Cost of expensive SMA medicine to be reimbursed

In future the National Institute for Health and Disability Insurance (NIHDI) will reimburse the cost of treatment with Zolgensma, a medicine used to treat the neuromuscular disorder spinal muscular atrophy (SMA). SMA results in the loss of motor neurons and progress muscle wasting. It is usually diagnosed in infancy or early childhood. If left untreated it is the most common genetic cause of infant death. 

Meanwhile, the Flemish Health Minister has announced that screening for SMA will be among 7 rare conditions that will soon be added to the list of conditions that new-born babies are screened for in Flanders.

Zolgensma hit the headlines two years ago due to the case of Baby Pia. She had SMA and her parents wanted her to be given treatment. However, the only medicine available to treat the rare condition, Zolgensma, was (and still is) extremely expensive and the NIHDI didn’t reimburse those that needed to use it. A crowdfunding action was launched to raise the 1.9 million euro needed to pay from Baby Pia’s medicine. The money was soon raised and Baby Pia was able to start her treatment.

From now on people living with SMA in Belgium, The Netherlands, Ireland and Austria will have the cost of Zolgensma reimbursed by their countries' respective state health insurance bodies. The four EU countries have done a deal with the company that manufactures the drug and will be able to purchase it at a lower price than it is available to other countries. In a press statement NIHDI said that this is “An historic cooperation” between various European states.

Meanwhile, the Flemish Health Minister Wouter Beke (Christian democrat) has said that some time in 2022 or 2023 Flanders will start screening new-born babies for SMA and 6 other rare conditions. If SMA is discovered quickly treatment can commence early and irreparable damage to an infant’s health be averted. Around ten babies with SMA are born in Belgium each year.

 

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