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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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VIDEO: Three brothers from Wirral battling a deadly illness with smiles on their faces

Watch the sad but heartwarming story of the three brothers battling against Duchenne Muscular Dystrophy.

Twins Dan, Sam and younger brother Tom Lloyd from Wallasey have nothing but praise for how their school has helped them.

Teachers say the challenges the boys have presented them have made their school a better place.

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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Today, the Government said they would allow new medicines to be tried out on patients years earlier than normal.

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Duchenne parents welcome 'fast track' drugs plan

The parents of a young boy from Greater Manchester, with an incurable muscle-wasting disease, have welcomed a plan to fast-track new treatments into the NHS.

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Two years on from setting up the Joining Jack campaign, thousands of pounds has been raised for research into the illness.

Find out more about the charity's work at www.joiningjack.org

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Kris Radlinski is in the sevens squad aiming to raise cash for DMD research Credit: PA

A team of rugby legends is flying out to Dubai to take part in a sevens competition and raise charity funds. Kris Radlinski and Martin Offiah are amongst the big names aiming to raise funds and awareness of Duchenne Muscular Dystrophy.

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