Latest News

Latest News

Cancer Lottery - JOIN campaign asking for fair consideration of new drugs required to treat rarer cancer patients in the UK

Many will have been following the unsatisfactory way in which new drugs for CLL are being assessed and Ibrutinib not gaining a favourable preliminary recommendation at this stage of the assessment process by NICE is of real concern. Recent de-listings of CLL drugs from the Cancer Drugs Fund are adding to worries that this trend could continue after the 1st of July.

CLLSA would like to respond to all this and recommend members who can take a little time, Join the Leukaemia Care campaign with us to ask for fair consideration of new drugs for rarer cancers like CLL.

NICE says NO to ibrutinib again and asks company to put the drug forward for new Cancer Drugs Fund

We are extremely disappointed with the second preliminary decision by the National Institute for Health and Care Excellence (NICE) not to recommend ibrutinib to treat relapsed refractory CLL, this preliminary decision also confirms NICE are ‘minded’ not to recommend ibrutinib for treating patients with a 17p deletion or TP53 mutation.

This latest draft guidance is set out in a second appraisal consultation document    


CLLSA response to the NICE negative draft recommendation for Ibrutinib to treat Chronic Lymphocytic Leukaemia (CLL)

We are extremely disappointed with the preliminary decision by the National Institute for Health and Care Excellence (NICE) not to recommend Imbruvica® (Ibrutinib) for treating chronic lymphocytic leukaemia (CLL) patients who have had at least one prior therapy or, for people with 17p deletion or TP53 mutation and for whom chemo-immunotherapy is unsuitable.     

CLL patients have historically had limited access to effective and innovative treatments. If this decision is not reversed following the next consultation process, the health of CLL patients could be seriously affected.

CLL Support Association responds to NHS consultation on the proposals for the new Cancer Drugs Fund operating model

‘The aim of the new CDF is to help patients receive new treatments with genuine promise, while real world evidence is collected for up to two years on how well they work in practice. This will then help determine whether the treatment should be accepted for routine use in the NHS in the future.

The original CDF was established in 2011 to fund cancer drugs in England that are not currently approved by NICE.


Brief overview of the recent meeting at St Bart's Hospital Great Hall

Brief overview of patient meeting at Bart's Meeting in London 

The meeting started with picking up our name badges before ascending the grand staircase past the large paintings on the walls, painted by William Hogarth, and then on into the Great Hall for a coffee and chat as people arrived. 

The Grand Staircase left , photo thank to the Friends of the Great Hall

Blood Cancers Alliance response to Cancer Drugs Fund delistings - Letter published in the Times today

CLL Support Association is a member of The Blood Cancers Alliance, an informal group of all blood cancer charities; who have written to David Cameron and Jeremy Hunt to urge them to find a suitable solution to this wholly unacceptable situation.

The open letter is copied below and has been published in the Times newspaper today 4th November