The Chief Executive of the Cystic Fibrosis Trust, David Ramsden, has written to thank me for the role I played in the campaign for access to cystic fibrosis medicines. This follows last week's news from NHS England that eligible people with cystic fibrosis living in England will have access to life-saving drugs Orkambi and Symkevi as part of an agreement with the manufacturer, Vertex Pharmaceuticals.
The Cystic Fibrosis Trust has fought a long campaign for access to precision medicines since Orkambi was licensed for use four years ago. I was pleased to be able to speak up for my constituents in the 2018 debate on the subject, and have kept constant pressure on health ministers on behalf of young people in Brentwood and Ongar living with this disease to ensure the negotiations with Vertex were kept on track.
Sadly, I am aware of constituents who have lost family members and friends to cystic fibrosis, and the Cystic Fibrosis Trust has noted the availability of the drugs has come too late for some. Its Chief Executive, David Ramsden said:
"The breakthrough is a victory for people with cystic fibrosis in England who are eligible and will now have access to drugs that stabilise their lung health and reduce the need for hospital admissions, but this will be bittersweet news for those who have endured irreversible health decline and the families of those with cystic fibrosis who died waiting."
I've heard back from constituents who are delighted with the news the drugs are now available, and thanking me for my involvement in helping them access what they have wanted for so long. I hope those who need the drugs will see an improvement in their day to day living, and their quality of life improves as the medication does its work.
