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

Health minister Edith Schippers has refused to include the drug Orkambi in the basic healthcare package after failing to reach a deal on price with its maker Vertex. 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.

Effective

Patients who have used the drug in trials, however, disagree. One victim, Jacquelien Noordhoek, told television chat show Pauw on Tuesday night that she is looking into potential legal procedures.

In particular, Noordhoek says she has doubts about the procedures which have been followed and says the state may be failing to provide patients with adequate care.

‘Yes, the medicine is expensive, but other factors need to be taken into account, such as the welfare of young patients… we have seen that this medicine not only extends their lives but also improves the quality of their lives drastically,’  several doctors said in the Volkskrant earlier this week.

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.