title: The patient's perspective: How to create awareness for improving access to care and treatment of MS patients?
abstract: There is currently no known cure for multiple sclerosis (MS). Four stakeholders play a major role in MS: healthcare professionals, regulators, payers and patients.
  
  
  
  In Europe, patients are represented by the European Multiple Sclerosis Platform (EMSP), which aims to improve MS management and patients' quality of life.
  
  
  
  The EMSP has recently shown that there are major disparities in Europe in terms of access to care and treatment. Implementing the Code of Good Practice and a standardised MS nurse training may be useful in harmonising MS management across Europe. Additionally, the burden for novel therapeutic options to be approved by regulatory agencies has to decrease in order to provide faster access of treatment to patients. Data collection (e.g. national registers) also appears crucial to help research and shape the most effective policy in each country. Finally, people with MS should get appropriate (financial) support in order to complete their studies and find a job, as their active participation in society requires proper access to education and employment. Moreover, as they are the ones affected by MS, they seem to be best placed to represent themselves and their needs and should be consulted more often during decision-making processes by policy makers, regulators and payers.
authors.affiliation: University of Lille, CHRU de Lille, Lille International Research Inflammation Center (LIRIC), INSRRM U995, FHU Imminent, Lille, France patrick.vermersch@univ-lille2.fr.
authors.forename: Patrick
authors.initials: P
authors.lastname: Vermersch
authors.affiliation: Attorney and Health Advisor, Basel, Switzerland.
authors.forename: Andreas
authors.initials: A
authors.lastname: Faller
authors.affiliation: Polish Multiple Sclerosis Society (Polskie Towarzystwo Stwardnienia Rozsianego - PTSR), Warsaw, Poland.
authors.forename: Dominika
authors.initials: D
authors.lastname: Czarnota-Szałkowska
authors.affiliation: Managing Director at Ismar Healthcare, Lier, Belgium.
authors.forename: Bianca
authors.initials: B
authors.lastname: Meesen
authors.affiliation: Deputy CEO and Director External Affairs, European Multiple Sclerosis Platform (EMSP), Schaerbeek/Brussels, Belgium.
authors.forename: Christoph
authors.initials: C
authors.lastname: Thalheim
mesh_terms: D003299:Cooperative Behavior; D017281:Cost of Illness; D006297:Health Services Accessibility; D054625:Healthcare Disparities; D006801:Humans; D033183:Interdisciplinary Communication; D009103:Multiple Sclerosis / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D011379:Prognosis; D058996:Quality Improvement; D019984:Quality Indicators, Health Care; D011788:Quality of Life; D000073597:Stakeholder Participation
keywords: European Multiple Sclerosis Platform; disease-modifying drug; healthcare; multiple sclerosis; patients; quality of life; treatment