SDLP Foyle MLA Mark H Durkan
These treatments were secured for patients in Northern Ireland in 2019 and 2020 respectively.
However, draft guidance from NICE has deemed the drugs too expensive for use on the NHS.
He has written to the Department of Health ahead of the final publication of NICE guidance in March 2024 urging the retention of these vital treatments.
Said the Foyle MLA: “These transformative treatments were secured after a lengthy and hard fought campaign.
“I’ve been contacted by parents this week, highly distressed that their children’s access to this treatment may be stripped away.
“It was an uphill battle to secure these cystic fibrosis drugs in the first place.
“I stood side by side with campaigners and their families, who fought fervently and undeterred for years despite so many setbacks. Their efforts mustn’t be for nothing.
“I’ve heard first-hand accounts about how these drugs have transformed lives here, particularly for young people living with the disease.
“These modular treatments are powerful, vastly improving the quality of life for patients with the degenerative disease.
“The price of good health cannot be quantified – it is not a luxury given to all but it is essential that access for these hard-won medical advances are retained for those who need it most.
“A promise was made to patients to deliver these drugs; it must not be broken.
“I’ve written to the Department of Health ahead of NICE’s final recommendation to ensure these treatments are sustained not just for patients currently availing of them but expanded to allow more people living with CF to access these life changing medications.”
