The Ministers of Health from the Netherlands, Belgium, Luxembourg, Austria and Ireland all spoke out against an expensive medicine against the deadly muscle disease SMA being “raffled”. Swiss pharmaceutical company Novartis wants to give the super expensive medicine Zolgensma free to 100 patients outside the United States via a raffle, NOS reports.
The medication is intended for young children. A one-time injection costs around 2 million euros, making Zolgensma the most expensive medicine in the world. The U.S. is excluded from the raffle, because it is the only country where the medicine has already been approved. Novartis applied for marketing authorization of the medicine in Europe, and in the meantime the company wants to raffle Zolgensma off among patients.
In a joint statement, the European Ministers spoke out against this. While the raffle is allowed – “Companies are of course free to make their products available to patients before a product is allowed on the market and before there is any reimbursement” – Novartis is giving hope to parents of children with SMA without explaining how it works.
“The great uncertainty and the lack of transparency are totally unacceptable,” they said. “It only causes more suffering to the families involved.”