SDLP Foyle MLA Mark H Durkan
The treatment, already available elsewhere in the UK, is yet to receive sign-off for use in the North.
Said the Foyle MLA: “It is unforgivable that access to Risdiplam is yet to receive the green light here in Northern Ireland. Meanwhile, individuals suffering from Spinal Muscular Atrophy wait anxiously with continued uncertainty as to when this life-changing treatment will be made available.
“I have written to Health Minister Swann urging his sign-off on this important and potentially life-changing treatment for children, young people and adults who live with this muscle wasting condition on a daily basis.
“I cannot stress enough, that every day which passes without a decision, marks yet another day where SMA sufferers go without this life enhancing drug.
“Which is why I have also submitted powerful, harrowing testimonies from members of the APG on Muscular Dystrophy alongside my appeal to Minister Swann.
“For people like Michaela Hollywood, at just 30 years-old she has lost her eldest sister, Martina to this disease as well as countless friends.
“An SMA sufferer herself she has noticed significant deterioration in her condition which affects and controls all elements of her life.
“For her and her family, access to Risdiplam would not only help in halting the progression of SMA but it could potentially let Michaela regain her independence.
“It would even allow her to do the small things many of us take for granted; she speaks of “hugging my family back… doing more of the things I enjoy, like driving my van to the cinema, pump the air at a concert and wave at people I know.”
“Hearing from people living with SMA, in their own words, will no doubt convey a message loud and clear; a message stronger than any elected representative or medical professional could.
“By listening to the daily reality faced by so many, I hope will impress on Minister Swann the importance and significance of accessing this vital treatment as soon as possible.
“Time is crucial where health matters are concerned, we must ensure access to Risdiplam is not subject to further delay.
“This treatment is already available elsewhere on these islands, they have shown that delivery is possible even during precarious times. There is no reason why the North cannot achieve the same outcomes.
“The price of good health cannot be quantified and I have no doubt that access to Risdiplam will enhance the quality of life for so many people.
“Every day and every week is critical in terms of the progression of the condition; Minister Swann must act swiftly to ensure this vital treatment is delivered.”
Tags: