March is Multiple Myeloma Awareness Month. This incurable disease affects increasingly young adult generation. In Europe, more than 50.900 people were diagnosed with myeloma in 2020.
Patient organisations from Central and Eastern Europe (CEE) have joined forces to create the documentary My myeloma: ready for the steps ahead, which premiered on 21th of March 2023 in Ljubljana, Slovenia. The premiere was attended by patient representatives, patient organisations, healthcare professionals and media representatives, who expressed their support in sharing the voice of myeloma patients and their needs.
The patient stories, shared in the documentary were produced in collaboration with several European patient organisations, most of them Myeloma Patients Europe (MPE) members: Croatian Leukemia and Lymphoma Society (HULL), Mijelom CRO – Croatian Myeloma Patients Association, Myeloma multiplex csoport-Magyarország from Hungary, The Association of Myeloma Patients Serbia, Slovak Myeloma Society and Slovenian lymphoma and leukemia patient association, L&L, in partnership with MPE and with support of Janssen. It targets the general population as well as patients and carers to empower them in hard times facing the diagnosis, going through treatment and learning to recognise the symptoms. It also addresses healthcare and other professionals who can help to treat patients effectively, ensure comprehensive care and improve their quality of life.
The screening of the film was followed by a panel discussion with respective experts: Kate Morgan, MPE Chief Strategy Officer (CSO), Katie Joyner, MPE Chief Operating Officer (COO), prof. Roman Hájek, Head of the Department of Haemato-Oncology at the University Hospital and the Faculty of Medicine, University of Ostrava, Czech Republic, prof. Samo Zver, University Medical Centre Ljubljana & Full Professor of Internal Medicine and Hematology at Medical Faculty Ljubljana and prof. Heinz Ludwig, Chair of the Wilhelminen Cancer Research Institute at the Department of Medicine I, Centre for Oncology and Hematology, Vienna, Austria. The experts discussed the disease situation in CEE countries, key obstacles, challenges, patients’ needs across Europe, and treatment paradigm change in the nearest future. Experts agreed that myeloma treatment has been revolutionised in recent years, but there are still several challenges to address.
Katie Joyner MPE COO:
“Our role at MPE is to support our members in their national efforts to improve care and access and to advocate at European levels with the pharmaceutical industry, the European Medicine Agency (EMA) and policy makers on behalf of patients. We are proud of the incredible work our members are doing in Europe, and especially in CEE countries”.
Kate Morgan, MPE Chief Strategy Officer (CSO)
“Documentaries like this one are important and really help to show the patient perspective of a disease like myeloma and raise awareness of the challenges faced. At MPE we will continue to work hard, in collaboration with our members, to understand the inequalities (and best practice) on treatment access, diagnosis and clinical trials and help to find solution to reduce these differences. We’ll also continue to support our members in the important work they do with patients at a national level.”
Click here to watch the documentary.
Check here the Myeloma Access Atlas.
 Cancer Today Population factsheets: Europe Region, Available at: https://gco.iarc.fr/today/data/factsheets/cancers/35-Multiple-myeloma-fact-sheet.pdf, last assessed on February 2023.