Shared policy initiatives and campaigning

At the year of the 9th European Parliamentary Elections, a broader alliance with patient organisations enabled us to bring up the priorities of the MS community on the political agenda. Our pre- and post-electoral campaign allowed us to raise awareness on the political priorities that impact the lives of people with MS, including digital health as a mean to influence decision making processes, Health Technology Assessment, as well as the promotion of the use of Real-World Evidence for improved, patient-centred decision-making.

In 2019, we joined forces with several broader pan-European organisations to support campaigns for access to better healthcare for patients and greater public understanding of brain health in general, and MS in particular:

MEP Interest Group on Brain, Mind & Pain - Book of Evidence (2019-2024) setting a strategic vision on policy action to deliver better care for people with neurological and chronic pain disorders in the EU

EMSP contributed to the development of the EU Health Summit manifesto and to the work of the EU Health Coalition

EPF elections manifesto 2019 (#europeforpatients) putting what matters most for patients at the heart of EU health policy

EBC: elections manifesto for an improved quality of life of people living with brain disorders

Work with the European Medicines Agency EUnetHTA

EMSP is a member of the Patient and Consumer Working Party and the Committee for Medicinal Products for Human Use of the European Medicines Agency (EMA). By being an active member within EMA, EMSP is looking to extend an intensive cooperation between MS patients and the EMA to involve people with MS in all possible procedures within EMA.

Patients’ contribution is very important also for pharmacovigilance, e.g., adverse drug reaction reporting, as well as pushing national authorities to implement all rules of the Pharmacovigilance Directive. Another major issue in which EMSP is involved is risk/benefit assessment and the communication towards the patients on this issue. EMSP is a collaborating partner of EUnetHTA, an EU Commission established initiative to create an effective and sustainable network for Health Technology Assessment (HTA) across Europe.

EMSP provides support in terms of effectiveness of HTA models, and fights for better patient involvement in processes impacting the access to treatment for people affected by MS.