Thank you to all our members who supported the CLLSA Campaign to appeal against the delisting of Ibrutinib and Bendamustine for the treatment of relapsed/refractory CLL from the Cancer Drugs Fund.
We have had a great response from you and more than 150 members wrote to their MP, and several also visited their MP. This is a tremendous response so thank you again.
By now you will have seen the updates on the CLLSA website cllsupport.org.uk/news/posi... and the HealthUnlocked online CLL forum healthunlocked.com/cllsuppo... which give the very good news that Ibrutinib will now remain on the CDF list. However the bad news is that Bendamustine will be delisted for relapsed/refractory CLL, although it still remains available for first line therapy. NICE guidance nice.org.uk/guidance/TA216
As always the devil is in the detail and you should consult the CDF list V6 if you want further information - links to this are available on the CLLSA website. cllsupport.org.uk/news/posi...
From now on, there is no need to send NEW letters to your MP as our template is now out of date following the final announcement by CDF on 4 November 2015. However there are many replies outstanding from MPs and Ministers and we expect that these will continue to materialise in due course. So please forward your MP and Ministerial responses to Tricia Gardom as before.
To date we have received nearly 70 replies from MPs out of 150 letters sent. The important result is that 50 MPs have written to Ministers on our behalf so our message is being reinforced, particularly the key long term issues of the need for CDF reform and adequate consideration of the special requirements of rarer cancers. Interestingly, MPs wrote to a range of Ministers including Jeremy Hunt, George Freeman - Minister for Life Sciences, Jane Ellison - Under-secretary of State for Health and Simon Stevens - CEO NHS England. Our message is now widespread in the Department of Health.
Around 20 letters were standard replies without reference onwards to the Minister, some have been followed up again and resulted in a subsequent letter to Jeremy Hunt. We just needed to keep the pressure on.
The CLLSA team will now turn their attention to the forthcoming consultations on the future role and operation of both NICE and CDF. In February, the process of gaining NICE approval for Ibrutinib starts and we will be fielding both a CLLSA Trustee and a patient expert at the Appraisal Committee Meeting.
Please keep yourselves up to date on all this by consulting our website and the HealthUnlocked forum.
Best regards
David Innes
Chairman CLLSA
Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
How Ibrutinib works over time
