Letter to my MP regarding funding of Ibrutinib

[Ruhi9]

Dear Mrs Hobhouse,

I am a cancer patient and under treatment from the RUH since 2006 when I was first diagnosed with CLL.

The disease is a slowly progressing one, and in 2010 after four years of ‘watch and wait’ I had six months of chemotherapy, and then another six months of chemotherapy in 2015. Last year my CLL had progressed yet again and I was very ill, needing immediate treatment. Thankfully Ibrutinib had recently become available in the UK and my consultant decided to try me on the drug, rather than putting me through chemotherapy a third time. I responded well and continue to respond well - hopefully for many more years to come.

I am therefore shocked and disappointed by the decision of NHS England to go back on the recommendations of NICE regarding this drug, because had it not been for Ibrutinib, I might very well not be here today. And it is totally unfair that other CLL patients who desperately need this drug are now being refused it.

The Times newspaper last weekend revealed that NHS England is failing to fund patient access to ibrutinib despite NICE approval.

NICE recommends that ibrutinib alone is recommended within its marketing authorisation as an option for treating Chronic Lymphocytic Leukaemia (CLL) in adults:

- who have had at least 1 prior therapy or

- who have a 17p deletion or TP53 mutation, and in whom chemo-immunotherapy is unsuitable and

- only when the company provides ibrutinib with the discount agreed in the patient access scheme

There is no reference to a remission time frame within this NICE recommendation, yet The Times has revealed that NHS England has said that it will not prescribe ibrutinib if CLL patients have been in remission for more than three years.

NHS England has a legal obligation to fund drug indications considered by NICE to be cost-effective.

CLL is an incurable blood cancer and the most common form of leukaemia in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential.

Priority recommendations from the All-Party Parliamentary Group (APPG) on Blood Cancer highlighted that “blood cancer is more dependent on the development of new drugs and being able to access them, in order to continue improving patient outcomes.”

As a CLL patient and member of the Chronic Lymphocytic Leukaemia Support Association (CLLSA) - the only UK charity dedicated to providing education, support, and advocacy to help empower people living with CLL – please can I call upon your support to raise this issue in Parliament and demand that NHS England fund CLL patient access to ibrutinib for all patients for whom NICE has deemed it to be cost-effective so that patients in Bath - and indeed the whole of the UK, have the access they need and deserve.

Yours sincerely

[Jm954 Administrator]

That’s great Ruhi9 👍😊

[Michaeljohn50]

Very well done, you have spurred me on to write to her too.

Michael

[Ruhi9 in reply to Michaeljohn50]

Hope you’re keeping well and still on watch and wait Michael. How’s it going with Chris Knechtli - when you last wrote you said it was early days... I had a couple of moments when I wasn’t in such a good place, but I realise now that he works very hard, knows his stuff and always gives me a candid and honest reply to any concerns I may have.

[MattGGibson]

Excellent - will be doing mine today too

[MsMagpie]

I am writing to my MP too. Already have a draft letter. NHS England decision is shameful.

[UK-Sparky]

Well done!v Mine went last week, more mp pressure everyone in Uk!

[Jacksc06]

e-mailed my MP last week awaiting reply.

[Frogharding]

Everyone of us should write - I have and I’ve failed Ibrutinib- it’s a scandal - glad it’s come to light - I was shocked

[AdrianUK]

My MP got back to me and said they were going to raise this issue with the Secretary of State for health. The more pressure we put on the better. This may need a legal redress I suspect.

[Ruhi9]

Just heard back from my MP in response to the email I sent her a month ago:

Thank you for your email regarding the funding of Ibrutinib for CLL patients. I am very sorry to hear that you have been diagnosed with CLL but I am glad that you have been able to benefit from Ibrutinib. I would agree that if NICE has made the recommendation that this drug should be provided then I would like to see it made available. It is disappointing to hear that NHS England has felt the need to go back on this recommendation.

I have written to The Rt Hon Jeremy Hunt MP, Secretary of State for Health and Social Care, to express your concerns over this matter. I will respond to you again once I receive a reply.

In the meantime, please do not hesitate to contact me if I can be of any further assistance.

With best wishes,

Wera Hobhouse

Member of Parliament for Bath

[hammyj]

petition.parliament.uk/peti...

[hammyj]

Here is a petition to sign as well petition.parliament.uk/peti...

[Ruhi9]

Apparently I’ve already signed the petition - brain fog!