Limavady boy Callum McCorriston has been given a ray of hope in his family’s fight for potentially life-saving new medicines to be made available.
Last week, the Sentinel highlighted how Callum, who suffers from a muscle-wasting condition known as Duchenne muscular dystrophy, was facing a race against time for a new drug to be made available in Northern Ireland.
Callum’s condition means that he could be wheelchair-bound and beyond the reach of even the breakthrough new medicine – known as Translarna – by the time it has been granted approval for use on the NHS in Northern Ireland.
His mother, Laura, had expressed the fear that, even if the drug was granted approval in England, it may not be available to her son in Northern Ireland.
After the Sentinel highlighted Callum’s story last week, Laura has since gained the backing of the chair of the health committee at Stormont, Maeve McLaughlin, and Foyle MP Mark Durkan, who sits on an influential all-party parliamentary group on muscular dystrophy in Westminster.
On Monday, the local mother took her fight to Stormont, where she was given an assurance that, so long as the drug is approved for use on the NHS in England – as is expected to happen– it would be made available in Northern Ireland too.
That assurance came from Dean Sullivan, director of commissioning of services for the health and social care board, who did add the proviso that the treatment would need to be found to be cost-effective.
“There was a man named Dean Sullivan, the director of commissioning of services for the Health and Social Care Board, who spoke to us about whether Translarna would be made available”, Laura explained. “He was challenged and told ‘we need a clear indication of how and where this will be made available. He said that if it is available in England it will be available here, as long as it is cost effective. Maeve McLaughlin stood up and said, ‘you are on record and you have said it will be available’. He said again it will, if it is cost effective.”
Another to have backed Laura’s campaign is Foyle MP Mark Durkan, who sits on an all-party parliamentary group at Westminster for muscular dystrophy.
Speaking to the Sentinel, Mr Durkan said: “Clearly, the Minister and the department should be bending their budget to make this available.
“In these circumstances, where there are a smaller numbers who require the drugs, even with the cold perspective of a health service economist, it should be cost effective.”
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