17 January 2020

A life-extending drug for cystic fibrosis, newly available on the NHS, has been prescribed to 71 patients at Frimley Park Hospital.

This new medication is now available to half of the 140 adult patients at Frimley Park's Cystic Fibrosis Unit.

Patients at the hospital’s specialist cystic fibrosis unit have described the ‘disease-modifying’ drug Symkevi, which treats the underlying cause of the disease, as a potentially life-changing treatment.

Consultant chest physician Dr Alex Higton, who runs the adult clinic, said: “It’s wonderful. Our patients are all really excited.

"For the first time my team and I have been able to do something that treats the actual disease, not just the complications that result from it.

"We've seen patients coming back to clinic after a few weeks on the drug who feel dramatically better, less breathless and have more energy. One patient feels so much better that she has decided to come off the transplant waiting list.

"For younger patients in particular, this could be a real game-changer, offering the promise of a more normal life.”

The unit is one of only 21 specialist adult clinics in England, with the nearest other ones being in Southampton, London and Oxford. In October last year, NHS England reached a deal with drug manufacturers Vertex Pharmaceuticals to enable patients to access the expensive new drug – and it was made available to the NHS 30 days later.

Dr Higton said: “We were, I believe, the first specialist clinic nationally to see every one of our patients who was eligible for it. We had advance notice this was coming and arranged dedicated weekend clinics to assess all our eligible patients in clinic to ensure it was safe to prescribe, as soon as possible.”

Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage. Symkevi can slow decline in lung function and reduces breathing difficulties.

The treatment does not work for all patients with cystic fibrosis – only those with specific genetic mutations.

It is estimated about half of the 10,000 cystic fibrosis patients in the UK will benefit from Symkevi, Orkambi and Ivacaftor which were made available on the NHS as part of the deal.

At present, only about half of those with the condition live to the age of 32.