A Limavady mum campaigning to get a potentially life-changing drug for her terminally ill son has accused health officials of leaving her “in limbo, again”.
Laura Smith spoke of her frustration after the Health and Social Care Board (HSCB) and the Health Department responded with what she described as “non answers” regarding a recommendation to fund the drug, Translarna, on the NHS in England.
Laura has been campaigning for Translarna to be made available in Northern Ireland and believes it would enhance the life of her son Callum, aged 6, who has Duchenne muscular dystrophy.
Laura said the National Institute for Health and Care Excellence (NICE) decision, made public on Friday, was Callum’s last hope. She said she had been assured by officials that “what NHS England does, Northern Ireland will absolutely follow suit”.
Both the HSCB and the Department of Health say they are awaiting the final guidance from NICE, expected in coming weeks, and they will consider the most effective way to ensure people in Northern Ireland are able to access this and other new innovative medicines.
Laura said: “No one has been able to tell me anything.”
“The HSCB knew the NICE decision was coming so they should have had a plan in place to say ‘this is what’s going to happen in Northern Ireland’. We’ve been left in limbo again and it’s very upsetting. I don’t think the HSCB see the urgency in this at all.”