Steve Beasant

Liberal Democrat Prospective Parliamentary Candidate for Great Grimsby and Councillor for the East Marsh Learn more

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Fantastic news for ultra-rare drugs campaign as NHS England announce access to treatment for Morquio Disease

by Steve Beasant on 24 November, 2015

After a 12-month campaign, people with Morquio Syndrome will finally be able to access the Vimizim drug through NHS England.

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MPs Dave Anderson, Paul Farrelly, Greg Mulholland, Russell Brown, Alec Shelbrooke and Sir Bob Russell, with ten year-old William Reeve and his mother, delivering a letter to 10 Downing St

Liberal Democrat MP for Leeds North West Greg Mulholland has led the #FundOurDrugsNOW campaign for the last 12 months and worked closely with charities and campaigners, and also the family of Otley seven year-old Sam Brown. The news comes after two major announcements today from NHS England and NICE.

NHS England and NICE have today secured a five-year, fixed-fee agreement with the drugs company BioMarin for the Vimizim drug. The agreement is the first of its kind for securing access to treatments for ultra-rare diseases. It is expected to be rubber-stamped on 16th December, after which point those diagnosed with Vimizim will be able to get immediate access to Vimizim.

Sam Brown is one of just 88 people in England with Morquio condition. The drug was approved on a Europe-wide level in April 2014 and is already in use in 20 other European countries, but attempts to make it available in England have seen repeated delays.

In the last 12 months, MP Mulholland has secured two parliamentary debates, sponsored five parliamentary motions, led three meetings with health minister George Freeman MP, and also raised the matter three times with David Cameron at Prime Minister’s Questions, as well as organising a number of rallies outside Parliament, the Department of Health and 10 Downing Street.

Commenting on NHS England’s announcement, Greg Mulholland said:

“After 12 months of campaigning, today’s news is a huge victory. It will mean that those with Morquio Syndrome will finally be able to get the Vimizim drug through NHS England. Today’s news is what many Morquio sufferers and their families have waited a long time to hear.

“It is great news for Sam Brown, whose parents Katy and Simon have campaigned long and hard. The agreement announced today is the breakthrough we all wanted.

“When rubber-stamped on 16th December, the agreement will mean the Vimizim drug will be immediately available to everyone diagnosed with condition. We are all delighted at today’s news, it is exactly what we have been demanding for the last 12 months. I could not be happier for Sam and his family.”

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