Pharmacy Times® interviewed Maryann Webb, Clostridioides difficile (C. diff) survivor, board member and Advocate Council member with the Peggy Lillis Foundation, to discuss her diagnosis with C. diff and her journey to overcoming the infection. During the conversation, Webb described the difficulty she had advocating for herself while affected by C. diff and how her experience has helped her when advocating for others. She also discussed the Peggy Lillis C. diff Inclusion Act’s introduction to Congress, and if passed, how it can support people affected with C. diff by assisting the CDC and public health officials in improving infection control. Webb will be awarded the Advocate Award during Peggy Lillis’s 15th Annual Changing the Odds Gala this upcoming November.
Pharmacy Times: Can you introduce yourself?
Maryann Webb: My name is Maryann Webb and I’m a C. diff survivor and patient advocate for the Peggy Lillis Foundation. I’m also a Peggy Lillis Foundation board member.
Pharmacy Times: When were you diagnosed with C. diff, and what was the journey like?
Webb: Sure, so I was diagnosed with C. diff following a brief hospital stay for an episode of diverticulitis, and I had never had that before. I was hospitalized for a couple of days and given—I think—very strong antibiotics through an IV. So, once I was released from the hospital, I started to do better, and then about 3 weeks later I became extremely ill, and that was essentially some very uncontrollable, voluminous diarrhea, abdominal pain, cramping, nausea, and vomiting, and it just was unrelenting. So, eventually I ended up back in the hospital. I was tested, apparently, for C. diff—I thought I had cancer, I was just so sick—and no, I didn't test positive for [the infection], they didn't know what I had. And I went through a series of releases, and then readmittance to the hospital.
Eventually, I did test positive for C. diff. Again, I didn't know what it was, and it was the beginning of a very, very long, painful battle for me. The infection had taken hold in my body and I just I succumbed to the infection. I was then hospitalized over and over again with recurrence. I didn't know at that time that...you have over a 30% chance of recurrence no matter what, and then with each subsequent recurrence, that number increases almost exponentially. So, I really didn't have a chance. There were limited treatments for me, and it started with metronidazole (Flagyl; Pfizer)—which is not indicated any longer [for first line infection]—and then vancomycin (Firvanq; Azurity Pharmaceuticals), and combinations of those. Eventually, I was given fidaxomicin (Dificid; Merck), and that didn't work. After 3 years of having this infection, it was only after access to a fecal microbiota transplant (FMT) that 8 hours after that transplant, I knew the infection was gone. And I just continued to get better after that.
Pharmacy Times: How did you have to advocate for yourself, and how would you encourage others to advocate for themselves or their loved ones?
Webb: You know, this is a really difficult question because I was so sick that it was nearly impossible for me to advocate for myself. Only in moments of sheer desperation, for example, I had a high school-age daughter [at the time and] ask her to accompany me to the emergency room so that I wouldn't get left in the corner. But other than that, it was really, really difficult to advocate for myself.
C. diff sends out toxins throughout your body, you can imagine the cumulative effect of day after day, year after year of having constant fulminant disease, diarrhea, and vomiting, that you just are too weak to do that. And it's a reason that I'm so involved in patient advocacy now, because I recognize that. Even when I come into contact with health care providers now [whether it is] through the foundation, through any of our scientific forums, I do try to bring up and address the issue of health care providers getting involved with patients' families and really letting them know what it is that's happening, because you're just too weak to be able to do it for yourself at that point.
Pharmacy Times: You will be receiving the Advocate Award at the Peggy Lillis Foundation’s 15th Annual “Changing the Odds” Gala this November. Can you describe the event and what this award means to you?
Webb: Well, it's a huge honor. It's certainly not why I do the work, but it's great in terms recognition for something that I just care so much about, which is advocating for those who don't have a voice currently. And so, it means a tremendous amount...once I was—essentially—cured with my FMT, I really felt an obligation to reach back to people who are still fighting, who are still sick in hospitals beds, at home in isolation, in hospitals in isolation...so, I just felt that that it was my obligation to do that work and create an environment that I didn't have.
There's no support system, really, for C. diff...it's just not well known. And so, our work, all of us as patient advocates, we have to kind of trot out our experience and our own traumas and try to reach out to people to either give them support [and] their families support, and also through the Foundation, we try to influence positive health policies, public health policies. Currently, we're working on a house bill that was just introduced by Congresswoman Yvette Clarke, and this is to make C. diff a nationally notifiable disease. We feel that that's a really important foundation for the work that we're doing because in order to do anything about developing treatments, awareness, and prevention measures, we have to know where [C. diff] is [and] recognize that it's out there. I definitely have access to data and information that shows that, it's increasing in the community—[it's] a community-acquired disease—and it's an antibiotic-resistant bacteria, so, it's really important for people to know that it's out there and it's only going to get worse, unfortunately. We don't have much in way of an arsenal to combat bacterial infections like these superbugs. So, it's really important to me, and Peggy was a fighter, and I hope...I do a small bit of justice to her name.
Pharmacy Times: Recently, the Peggy Lillis C. diff Inclusion Act was introduced to Congress. What does this bill represent, and if passed, how would it support people with C. diff?
Key Takeaways
- Personal Struggle with Clostridioides difficile: Maryann Webb shared her long and painful journey battling Clostridioides difficile (C. diff) infections following a hospital stay. After years of ineffective treatments and immense discomfort, a fecal microbiota transplant finally cured her, motivating her to become a patient advocate.
- Advocacy and Support for C. diff Patients: Webb emphasizes the need for patient advocacy, particularly as those suffering from severe C. diff infections are often too weak to advocate for themselves. She now works to raise awareness, provide support to others, and influence health policies to combat C. diff.
- Peggy Lillis C. diff Inclusion Act: Webb highlights the importance of making C. diff a nationally notifiable disease. If passed, the Peggy Lillis C. diff Inclusion Act would enable better tracking and data collection, essential for developing treatment strategies and raising public awareness about the infection’s severity and antibiotic resistance.
Webb: I think a lot of people are more aware now than they were a few years ago because of COVID-19. Everyone sort of was able to follow the numbers with COVID and see where there are increasing cases, and perhaps outbreaks, and then be able to adjust their prevention strategies. So, the same applies, really, in order to count C. diff infections. We just have to know that they're there, [but] right now, there are only a handful of states that have any kind of reporting and the data that we have is old. It's from 2016. If you wanted to, for example, go to a hospital and have an elective procedure done, you might want to know that they have a huge outbreak of C. diff.
So, there are many, many reasons that this data is important. And then we can track the community-acquired versus hospital-acquired [cases], we can see the way the virus is behaving, perhaps it's mutating, and adjust prevention strategies and developing treatments. I think that the world needs to be far more aware of the fact that we should be better stewards of antibiotic use. We shouldn't be taking them unnecessarily, [and] perhaps we should be getting them out of our food supply because we're all taking antibiotics through our food, whether we know it or not. Yeah, there are a lot of ways that that data will help inform everything that that we can do in order to combat these types of superbugs.
Pharmacy Times: Any final or closing thoughts?
Webb: Ultimately, I [would] like people to know [and] be aware of C. diff, to know what it's like for people who are suffering from it because it's a very isolating and debilitating disease, it causes people—myself included—to lose relationships, friendships, homes, jobs, and it's often fatal. That's the type of infection that you're dealing with. And so, to reach out to people if you know that they're suffering [is important], to understand that their mental health is probably taking a huge hit...and that should be part of their treatment as well.
And I would [also] say wash your hands with soap and water. That's probably the best thing that you can do—besides not taking antibiotics unnecessarily—soap and water, and not hand sanitizer.
