Shane's Story

Floor Speech

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Mr. LANDSMAN. Mr. Speaker, I rise today to share a story of a constituent and friend, Shane. Shane has a rare and painful disorder that makes the skin incredibly fragile and there is no cure.

Thanks to breakthrough gene therapy, one Shane helped to test, he and others finally have hope, but that hope is diminishing.

At Trump's urging, congressional Republicans are proposing a nearly $1 trillion cut in healthcare and have already slashed rare disease funding by over a billion dollars. They are blocking a policy that would allow Medicaid to cover out-of-State care essential for families with children or loved ones with this rare condition, especially since so few hospitals specialize in rare diseases.

Shane lives in Cincinnati, so he has Cincinnati Children's Hospital, but with these cuts, services at Children's will be undermined.

Shane told me recently: I want to use whatever time I have left to help others with this and other rare diseases.

I just wanted to come to the floor today to thank Shane. We are fighting for him and we are fighting with him and every family facing these terrible decisions with these healthcare cuts.

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