Living With C diff: Witnessing and Participating in an Evolution of Awareness, Medical Care
Dennis Petragnani has battled gastrointestinal issues for years, and he shares what he sees as the transformation of change in the public and medical community talking about C diff and therapies around it, and the kinship with people he has met through the Peggy Lillis Foundation.
Dennis Petragnani was 18 years old when he was first diagnosed with severe ulcerative colitis. It was the 1990s and he remembers no one was discussing gastrointestinal issues. There was an unawareness not only in the general public but even the pharmaceutical industry and the medical community were not actively addressing these health problems.
“No one was talking about Crohn's or colitis; there weren't any drug commercials on TV during those days,” said Dennis. “A lot of doctors just felt that: ‘oh, you have a nervous stomach; you have a nervous system; you're probably under stress, you're depressed.’”
It wasn’t until he was seen by a doctor in a New York City hospital that he started to understand the nature of the chronic condition he was suffering and how his gastrointestinal issues were taking a toll on him. For years, his health has seen a series of ongoing issues including numerous surgeries, the installation of a J-Pouch after the removal of his large intestines, and bouts of C diff.
Hitting the Doughnut Hole of Medical Coverage
At one point, when Dennis was in the hospital being treated for a severe case of C diff, his medical insurance would not pay for the cost of treatment, which was a course of vancomycin for 14 days at a cost of $1000. His surgeries and medications had caused his insurance to hit the dreaded Medicare donut hole—a point where there is a temporary coverage gap on what the drug plan will cover.
“The coverage gap begins after you and your drug plan have spent a certain amount for covered drugs,” Medicare states on its site. “Once you and your plan have spent $5030 on covered drugs in 2024, you're in the coverage gap.”1
When he was in the donut hole, his physician stepped in and helped. “My doctor actually went to the pharmacy and he paid for my medication, so I could get out of the hospital because he feared that it'd be better for me to stay home with a treatment than to be at such a high risk in the hospital. At the time, there was a lot of staph infections and C diff running rampant in the hospital…and he just feared for my life.”
PLF: Openly Discussing C diff, Finding Comfort
Dennis had known Peggy Lillis Foundation’s (PLF) Cofounder and CEO Christian John Lillis through mutual friends and that was his connection to getting involved in PLF. Last month, Dennis attended the PLF 2024 C diff Advocacy Summit in Washington DC. PLF is C diff patient advocacy organization, and Dennis was struck by people’s stories and that pharmaceutical companies were participating at the conference.
“It's extraordinary to hear people's stories, and just see now what the drug companies are doing. Christian has certainly put a name to this, and he's raising more and more awareness to it,” said Dennis.
Dennis appreciates what PLF is doing and how the medical community and pharmaceutical companies are addressing the problem.
It has been an evolution from when Dennis first started experiencing health problems to now. He is struck by how there is awareness, emphasis of treatments, and clinical care by the pharmaceutical companies and the medical community.
“In the early days of Crohn's and colitis, no one heard of C diff. I mean, it wasn't part of the vernacular, sitting at the kitchen table with your family at a holiday and talking about C diff as it was like heart disease, or cancer, or diabetes.
This especially rings true as Dennis has had to battle his own physicians to listen to him as they thought his issues were psychosomatic. Despite his battles with gastrointestinal issues, Petragnani has found kinship and a community through PLF.
"When I started to do some work with the Peggy Lillis Foundation, I was able to meet the community that certainly knows what it is and knows what it's like to have the side effects, whether themselves or they had a family member…I feel blessed to be a part of the Peggy Lillis Foundation.”
Contagion is partnering with PLF in this ongoing series, Living with C diff, as Dennis and others bravely talk about their experiences dealing with the condition.
