The battle over a life-altering drug for a 10-year-old Vancouver Island girl reached an impasse yesterday as B.C. Health Minister Adrian Dix firmly stated the province would not reverse its decision to deny coverage for the $300,000-per-year medication.
Cambria Couch, who suffers from an ultra-rare genetic disorder called metachromatic leukodystrophy (MLD), has been caught in a bureaucratic standoff between provincial health authorities and advocacy groups pushing for coverage of the drug Metfabrio (metreleptin). Her mother, Sarah Couch, has been fighting tirelessly for access to the treatment that could potentially halt the progression of her daughter’s degenerative condition.
“We’ve examined this case thoroughly through our established review process, and the decision stands,” Minister Dix told reporters at the Legislature on Tuesday. “While I deeply sympathize with the family’s situation, we must follow the evidence-based frameworks that guide our pharmaceutical coverage decisions.”
The drug, which received Health Canada approval in 2022, has shown promising results in slowing neurological deterioration in some patients with MLD. However, B.C.’s Drug Benefit Council has maintained that there isn’t sufficient clinical evidence to justify the extraordinary cost for public coverage.
Rare disease advocates have criticized the decision as emblematic of a larger problem in Canadian healthcare – the disproportionate burden placed on families affected by uncommon conditions.
“When a treatment exists but is denied based on cost calculations, we’re essentially telling these families their children don’t matter enough,” said Jennifer Molson from the Canadian Organization for Rare Disorders. “This case highlights the urgent need for a national rare disease strategy that doesn’t leave these decisions to individual provinces.”
The Couch family’s plight has garnered significant public attention after local media coverage revealed Cambria’s condition continues to worsen while awaiting treatment. Without intervention, MLD typically causes progressive loss of motor function, cognitive abilities, and eventually leads to premature death.
Financial analysts note that the case reflects the growing tension between limited healthcare budgets and the soaring costs of specialized medications. “The pharmaceutical pricing model for rare disease treatments creates impossible choices for public health systems,” explained Dr. Michael Klein, a health economist at the University of Victoria. “When treatments cost hundreds of thousands per patient annually, difficult decisions must be made about resource allocation.”
The family is now considering legal options, including a potential constitutional challenge based on access to healthcare. Similar cases in other provinces have occasionally resulted in coverage approvals following court proceedings or extraordinary public pressure.
Meanwhile, community fundraising efforts continue in Langford, where local businesses and schools have rallied to support the family. A GoFundMe campaign has raised over $85,000 toward treatment costs, but remains far short of what would be needed for sustained treatment.
As this standoff continues, a fundamental question emerges for our healthcare system: how do we balance fiscal responsibility with our moral obligation to help our most vulnerable citizens when life-changing treatments exist but remain financially out of reach?
