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Lizzie follows in Beryl Burton's tracks

Winning Lizzie Credit: PA

Otley cyclist Lizzie Armitstead has followed in the footsteps of the great Beryl Burton in becoming only the fourth Briton to win the world championship.

The 2012 Olympic silver medallist launched a late sprint to take the title and was in floods of tears seconds after crossing the finish line in Richmond in the United States. The 26-year-old described winning the rainbow jersey as a dream come true.

Sam Brown to find out about drug funding in January

Otley boy, Sam Brown, will find out in January if the life-saving drugs he needs will be approved.

Sam, with mum Katy and dad Simon Credit: Press Association

Six-year-old Sam has the the ultra-rare disease Morquio Syndrome, a degenerative disease where patients with the condition appear healthy at birth, but within 24-36 months start to show symptoms of severe internal problems.

The average life expectancy of someone with Morquio Syndrome is just 25 years.

With the Vimizim drug yet to be approved for use in England by the National Institute for Health and Care Excellence (NICE), Sam is unable to receive it through the NHS. The company producing the drug, BioMarin, are providing the drug to Sam at their own cost and only on a trial basis.

NICE announced earlier this month that they are leaning towards making a positive decision.

Health chiefs hint at approval for Morquio drug

Health chiefs look set to approve a pioneering drug which patients of the ultra-rare and life-limiting Morquio Syndrome say could be life changing.

Morquio patient Sam Brown and his parents outside 10 Downing Street Credit: ITV News

Health regulator NICE has today issued draft guidance conditionally recommending the drug Vimizin after a 16-month battle by campaigners.

Morquio Syndrome is a degenerative condition which limits growth and mobility and shortens life expectancy to an average of 25 years.

There is no known cure but Vimizim - an enzyme replacement therapy - has been shown to improve lives by allowing children to grow, improve stamina, walking and pain.

Vimizim was licensed by the European Medicines Agency in April 2014 and is now reimbursed in over 30 countries, but in England has only been temporarily available to those on the original clinical trial thanks to the goodwill of manufacturer BioMarin.

Campaigners have since been locked in a hard-fought battle to persuade decision-makers to fund the drug to Morquio’s patients - which numbers just 88 in England including six year old Sam Brown from Otley who has been treated with Vimizin for the past three years.

“It’s the most encouraging situation we’ve been in throughout the journey so far. It finally feels like we’re being listened to and taken seriously."

– Katy Brown Sam's mother


Sam Brown restarts life-saving treatment

A boy from Otley who suffers from a rare and life-threatening disease has restarted his treatment today.

Six-year-old Sam Brown has Morquio Syndrome. It is a degenerative disease where patients with the condition appear healthy at birth, but within 24-36 months start to show symptoms of severe problems. Average life expectancy of someone with Morquio Syndrom is just 25 years.

His family are campaigning for a drug called Vimizim to be funded by the NHS. Vimizim is an enzyme replacement drug that targets the enzyme deficiency in people with Morquio. Clinical trials have found that it improves energy and stamina levels, and allows children with Morquio to grow taller than they would if untreated.

NHS England has deferred its decision on funding the drug because NICE has said that doubts exist about the benefits and cost of this treatment in its recent draft guidance.

Drug manufacturer BioMarin has temporarily restored free provision of the drug until October.

Sam Brown's father joins campaigners in Morquio drug protest

The father of a little boy from Otley who has a rare disease joined campaigners in London today to try to secure funding for a life-changing drug.

Simon's Brown's six-year-old son Sam has Morquio Syndrome, a rare, debilitating disease which can be treated by an extremely expensive drug.

Those who have the disease have been waiting since last year for NHS England to decide whether to fund it, but were recently told there would be no decision until October at the earliest.

Sam's local MP is Greg Mulholland:

NHS England defers decision on Morquio drug by '12-16 weeks'

NHS England has today deferred a decision on Vimizim - the drug required by six-year-old Morquio syndrome patient Sam Brown from Otley - by a further 12-16 weeks.

Adam Fowler reports:

After a wait of more than six months, NHS England it will make its final decision on funding after after NICE, the National Institute for Health and Care Excellence has concluded its report into the drug.

NICE has said that doubts exist about the benefits and cost of this treatment in its recent draft guidance, and is therefore “minded not to recommend” the treatment for patients with Morquio A Syndrome. The manufacturer now has the opportunity to present additional evidence to NICE to address these concerns. If NICE ultimately does recommend the NHS funds this treatment then NHS England will do so. NHS England believes the manufacturer has an ethical duty to continue to support those patients it enrolled in clinical trials of elosulfase alfa whilst the NICE process is still ongoing.

– NHS England

Sam Brown received his last free round of treatment last week.

BioMarin, the company which provides Sam's treatment said it was "disappointed" by NHS England's decision.

BioMarin is disappointed by NHS England’s decision not to provide interim funding for Vimizim. Vimizim is the only enzyme replacement therapy for people with Morquio A syndrome, a rare genetic condition that is progressively degenerative and life limiting. BioMarin continues to work closely with all stakeholders to ensure that a long term funding solution for Vimizim is found for all patients with Morquio A syndrome, so that they are able to access this treatment in England.

– BioMarin spokesperson
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