The MS treatment gap: How costs and outdated policies limit care in Canada

John, a 36-year-old patient with Multiple Sclerosis (MS), described his steady, invisible decline in function – known as “smouldering MS” – in a 2024 MS Brain Health international report and explained that because smouldering MS does not present with relapses, he was denied access to more effective treatment.

Cases like his highlight growing concerns within Canada’s MS treatment system. Treatment recommendations for MS are evolving. Early, aggressive treatment is now recognized as having the potential to significantly improve outcomes for people living with MS.

Frustrations grow for both patients and physicians alike when it comes to applying these recommendations. Advocacy groups are waiting for provinces to implement new coverage policies meanwhile patients are left without optimal care.

MS is a complex and unpredictable disease with no current cure, often treated with Disease Modifying Therapies (DMTs) that help to slow disease progression. However, physicians cannot prescribe certain, newer DMTs as first-line treatment, and access to DMTs across Canada is not equal. In part, these issues are the result of the current stepped-care model for MS treatment. A system which Judith Glennie, Project Manager of the Drug Access Working Group under the Canadian Network of MS Clinics, says “is, bottom line, out of date.” It’s a treatment system founded when fewer therapies were available for MS, she explains.

In the current model, treatment sequence restrictions apply. Patients often are initially prescribed older DMTs. Only after experiencing failure on a treatment do patients qualify to switch to newer, second-line therapies that often are more efficacious, more aggressive – and more expensive.

Previously, they were only recommended if required, with increased disease progression. However, the scientific consensus now suggests that more aggressive therapies are beneficial for hindering disease progression early in disease treatment.

“The philosophy in the evidence now is to start treating as early as possible with the best drugs you have,” Glennie says. “If you do that, you tamp down disease progress and mitigate disability and the long-term negative implications of MS.”

The 2024 MS Brain Health report notes that patients who initiate early treatment with higher efficacy DMTs show improved outcomes with significantly lower rates of relapse and disability. Results that persist 10-15 years following initial treatment, compared to those initiated on lower efficacy DMTs.

With the changing landscape and recommendations, those working in and a part of the MS community are hoping that provinces will take steps to improve first-line access to higher efficacy treatments for a broader scope of with MS.

The problem for patients and payers alike is that these therapies are costly. Without coverage, MS medications can range anywhere from $10,000 to $50,000 per year. Living with MS already places a heavy financial burden on patients and their families. Costs of treatment, taking time off work for treatment and increased disability can all contribute to financial strains. People with MS are twice as likely to live in poverty, says Jenniffer McDonell, Director of MS Information and Resources at MS Canada.

Both public and private plans have trouble balancing the costs, a dilemma ultimately passed down to the patients. In Alberta, for example, if the government chooses not to list a therapy on its formulary for reimbursement, patients who have coverage through Alberta Blue Cross may not have access to medication coverage at all, health economist Jeff Round notes, adding that it can depend on an individual’s extended coverage and the insurer.

Most MS medications are funded through public provincial plans, though each province has its own formulary and decides what it wants to list for funding. Access to many of these higher efficacy therapies requires the use of special authorization. This is a hallmark of a stepped-care model, Round says. Many private payers, if they offer coverage, can have their own criteria for access. Like provincial plans, accessing higher efficacy therapies requires patients to try other medications and meet certain disease criteria before being approved for more expensive therapies.

“(Clinicians) are just saying (that) we want to be able to use these medications in patients based on the evidence that’s available,” says Glennie.

Yet, some medications are left off provincial formularies altogether despite federal approval, as is currently the case with Kesimpta in British Columbia.

Virginia Devonshire, Neurologist and Director of the UBC and UNBC MS/NMO Clinics, explains that for people in northern B.C., access to some MS therapies is limited, especially for patients who receive infusion treatments administered only at specialized MS clinics. In these cases, patients and their family members lose up to two days of income traveling to receive treatment.

One solution, Devonshire says, is ofatumumab (Kesimpta), a self-injectable medication that would spare patients from needing to travel for infusions. While Kesimpta was approved by the Canadian Drug Agency in 2021, it is not covered under B.C. Pharmacare. The drug is fully covered in Ontario and Quebec with special approval, while other provinces offer partial coverage.

“We’re a very large country… and it’s not easy for all patients to get to infusion sites.”

“I feel that there are restrictions that make it very challenging for patients,” she says. “We’re a very large country; we use a lot of infusion drugs … and it’s not easy for all patients to get to infusion sites.”

Teresa Alfeld, who is a B.C. resident and a Type 1 diabetic, was recommended Kesimpta by her neurologist.

“I was shocked to learn that B.C. is the only province that doesn’t cover Kesimpta,” she says.

Alfeld describes the process of navigating treatment access as demoralizing and exhausting. B.C. Pharmacare denied her request for special exemption and suggested she could take rituximab instead. People with Type 1 diabetes cannot tolerate steroid drugs administered alongside rituximab. She says the pharmacare officials she spoke to were not aware that the two drugs were given together.

Instead, she has been advised that she first “try and fail” on rituximab before Kesimpta could even be considered, Alfeld questions what failure entails. “Would you like to see me grow another lesion?”

Now she’s considering relocating to another province, rather than be limited to lower-efficacy therapies. “I just need Pharmacare to wake up,” she adds.

Ultimately, MS Canada wants to see all approved DMTs be made available across the country, McDonell says.

Adds Julie Kelndorfer, Director of Government Relations and Advocacy for MS Canada: “It shouldn’t be the drug plans, both private and public, that dictate what you can have access to.”

However, clinical guidelines have been slow to change. Glennie says that in June 2020, Ontario clinicians began advocating for first-line access to the medications Tysabri (natalizumab) and Mavenclad (cladribine) that had been approved only for second-line treatment. Ontario did begin funding on a case-by-case basis but waited for a formal recommendation from Canada’s Drug Agency, released in May 2024, almost four years later. The report was passed on to a Formulary Management Expert Committee, which recommended covering both drugs as first-line treatments in March this year.

“Clinicians, especially the clinicians in Ontario who’ve been working on this for a long time, are pretty frustrated,” says Glennie, since the provinces have yet to take action on implementing the recommendation and “there’s no more evidence to be evaluated.”

Devonshire says B.C. physicians are having conversations with their provincial body, not necessarily to prescribe more expensive therapies in every case, but to improve access for situations in which intravenous administration is difficult or impractical. She advocates a need to balance cost control with clinical expertise but adds that guidelines should be set by experts in the field, not regulated solely by cost.

The difficulties in trying to institute changes to treatment access possibly are best summarized in a 2020 report by the Conference Board of Canada: “The Canadian drug reimbursement system is fragmented and difficult to navigate.”

But now that we have new recommendations, the question is how much longer patients will have to wait for provinces to act.