The UMC Utrecht will soon be able to treat a few babies with the very serious muscle disease SMA with a new gene therapy. There is not yet a reimbursement scheme for the very expensive drug Z Accordingma, but the hospital has made agreements with the manufacturer.
The new drug costs about 1.9 million euros per treatment. The babies to be treated must meet various criteria, especially in terms of age, condition and weight. If all goes well, the disease cannot develop further by administering Z accordma.
Every year about twenty children with SMA are born in the Netherlands. In 2019 it was decided to include a test for SMA in the heel prick.
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