Photos: Courtesy of John Czwartacki
Remember John "Cz" Czwartacki? Worked on the Hill for big names like John Boehner, Bill Paxon and Trent Lott and then in the Trump administration under Mick Mulvaney? He also has MS, and he's launching a patient advocacy group.
Driving the news: The group — named Survivors for Solutions — will "promote and protect patients’ access to innovative treatments and therapies," per an announcement provided exclusively to Axios.
The Inflation Reduction Act's drug pricing provisions and the threat they pose to the development of new drugs are the impetus for the launch, Czwartacki told me.
- More broadly, the goal is to “highlight and create the voice for these voiceless patients who are waiting in a hotel room in Memphis at St. Jude's while their kid is trying to get cured. These people don’t have time to fight this battle."
The backstory: Czwartacki was diagnosed with MS in the '90s early on in his career, which began when Boehner was a freshman in the House. Shortly afterward, he began treatment with his first drug, but it didn't help.
- He continued to battle the disease as he transitioned over to the Senate, eventually finding a drug that allowed him to live the next two decades of his life with little symptom progression.
- He got married and had four sons. He's now on his fourth MS therapy, and although he's still fighting the disease, "I have my life, and I can be with my kids."
The bottom line: Czwartacki wants to use his professional experience to help ensure that other patients have access to life-changing medications, as he did. He says there's currently a void.
- “I have this journey, if I can get some use out of it — there’s no AARP, there’s no Chamber of Commerce that represents patients generally," he said.
