The plight of an Otley schoolboy with an incurable disease will be discussed in the House of Commons next week when MPs debate the issue of access to drugs for ultra-rare diseases.
Leeds North West MP Greg Mulholland claims 180 people are being “let down by faceless bureaucrats” and plans to raise his concerns with health minister George Freeman during the debate in Parliament on Tuesday from 2.30pm to 4pm.
The 180 people referred to have ultra-rare diseases Morquio Syndrome, Duchenne Muscular Dystrophy and Tuberous Sclerosis Complex.
They include six year-old Sam Brown, who has the degenerative condition Morquio Syndrome, which limits growth and mobility and shortens life expectancy to an average age of 25.
A decision by NHS England on interim funding for the Otley youngster’s drug, Vimizim, is expected on June 25.
If the decision goes not go as campaigners hope, Sam will cease to receive the drug and his condition will worsen.
Greg Mulholland said: “I’m pleased to have secured the hour and a half debate next week and I will be using it to hold the health minister to account.”
He added: “Sam Brown, and his parents Katy and Simon, all deserve better.
“I and other MPs will be making clear that both ministers and NHS England seriously need to get their act together. This incompetence has gone on for far too long.”
While there is no cure for Sam’s condition, trials have shown Vimizim can slow its progression. But health regulator NICE has indicated it may not recommend the drug. Last week it published preliminary findings questioning its value for money and clinical benefits.
Sam’s mum Katy raised the issue with Prime Minister David Cameron, when he was up in Leeds last month. She said the drug had significantly improved her son’s condition.