The patient's perspective: How to create awareness for improving access to care and treatment of MS patients?

Abstract

Background: There is currently no known cure for multiple sclerosis (MS). Four stakeholders play a major role in MS: healthcare professionals, regulators, payers and patients.

Objective: In Europe, patients are represented by the European Multiple Sclerosis Platform (EMSP), which aims to improve MS management and patients' quality of life.

Results: 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.

Keywords: European Multiple Sclerosis Platform; disease-modifying drug; healthcare; multiple sclerosis; patients; quality of life; treatment.