We are very grateful to Dr George Follows for making the slides used at a presentation he gave to the UK CLL Forum on real-world use of ibrutinib on the 5th of October 2016. As you may know, this was a big project that he was keen to complete before he handed over the Chairmanship of the UK CLL Forum to his colleague from Oxford, Anna Schuh. This evaluation has now been accepted for publication and should be easy to find in the journal ‘haematologica’ when it goes on line.
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
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
On Thursday I visited Healthunlocked in London for an adminisatrators workshop and to explore with the HU management team their current workflow, commitment and future plans in supporting our community and all those on the HU platform. You will be pleased to learn that our CLLSA CLL support community at HealthUnlocked remains one of the most successful exemplars of what can be achieved to help people live with their condition. This is a result of your work together as members of this community to help each other. Well done everyone.
The Flyer is hard at it cycling from Land's End to John O'Groats as a challenge for someone living with CLL to raise funds to help support the work of CLLSA.
Yesterday the Flyer arrived in Scotland after nine tough days in the saddle and tributes the day's ride from Keswick to Moffatt to Tricia who sadly died on 8th June
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
Today three brave fundraisers tackled The Dragon Duathlon to raise funds for CLLSA,
The Dragon Duathlon is a brand new, unique extreme duathlon event where participants have to travel the length of Wales non-stop, riding coast to coast while tackling the Welsh 3 Peaks by foot. The target; complete the course in under 24 hours.
Lyndon’s team achieved this in an incredible 20.5 hours
We need your help, we have had half a dozen team CLLSA places come available..
Are you a little crazy and fancy a challenge with friends at short notice? ? Do you know a group who you could challenge? Or just fancy challenging yourself?
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.