May 29, 2025 | News | Living with MS MS Research MS Treatments My Voice

The MS treatment experience – survey results

Part 1

MSology recently completed a survey of people with multiple sclerosis to learn more about their experience with disease-modifying therapies (DMT) in Canada. About 70% of respondents lived in Ontario, Alberta and Quebec, which roughly corresponds with the proportion of Canadians in those provinces. Survey respondents were generally older: 31% were 46-55 years old and 48% were older than age 55. A total of 78% had been living with MS for over 10 years.

Overall, 60% of people said their doctor discussed starting a DMT either at the time of diagnosis or within the first six months. However, one-third said their doctor talked about treatment much later or not at all. About 71% said they started treatment right away or within the first year after diagnosis. The remaining 29% said they did not start treatment with a DMT.

People who are not on treatment
Few studies have specifically looked at people with MS who are not on treatment. Untreated people often do not enroll in patient registries and drug databases exclude them. That is one of the reasons why MSology conducted this survey. Recent long-term Canadian studies have reported that about 25-30% of people with MS filled a prescription for a DMT in the preceding year (Graf and colleagues. Lancet Reg Health Am 2024:29:100667. Ng and colleagues. Mult Scler 2022;28:583-596).

In the MSology survey, about 30% of people said they did not start treatment within the first year of diagnosis, and a similar proportion said they are currently untreated. However, the reasons for not being treated will differ during the course of the disease. At diagnosis, some people said they were hesitant about starting a medication because they were not convinced they needed one, were concerned about side effects, or they wanted more time to think about it. In a few cases, treatment was not an option – a reflection of the age of some of the respondents who were diagnosed before DMTs became available in the late 1990s.

The survey found that 30% were untreated; population studies have found that only 30% are treated. This disparity can be explained by the population being studied. Health databases capture the prevalence population, that is, everyone who has been diagnosed with MS. A substantial number of these people are older or have developed progressive MS, so they may not be eligible for a treatment. After a certain age (about 60 years), the benefits of treatment may be outweighed by the risks, such as the increasing risk of infections in older individuals. With progressive MS, few treatments have been approved (e.g. Ocrevus, Mayzent); if not approved for progressive MS, they will not be reimbursed by the government or private insurers.

In the subgroup of survey respondents not on treatment, 41% said that treatment would not be effective – typically because of aging or progressive MS. About 14% said they stopped for other reasons (e.g. side effects), 10% said their MS was not severe enough, and 10% said treatment was not convenient (e.g. they live too far from an MS clinic or infusion centre).

When asked if they would consider starting treatment, most said they would not or could not. Respondents said they were coping with their symptoms well enough, did not believe that treatment would improve their situation, or they would no longer get any benefit from a medication (because of their age or disability status). About 1 in 5 untreated people thought their MS was not severe enough to justify the hassles and expense of treatment and/or they wanted to manage their MS with lifestyle changes, such as diet and exercise.

It is unfortunate that older survey respondents were diagnosed before the era of higher-efficacy DMTs, which are associated with better long-term outcomes. In a study comparing people with MS in Sweden (where 42% start treatment with a higher-efficacy DMT) and the Czech Republic (where only 3.8% start with a more potent medication), the Swedes were three times more likely to experience an improvement in their level of disability (Hrnciarova and colleagues. Mult Scler Relat Disord 2023;76:104803).

In Part 2 of this series we will look at people who are on a DMT and what they think about their treatment journey.

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