Increasing access to myeloma and AL amyloidosis treatment and care

MPE supports member organisations to advocate for better access to treatment and care in their own countries by providing up-to-date evidence, information and tools. The Myeloma Access Atlas is an online platform, updated biannually, that supplies information on the approval and reimbursement status for myeloma and AL amyloidosis treatments across more than 30 countries in the European geographical region. In addition, the platform offers national health system statistics, access news and a coaching programme to assist organisations with developing national access strategies. Under the coaching programme, organisations are able to not only find tools to help them define, create and implement an advocacy strategy, but are also offered one-to-one support to discuss and find solutions to specific access challenges. You can find more information on our coaching programme here.

MPE is also working at European and international levels to advocate for improved access:

• MPE is a member of the Health Technology Assessment International (HTAi) Patient and Citizen Involvement Interest Group (PCIG). HTAi PCIG brings together a variety of stakeholders to include patient and citizen perspectives into Health Technology Assessment (HTA)
• MPE commissions research to find causes and potential solutions to common regional access issues. A recent such example is the project “Addressing access barriers to myeloma clinical trials in Central Eastern Europe”
• MPE regularly liaises with representatives of the pharmaceutical industry to address access challenges across Europe

Impacting European Union (EU) policy

MPE represents the interests of myeloma and AL amyloidosis patients at the EU level and thus engages in and seeks to influence EU policy on their behalf . MPE does this by participating in consultative groups and committees, either associated with the European Commission or with professional groups, by responding to public consultations on specific regulations and by collaborating with other patient organisations to develop shared policy positions.

MPE is a member of:

• European Commission’s Health Technology Assessment Stakeholder Network
• European Patient Advocacy Group (ePAG) of EuroBloodNet, the European Reference Network on Rare Hematological Diseases
• European Cancer Organisation’s Patient Advisory Committee
• European Hematology Association’s European Affairs Committee
• EURORDIS (alliance of patient organisations representing 1000 rare disease patient organisations in 74 countries)
• Workgroup of European Cancer Patient Advocacy Networks (WECAN)

Examples of MPE’s contribution to EU policy over the past few years include responding to the open consultations for the reform of the EU pharmaceutical legislation and EU Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare.

One area of policy in which MPE is very active recently is the new EU Health Technology Assessment regulation. Please visit the EU HTA regulation link and the HTA information page in Educational resources on access and policy below for more information.