Effect of MS Disease Modifying Treatment Prices on the Day-to-Day Lives of People with MS
Bari Talente1
1Advocacy, National MS Society
Objective:

To understand the experiences of people living with MS in accessing their disease modifying treatments, including the financial and emotional effects associated with the price of the MS DMTs.

Background:

Growing evidence highlights the importance of early and ongoing treatment with DMTs, making it critical to understand what variables impact people with MS having affordable access to the right medications for them.

Design/Methods:

An electronic survey was sent to people with MS registered with the National MS Society between July 9-13, 2019. 578 people completed the survey and the sample was weighted based on gender and region to reflect the demographics of MS in the United States. 96% of respondents had utilized a DMT and were included in the analysis. Fifteen qualitative interviews were held with survey participants to gain a deeper understanding of experiences.

Results:

40% of respondents altered use of their DMT due to costs. 70% of respondents receive financial assistance for their DMT, with 81% of these reporting they would face financial burdens without the assistance. 40% of respondents also reported some stress or emotional impact due to high out-of-pocket costs and have adjusted their lifestyle to afford their DMT. More than half of respondents are concerned about affording their DMT in the future. When asked about costs at a macro level, 82% agreed the price of MS DMTs is unreasonable and 85% felt the federal government should do more to control the costs.

Conclusions:

People with MS face significant financial and emotional challenges due to high prices and out-of-pocket costs for DMTs, which can result in non-adherence. Even with financial assistance, people experience anxiety, stress and guilt over the impact on their family, being able to afford their medication in the future, or from having to rely on assistance.