We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending momelotinib as an option within the NHS for treating myelofibrosis-related splenomegaly (enlarged spleen) or symptoms in adults with intermediate-2 or high-risk myelofibrosis (MF) with moderate to severe anaemia, who have not had a JAK inhibitor or have had ruxolitinib.
This positive news follows a detailed appraisal process by NICE, during which MPN Voice, in conjunction with Leukaemia Care, made written submissions on behalf of all MF patients and participated in the NICE committee meeting at which the suitability of momelotinib as an additional treatment option for MF patients was fully evaluated.
Although this guidance initially applies only to patients in England, we hope that it will soon also be adopted in Wales and Northern Ireland. Scotland conducts its own appraisals through the Scottish Medicines Consortium and we hope that an appraisal of momelotinib for the treatment of MF will take place there in the near future.
Our submissions included very valuable feedback from a targeted survey of MF patients and their families & carers, which we carried out in summer 2023 and we would like to thank everyone who responded to that survey.
We are also very grateful to the clinicians who worked with us throughout the appraisal process and in particular to four MF patients already being treated with momelotinib, who spoke to us about their use of this drug and about living with MF – their first-hand experience added invaluable real-life testimony to the submissions that we made to NICE.
Myelofibrosis can be an extremely debilitating illness that has a significant impact on patients’ lives in terms of day-to-day symptoms and affects not only patients but also their families and carers. Existing therapies for MF can have limitations and side effects and may not adequately reduce some patients’ main symptoms, including an enlarged spleen, fatigue, bone pain and anaemia. Even in cases where patients initially respond well to the existing therapies, those can lose their effectiveness over time and we therefore welcome the recommendation of momelotinib as an additional treatment option for certain groups of MF patients.
This guidance from NICE underlines how important it is that we continue to support research into the development of new treatments for MPNs. The work that the volunteers on our Advocacy Team do is a key part of this but that also relies on very valuable input from the whole MPN community, through responses to surveys and questionnaires and above all through fundraising to help us continue our work.
If you’d like to know more about what we do and want to help us achieve our mission through volunteering for MPN Voice or helping to raise funds we’d love to hear from you at info@mpnvoice.org.uk.
