A drug to treat a rare muscle disease which affects some 20 children in the Netherlands a year should not be included in the basic insurance package unless the price is halved, government advisory group Zorginstituut Nederland has said in new recommendations.

In addition, pharmaceutical company Novartis should also agree to payment on the basis of the actual results, the institute said.

Zolgensma, known as the most expensive drug in the world, is used to treat spinal muscular dystrophy (SMA) and costs €1.9m per treatment. The institute estimates that if the cost were halved, the drug would add some €11m to the Dutch healthcare budget a year.

Last year a crowdfunding campaign raised enough to send a baby known as Jayme to the US for treatment with the drug, which is based on gene therapy.

Novartis also caused controversy in 2019 when it said it would give away 100 treatments in countries outside the US with the recipients to be chosen at random via lottery.

The Netherlands, Belgium and Ireland are conducting joint price talks for the drug with Novartis.