AN Otley boy will find out in January if the drugs used to treat his rare illness are to be approved by a health body.

Six year-old Sam Brown is one of just 88 people in England with the ultra-rare disease Morquio Syndrome.

The Vimizim drug he uses is yet to be approved for use in England by the National Institute for Health and Care Excellence (NICE) and so Sam is unable to receive it through the NHS.

The company producing the drug, BioMarin, is providing the drug to Sam at its own cost and only on a trial basis.

NICE announced earlier this month that it was leaning towards making a positive decision.

Leeds North West MP Greg Mulholland tabled a question in the House of Commons, asking health ministers when they now expected Vimizim to be approved by NICE.

Responding, life sciences minister George Freeman reaffirmed that NICE was minded to approve Vimizim.

He added: “NICE now expects to publish its final guidance in January 2016.”

Mr Mulholland today said: “While it is welcome news that NICE are leaning towards approving the Vimizim drug that Sam and 87 others in England need, what is not ideal is that we must now wait until January to know if Vimizim has definitely been approved or not.

“This is a major delay from the original deadline we were given, the end of October.

“Sam is one of 34 people receiving Vimizim because they are on the clinical trial, which means that most of those with Morquio Syndrome are not receiving the drug at all.

“This is a degenerative condition, and every delay is costly and only causes further pain for those with the disease and their families. I would seriously urge ministers and NICE to bring the decision date forward, we have seen enough delays.”

For ten months, Mr Mulholland has been leading the cross-party, multi-organisation #FundOurDrugsNOW campaign to fight for funding for the drugs Vimizim, Translarna - for treating Duchenne Muscular Dystrophy - and Everolimus, for treating Tuberous Sclerosis Complex.

Across the country, 218 are affected by the ultra-rare conditions.

Mr Mulholland has led two parliamentary debates, supported by MPs of all parties, on the issue of access to drugs for ultra-rare diseases. Vimizim was approved on a European level 15 months ago and is already in use in 20 other countries on the continent.

During the last parliament, Mr Mulholland raised the matter with the Prime Minister three times, the Deputy Prime Minister, Secretary of State for Health and also the Life Sciences Minister George Freeman MP with whom he led three meetings along with campaigners.