CLL Support Association
10,312 members15,988 posts

Petition against NHS England and use of Ibrutinib

Dear all

Following the Times revelation about NHS England going against NICE recommendations I have begun a petition to get them to follow those guidelines so people like me who have survived more than 3 years can be treated with it.

Please sign the petition and share the link. Thank you.

Mick Smith MBE

petition.parliament.uk/peti...

68 Replies
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Hello

I have just signed. I will mention it at the CLLSA conference in Birmingham this Thursday.

Thanks for starting this .

1 like
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Thankyou. Please share too.

1 like
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Hi . Just sent the link to my address book

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just signed

1 like
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Thankyou please share too.

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Done.

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Thankyou. Please share the post too.

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Just signed

Cheers, keepfit 123

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Thankyou please share too

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Signed mick491

Sue

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Thankyou please share too

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It's now on Facebook as a post and shared.

Sue

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Thankyou.

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Signed

Brenda

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Well done Mick you have my support and will share with as many as possible.

1 like
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Thankyou. Hope it makes a difference

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Myself and partner signed

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Many thanks please share too

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Just signed as well. Colette

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Thankyou please share too

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done

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Signed and shared. Katherine

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Just sign it. Ruhi

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Thankyou please share too

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Going to do it now Mick good luck.

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Thankyou please share too

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Just signed your petition Mick491. I hope you get lots of support.

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Thankyou please share too

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I have signed x

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Thankyou please share too

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I have just signed x

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Just signed and shared Mick, God bless, Terry

1 like
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Signed & passed to friends & family to get them to sign as well.

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I'm not a Brit. Sorry, can't sign. What is this all about.

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This post explains;

healthunlocked.com/cllsuppo...

Newdawn

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Just signed. 697 so far. Need lots more.

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We need at leat 10k to get a response

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Signed and am writing to my MP.

Newdawn

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Thankyou

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Struggling with this. I tried last night and today. Takes me right through to the end then just won’t finish loading. Will keep trying.

Peggy

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Got it! E mail had gone into my junk box. All done plus family and friends.

Peggy😀

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Many thanks 1199 at the moment.

2 likes
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Signed and shared.

Paula

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Thankyou

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Signed and shared.

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Over 1000 people now. Told my social media contacts again as people like to back something that’s getting some traction. We can do this!

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Thankyou

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1647 signatures and counting - we need to reach 10,000 minimum. Where is that viral effect? :) Please pester friends, family (and even strangers!) I have tried to help people understand that if we let NHS England get away with this, they will play similar games with other life-saving drugs. Feel free to lift from this if it helps at all:

"Dear Friends,

I need your help. Actually by doing this you will be helping yourselves as NHS England (but not Scotland and Wales) has decided to start playing games with the NICE guidelines. NICE governs the availability of cancer drugs for us all. Ibrutinib is on such drug – taken once a day it holds chronic lymphocytic leukaemia at bay. This is crucial as curative breakthroughs seem to be imminent.

There is no reference to a remission timeframe within the NICE recommendation to use ibrutinib, yet NHS England has said that it will not prescribe it if CLL patients have been in remission for more than three years. This would condemn people who have been through FCR chemo therapy once already to repeat the exercise.

Just over three years ago, I underwent the recommended FCR chemo for CLL. It nearly killed me, twice. Once during the initial administration of the chemo (I had to be resuscitated by nurses on an emergency basis) and once because my neutrophils were so low I had to be rushed to hospital in an ambulance, and stayed there for four days.

A second round of FCR chemo would at best give remission for 18-24 months ... and then patients would finally be eligible for ibrutinib ... but only after they have undergone another round of poisoning their body and further compromising their already fragile immune systems. This is a classic example of short-term penny-pinching without reference to the long-term costs.

NHS England has a legal obligation to fund drug indications considered by NICE to be cost-effective. We need NHS England to fund access to ibrutinib for all patients for whom NICE has deemed it to be cost-effective so that CLL patients have the access they need and deserve.

Please take a minute to sign this petition petition.parliament.uk/peti... and share this email with friends – rational decision-making in an economically stretched NHS and our future access to life-saving drugs depends on it."

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Many thanks for putting your weight behind this. I have sent it to all my friends and family some coming back to ask questions which I'm happy to answer. So please folks get this moving.

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Thanks for starting this petition. I have signed and shared widely.

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Thankyou it's appreciated. Just hope we get the minimum 10k

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I've just signed and will ask family and friends to do the same.

Thank you for this.

Fran 😉

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Thankyou

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Thankyou

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Well over 2000 today. So keep posting. And keep sharing.

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Slow but sure. We need that 10k

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parliament.uk/business/publ...

Ibrutinib:Written question - 144154

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This was posted by Steve Garner on another site. Does it answer the question?

Mick491

Sue

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There seems to differing views. But interesting.

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It looks to me like a weasely worm-out ... unless he then specifically instructs NHS England to stop this short-term penny-pinching policy. But, nonetheless, I've forwarded the response to NHS England telling them that this is a clear instruction to reverse the policy and would encourage others to do the same. I also forwarded it to my MP and the Department of Health. Let's keep pushing on this!

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I couldn't agree more, hard to figure

Out how to beat the official word.

They are politicians after all.

The company maybe? Down to Mick

really to decide.

Sue

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Hi again Mick,

Keeping an eye on the petition and the numbers are creeping along very slowly. I have just signed one on Change.org about saving Scottish wildcats and it is already at 25.000 signatures. I am not remotely technical but have you thought about switching to Change.org or 38 Degrees ?

Regards

And good luck with managing to get Ibrutinib

Colette

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I think the message get to potential signitories through how its spread through people on social media. This type of thing is very technical and most people are not worried by it. I had hoped for a better response though . That said we have got 500 today and are a quarter of the way. But thanks for your comment.

Mick

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Thanks and I hope the numbers keep rising, and I have forwarded to a number of friends.

Regards

Colette

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Thankyou

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Signed and shared

1 like
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Many thanks

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Thankyou Mick for starting this petition. My family have all signed and now posted on FB pages too . I need to go on this drug and it must become available to everyone who needs it for their CLL and through the NHS

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Thankyou Molly. This maybe a little late for me but hopefully it will be sorted when you require it.

Mick

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