Children with genetic spinal disease entitled to receive expensive medicine

An expensive spinal muscular atrophy medicine for children will be covered for by Dutch health insurance from August.

The NOS reported on Thursday that health minister Bruno Bruins has agreed an ‘acceptable price’ with manufacturer Biogen for the medicine, Spinraza.

It had asked for €500,000 per patient for the first half year of six injections, and then €250,000 a year for follow up treatment of three injections a year.

But the National Health Care Institute ruled in January that this was too expensive, and so Bruins has agreed a new price – which has not been made public.

The drug will only be funded for children under nine and a half, since its effectiveness in older children has not been sufficiently well established. The 350 Dutch children in this situation may be able to have ‘potentially promising treatments’ under certain conditions, reports the NOS.

SMA causes muscles to weaken over time and can result in total paralysis. Spinraza stimulates the body to produce a variant of missing protein which supports nerve cells in the spinal cord that are implicated in the disease.


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