A Limavady mum’s hopes have been dashed after the NHS said this week they had halted the assessment of a breakthrough drug she claims would prolong her son’s life.
Laura Smith’s son, Callum McCorriston has Duchenne muscular dystrophy, an incurable muscle wasting disease. This week she was contacted by the Muscular Dystrophy Society alerting her to the news that assessment of the drug had been put on hold.
“My hope was that the NHS would make the drug available on prescription in England, and that Northern Ireland would have followed but, as far as I can tell the process has been put on hold,” she said.
“We had hoped it would have been available here in April but, right now we don’t know. It seems to be at a standstill because this has come completely out of the blue. I’m just gutted because there is no indication of when, or if, it will be looked at again. It was a ray of hope and now that’s gone.”
Laura, who has been in contact with health minister Jim Wells, said she is “frustrated” and there is no clarity on what is happeneing.
“The prognosis for Callum isn’t good. He will lose the ability to do what he can do, including breathing. It’s soul destroying,” said Laura. “All along we have waited for a treatment. Translarna would have prolonged what Callum could do and how long he could do it for, and at the minute that’s all we had but now we don’t have that.”
Laura added: “It’s up to the NHS to decide if the drug becomes available on prescription but, for us, as parents to think that a group of people somewhere are playing ball with my son’s life, well I would appeal to them to make the right decision and make it available.”
Sinn Féin Foyle MLA Maeve McLaughlin is chair of Stormont’s health committee.
“I have been working with families dealing with Duchenne Muscular Dystrophy and they are devastated the NHS has halted the assessments of a new drug Translarna. The families had hoped this drug would offer some hope in dealing with this condition,” said Ms McLaughlin, who added she has tabled a question to the health minister asking him to outline the rationale for the assessment tool for Translarna being put on hold, and what implications this will have for patients across the North.
Foyle SDLP MP Mark Durkan sits on Westminster’s All Party Parliamentary Group for Muscular Dystrophy. He said the prospect of the treatment being available on prescription had provided a “real sense of hope and encouragement”.
“This news will really knock people back,” said Mr Durkan. “The Group will be working with officials and clinicians, and try hard to get a basis to move this forward.”