Patient advocacy news // 13th August 2020
Myeloma UK today took part in a meeting on whether to approve lenalidomide following a newly diagnosed patient’s stem cell transplant.
The National Institute for Health and Care Excellent (NICE) are considering whether the treatment should be used following a stem cell transplant (HDT-SCT) in newly diagnosed patients.
Head of Patient Advocacy, Shelagh McKinlay, took part in the meeting via video conference alongside myeloma patient Steve Billcliffe.
Lenalidomide maintenance was part of the largest myeloma clinical trial conducted in the UK, Myeloma XI and many UK patients will have received it treatment through this clinical trial.
In January Myeloma UK conducted a Patient Treatment survey to capture patient experience and insight of lenalidomide maintenance. 466 patients responded to the survey strengthening the case Myeloma UK was able to put forward for approval.
Head of Patient Advocacy Shelagh McKinlay
“We now have compelling data showing the benefits of lenalidomide maintenance including an almost doubling of remission. Patients must have access to the best possible treatments at every part of the pathway – and this means access to maintenance treatment following a stem cell transplant at “first line”.
“Internationally it is seen as part of the established treatment pathway and patients in the UK must not fall behind. We will be doing everything possible to secure a “yes” from NICE. We are very grateful to all the patients who have helped us by filling in the survey and of course, special thanks go to Steve for taking part in the meeting.”
Nominated Patient Expert Steve Billcliffe
“I was very pleased to take part in the NICE Appraisal for Lenalidomide Maintenance as a patient expert on behalf of Myeloma UK.
I have been receiving this treatment for almost five years and I am grateful for the enhanced quality of life this have given me. Rather than ‘living with a condition’ I prefer to think that I am ‘living with a treatment.’
This is an especially significant therapy for myeloma patients and I was delighted to advocate for this new treatment to be approved for use through the NHS.”
Lenalidomide (Revlimid®), produced by the pharmaceutical company Celgene, is an immunomodulatory drug which works by affecting the body’s immune system. It is currently approved either as a single or combination treatment at further points in the myeloma pathway. You can read more about this treatment in our Lenalidomide (Revlimid®) treatment guide.
A decision on whether the treatment will be made available to patients in England, Wales will be published in due course. Northern Ireland normally follow NICE decisions. NICE may want to meet again to discuss the appraisal at it is not possible to give a precise timescale for the decision at the moment.
This treatment is also being appraised by the Scottish Medicines Consortium (SMC) for its approval through NHS Scotland. Myeloma UK recently took part in a Patient and Clinician Engagement meeting to advocate for this treatment being made available for patients in Scotland. We expect the committee meeting for this decision to take place in September with a decision due in October 2020.
If you have any questions or comments on the decision please email firstname.lastname@example.org or call the Myeloma Infoline on 0800 980 3332 during office hours, Monday to Friday.