NICE appraisal of Revlimid/Lenalidomide

Posts related to the sub-type 5q deletion

Moderator: Steering Committee

Posts: 249
Joined: 20 Nov 2008 14:05

Re: NICE appraisal of Revlimid/Lenalidomide

Post by sophie » 18 Jun 2013 12:55

Hello all,

quick update on the NICE appraisal for lenalidomide:
The first meeting was held last week - 13 June 2013.
We will need to wait for a decision - expected mid-end July.
At this stage - it may not be a straight forward approval - and may require a further meeting.

In terms of access to lenalidomide in the meantime:
Patients CAN be put on lenalidomide already - if you are 5q- and are transfusion dependent
There is no need to wait for NICE approval
BUT - it needs to be done via IFR's (Individual Funding requests) or via the Cancer Drug Fund.
Your haematologist will take care of these administrative steps.

Please call or email us if you have any queries or concerns.
We NEED to know!
In case of difficulties you also HAVE to inform your MP.

Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51

Re: NICE appraisal of Revlimid/Lenalidomide

Post by Sarah Reakes » 21 Jul 2013 23:19

Hello to all del 5q patients,

Just to say that I am naturally disappointed to read the 12th July 2013 update posted by Sophie under the NEWS item of the website, that NICE have NOT approved Lenalidomide (Revlimid) for del 5q transfusion dependent MDS patients for the time being. This means that further work needs to be done by all stake holders to satisfy the NICE cost-effectiveness requirements. I suggest that you read the full NEWS item, and perhaps all those of you who are currently blood transfusion dependent and are on the drug already (or not as the case may be), to speak to your Specialist and his team to ask them to try and influence NICE to give it general approval on grounds of efficacy. For that matter, those del 5q patients who are not yet blood transfusion dependent may also like to speak to their Specialist team to register their concern and ask them if they can do anything to reverse this decision. The drug has only just received European Medicines Agency Approval.

Please note that although NICE have not given it approval to be routinely prescribed, the drug is already being prescribed by some Specialists and in this instance the drug is being funded via the Cancer Drug Fund (CDF). The CDF is there for all cancer treatments not yet approved by NICE. However, I have no idea how easy or difficult this process is and whether it is a bit of a postcode lottery as to how successful each application is.

Can I suggest that any postings relevant to del 5q and this drug treatment be posted here so that we can all keep track of it.

Many Thanks

Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
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