Monday 21 September 2020

Cystic fibrosis drug will be paid for after all, outgoing health minister says

A controversial drug which can help around half of cystic fibrosis sufferers will be included in the basic health insurance package after all, outgoing health minister Edith Schippers has announced.

Schippers said she had managed to make a last-minute deal with drugs firm Vertex for the medicine, called Orkambi, after earlier dismissing the drug as not being cost-effective enough.

A Dutch  lobby group for people suffering from cystic fibrosis had said it was considering taking legal action against the Dutch state for refusing to fund a drug which relieves some of the symptoms.

The drug costs some €170,000 per patient per year. The Dutch healthcare institute has also said the effect of the drug – which is suitable for around half the 1,500 cystic fibrosis patients in the Netherlands – is too small to be worth the money.


Patients who have used the drug in trials, however, disagree and specialists have said the medicine not only extends their lives but also improves the quality of their lives drastically.

Schippers said she had now managed to strike a deal with Vertex – the details of which remain confidential – and the drug will be included in the basic package from November 1.

‘It is a shame that the deal must be kept secret, but without that, there would be no deal at all,’ she said. Some 1,500 people in the Netherlands suffer from cystic fibrosis and the drug can help around half of them.

Cystic fibrosis is an inherited disease which affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky which then plug up tubes, ducts, and passageways, leading to coughing, lung infections and damaging lung and liver function.

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