“Doctors blocked access to life-saving medicine”


The manufacturer Novartis wants to raffle 100 doses of the medicine Zolgensma.

Image: AP

Specialists from the University Medical Center Utrecht (UMC) have for a long time blocked access to a life-saving medicine for children with SMA muscle disease, Omroep West reports. The drug, which offers a single treatment against the rare disease, is very expensive.

Correspondence from the hospital to parents shows that they have been told that they cannot compete for a special gene therapy. While that is possible according to the Healthcare Inspectorate, care minister Bruins and drug manufacturer Novartis.

The Swiss manufacturer Novartis raffled a total of one hundred doses of the life-saving agent Zolgensma. Children from Europe with Spinal Muscular Atrophy (SMA) can apply for this. However, parents of patients in the Netherlands are told by treating doctors that they are not eligible for the lottery.


Doctors would have acted that way because they do not know whether the inspection approves the lottery, said Omroep West. The raffle of the precious new medicine has hit the Netherlands and four other EU countries in the wrong way. According to them, the randomness of a lottery is “inhumane.”

The health ministers of Belgium, the Netherlands, Luxembourg, Austria and Ireland are very concerned about Novartis’ plans to raffle Zolgensma. Patients and their parents have high expectations of the new drug. This year the product may be on the European market.


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