Removing Stigma of C. Diff Can Provide Opportunities for Discussion, Developing Treatment Options

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Feldman, who previously had C. diff, urges individuals to begin having conversations to help remove the stigma of the disease and raise awareness of its prevalence.

Erin Hunter, assistant editor for Pharmacy Times sits down with Jenny Feldman, a C. difficile (C. diff) to discuss the stigma of C. difficile (C. diff), and that normalizing the discussion of the disease can be a step towards developing a cure and further treatment options. Feldman also describes what a fecal microbiota transplant (FMT) is and how it works.

Pharmacy Times: When you please explain a bit more for people who don't fully know about the fecal microbiota transplant (FMT), what makes this different than antibiotics, and why it's…a new treatment after antibiotics if they do not work.

Jenny Feldman: Yeah…I liken it to when somebody needs to have their blood cleaned, or when somebody…has an embryo inserted—they create the embryo outside of your body, and then put it in—it's like you're repopulating your gut with healthy bacteria. Unfortunately, you're getting that bacteria from somebody else's healthy stool, so it's an FMT…and unfortunately, because of the stigma that goes along with the idea of stool…which is so funny to me, because I think about this. People are like, “Oh, my God, that's so disgusting.” and I think, well, I'm sure the first time somebody got a blood transfusion, that was [considered to be] pretty gross, and the first time somebody got somebody else's kidney, or liver, or heart, that was [considered to be] pretty weird, and the first time somebody gave a sperm donation, that was pretty awkward, too. But the stigma has kind of gone away with those things, that they have been normalized. So, I think that's what's going on with this, is the conversation needs to be had so that the idea of a stool sample isn't so cringeworthy, because people talk about sperm donation at a dinner table, like it's no big deal. But the idea of a fecal transplant makes people just wince…but you'll take some random person's sperm, or egg, or liver, or colon…but yet, this is still one of the topics that makes people so uncomfortable.

But really, what [an FMT] is, is you’re taking a donor stool—so it's feces from another donor that has a healthy gut microbiome that it doesn't have any infection in it—and they create what they my doctor calls a “flurry”…a liquid formula out of it. I was actually under [a] light sedation—like if you were going for a colonoscopy—and they just injected it as they would to repopulate healthy lower intestine, upper GI…I don't know, I was asleep. I didn't ask and I was just happy when I woke up, I felt better. But luckily, they're taking the technology for repopulating and creating oral medications…people are at the point where [they feel] so desperate, thinking you're gonna die, you're like, “I'll do it. I'll do it.” So, I don't know where the science is on that, but that's what a FMT is. There's a lot of screening that goes through the process. I’m part of a National Institutes of Health (NIH) study.

Pharmacy Times: TI hear you talking, and as you're going through this and you're asking people after you're done [with the procedure], you know, you need another surgery…you said you talked to other people with C. diff, and they told you chase it with vancomycin and other [antibiotics], and even before that, you were getting in touch with people. When I'm hearing all of this, it makes me believe that C. diff is probably more prevalent than we think. Is that a correct assumption?

Feldman: It's so much more prevalent than I was aware of, and what I found—and that's why I talk about the stigma of it—is that so many people that I talked to [had said], “Oh, yeah, I had it, but [I] don't talk about it because of the gross factor.” And [I think that] that is so unfortunate, because that shouldn't be something that prevents us from curing a disease, the fact that it's socially unacceptable to talk about. And I think that if that were the case with, [as an example,] prostate cancer, wouldn't that be unfortunate. If that were the case with so many other types of diseases that were kind of taboo subjects, that we just didn't talk about them, so nobody recognized that they pose a threat. I think that's part of the unfortunate issue that comes along with this, is that people won't admit that they had it unless you bring it up first…Like I said, I kind of wear it on my sleeve. Once I'm willing to say it, other people will then admit to it, but nobody comes out first and says to me that they've had [C. diff].

Pharmacy Times: It does seem like such a shame, because—as you were saying—the squeakiest wheel…

Feldman: …gets the grease.

Pharmacy Times: I feel like if C. diff were more “squeaky”…or if somehow there was less of that stigma. Do you think that there would be more NIH funding, or do you think there would be more attention toward it and finding solutions beyond either antibiotics, or the newest one—which does work as in your case—FMT, but even that's still fairly new.

Feldman: I really believe that if COVID-19—if the symptoms of COVID-19—were death by diarrhea, and the numbers were as high…but it wasn't a respiratory thing, it was a GI thing, and people were defecating themselves all over New York City…then yeah, I think…there's this embarrassment factor, that it's just so [gross], that people try and keep it under wraps…[I think] it's one thing to have GI issues—colitis, IBS, and all that, they're awful—but they're not contagious. So, you have this issue where you have diarrhea, not only do you have it, but you could give it to somebody else, so then it becomes like a double whammy. Not only do you not want anyone to know you have diarrhea…but you could catch it from [someone]. Now that becomes like a double gross…and how do you know when it's really gone, that it's safe for someone to come around you? So, you really don't want to say you ever had it because people are like, “Well, how do I know you don't still have it? How do you know? How do I know it's really gone? How do I know you don't have a flare?”

It's almost like having herpes, where it's always kind of there, but unless it's flared, you don't ever want to say you have it because somebody's going to hold it against you for the rest of your life…I bring up herpes only because growing up—I had a lot I grew up in South Florida—a bunch of my friends [and I], we would get cold sores from the sun, and it was one of those things where people see a cold sore and they go, “Oh, god,” and it feels like the same [thing], where there's like this stigma or taboo that goes along with it, like what else do you have? What does 1 thing have to do with the other, and there's a shame that comes with C diff, and I think that's what prevents people from advocating as loudly. Unless it really makes you feel like you're going to die, I think people are like, “I don't need to talk about that.”

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