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CLL Support Association
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LLR response to the proposed cuts sorry Bloodwise

Hi Nick finally got hold of the right person this is there response. Ive been busy drumming up support for Anna Schuh's petition

Dear Julian

I understand you contacted my colleague Helen Marsden via Facebook about our response to the recent Cancer Drugs Fund delisting announcement. As Head of Public Affairs, she passed your query over to me to let you know what we’re doing in response.

The announcement on the delisted medicines was a real blow for patients. Alongside blood cancer drugs no longer being available, many other cancers were also hit in a similar way. NHS England is still in the process of negotiating with some of the pharmaceutical firms involved about the cost of medicines, so we will not have a final picture of which drugs have been removed from the CDF until November. In addition, a new system of assessing new medicines will be introduced in April 2016. We don’t know yet exactly what this new system will look like, but the Government will be launching a consultation on it very shortly to set out their provisional plans, and ask interested people and organisations to respond. Certainly we’re far from certain about the long term future for the delisted drugs, and until we know more about the plans for April, it’s hard for patients to know whether treatments will be made available again.

We are obviously very disappointed and concerned by the announcement. We have written to NHS England to express our concern on behalf of blood cancer patients, and ask for reassurance as to how the plan to ensure innovative medicines reach the patients that need them. We are working with our clinical advisors to understand whether patients will be able to access any of the delisted medicines through alternative routes on the NHS (for example, their clinician making using the Individual Funding Request process). We will also respond to the Government consultation on the new drug assessment process when it is published, and make the case that patients need to access the full range of medicines available, and the new system will need to establish how between the Government, the NHS and industry, a pricing and access system can deliver for patients.

In addition, we are actively involved in the Government’s Accelerated Access Review, and have responded to the review to set out ideas that can speed up and increase the levels of clinical research in the NHS, take some of the financial risk for industry out of the development of drugs, which should allow them to price them lower, and how Government can encourage researchers to work together better to share learning and ensure we get to better treatments faster. This line of work is more medium to long term compared to the immediate response to the CDF delisting, but it represents the Government’s attempts to ensure long term patient access to all drugs, so it is important we share our knowledge and expertise.

We are also due to meet with other blood cancer charities in a couple of weeks to plan some joint campaigning activity on behalf of blood cancer patients. There is also work being undertaken by the Cancer Campaigning Group and Cancer 52, two coalition organisations consisting of all the major cancer charities in the UK – alongside the work we are doing ourselves, working in partnership with other major cancer charities will add strength to campaigning efforts to get patients access to the drugs the need.

The anger on the delisting announcement was felt far and wide across the cancer community. We will use our relationships with senior figures in Government, industry and at other charities to make sure we’re doing all we can to ensure patients can access the most effective medicines for their cancer.

If you have any questions or thoughts, please don’t hesitate to get in touch.

Kind regards


13 Replies

Thanks for your efforts on this Julian...it's worrying times indeed!

I'm heartened to know there is rallying and representations being made on our behalf but I now feel considerable concern that 'when I fall overboard there may not be a life raft available'.

I can imagine this news has caused a great deal of angst amongst our members and there are as yet too many unknowns and unanswered questions.

But we have to remain strong and hopeful.



Thank your for sharing. As with us all I'm sure, it's made me fear even more for my future. Peggy

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Hi Julian,

Would you share with us what you've done to drum up support for the petition.

I've put it out on facebook and some friends have replied they've sugned and I'm sure some others have as well. However I feel I should be publicising it more. That is without revealing my situation to the world. (So far I've been claiming it is on behalf of a friend).

Anyone else any ideas?



Hi Red

Hope you are well

Through Facebook mainly also asking them to share with there friends.

Family and friends on the Forum at work and my partner doing the same where she work .anybody I meet really, trying to get the message across - what I have noticed you have to spell it out otherwise nothing happens.

This has surprised me I have posted on the Cycle Bloodwise page - these folks raise funds for research but for some reason very little response but as a few of you are aware I am persistent and yes a pain in the arse but I won't give up.

Bloodwise have Tria-thlon groups and Running groups so I have suggested they post something about the petition on all the groups no response yet but I will get one we need to attack in all directions don't you think.

Nick is there a Letter template that we can all use to send to local Mp's anything will help.

TOGETHER we will be beat blood cancer


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Also Red meant to say we plan to leaflet to on the local high street


Hi Julian thank you for persevering and sharing your findings of LLRs actions and using your considerable energies to raise support and awareness. I will froward this letter to our Chair and the CLLSA group working on this.

Blood cancer charities are indeed all talking together about this and CLLSA share membership of coalitions such as the Cancer52 rare cancer group us all working together will strengthen our voice .

An update from CLLSA:

CLLSA have also been working hard with the UK CLL and haematology clinical communty and blood cancer charities and are coordinating a CLL specific response in collaboration to appeal the two CLL treatments proposed for delisting. This has taken some time and a lot of work because the picture is very complicated and appeal grounds have to be prepared to be spot on, we have until October 1st to submit our appeals. This is now all coming together and we plan to coordinate this with letters to ministers and local MPs you will all hear from us very soon seeking your help, It is important that the letters and their requests support the appeal, templates are being worked on and will be sent out soon..,.

Listening to members i agree it is hard to remain positive at the best of times, all is not yet lost

Newdawn says it, "I can imagine this news has caused a great deal of angst amongst our members and there are as yet too many unknowns and unanswered questions.

But we have to remain strong and hopeful."

The true picture will take many weeks to unfold, I do believe there is room for hope and there will be options should the wheels fall off the bus, As Newdawn says we have to remain strong .

keep up the good work Julian and keep us posted



If there is anything you want me to do then don't hesitate to ask


Hello, all. I am very new here - actually still awaiting a diagnosis, so have avoided posting yet. I'm in the US, but have been following these scary developments with alarm.

I have what might sound a bit wacky, but might get your story out there. There is a hugely popular Scottish actor, Sam Heughan, who is the male lead in Outlander, filmed in Scotland, in large part. The show, and Sam, have hundreds of thousands of fans around the world, and Sam's favorite charity is Leukemia and Lymphoma research; he has raised funds for Bloodwise. Here is a link to some background:


You may already be well familiar with him, but it's worth a shot to get him on board. His twitter handle is @SamHeughan, and I bet you could get him to respond, as he's very supportive of this cause and interacts on Twitter, etc.

Best of luck with this effort.


All just Tweeted /Twitted Sam- hope it works


I have just had a look at the Anna Schuh petition momentum has slowed quite a lot.

It is now at 22,954 This petition is pressuring the drug companies to review their pricing as well as requesting CDF review their recent decisions and long term look to change the decision making process to include representation of specialists for each disease area during the decision making process itself, you.38degrees.org.uk/petiti...

Can we restart the momentum between us? 100,000 signatures will allow this to be debated in the House of Commons

In line with what Oleboyred has requested, any ideas how we we can breath some life back into this and start the ball rolling again a bit faster?. by networking hard through social media , re-tweeting, posting to on -line communities that share common ground with us,(has any one posted to all HU communities? i believe there are 200 plus with half a million members. they may support us. i'll post to the admins community. any takers for the other 200? How about other external haematological support groups for any condition you can think of?, emailing our doctors, nurses etc all friends and family to send out through all their social media channels can we do this?


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Yes we can Nick come on all lets make a difference TOGETHER we can..........

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23, 083 come on guys lets up are game

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I have circulated the petition to HU and platform community admins every signature counts :-)

Dear fellow admins can you help us and HU too please to tap into the human resource and media network that this health social media platform touches. I am not a spammer just a patient and supporter.

I am reaching out to ask if you would consider circulating this petition campaign lead by a leading UK clinical specialist to your members or through your media channels.. It does focus on blood cancers that have been affected by recent CDF announcements, but applies to all you.38degrees.org.uk/petiti... we have over 23,000 signatures so far, 100,000 will get this where we need it.


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