Cystic fibrosis: Family fury over drug decision wait

A family said it is "infuriated" a life-changing drug for those with cystic fibrosis has still not been made available to patients in Wales.

Orkambi helps lung function of people who have the genetic lung disease, for which there is no cure.

It is available to patients in Scotland and NHS England gave the green light to its use last Friday, but NHS Wales is still discussing its use.

Rebecka Bow, whose daughter has cystic fibrosis, called for a fast decision.

"Time is not on the side of a CF person," said Ms Bow, mother of Sofia, eight, who has the condition.

"Day by day, morning to night can be a deterioration in that person or that child, that young adult's life. 

"We haven't got the time on our side. So it's quite infuriating after this length of time that we find ourselves here."

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Orkambi improves lung function and reduces breathing difficulties and can be given to children as young as two.

The firm behind it previously wanted to charge £100,000 per patient per year, with Welsh Government officials meeting officials from the manufacturer Vertex on Friday.

Rebecka Bow said her daughter Sofia does not have time to wait for a decision

They discussed the details of the terms reached with NHS England and how the agreement might apply to Wales.

"We will be considering the detail of the agreement and continuing our discussions with a view to reaching an agreement to give patients in Wales access to Orkambi and (another drug) Symkevi at a fair price," said Health Minister Vaughan Gething after the meeting.

Mrs Bow, from Merthyr Tydfil, responded by saying: "I'm really lost as to what can still be discussed. 

"We were desperately hoping that a deal could have been achieved today. 

"How long do people think that we can keep waiting?"

It is estimated about half of the 10,000 patients in the UK could benefit from the drugs.

Only about 50% of those with the condition live to the age of 32.