Children suffering from the rare, life-shortening disease face a 16-week wait while Nice conducts a cost-effective analysis
Children with the rare, life-shortening disease Morquio syndrome will not get a new drug that their families and friends have been campaigning for on a compassionate basis because NHS England has decided to wait for the deliberations of the drug watchdog, the National Institute of Health and Care Excellence (Nice).
Their case has been brought up in the House of Commons by MPs including the LIberal Democrat, Greg Mulholland. There are around 35 children who, until a week ago, were supplied with the drug Vimizim by the manufacturer on a compassionate basis because they had been part of a clinical trial. But NHS England has declined to find the cost of the drug – around £400,000 per year, per patient – in advance of a full cost-effectiveness analysis by Nice.
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