First results from the Great MS Meds Survey – Part 1
In February, MSology put out the call for you to tell us about your experience with MS treatments – and the results are now in!
When the numbers were added up, the Great MS Meds Survey received a total of 388 responses from people living with MS from around the world.
Most of the respondents were from Canada (82%) and the U.S. (10%), but we also heard from people in the U.K., Australia, New Zealand, the Netherlands, Sweden, Switzerland, Portugal, South Africa, Lebanon, and Bahrein. The survey was also provided in French, and we had additional responses from our readers in Quebec, France, Belgium and Lebanon. The final tally from English and French Canada was 322 responses, or 85% of the total.
In keeping with the demographics of MS, 85% of respondents were women. Slightly more than one-half were aged 51 or older, 26% were in their 40s, 17% were in their 30s, and 6% were in their 20s. Most people said they’d been living with MS for 6-10 years (21%) or 11-20 years (32%). A total of 8% were newly-diagnosed with MS, and 19% had had MS for 2-5 years.
Many studies have found that people are typically diagnosed in their 20s or early 30s. In the Great Meds Survey, people tended to be diagnosed a bit later. On average, survey respondents were about 48 years of age and had been living with MS for about 12 years – suggesting that most were diagnosed in their late 30s. This is consistent with what we see in clinical trials. Doctors can now diagnose MS earlier than before, but most people starting treatment in contemporary clinical trials (e.g. the OPERA studies of Ocrevus, the DEFINE study of Tecfidera, the FREEDOMS study of Gilenya) are, on average, in their late 30s.
The focus of the Survey was on the medications that people take to control their MS. This included the injectable meds (Copaxone, Avonex/Plegridy, Rebif, Betaseron), the oral drugs (Aubagio, Tecfidera, Gilenya), and the infusion agents (Tysabri, Lemtrada). Ocrevus and Zinbryta weren’t available or widely used at the time of the survey so we didn’t ask you about your experience with them.
Overall, 72% of survey respondents said they were taking an MS med, 20% had tried a medication but had stopped treatment, and 8% had never started. These results differ from those reported just a few years ago by the North American Research Committee on MS (NARCOMS), a registry of people with MS. When the group surveyed people in 2011, 41% were not taking an MS med (either they’d stopped and started, or never started) (Salter and colleagues. Patients Prefer Adher 2014:8 971-979). While databases aren’t directly comparable, the MSology survey results suggest that more people living with MS today are taking a medication. This likely reflects the many treatment choices now available. Between 2011 and our 2017 survey, five new MS medications (Aubagio, Tecfidera, Lemtrada, Plegridy and Zinbryta) have gone on the market.
Who are the people taking these medications? Few of our respondents (10%) were newly-diagnosed with MS. Most had been living with MS for 2-5 years (23%), 6-10 years (20%), or 11-20 years (32%). However, many people living with MS for over 20 years – the first group of people with access to MS medications – continue to take a treatment.
A surprising finding from the survey was that although people on medication tended to be older (72% in their 40s or older) and living with MS for many years, a majority – 71% – have only been taking their MS med for a relatively short time (a period of less than 6 years). This suggests that people delay starting therapy. The reason may be that people early in their disease, and those with milder or less intrusive symptoms, see less of a need for treatment. This impression is reinforced when we look at medication use by age group: 63% of respondents in their 20s were on treatment, compared to 74-76% in their 30s and 40s, and 87% in the age 51+ group. As MS worsens with age in most cases, and the need for treatment becomes more apparent.
So what were the most popular MS meds? We’ll answer that question in Part 2 of this series.
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