Protest held outside the Senedd over lack of availability of cystic fibrosis drug

A protest has been held outside the Senedd over the lack of availability of a treatment which has been hailed as a "major step forward" for people with the condition.

Last year the National Institute for Health and Care Excellence (NICE), which helps decide which new treatments should be available on the NHS in England and Wales, rejected the drug Orkambi, which has been shown in clinical trials to improve lung function and respiratory symptoms in people with the genetic condition.

The charity the Cystic Fibrosis Trust said that since Nice undertook its appraisal, new data had been published that suggested Orkambi almost halved the rate of decline in lung function in people with the disease.

It said that studies have shown that if children with cystic fibrosis start taking Orkambi early enough they could have a near-normal life expectancy.

Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage. Only around half of people with cystic fibrosis live to celebrate their 40th birthday.