Perceptions of and Experiences with the High Cost of MS Disease-Modifying Therapies

Thursday, June 2, 2016
Exhibit Hall
Bari Talente, JD , National MS Society, Washington, DC


For people with MS, evidence highlights the importance of early and ongoing treatment with disease-modifying therapies (DMT’s).  DMT costs have accelerated at rates well beyond inflation and substantially above rates observed for drugs in a similar biologic class. Evidence from the general population indicates that drug prices are a barrier to access.  There is anecdotal evidence that DMT access is limited by cost.


To understand the perceptions of people living with MS related to the cost of the MS DMT’s and their experiences with access due to cost and to compare the results to a general U.S. population surveyed by the Kaiser Health Foundation.


An electronic survey, adapted from Kaiser Health and Consumer Reports surveys, was sent to 1.3 million people in the National MS Society database; 123,484 who identify as living with MS. The survey queried all recipients about their perceptions of the cost of MS disease modifying therapies and queried people with MS about their experiences with access due to cost.


There were 11,194 respondents; 8,778 identified as living with MS. Of all respondents, 79.1% felt the cost of prescription MS treatments is unreasonable; compared to 72% of Kaiser respondents. People with MS reported more difficulty paying for their medication, 38.9%; compared to 24% of the general population.  And 28.3% of people with MS reported it was somewhat or very easy to afford their medication; compared to 72% of the Kaiser respondents. 30% of people with MS skipped doses or stopped treatment due to cost and 40.3% were in a DMT assistance program. Due to cost 21% spent less on entertainment and dining out; 16.4% used a credit card more; nearly 15% asked their healthcare provider for a less expensive version of their medication and nearly 14% postponed paying other bills.


People with MS are more severely impacted by the cost of medications than the general U.S. population and may be finding ways to pay for their medications that are impacting their ability to live their best lives.