Living with MS: Understanding the Patient Experience

We join the global community on World MS Day 2017

May 31, 2017

On this World MS Day, patients, caretakers and researchers are focused on “Life with multiple sclerosis (MS),” and for everyone that MS touches, it offers a reminder of how important it is to understand the full impact MS has on those living with this disease. For more than 25 years, Biogen has been at the forefront of discovering and developing therapies for people with MS. As we continue to advance our scientific research, we recognize that our efforts must also be concentrated on improving patient outcomes and quality of life.

To gain a more comprehensive assessment of disease impact, Biogen commissioned the MS Cost of Illness (COI) Study in Europe, led by Gisela Kobelt, Ph.D., President, European Health Economics. This is the largest study of its kind in any therapeutic area1 and provides insights from nearly 17,000 people with MS across 16 European countries. The study greatly expands our knowledge of MS at the personal and societal levels while spotlighting additional important aspects of the disease.

By leveraging the study’s outcomes, we intend to provide our multiple stakeholders – including patients, advocacy groups, healthcare providers and payers – with credible information and data they need to make informed decisions. We also hope to facilitate new conversations to improve treatment approaches, enhance patient management and provide the evidence needed to support access to therapies.

Among the study’s highlights:

  • Fatigue and cognitive difficulties are among the most burdensome symptoms of MS: Across all disability states, 95% of patients reported fatigue as an issue, while 71% of patients reported cognitive difficulties
  • MS impacts the ability to work: More than 50% of patients are unemployed or retired due to MS, despite being younger than retirement age
  • Early diagnosis and treatment is critical: Diagnosing and treating earlier in disease progression may help contain overall costs and maintain patient quality of life
  • The total financial burden on people living with MS increases dramatically with increasing disease severity: The total financial cost of MS includes direct healthcare and medical costs, as well as indirect costs related to MS (e.g., missing work or becoming unable to work)

We believe studies like this offer a more comprehensive understanding of the total impact of MS. We hope these findings provide evidence to inform discussions with stakeholders across Europe, potentially influencing policy decisions that could help patients gain access to the best treatment and care and making a difference in the lives of those living with MS.

Join Biogen, the Multiple Sclerosis International Federation (MSIF), and the global MS community in recognizing this year’s World MS Day by sharing this article, joining the social media conversation (use the hashtags #LifewithMS or #WorldMSDay) or by visiting to share your tips for living with MS.

Related content:
Video – MS Cost of Illness study
Taking a closer look at the personal societal impact of MS in Europe

Video – The Burden and Cost of MS
The MS Cost of Illness study aims to provide evidence to inform discussions with stakeholders across Europe

To learn more about our continued efforts in MS, please visit the Leadership in MS section of our site.

1 Kobelt G, Berg J, Gannedahl M, Eriksson J, Thompson A, MS BOI Study Group. Cognition, fatigue and health-related quality of life in patients with multiple sclerosis: results from a European-wide study. P871. 32nd Congress Of The European Committee For Treatment And Research In Multiple Sclerosis (ECTRIMS). 14-17 September 2016. London, UK.

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