
So, in addition to the general See C diff messaging, which is just about people being aware of the risk factors, the symptoms, the treatments, how to engage in prevention, each year, we have a theme, and our theme this year is to See C diff Prevented. And to that end, we've come up with 7 opportunities, where C diff could be prevented. So, for example, the most obvious one, number one would be to avoid unnecessary antibiotics. About 50% of antibiotic prescriptions are medically inappropriate, meaning they're just unnecessary because the person has a virus or it's not the right dose, it's not the right antibiotic. So, patients should question when they did an antibiotic and ask if they're getting the right one.
Other ones include eating a microbiome supportive diet, so a diet that's rich in fiber and probiotics and prebiotics. We also want to ensure accurate diagnosis. So that's our third opportunity. C diff is a clinical diagnosis. There are there are 2 kinds of tests, one is slightly too sensitive and one is slightly not sensitive enough. So really, it's ultimately the doctor taking a history and then looking at this test that determines whether you're colonized or have an active infection. So that leads us to our fourth opportunity, which is for people to learn about C diff. So, if you think that you or your loved one may have a C diff infection, visiting our website at cdiff.org or going to the Mayo Clinic's website, they are places where you can get good information. And so, we want you to learn about it so that you can be your own best advocate or an advocate for a loved one.
We also have information on taking the proper precautions, as a big concern about people who have C diff is giving it to their family and their friends. And so, we have in our care guide, we have tips for how you can prevent spreading it in your household or among your family and friends. And it's simple things like taking your shoes off when you get to the house, making sure that any place where the person with C diff is active is cleaned with bleach and water. And then also something simple like closing the lid after using the toilet. So that's our fifth one, and those are primarily to sort of prevent a first occurrence or a first infection.
Then we expanded a bit to say, “Okay, how do we prevent recurrences?” So, the number one is to get the best antibiotic you can get. So, there's fidaxomicin (Dificid; Merck & Co), which is a narrower spectrum, it's newer, and it is more expensive. So, you may have to advocate for your insurance company or to Medicare or Medicaid, but it gives you a better chance of not having a recurrence. And then 7, we've been lucky, and we may talk about this a little more later, but in the past year, 2 new therapies have been approved by the FDA for C diff, they are both microbiome restoration therapies. So, they basically put good bacteria back in your gut to offset the bad C diff bacteria. And so, our goal with these new treatments is that if you have a recurrence, then you get an antibiotic to knock the infection down, but then you also get one of these restoration therapies so that you don't have a second reccurrence. So that's the main thing we're talking about this year for C diff Awareness Month. I think that we really want to arm people with information that's going to make a difference for them.
In addition to that, we've been working in partnership with everyone from the National Foundation for Infectious Diseases. I did a blog post for them. They're highlighting stories of people with C diff. This month, we have several of our advocates who are people who have either had C diff or had a loved one with C diff. They're being interviewed by Contagion Live. They're writing op eds, and we're trying to get those published. So, there's a whole host of activities that we engage in every year. And then of course, we're all over social media trying to promote our message and to get people to know that C diff exists and what they can do to prevent them or a loved one from getting it and what to do if they think they have it.
Pharmacy Times: Antibiotic stewardship is a significant focus for the effective treatment of C diff. What can pharmacists due to advance antibiotic stewardship efforts at their practice?
Lillis: Pharmacists can certainly be internal advocates for stewardship where they work, though I think we need to recognize that that can be complicated, because if you work in a big institution, pharmacy may not have the final say on those policies. But with proper organizing and education, I think pharmacists can be very strong advocates for antibiotic stewardship, they know the drugs best. They tend to be up on the literature. And I think, they're kind of on the front lines of dealing with resistant infections and trying to figure out like what's left in the arsenal if you have somebody who comes in with treatment-resistant gonorrhea, you have somebody who comes in with a resistant strain of MRSA. So, I think that they're well equipped to be internal advocates.
The other thing that I think pharmacists can really do is to help raise awareness of growing antibiotic resistance and educate clinicians about narrow spectrum antibiotic and anti-microbial options. So that we use fewer broad spectrum antibiotics. At the same time, while we want to minimize the overuse of antibiotics, we also want to make sure that somebody who comes in and is potentially going into septic shock does get a broad spectrum antibiotic right away. So, I think pharmacists are well equipped to kind of help their colleagues and their institutions understand where that line is, because there's a tendency to either over or under treat. What I've learned from pharmacists to say is the right drug for the right bug for the right duration, the right dose, and all that stuff.
Then I think there are 2 other ways that pharmacists can become involved. One is that they can play a role in their institution observing something like C diff Awareness Month by organizing seminars and other teaching events. And the same applies to antibiotic awareness week, there's also international infection prevention week in March. So, there's several annual observances that pharmacists can encourage their institutions to observe and give them an opportunity to engage in teaching, engage in conversation with their colleagues, but also with any patients that might be coming through the institution at that time. So, I think that's an excellent way that pharmacists can help people to understand why stewardship is so important.
Then lastly, I would say that pharmacists can play a role in the larger world of health care policy. We're talking about pharmacists as their profession, a lot of us tend to identify with our profession, but we're also citizens. And so, as citizens, pharmacists can engage in advocacy for something like passing the PASTEUR Act, which would create a new model of paying for new antibiotics. We desperately need new antibiotics. Pharmacists can be experts in arguing against fail-first policies where people are given the cheapest drug as opposed to the best drug. And also issues around payment.
I think pharmacists, because they're really the experts when it comes to the actual molecules and the drugs we're using, and they're not necessarily being paid per prescription written or per visit. They can have a strong effect in terms of being an unbiased person who's just looking out for what's best for their patients.
Pharmacy Times: What should pharmacists know about where we are with C diff prevention and treatment?
About the Expert
Christian John Lillis, is the co-founder and executive director of the Peggy Lillis Foundation for C. diff Education & Advocacy (PLF). He has 25 years of experience in fundraising, advocacy, and nonprofit management, including at NYU Langone Medical Center and the National LGBTQ Task Force.
As head of PLF, Christian has led eight national convenings of C. diff Advocates, built a 50-person volunteer Advocates Council, coordinated the first-ever C. diff Lobby Day on Capitol Hill, and produced the first-ever public service announcement on C. diff infections. In 2013, the Centers for Disease Control and Prevention recognized PLF’s work with its Excellence in Partnership award for domestic advocates and organizations.
Christian has presented to state hospital associations, quality improvement organizations, healthcare systems, and industry leaders, including Mount Sinai Health, the National Quality Forum, and the Presidential Advisory Council on Combating Antibiotic-Resistant Bacteria. He has also testified at Congressional briefings. Christian’s writing has appeared in the Baltimore Sun, Pharmacy Times, and the CDC’s Safer Healthcare Blog. He has also co-authored articles for journals, including Advances in Therapy and the American Journal of Gastroenterology. PLF’s work has been featured in Consumer Reports, USA Today, and Reuters. Peggy’s story was also featured in Dr. Martin Blaser’s 2014 book, Missing Microbes: How the Overuse of Antibiotics Is Fueling Our Modern Plagues.
Christian holds a BA in Political Theory from Brooklyn College-City University of New York. A native Brooklynite, he lives in the Kensington neighborhood with his husband, Chris, and their beagle, Maggie Anne.
Lillis: Pharmacists should know about the new treatments I mentioned earlier. So, we have 2 new microbiome therapeutics. I think pharmacists can play a role in being up to date on the guidelines. We still encounter doctors writing prescriptions for metronidazole for C diff, which is no longer considered a first-line therapy. And, again, if we're dealing with a clinician who doesn't see C diff very often, they may not be up to date on the fact that the preferred thing is fidaxomicin, and if that's not available vancomycin. So, that's an area where I think, if pharmacists are keeping themselves informed, they also can pass along that knowledge.
When it comes to the new microbiome therapeutics, this is a new model and a new paradigm for how we treat disease. And it's one that I think is very exciting. Because instead of just looking at how do we eliminate microorganisms, we're looking at how do we restore the balance of microorganisms. And while the first thing that's been approved for is C diff, there's all kinds of research going on in terms of restoring the microbiome on your skin, in your gut, your scalp—there's all kinds of potential applications for skin diseases, up through mood disorders. And so, I think pharmacists can play a role in understanding and also helping their institution to understand why it's important to have these drugs as part of the formulary.
Also, a challenge with these new treatments, as is the case with any new treatment is that they are expensive. And so, there's an issue with cost, there is an issue with whether or not they're going to be covered by insurance. We're obviously advocating for that. And that's another area where I suspect that pharmacists might be able to partner with patients to say we don't just want to give somebody the most cost effective treatment, we want to give them the most effective treatment. And so that may cost a little bit more at the individual patient level. But one of the things that we're learning where C diff is concerned is that if we're able to give somebody the best antibiotic and should a recurrence occur, give them a microbiome restoration therapy, in the aggregate that is going to cost the institution less money, because you'll have fewer readmissions, you'll have fewer people who become gravely ill and end up in the ICU, and you'll have fewer people spreading C diff around the hospital. So, I think there's many ways in which pharmacists being aware of these new treatments and new methods of prevention, especially for recurrence, can go a long way towards making a difference in patient outcomes.
Pharmacy Times: Closing thoughts?
Lillis: One of the things that running Peggy Lillis Foundation has taught me is the critical role that pharmacists play in our health care system. I think many of us think of the pharmacists as the person who we get our drugs from at Walgreens or CVS. And in working with groups like the Society for Infectious Disease Pharmacists and IDSA, I've come to really appreciate the role that pharmacists play in all different parts of the health care system. And so, we're definitely fans of pharmacists, and we feel like pharmacy, as a profession, is something that needs to probably become a little bit more loved by everyday people, and for them to understand how important these people are in our health care system. And then obviously, I think what we would definitely love is for everyone who's watching this video to join our campaign and help more people to See C diff, we have tons of social media assets at cdiff.org that people watching this video can share. And, despite people running to consult Dr. Google, it's always been my belief that most people will take information from a trusted friend even more so than Dr. Google, so if you see something that your friend shares on social media, you're more likely to look at that and take that in than if it's an ad or an account that you follow that's not a personal connection to you. So, I think in that way, sharing information about C diff and it's just on your Instagram in your personal time can be very powerful.