In Conversation with Craig Sowerby, who talks to Nona about his PV, when it was diagnosed and the treatment he has been receiving to manage it and why he decided to fundraise for MPN Voice, to raise awareness about MPNs and funds to support us. Craig recently completed a cycle ride from John O’Groats to…
In line with national recommendations, we do not mandate Covid testing or wearing of masks for our meetings. However, we do ask that all attendees follow common sense precautions, not attending if you have active symptoms of a potentially infective illness, for example, respiratory or gastrointestinal or other. If delegates do wish to wear masks…
We are very pleased to advise that NHS England has confirmed that Besremi is now available as a treatment option for specific people with MPNs – essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF) and for the duration of the Pegasys shortage. Doctors can now consider switching to the use of Besremi as an…
The video of the MPN Voice patients’ virtual forum, held on 16 Oct 2024, is now available to view. This online forum focussing on MF features presentations from: Dr Andrew McGregor, Consultant Haematologist, Newcastle-upon-Tyne NHS FT, Dr Donal McLornan, Consultant Haematologist, UCLH, London, Dr Anna Godfrey, Consultant Haematologist, Cambridge NHS FT and Dr Alesia Kahn,…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending fedratinib as an option within the NHS for treating disease-related splenomegaly (enlarged spleen) or symptoms of myelofibrosis in adult patients who have previously been treated with ruxolitinib and for whom momelotinib is unsuitable. This positive news follows a detailed appraisal…
In conversation with Prof Claire Harrison, Guy’s & St Thomas’ NHS FT, who clarifies the situation regarding the temporary shortage of Interferon, which is due to the manufacturing rights of Interferon transferring from Hoffmann-La Roche to Pharma& and the commissioning of a new manufacturing plant. Prof Harrison stresses that the current shortage is temporary and…
The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, is now available to view. This online forum focussing on skin cancer features presentations from: Dr Jonathan Lambert, Consultant Haematologist, UCLH, London and Dr Elizabeth Kulakov, Consultant Dermatologist, UCLH, London. Plus a Q&A session chaired by Prof Claire Harrison, Guy’s &…
Interferon supplies for people with MPNs – update 04 Sep 24 Pegylated interferon alfa 2a (Pegasys) is currently in short supply in the UK and worldwide. This is because the licence to make the drug has passed from one pharmaceutical company to another, and there are delays while the new company sets up its manufacturing…
The NCPE, the body that assesses and recommends drugs for use by the health services in Ireland, has recently released initial advice following their assessment of ropeginterferon alfa-2b (Besremi) for the treatment of patients with Polycythaemia Vera. As part of that assessment process MPN Voice made a patient group submission highlighting the benefits of Besremi…
Interferon supplies – Update 19 August 2024 For some time we have been aware that there are international shortages of interferon alpha, in particular pegasys (pegylated interferon alpha 2a). We have been liaising via our medical team with the national pharmacy and procurement teams looking at advice and options. This includes the possibility of using…