The Texas Medicaid program has agreed to cover costs for doctors to assess 4-month-old infertility patient Sufyan Pashai in Minneapolis, Minnesota. Sufyan’s older brother has metachromatic leukodystrophy (MLD), a neurodegenerative disorder caused by a gene mutation, and Sufyan is a candidate for treatment to prevent the disease from manifesting. This gene therapy called Libmeldy is not yet approved in the U.S. but available through a compassionate use program at M Health Fairview Masonic Children’s Hospital in Minneapolis. There are additional expenses that need to be covered, and Texas Medicaid’s decision remains unclear. Friends have set up a GoFundMe page to help the Pashai family with travel costs.
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