Pricing of keveyis

Response to this request is long overdue. By law, under all circumstances, Department of Health and Social Care should have responded by now (details). You can complain by requesting an internal review.

Dear Department of Health,
On the 30th September I mad a freedom of information request regarding the pricing of Keveyis.

I have not received a reply within the statutory time limit, so I will ask the question in another way.

Why/How did the Dept of Health pricing team come up with a price for Keveyis which will not be met by any Clinical Commissioning group ?

Keveyis is 5 times more powerful than Acetazolamide, the current drug used to treat HypoKPP and the recommended dose of Keveyis is one 50mg tablet of Keveyis for each 250mg tablet of Acetazolamide.

I currently require 5 tabs Acetazolamide every day which equates to 1,825 tabs each year which costs £248 a year according to the pricing schedule in the Formulary and the equivalent cost of the Keveyis would therefore be £72,180.

If the Dept of Health consider their price of Keveyis to be reasonable then I assume that my IFR made recently will be met without question.

Yours faithfully,

Mr B Elkington

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