Pricing of Kevyis

Mr B Elkington made this Freedom of Information request to Department of Health and Social Care

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Dear Department of Health and Social Care,

In reply to DE-1101850, the dept has stated that the £4,110 a box price of Keveyis was informed by the fact that there were only 50 patients in the UK who would benefit from this medicine.

I want to know why the DoH blindly accepted the figure of 50 patients that was provided by Ranbaxy, a wholly owned subsidiary of Sun Pharmaceuticals and not on the figure given by the European Medicines Agency which gives the incidence at 1 in 50,000.

I also want to know why the DoH did not rely on their own historic pricing information as Dichlorphenamide ( Keveyis ) had been provided by the DoH for 50 years before it was withdrawn sometime after 2003 and was virtually the same price as Acetazolamide the other Carbonic Anhydrase Inhibitor used along with Dichlorphenamide in the treatment of Primary Periodic Paralysis.

Acetazolamide is still on the market and is the drug of first choice for treating Primary Periodic Paralysis and its price is £15.22 a box of 112 x 250mg tablets.

Yours faithfully,

Mr B Elkington