We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released Final Guidance recommending Ruxolitinib for treating Polycythaemia Vera (PV) in adults in England who cannot tolerate Hydroxycarbamide (also called Hydroxyurea) or when the condition is resistant to it.
Ruxolitinib is already approved, in similar cases, for the treatment of PV patients in Scotland and Northern Ireland and we hope that the NICE recommendation will also be adopted in Wales in due course.
This positive news follows a lengthy appraisal process by NICE, during which MPN Voice, in conjunction with Leukaemia Care, made written submissions on behalf of all PV patients and their families & carers, including results from the UK-specific MAJIC-PV clinical trial, which demonstrated how effective Ruxolitinib is in treating PV patients for whom Hydroxycarbamide hasn’t worked.
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from Leukaemia Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
We would like to thank the clinicians who worked with us throughout the appraisal process and in particular a number of PV patients, including some who had taken Ruxolitinib as part of a clinical trial, whose first-hand experience of what it is like to live with PV and of the existing treatments, added invaluable real-life testimony to the submissions that we made to NICE.
Polycythaemia Vera 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 PV can have limitations and side effects and may not adequately reduce many patients’ main symptoms, including fatigue, bone pain and pruritis. Even in cases where patients initially respond well to the existing therapies, those can lose their effectiveness over time. We therefore welcome the approval of Ruxolitinib as an additional treatment option for those PV patients in England who are either intolerant of or unresponsive to treatment with Hydroxycarbamide.
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 firstname.lastname@example.org.