[Congressional Record Volume 171, Number 73 (Thursday, May 1, 2025)]
[House]
[Page H1789]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                              {time}  1100
                             SHANE'S STORY

  (Mr. LANDSMAN asked and was given permission to address the House for 
1 minute and to revise and extend his remarks.)
  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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