Advocating for Better Regulatory Rules and Standard of Care for C difficile
Maryann Webb’s harrowing, personal experience with C diff, along with her professional work with federal agencies has prepared her for a life in advocacy with the Peggy Lillis Foundation. She wants to see the fecal microbiota transplant become more accessible and is working with Congress to make the infection a notifiable infectious disease.
Make no mistake; Maryann Webb is a fighter. She has battled both Clostridioides difficile (C diff) and breast cancer simultaneously. During her sickest time, she felt her organs shutting down, and she was getting her affairs in order because she thought she was going to die.
“I was just wasting away. I could feel myself dying…I really just didn't know what was going on, but I knew that I was nearing the end of my life, so I carefully, without anyone noticing, I got rid of a lot of my possessions, so that my daughter and my husband wouldn't have to deal with that,” Webb said.
In the midst of her severe infection, she also developed breast cancer and needed a double mastectomy.
After her surgery, her bout with C diff continued on. She was dealing with the infection between 2015 and 2018, and finally, after suffering for 3 years, she got some help from her family. “At the very last minute, my sister-in-law put me in touch with a doctor who did fecal microbiota transplants (FMT)…And when I did receive the FMT, about 8 hours after it, I knew that the infection was gone and from that moment on, I just got better,” Webb said.
The right image of Maryann Webb depicts her during a period when she was extremely sick with C diff. The image on the left is after she had the FMT and was recovered from the infection.
Image Credit: Maryann Webb
Advocacy
After her health transformation, Webb began getting involved in advocacy in 2019 including working with the C diff organization, the Peggy Lillis Foundation (PLF). She is now a member of the PLF's Board of Directors, and will be presented with the Advocate Award at the organization's 15th Annual Changing the Odds Gala this November.
Her journey with C diff inspired her to get involved and help others suffering from the infection. “I'm extremely honored. The reason that I do this advocacy work is I know what it's like as a survivor to have suffered through this infection,” Webb said. “I know how isolating and dehumanizing it is, and I know the stigma that's attached to it. I understand the pain and the hopelessness that people feel when they're going through this. So, once I recovered, it just seemed incumbent upon me to be able to reach out to the people who are still in that bed and offer them the hope that I didn't have, and the support that I didn't have, and try to create that kind of community for them.”
It is this last part she feels has not been recognized and people suffering from the infection need support.
“If you know someone who has C diff, please offer them any kind of support and assistance that you can and also encourage them to get some mental health as part of their treatment, because it's a very, very trying, isolating disease,” Webb said.
As part of her advocacy, she would like to see FMTs become more accessible. After years of suffering, she was able to get the procedure.
“I went to see this doctor, and he said, ‘I'll do an FMT for you right away’. Without getting into any of the tedious details of insurance, it was a little bit of a battle,” Webb said. “There is a system put into place for step therapy, which requires you to have failed treatments before you can have access to the FMT under emergency use authorization. So unfortunately, that's something that I would like to see change, because it requires a lot of pain and suffering unnecessarily.”
Another area she and PLF is involved in is trying to get the federal legislation, the Peggy Lillis Clostridioides difficile Inclusion Act, passed. Back in July, congresswoman Yvette Clark (D-NY) introduced this bill into the House of Representatives, which calls for C diff to be recognized as a nationally notifiable infectious disease and condition.
This bill is named in honor of Peggy Lillis, who was a single mother and kindergarten teacher in Brooklyn, New York who lost her life to a C diff infection. Her son, Christian, and his brother, Liam, cofounded the foundation in the summer of 2010, following the death of their mother from a community-acquired C difficile infection. Prior to getting C diff, their mother was a healthy 56-year-old kindergarten teacher. She was only sick for 6 days before succumbing to the infection.
Antimicrobial Resistance
For the general public, Webb would like people to realize the seriousness of the infection. “C diff is antibiotic resistant superbug, and we feel that the cornerstone of being able to develop any kind of treatment and awareness around this disease.”
