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Isle of Man Government cannot justify funding for new Duchenne treatment

Kirstie Hesketh with 7-year-old Finley, who is the only boy eligible for Translarna on the IoM Credit: Helen McKenna, ITV

A new drug treatment to help Duchenne muscular dystrophy sufferers walk for longer will not be funded on the Isle of Man.

The decision was made by the Department of Health and Social Care, who said this is based on advice from the IoM Clinical Recommendations Committee - because of the limited licence which the treatment has, more evidence to show that the drug is effective in slowing down the loss of walking ability would need to be submitted by the manufacturer.

Funding Translarna would cost the IoM Government an estimated £200,000 - £250,000 per year, which the DHSC said could not be justified.

When questioned by a local MHK, Kate Beecroft, regarding 7-year-old Finley Hesketh 's case, the Department's minister, Howard Quayle, replied that the drug will not be locally funded due to no evidence of effectiveness.

The National Institute of Health and Care Excellence (NICE) publishes guidance for the NHS in England and Wales. NICE has issued a draft recommendation that Translarna should be available on the NHS in England and Wales for patients with nonsense mutation Duchenne as part of what is, in effect, an extended study designed to provide data on clinical outcomes.

NICE is proposing that this NHS funded study (which they call a managed access scheme) should run for five years, after which the outcomes and funding will be reviewed.

The island's Committee concluded funding for a clinical study could not be a priority over other calls for resources.

The Hesketh's have been campaigning for their son, Finley, to receive Translarna treatment Credit: Helen McKenna, ITV

The Department has a limited budget with which to fund all health and social care for the people of the Isle of Man. It is not possible to fund everything that may be requested which means that difficult decisions on emotive issues have to be taken.

– Health and Social Care Minister, Howard Quayle


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Anyone seeking information about a special project to ensure the boys are always remembered at Mosslands High School can get it here.


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