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.
New visitors can register for membership using the join menu see lower right on the lower menu. An email will be sent containing a time limited (24hrs) link to your profile. Use the first link in the email to access your profile and update your details and then the second link to take you to the page where you can create a password and username.
Q. Why do I need to login to CLLSA site?
There are features available from the site which are only available to members. Members can help ensure their information is accurate, register online for members meetings and will be able to access the forums when they go live.
Q. Is the login for CLLSA website different from CLLSA on Health Unlocked?
The CLL Support Association (CLLSA) HealthUnlocked (HU) community Supports those affected by a diagnosis of CLL, their friends, families, loved ones and carers.
Membership is for the above group and qualified professionals allied to the area of blood cancers.
The group is moderated by volunteers from the CLL Support Association http://www.cllsupport.org.uk
‘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.
CLLSA Nottingham meeting 10.00 - 16.00hrs March 10th 2016
The Belgrave Rooms
25 Goldsmith Street
Tel: 0115 947 3829
The Belgrave Rooms are situated adjacent to the M1 and A1 and has free parking on site
Last month We reported about the results of the CLLSA appeal and members' campaign letters to MPs and Ministers seeking to prevent CDF delisting of drugs to treat CLL. The CLLSA chairman’s update letter of 14th November 2015 summarises the CLL specific outcome and next steps.
NHS England and NICE ask for views on the future direction of the Cancer Drugs Fund
As part of the NHS consultation CLL support Association will be assessing the proposals in detail over the next few weeks, attending briefing meetings and are preparing a CLLSA consulation response and continuing to work with the Blood Cancers Alliance. Further information will be published in due course.
The Future of the Cancer Drugs Fund, about the consultation and proposed changes to how the Cancer Drugs Fund will be operated: