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.
Mr B Elkington