The Chair of the Stormont Health Committee has challenged the Minister to ‘step up to the plate’ and secure life-saving drugs for a little boy from Limavady.
Earlier this week, the Sentinel told the story of little Callum McCorriston, a four-year-old from Limavady who is facing a race against time to get access to a potentially life saving new treatment.
Callum suffers from a rare form of muscular dystrophy known as Duchenne, a muscle wasting condition that means he will likely be wheelchair bound by the time he attends secondary school and effectively paralysed by his late teens. He is not expected to live beyond his twenties.
There is no cure for the condition, although a new drug - the first of its kind - has just been given a green light by the European Medicines Agency.
The Sentinel this week highlighted the fears of Callum’s Mum, Laura, that her son would miss out on the historic new drug even if it becomes available - as is likely - on the NHS in England.
“The NHS in England and the NHS in Northern Ireland are two different things”, she said. “The Muscular Dystrophy Campaign say it should be available within 18 months. It could take as long as that for it to be available on the NHS in England. But Callum doesn’t live in England, he lives in Northern Ireland. ”
Now, the Chairperson of the Stormont Health Committee, Maeve McLaughlin MLA, has given her backing to Laura’s calls for the drug to be made available. She said: “I think there is obviously a very real human story here. Anyone who hears that story couldn’t help but be moved to help.
“We need to get the Minister to step up to the plate here and ensure Callum gets access to the drugs he needs.
“There is a wider issue with access to drugs though. There are drugs available in Britain, NICE (National Institute for Health and Care Excellence) approved and they aren’t available in Northern Ireland. There are 38 cancer drugs that are NICE approved, for instance, that aren’t available here. Medicines should not be awarded by postcode.”
Laura is to meet the Commitee Chairperson on Monday at Stormont as part of a wider campaign for better services for people living with Duchenne Muscular Dystrophy.