What You Don’t Know About C. Difficile Could Kill You

Disabling diarrhea and, too often, death

Maryann Webb, a regulatory affairs executive from New Jersey, battled C. diff for three years during her early 50s.

“I understand what it feels like to be dying. I could literally feel myself dying,” Webb declared at the C. diff advocates summit. Webb spoke of how she became fully dependent on the care provided by her husband and teenage daughter: “When you have C. diff you are immediately not able to advocate for yourself.” She spoke of the physically debilitating impact of the ongoing infection and being unable to navigate the obstacle-filled maze toward care.

Webb became homebound due to her recurrent C. diff episodes, isolated herself as much as possible to not infect others, and spent nearly $100,000 for out-of-pocket medical services. She eventually needed all of her teeth replaced with implants due to extended diarrhea-caused malnutrition and frequent vomiting from the GI upset. Because she was so focused on and debilitated from battling C. diff, she skipped her well-woman medical appointments and mammogram screenings. An eventual early cancer diagnosis resulted in a double mastectomy. “There are so many downstream ripple effects to having C. diff,” Webb added.

The C. diff survivors attending the advocacy summit shared, in blunt language, the far-reaching impact that a C. diff infection can have. First, there’s the unrelenting diarrhea, which has a very particular and unusual look, consistency and sickeningly sweet smell. In short time comes dehydration and the inability to eat or drink. That leads to mental confusion and brain fog, which results in an otherwise healthy person quickly becoming fearful of being too far away from a toilet and bedridden due to exhaustion.

Those who’ve had recurrent C. diff flare-ups and have recovered panic at the slightest change in their bowels or health. Has the infection come back? Will taking a needed antibiotic — for, say, strep throat — cause C. diff again? Post-traumatic stress and the need for mental health counseling is prevalent among C. diff survivors. “I now have a ‘Three-Day Rule,’” says Webb, who refused to take antibiotics when undergoing her mastectomy and reconstruction. “If I think the C. diff is coming back, I wait three days before panicking.”

Diagnosis, treatment and a ‘transplant’

C. diff is sneaky.

Some people who are carriers of infectious C. diff germs might never fall ill. In medical terms, they are described as being “colonized.” These individuals don’t need treatment, but they can spread the infection. And since many people don’t test positive for C. diff even though they have it, experts say a diagnosis based on symptoms and a medical exam rather than lab results sometimes needs to be proof enough.

The challenge of receiving an accurate diagnosis is sometimes easy compared to the challenge of finding an effective treatment. Since several C. diff treatments are experimental or new, health insurers often won’t cover the costs — or will only do so during a hospitalization or after other efforts, such as the GI-targeted medication vancomycin, have failed. One of those treatments, fidaxomicin (brand name Dificid), is a drug that can have a $4,000 price tag for the recommended dose of 20 tablets over 10 days, although discounts are sometimes available. Zinplava, a monoclonal antibody that is used in combination with medication to reduce the recurrence of C. diff, also has a price tag in the thousands, although discounts are sometimes available as well.

When other treatments fail, doctors sometimes use a fecal microbiota transplantation (FMT), which is exactly what it sounds like. The still-experimental procedure involves delivering healthy fecal microbes from a carefully screened donor into a patient via a colonoscopy. The goal is to repopulate the gut’s good bacteria. The Food and Drug Administration (FDA) advises that FMT only be used as a last resort after other therapies have failed. Although the treatment typically works, there are no uniform standards for the fecal matter, the “elements” of which vary based on what’s in the sample.

Maryann Webb credits her FMT procedure — which was performed as a last resort after much battling with her health insurance company — with saving her life and finally ridding her of C. diff.

New treatments, proposed reforms

Among the treatments under development are those to standardize, and then receive FDA approval for, lab-created fecal microbes for the transfers. As detailed in a May Lancet article, the companies Rebiotix, Finch Therapeutics and Seres Therapeutics are each working on pharmaceutical-grade products to be administered via an enema or in pill form. Destiny Pharma is experimenting with using cultured bacteria rather than stool-based products to fight the C. diff infection. The biopharmaceutical company Crestone is pursuing a better antibiotic for treating C. diff.

However, proving that treatments work and getting them approved is just part of the battle. The costs and profit margins of these treatments, and coverage approval by health insurers, will ultimately determine their availability.

Public health professionals, C. diff survivors and the loved ones of those who didn’t survive argue that making C. diff a reportable illness could raise awareness among doctors and the public about the condition’s symptoms, diagnosis, treatment and prevention. Advocates also propose that antibiotic prescriptions be monitored and tracked. Experts say proper tracking, along with the development of new treatments and prevention methods, are crucial to saving thousands of lives.

“Antimicrobial resistance, or AMR, is one of the leading public health challenges of our time. Due to widespread, inappropriate antibiotic use, infections are becoming more and more resistant to the therapies that we have available,” Emily Wheeler, director of infectious disease policy at the Biotechnology Innovation Organization, said during the C. diff summit. “There are not enough products in development today to treat the infectious disease threats that are here today, let alone what may come down the pike.”

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4 Ways to Help Prevent C. Difficile Infections

Awareness is a first step toward protecting oneself from acquiring a C. diff infection. Other ways health care providers and individuals can reduce the risk:

1. Good hygiene

Proper handwashing and the cleanliness of shared spaces (especially bathrooms) protects against countless infections. C. diff spreads quickly in health care settings, among both staff and immunocompromised patients, in part due to lax hygiene.

2. “Antibiotic stewardship”

For patients, this means not insisting on receiving a prescription for every ailment. (Remember, antibiotics are only effective against bacterial infections, not viral ones.) Among health care providers, it can mean dialing back on the practice of medicating patients with antibiotics prior to certain procedures. Debra Goff, a professor of pharmacy practice and science at Ohio State University, is a scientific adviser to the Peggy Lillis Foundation and is working to update guidance about the use of antibiotics in dentistry.

3. Allergy awareness

Individuals who are — or believe they are — allergic to penicillin and similar narrow-spectrum antibiotics are usually prescribed a broad-spectrum antibiotic instead. “Such antibiotics, which can target many types of bacteria, tend to have more side effects, including an increased risk of developing infections like C. diff,” says Kenneth Lawrence, a pharmacist and executive director at Seres Therapeutics. He adds that some people who suspect, or have been casually told, they have a penicillin allergy actually don’t. In such cases, he advises that a patient have a direct conversation with a doctor or pharmacist to assess the likelihood.

4. Healthy eating and a daily probiotic

Bananas, rice, applesauce, toast and yogurts with high live-culture counts are well known as gut-healthy foods. Fermented foods and beverages — such as kimchi, sauerkraut, tempeh, kombucha and kefir — are considered good C. diff preventers. Vitamin D deficiency, which is common among Americans and especially among older adults, is a risk factor for C. diff, so a supplement and/or diet that includes D-rich foods are smart steps. In addition, using a high-quality probiotic when on an antibiotic — and even when not — can help keep the gut’s good bacteria in good shape and keep C. diff at bay. The effectiveness of a probiotic depends greatly upon its quality. A starter suggestion, according to Gail Cresci, an intestinal microbe specialist at the Cleveland Clinic, is to look for one with at least 1 billion colony forming units and containing the genus Lactobacillus, Bifidobacterium or Saccharomyces boulardii.