Cystic fibrosis patients in Wales to get 'groundbreaking' drug

Rebecka Bow, whose nine-year-old daughter Sofia has CF, says her family are "absolutely over the moon"

Cystic fibrosis (CF) patients can now get a "groundbreaking" treatment on the NHS in Wales.

Nine in 10 people with the genetic condition could benefit from the three-drug combination called Kaftrio, which was approved by NHS England last month.

Health Minister Vaughan Gething said the "main elements" of an agreement had been reached with manufacturers Vertex.

Rebecka Bow, whose nine-year-old daughter Sofia has CF, said her family were "absolutely over the moon".

In a statement, Mr Gething said he was "very pleased" to announce the four-year deal for the "much-anticipated, ground-breaking" drug, adding it would help more than 400 people in Wales.

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Ms Bow, from Merthyr Tydfil, said the announcement had come as a shock after her four-year battle for access to the drug Orkambi.

"I was blubbering," she said. "It will take a lot of the burden off the NHS because it is the first drug that deals with the root cause of CF - the other drugs just deal with the symptoms."

Sofia, nine, will not be old enough to take the drug until she is 12

Cystic fibrosis can affect individuals differently, but the symptoms are caused by a build-up of thick sticky mucus in the lungs, digestive system and other organs.

Kaftrio combines three drugs - ivacaftor, tezacaftor and elexacaftor - to tackle the underlying causes of the disease, by helping the lungs work effectively.

Two of these drugs are already available in the UK on the NHS under different brand names - Orkambi (which is a combination of lumacaftor and ivacaftor) and Symkevi (ivacaftero and tezacaftor).

Children under the age of 12 will not be able to access the treatment because the European licence does not permit it.

Ms Bow said Sofia, who was given a maximum life expectancy of 41 when she was diagnosed, is not old enough to understand the significance of the announcement but hopes she does when she is old enough to take it.