AN East Hampshire cystic fibrosis families campaigner has expressed thanks to former Health Secretary Matt Hancock, NHS England, Vertex Pharmaceuticals and NICE for “finally putting the needs of cystic fibrosis patients first”.

Susan Barnes was speaking after the breakthrough announcement by NHS England of a two-year managed access agreement with Vertex Pharmaceuticals that will make lifesaving drugs available to people in England living with the disease.

Mrs Barnes said: “Families who have loved ones with cystic fibrosis were delighted and hugely relieved to receive the news that NHS patients will now have full access to cystic fibrosis precision drugs orkambi, symkevi and kalydeco.

“It is fair to say that this is a decision that most of us had come to believe would never happen. It’s a decision that will have a profound effect in both improving the quality of life for people living with cystic fibrosis and giving them more of those quality years with their family and friends. It will also have a huge beneficial impact on the mental health of both patients and families.”

Cystic fibrosis families have battled for four years to secure access to these drugs that have been shown to slow the decline in lung function and reduce hospital admissions.

But the decision has come too late for some.

Mrs Barnes said: “Since orkambi was licensed in November 2015 for use in Europe, more than 270 people who could have potentially benefitted from that drug have died.”

There are 8,200 people with cystic fibrosis living in England and approximately 4,387 will stand to benefit from these drugs, but access does not include those living in Wales and the Channel Islands and the campaign will continue on behalf of those families.