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Patients receiving Nusinersen or Spinraza against SMA (Spinal Muscular Atrophy) muscular disease run the risk of accumulation of cerebrospinal fluid and therefore of a head of water, according to the Medicines Evaluation Board (SEM). The likelihood also does not seem very high: five cases of this adverse reaction have been reported worldwide since the introduction of the drug.
According to Biogen, 5,000 patients worldwide are treated with this drug and the causal relationship with these symptoms has not yet been definitively established.
The Drug Evaluation Board (MEB) advises patients and their caregivers to be alert to the symptoms of a water head: vomiting, headache, reluctance, a lot of sleep and less alert reaction. According to the Commission, however, the risk is such that the drug is certainly not inadvisable
Basic Package
It has recently been decided that Spinraza will be included in the basic package for approximately 80 young children with of SMA in the Netherlands. can be effective. The treatment actually costs half a million euros per patient the first year and then a quarter of a million euros a year, but a price adjustment has been negotiated successfully. (ANP)
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