EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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Myeloma Patient Europe (MPE) has been aware of the lack of clinical trials opening in many Central and Eastern European (CEE) countries, as well as inequalities in access with CEE countries for participating in ongoing trials. To gather data on, and further understand the access situation, MPE conducted research on barriers and facilitators to clinical trials, with a specific focus on CEE countries. The research was completed under the guidance of MPE members from across the region through its CEE workgroup.

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Brussels, 27 September 2022 – For some European myeloma patients, their diagnosis can take over 5 months, require more than 4 medical consultations and involve visits to at least 3 different medical specialists. These are some of the findings of pan-European research conducted by Myeloma Patients Europe (MPE) with the aim of exploring patient and doctor (haematologist) experiences of myeloma diagnosis. MPE ran a survey, and several focus groups and interviews, in which more than 600 myeloma patients and 80 haematologists across Europe participated. The results were presented today during the first-ever European Myeloma Day in an online event. You can access the full report on the research findings here: Myeloma Diagnosis Across Europe – The Diagnosis Experiences of European Myeloma Patients and Perspectives from European Haematologists. Continue reading

 

The European Commission has approved marketing authorisation (e.g. a license) for melphalan flufenamide (also called melflufen), a drug marketed in Europe by Oncopeptides with the name of Pepaxti®. This follows the previous positive recommendation from the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP).

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Since 2015 Lise-Lott has been Chairman of the Swedish Blood Cancer Association, previously Chairman of the Blood Cancer Society in Stockholm and now the president of Myeloma Patients Europe (MPE). Lise-Lott is very active in policy-related issues within the Swedish cancer care area. She focuses on access to new drugs for haematological disorders (especially myeloma), reimbursement, pricing, patient influence in clinical trials and health technology assessment decisions. She works actively to raise the status of expert patient advocates in Sweden.

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The European Medicines Agency (EMA) has recommended a conditional marketing authorisation in the European Union (EU) for teclistamab for the treatment of adult patients with relapsed and refractory myeloma, who have received at least three prior therapies, including an immunomodulatory agent, a proteasome inhibitor and an anti-CD38 antibody, and whose cancer has worsened since receiving the last treatment.
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According to a new study published in Blood Advances, caregivers for patients with myeloma may suffer from higher rates of anxiety and depression than patients themselves. While medical professionals have long acknowledged the toll a serious or terminal diagnosis can have on a person’s mental health, few studies have investigated how these conditions affect the family members, friends, and loved ones who care for these individuals.

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MPE will hold a focus group to find out more about CAR-T from a patient perspective. We will be asking questions that relate to quality of life measurement within CAR-T clinical trials and to the wider impact of CAR-T on individuals and their partners, family members, carers, or friends.

 

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The European Hematology Association’s (EHA) annual congress, one of the most important haematology congresses here in Europe, was held in Vienna, Austria from 9 June to 12 June 2022 in a hybrid format.

Myeloma Patients Europe (MPE) attended EHA 2022 in person and interviewed relevant myeloma and AL amyloidosis specialists to provide an overview of the key highlights in both diseases presented during this meeting.

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