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.
A man from Manchester who is fighting a deadly illness says he's so desperate to try out a new treatment, he's prepared to pay for it himself, and sign away his legal rights.
Carl Tilson who's 27 and from Manchester, has the muscle wasting disease Duchenne Muscular Dystrophy.
The drug that could help him is called SMT-C1100 Utrophin, but its manufacturers have refused Carl's request.
Paul Lenihan of Action Duchenne discusses whether drug companies are doing enough to combat the condition.
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.
The parents of a seriously ill boy say that Government plans to fast-track new drugs are offering them some badly needed hope for the future.
Jack Johnson, from Orrell near Wigan, has the incurable muscle wasting disease Duchenne Muscular Dystrophy.
Today, the Government said they would allow new medicines to be tried out on patients years earlier than normal.
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.
Five-year-old Jack Johnson, from Orrell, has Duchenne Muscular Dystrophy. The condition attacks every muscle in the body and eventually stops the heart. Most people with DMD do not live beyond their teens or 20s.
Jack's parents are delighted that Health Secretary Jeremy Hunt has published details of a scheme to get promising drugs prescribed, even before they have been granted a licence for use.
The 'Joining Jack' campaign, named in the youngster's honour, is raising funds for research into Duchenne.
A team of rugby legends are competing in the Dubai Sevens to help raise awareness of Duchenne muscular dystrophy.
Five-year-old Jack Johnson, the son of former Wigan rugby league star Andy, suffers from the muscle-wasting disease for which, as yet, there is no cure.
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
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.
A woman from Merseyside is desperate to make it to her husband's bedside before he dies.
Scott Sands has been given just days to live after the muscle wasting disease he suffers from took a turn for the worse. He lives in Florida but his wife who has the same illness lives in Liverpool.
Rebecca Sands is now hoping someone will help her find the money she needs to get back to America after she was forced to come home for treatment herself a few weeks ago. Gregg Easteal reports: