Legislation inspired by Dodge County family would improve organ transplant accessibility

Oct. 11—MADISON — State Rep. Mark Born (R-Beaver Dam) and Sen. John Jagler (R-Watertown) were joined in Madison by a Brownsville family Thursday to testify about legislation they authored which prohibits an individual from being denied an organ transplant on the basis of a disability.

"This legislation will have a meaningful impact for real people across our state," Rep. Born said. "It will help ensure individuals with disabilities are afforded the same consideration for life-saving medical care as those without disabilities. I am proud to be an advocate for this bill and for families like the Kulczewski's."

Born and Jagler authored Assembly Bill 539/Senate Bill 538 after hearing from constituents that their son was ineligible for an organ transplant due to a disability that is unrelated to his transplant needs. Malix Kulczewski, who has Down syndrome, was born with a heart condition. When discussing options with his medical team, Malix's parents were informed that he would not be eligible for a heart transplant due to having Down syndrome.

"Everyone deserves a chance at leading a healthy and happy life," said Jagler. "Those needing a transplant face enough challenges and being discriminated against because of a disability shouldn't be one of them. My daughter Grace, who has Down syndrome, is thriving. She has grown into a wonderful member of the community and runs her own business. If her life had been cut short because of being refused an organ transplant it would have been a tragedy beyond comprehension."

The Assembly Committee on Health heard from Tom and Michelle Kulczewski, Malix's parents, who traveled to the State Capitol to testify at the hearing.

"Imagine being in a room of doctors, making the biggest decision of your life, then being told a viable option cannot even be considered on your fourth child, but would be considered on any of your other three children. That is discrimination," Tom Kulczewski said.

"That is what we are asking the state of Wisconsin to end," Michelle Kulczewski said. "End the practice of discrimination of organ transplantations of the basis of a disability."

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