Wishaw MP Marion Fellows, whose grand-daughter is battling cystic fibrosis, has blasted the refusal to give life-saving drugs to sufferers in Scotland.
This week, the Scottish Medicines Consortium (SMC) rejected calls for medicines Orkambi and Symkevi to be available for routine use by the NHS.
It said there were uncertainties about the long-term health benefits of Orkambi and Symkevi in comparision to its costs.
The two drugs can halt the deterioration of lung function – the main reason CF sufferers die.
Mrs Fellows two-year-old grandchild Saoirse was born with CF.
She said: “Saoirse is showing signs of starting to be affected by cystic fibrosis and will need more physio.
“There were so many people pinning all their hopes on that decision. I am really concerned about it. It has dashed so many hopes.
“The SMC is entirely independent of the Scottish Government and that’s as it should be but I wasn’t expecting it to be rejected out of hand.”
In December, it was announced that patients would get the drugs via individual requests, ahead of a decision by the SMC.
But the SMC rejected the drugs for general NHS use in Scotland on finance and efficacy grounds.
The decision means while patients can still apply to have the drugs, the power to prescribe will lie in the hands of individual health boards, with no guarantees of approval. However, all those who currently receive them will continue to do so.
Patient group Quest For A CF Cure greeted the decision with “enormous disappointment and disillusion”.
Mrs Fellows added: “The fight does not end here. People are not going to give up. I will be carrying on campaigning.”
