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Committee hears personal testimony urging addition of MLD to newborn screening; bill laid over
Summary
The Health Finance and Policy Committee heard emotional testimony from a mother and clinicians urging that metachromatic leukodystrophy (MLD) be added to Minnesota's newborn screening panel. Lawmakers discussed federal and state review processes; the chair laid House File 1029 over for possible inclusion in an omnibus bill.
A bill to add metachromatic leukodystrophy, or MLD, to Minnesota's newborn screening panel drew emotional testimony Wednesday as the Health Finance and Policy Committee considered House File 10‑29.
Representative Paul Torkelson presented the bill and said it is intended to give families affected by rare diseases “a chance ... to share their voice with the legislature and ... highlight how important this work is.”
Erica Barnes testified on her own behalf about her daughter, Chloe, who was diagnosed with MLD after a period of developmental decline. Barnes recounted Chloe's diagnosis and death in…
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