Ibrutinib response from NHSE to Vernon Coaker MP - CLL Support

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Ibrutinib response from NHSE to Vernon Coaker MP

Mick491 profile image

Hi all

Just a quick up date. I recieved the letter below Vernon Coaker MP recieved from NHSE 're Ibrutinib. It doesn't address the 3 year issue and I've asked him if he would write back to specifically address that point. A letter is going out today.

You will also notice a slight change in attitude. Hopefully the evidence presented in July will be be enough to reverse the decision. Whether it's in time for I don't know but it will help many.

Stay well Mick

Our ref: PH5940

Your ref:

Specialised Commissioning

Skipton House

80 London Road



Vernon Coaker MP

House of Commons



25 June 2018

Dear Mr Coaker,

Re: Ibrutinib for Chronic Lymphocytic Leukaemia

Thank you for your email of 17 May on behalf of a number of your constituents. I am responding as the National Director for Specialised Services.

NHS England funds ibrutinib in line with the National Institute for Health and Care Excellence (NICE) guidance. Therefore, since January 2017, NHS England has routinely commissioned ibrutinib for relapsed / refractory chronic lymphocytic leukaemia and chronic lymphocytic leukaemia with 17p deletion or TP53 mutation. Prior to this, ibrutinib was funded via the Cancer Drugs Fund.

You may be aware that NICE has recently issued a clarification around the scope of its guidance and recommendation for ibrutinib in this indication. Specifically, they have confirmed that ‘it is reasonable for the guidance to be read as referring to those patients considered unsuitable for retreatment’ and that because the guidance itself does not define unsuitability for retreatment it is ‘appropriate for NHS England, as the commissioner, to take clinical advice in order to do so’.

This is what we have therefore done. However we are more than willing to receive and review, by the end of July 2018, any further evidence that patients and clinicians wish to submit on this matter.

Yours sincerely

John Stewart

Acting Director of Specialised Commissioning

High quality care for all, now and for future generations

4 Replies

The slight change in attitude is certainly an improvement.


Hidden profile image

I know jm954 is working very hard on this at the moment with Nice and talking with Janssen the manufacturer of Ibrutinib. I spoke to her briefly yesterday and she said she struggling to get contact from patients who’ve been treated second line to get their views on taking this over FCR again.

Mick491 profile image
Mick491 in reply to Hidden

I PM her but no reply. I don't want FCR again as had heart attack shortly after first line treatment. My consultants is reluctant to give it me said a last resort. My situation presently is relying on a trial which hopefully happens in August. Don't known of a plan B other than FCR. Remind jm954 I'm happy to help. Thanks.

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Hidden in reply to Mick491

I know Ibrutinib has caused heart problems with some but that doesn’t necessarily mean it would for you, have you spoken to a specialist in regards Venetoclax.

I’m not sure if it still applies or if you’d be able to get their but NHS Scotland gives Ibrutinib as a second line therapy.

Don’t quote me on that but if it does may certainly be worth looking to see a specialist their laws permitting.


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