The MCAS care crisis: Canada can’t afford to look away

When one of Canada’s leading experts in Mast Cell Activation Syndrome (MCAS) retired recently, thousands of patients – me included – were left scrambling.

MCAS is a complex, underrecognized yet common chronic condition affecting mast cell function – key regulators of the immune system – that drives a wide range of inflammatory, allergic-like symptoms that can manifest across multiple systems in the body. In Canada, options are dire: piecemeal care from specialists or costly consultations with U.S. immunologists. Neither is sustainable or equitable.

These gaps reflect a larger structural challenge seen across the landscape of rare disease care in Canada. Though rare disease affects an estimated one in 12 Canadians, patients frequently face delayed diagnoses, inconsistent access to treatment and a fragmented system that varies dramatically by province. The federal government’s National Strategy for Drugs for Rare Diseases was announced in 2023, with up to $1.5 billion over three years pledged to improve drug access, screening, diagnostics and infrastructure – yet the strategy is still in early phases, and many provinces only recently signed bilateral agreements to participate.

The reality is that infrastructure beyond drug funding – including provider training, diagnostic pathways and care coordination – remains underdeveloped. The rare disease and underrecognized disease community, including the Canadian Organization for Rare Disorders, continues to call for investment not just in medications but in systems that support patients’ daily lives, as current programs often fail to address the full spectrum of care needs.

As MCAS awareness grows and prevalence is better recognized, the absence of a coordinated, Canada‑wide care framework becomes ever more glaring. It’s symptomatic of a system that never trained the next generation of MCAS specialists, never updated diagnostic protocols and never prioritized inflammatory disease pathways in health planning.

My own story is sadly typical. After years of escalating symptoms, I was referred to internal medicine at St. Michael’s Hospital in Toronto, only to be told my labs were “fine” and that I should go on an eight-week meditation retreat. One doctor flatly said, “You’ll never get a medical diagnosis.” I cried in my car on the way home.

This is not an individual failing. It’s a symptom of a larger systemic gap. For decades, one or two immunologists quietly carried this field in Canada. The “old boys’ club” mentality – something I encountered firsthand within some academic hospitals – has kept MCAS on the fringes of medicine.

“You’ll never get a medical diagnosis.” I cried in my car on the way home.

What exists today is sparse and fragmented access to care, limited global research and a reliance on U.S. care. Patients report being told by Canadian physicians that “MCAS isn’t real,” or being dismissed altogether because there is a massive knowledge gap.

This gap is dangerous. MCAS patients often present with multi-system symptoms – anaphylaxis, chronic pain, neurological issues, gastrointestinal symptoms – that require coordinated care. When care is delayed or fragmented, patients get sicker, costs go up and health outcomes plummet.

But this isn’t just about MCAS – we are in the midst of a chronic illness crisis. Nearly 45 per cent of Canadians live with at least one chronic condition. Long-COVID has only made the cracks more visible: recent data shows that 3.5 million Canadian adults have reported experiencing long-term symptoms following a COVID-19 infection, and about 2.1 million were still living with those symptoms as of June 2023 – roughly seven per cent of Canadian adults.

Patients are not staying quiet. Google searches for “mast cell activation” and “MCAS” have surged. Online forums and podcasts now reach millions globally, while #MCAS content has earned more than 130 million views on TikTok.

Lawrence Afrin’s Never Bet Against Occam, published in 2016, remains the most-cited clinical resource nearly a decade later – patients buy copies for their doctors as trusted guides. Yet, research suggests MCAS may affect up to 17 per cent of the global population, with most cases never diagnosed.

Public figures like Solange Knowles, Halsey and Jameela Jamil have brought MCAS into the spotlight. Others – Bethenny Frankel, Kate Beckinsale, WWE wrestler Raquel Rodriguez, gymnast Natasha Coates – have also shared their MCAS journeys publicly. But awareness isn’t enough. We need infrastructure: specialists, funding, research and a seat at the table in health-policy planning.

There is an opportunity to do better. Ontario has already taken steps to make it easier for U.S. doctors to practice here. Why not prioritize allergists and immunologists with MCAS expertise as part of this recruitment push?

At the same time, we need to:

• Mandate Continuing Medical Education programs so current physicians can recognize and manage MCAS.
• Fund Canadian research initiatives focused on MCAS prevalence, evidence-based treatment protocols and clinical trials.
• Fund diagnostic innovation, including better biomarkers and lab protocols.
• Build national registries to collect Canadian data and inform policy.

If we fail to act, more patients will spend their savings on U.S. care, risk medication errors, face preventable disability and further burden an already stretched health-care system. The human toll is staggering – and still largely invisible to decision-makers.

MCAS patients and taxpayers deserve better. The solutions exist. What’s missing is the political will to treat this like the crisis it already is.