People across the UK living with the most common form of adult leukaemia are celebrating today following NHS England's decision to remove the arbitrary clause on funding the treatment Ibrutinib following months of campaigning by the blood cancer community.
David Innes, Chair CLLSA said “It is with great relief that NHS England has agreed to remove the restrictions on Ibrutinib to bring funding in line with NICE guidance. We are enormously grateful to The Times newspaper for highlighting this issue and to all people living with Chronic Lymphocytic Leukaemia, their families, members of CLLSA, the UK CLL Forum, Leukaemia Care and Janssen for their support in submitting evidence to NHS England that has helped to achieve this turnaround. Let us not forget that NHS England is legally required to fund drugs and treatments recommended in NICE technology appraisal guidance in line with NICE’s recommendations and we shall continue to monitor this”.
The CLL community has shown great strength in standing together to ensure this turnaround following revelations by The Times newspaper that NHS England had inserted a'less than 3 year prior remission timeframe' which was not mentioned in the NICE guidance. Concerns were raised that hundreds of patients in England were being denied treatment with Ibrutinib as a result of this arbitrary inclusion, creating a cross-border post-code lottery with inequality across the UK and unfair discrimination against English cancer patients.
Following months of lobbying and Freedom of Information requests, NHS England has confirmed that the remission timeframe will be removed and funding for Ibrutinib will be in line with NICE guidance for adults with CLL who have had at least 1 prior therapy or:
-who have a 17p deletion or TP53 mutation, and in whom chemo-immunotherapy is unsuitable and
-only when the company provides Ibrutinib with the discount agreed in the patient access scheme
The announcement has been made ahead of Blood Cancer Awareness Month in September.
CLLSA is the only UK charity dedicated to providing education, support, and advocacy to help empower people living with CLL. CLLSA is a patient-led charity and holds frequent regional members meetings with expert consultant speakers. All meetings are free to CLLSA members.