IMPORTANT Update on Developments in UK regarding Access to Ibrutinib for R/R patients in line with NICE.

[Jm954]

*Note this is an unlocked post*

There have been several developments since the last update. As of this morning, this is the current situation.

* There is now a petition - please circulate to your family and friends

petition.parliament.uk/peti...

* In an answer to Parliamentary Question - Written Question 144154 (Asked on 15/5/18 and answered 22/5/18) Steven Brine MP * Parliamentary Under-Secretary (Department of Health and Social Care) stated “NHS England is legally required to fund drugs and treatments recommended in NICE technology appraisal guidance in line with NICE’s recommendations”. There is no mention of any further qualifying criteria. parliament.uk/business/publ...

*David Innes, Chair of CLLSA has written directly to Rt Hon. Jeremy Hunt MP on behalf of CLL patients calling for a meeting and an immediate inquiry into this issue

* David Innes has met with James O'Shaugnessy, Health Minister in the Lords to express our concerns. This was a 45 minute , positive meeting.

*David Innes has also written to:

- Simon Stevens, CEO NHS England

- Professor Peter Clark, Chair of the Chemotherapy Clinical Reference Group, NHSE

- Lisa Jordan, Lead Commissioner, Chemotherapy Clinical Reference Group, NHSE

citing the Written answer, the UK CLL Forum experts' letter to the TImes and asking for an urgent meeting/ reversal of this decision.

This situation affects approximately 200 patients each year and it could be you in the future. We need to keep the momentum going so please write to your MP if you haven't already done so and sign the petition. Here is a link to the template letter from CLLSA healthunlocked.com/cllsuppo...

You can find your MPs contact details and message them at writetothem.com/

Thanks to those that have already done so.

[Newdawn Administrator]

Many thanks for this useful update Jm.

Please sign the petition and encourage your closest to do the same. Every signature matters.

Sounds like it’s gathering momentum and our individual MP’s need to be made aware of this. I’m awaiting a response from mine. He’s on the Health and Social Care Committee.

Newdawn

[Oleboyredw-uk]

I had to sit down and recover from the shock. Last week after not getting a response from my MP for six weeks I decided with the summer recess looming I'd give the MP a prod, politely of course.

09:30 - I forwarded my original email (to save rewriting and so she could see the original date and time).

11:54 - I got a response. The key sentences are:

-----

Welcome to "X" and thank you for writing to me about the Times article on access to ibrutinib as an option for treating Chronic Lymphocytic Leukaemia (CLL) in adults and my sincere apologies for the delay in responding to you.

I will take the matter up with the Secretary of State and get back to you once I have a response.

------

"X" was my adjustment to hide my town, the only change I made to the text. I'd never heard of Watch and Wait until I was diagnosed with CLL. Now it seems to be popping up everywhere.

best, rob

[Newdawn Administrator]

I’ve just re-submitted the letter I sent to my local MP. He hasn’t responded at all in over 6 weeks. Not impressed! 🤨

Newdawn

[Jm954 Administrator in reply to Newdawn]