Cambridge MP Julian Huppert has tabled a motion expressing his anger over the huge profits that a drug company is set to make by raising the costs of vital medication used to treat rare muscle-wasting conditions in children.
Julian is taking action in support of families in Cambridge and across the country who are concerned about access to treatments.
Children suffering from Congenital Myasthenic Syndrome (CMS) had been treated with the drug 3,4DAP. But US firm BioMarin has created a version of the same drug and have sought a licence for it to be prescribed for 'rare diseases'.
3,4DAP, which costs £800 to £1,000 per patient per year, has now been blocked from the market, with its replacement FirDapse priced at £40,000 to £70,000 per patient annually.
Julian said: "In tabling this Early Day Motion, I am supporting families concerned about access to treatments for rare muscle-wasting conditions in Cambridge and across the country.
"I call on the government to review the regulations to ensure access to treatments for patients with these rare neuromuscular conditions and best value for the taxpayer."
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