Pricing of keveyis

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

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

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

Dear Department of Health and Social Care,

I still have not received a full response to my request regarding the pricing of Keveyis made on the 31st October.

The Dept have advised that the price was informed by the fact that this drug would only benefit 50 patients.

Despite numerous Freedom of Information requests, the Dept of Health and NHS Digital have failed to provide an answer as to exactly how many people there are in the UK in total with the condition Primary Periodic Paralysis.

I understand that information would only be held for England and no information held for the rest of the UK. Notwithstanding that, how then did the DoH Pricing Team know that only 50 patients would benefit from this drug.

Yours faithfully,

Mr B Elkington