Minister Receives Costly Medications for SMA Muscular Disease in Children's Core Package NOW

For about eighty very young children with severe muscle disease, the expensive drug is available from August 1st.

The treatment of AMS with the drug Spinraza costs half a million euros per patient, then a quarter million euros a year. The Dutch health care institute advised Bruins to start discussions with the manufacturer on this high price

The precise outcome of these negotiations with the manufacturer Biogen remains a secret, but according to Bruins the price has been reduced to an acceptable level. "This is great news for these children and their families," according to the minister.

Proven Efficacy

Spinraza is only refunded if the product is proven effective according to Zorginstituut Nederland. This applies to children who have become ill at a young age and can still start treatment on time.

Also babies who have no symptoms but with the genetic abnormality caused by the MFA are eligible

. young) adults, according to Zorginstituut Nederland, there is no evidence of proven effective care. For this group, Spinraza is not included in the basic package yet. The minister is still trying to find out if this can be done in the future, based on further research on the effectiveness.

Bruins had already reached an agreement with Biogen, which reimbursed about 30 patients with the most severe form of SMA Spinraza. This concerned children up to five years old. The new agreement can help children up to the age of nine.

Age limit

Muscular diseases The Netherlands regrets that the age limit of 9.5 years has been set. & # 39; & # 39; We and doctors specializing in muscle diseases have repeatedly emphasized that there is no medical basis for this age limit and that patients for whom the drug would be very helpful are now – at least for the moment – deprived of this limit. 19659002] The association stresses that the Netherlands and Belgium jointly conducted the negotiations with Biogen and in principle also concluded the same contract. & # 39; & # 39; This is extremely unpleasant for Dutch patients, especially since the drug is also reimbursed for the target group in other neighboring countries like France and Germany. & # 39; & # 39;

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