WELSH CYSTIC FIBROSIS PATIENTS STILL WAITING FOR LIFE-CHANGING DRUG

Welsh Government delay access to three remaining patients despite agreement to provide the drug five months earlier

Three patients with cystic fibrosis remain untreated in Wales despite a life changing drug receiving funding approval in December 2015. The drug, which could dramatically improve the quality of their lives and life expectancy has not yet been provided.

The Welsh Government approved the All Wales Medicine Strategy Group’s recommendation that Ivacaftor (Kalydeco®) should be made available to patients with Cystic Fibrosis over six who have one of the eight Non-G551D gating mutations over five months ago. Despite this, the three people eligible for it in Wales are yet to receive it. The treatment received its European regulatory approval for in July 2014 and patients in England with these mutations have been on the treatment since July 2015.

Ivacaftor (Kalydeco®) is proven to significantly improve lung function and slow the progression of cystic fibrosis, reducing time spent in bed on intravenous antibiotics from five weeks to less than five days a year.

One of the three patients who could benefit from Ivacaftor (Kalydeco®) in Wales is Mike Board. The 31 year old from Pontypridd expressed his disappointment; “It’s very frustrating that the funding approval for Kalydeco® was given back in December yet nothing has materialised – it’s like having something dangled in front of you that you can’t have. My health has declined over the last few years so the prospect of this drug is exciting for me – it could make such a difference to my life. My partner and I are also going through IVF so timing is even more precious – I just can’t understand why we’re being denied it when the funding has been agreed. It’s even more frustrating knowing that patients in England, Scotland and Northern Ireland are on this treatment already – it’s unjust! With a condition like CF, every day matters so much.”

Ed Owen, Chief Executive at Cystic Fibrosis Trust said: “It is completely unacceptable that patients should be made to wait for this life-changing treatment, risking serious deterioration in their condition in the process.”

The Cystic Fibrosis Trust has written to Vaughan Gething, Cabinet Secretary for Health, Wellbeing and Sport, requesting this issue is investigated urgently and demanding a clear explanation of the delay.