Latest News

Latest News

NICE says YES to Ibrutinib to treat England and Wales NHS CLL patients

CLLSA are extremely pleased by the NICE decision to approve Ibrutinib to treat NHS England and Wales chronic lymphocytic leukaemia patients.

Today’s Final Appraisal Determination (FAD) recommends that:

1.1Ibrutinib alone is recommended within its marketing authorisation as an option for treating chronic lymphocytic leukaemia in adults:

· who have had at least 1 prior therapy or

Blood Cancer Alliance unites to demand NHS England reinstate recently suspended treatments for blood cancer patients.

CLL Support Association is member of the Blood Cancer Alliance and supports the demand for the reinstatement of recently halted therapies by NHS England; in particular reinstatement of stem cell transplants for patients with a rare blood cancer Waldenstroms Macroglobulinaemia (WM)..

Yesterdays letter and the BCA demand

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The Scottish Medicines Consortium (SMC) accepts ibrutinib (Imbruvica) for restricted use by NHS Scotland to treat 17p TP53 CLL patients

During 2016 CLLSA and patients have worked hard with other stakeholders to capture the patient and carer perspective and deliver this during the appraisal of Ibrutinib by The Scottish Medicines Consortium (SMC). Yesterday SMC announced that ibrutinib (Imbruvica) has been approved for restricted use by NHS Scotland to treat 17p TP53 CLL patients

Tribute to Tricia Gardom

We are very sorry to tell members that our friend and colleague Tricia Gardom died on Wednesday 8th June.

Tricia was a CLLSA member from 2006 and absolutely dedicated to fighting for people affected CLL and raising awareness of our plight. Even when so unwell over her last several months Tricia was there to help others in our on-line community  

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    

Recommendations:

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.