Plan sponsors face growing pressure as treatment access depends on province, not medical need
Skyclarys (omaveloxolone), the first and only treatment for Friedreich Ataxia (FA), received Health Canada approval in late 2023 and a public reimbursement recommendation from Canada’s Drug Agency.
Yet, as reported by Healthy Debate, Quebec’s Institut national d’excellence en santé et en services sociaux (INESSS) rejected it, citing a lack of long-term data and concerns about cost-effectiveness—even though the drug has also received approval in the US and Europe.
According to Healthy Debate, FA disproportionately affects French Acadian communities in Quebec and Eastern Canada. Despite meeting medical criteria, patients in Quebec have been denied access purely based on geography.
One parent said, “It is unbearable to know a drug exists that could help your child and still be told you can’t have it.”
The situation reflects what Muscular Dystrophy Canada (MDC) has called a national failure. They argue that Canada's drug reimbursement system is fragmented, slow, and inconsistent.
While Health Canada and national reviewers may support a treatment, final access depends on province-specific budgets and policies.
As per Healthy Debate, families are often left in limbo—some forced to pay out of pocket, others watching their loved ones deteriorate.
These inconsistencies mirror broader access challenges faced by plan sponsors managing group health benefits. As reported by Benefits and Pensions Monitor, plan members increasingly expect flexibility, choice, and timely access to care—including for rare diseases.
David Adams, senior vice president at Medavie Blue Cross, noted that post-pandemic demand for digital and hybrid care models has surged, reshaping expectations around benefit delivery.
Adams told Benefits and Pensions Monitor that “plan members are really healthcare consumers,” and emphasized the need for platforms that offer both traditional and virtual options.
This dual-access model is essential for reaching a diverse workforce, especially as convenience and availability become central to healthcare engagement.
But without consistency across provinces, even the best-designed benefit plans may fall short.
As per Healthy Debate, while adults with spinal muscular atrophy can access therapies in Quebec, most other provinces do not offer coverage.
Meanwhile, Skyclarys remains inaccessible in Quebec, despite possible availability elsewhere. For plan sponsors, such disparities introduce uncertainty into coverage planning and claims forecasting.
MDC emphasized that the federal Rare Disease Drug Strategy was meant to address these access gaps.
However, according to Healthy Debate, the strategy has yet to yield meaningful change—delivering more confusion and delay rather than the promised coordination.
As rare disease families continue to face irreversible decline with each delay, MDC called for urgent reform.
They reiterated their position as treatment-agnostic but committed to ensuring “timely, fair and informed access to the treatments” Canadians need—regardless of their postal code.
