Latest News

Latest News

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

NICE publish final guidance for idelalisib to treat CLL, moving England and Wales NHS access closer

NICE published Final Guidance today on Idelalisib for treating chronic lymphocytic leukaemia

NICE technology appraisal guidance [TA359]


This publishing of final guidance moves the treatment of idelalisib plus rituximab one step closer to NHS availability for England and Wales patients with NHS access expected within 3 months.


NICE approves idelalisib (Zydelig®) for the treatment of chronic lymphocytic leukaemia in England and Wales

 NICE says yes to new class of drug for adults with leukaemia

Today, the National Institute for Health and Care Excellence (NICE) has announced that idelalisib, in combination with rituximab, will be made available on the NHS in England and Wales for patients with chronic lymphocytic leukaemia (CLL). 

Update on the current Cancer Drugs Fund list - Two drugs for treating CLL planned to be withdrawn

On Friday 4th of September 2015 the England National Cancer Drug Fund announced results of the prioritisation review of drug listings. It is very disappointing to learn that two drugs for treating CLL patients are planned to be withdrawn by the 1st of November: bendamustine for treating relapsed CLL patients and ibrutinib for treating relapsed/refractory patients.

We are preparing to take action against this decision and are coordinating with leading clinicians and the wider CLL community to make a formal appeal to CDF