Plan sponsors face mounting pressure as $1m rare disease drug loses public coverage in BC
Public funding for Brineura, a $1m-per-year treatment for a rare pediatric neurological disorder, has ended in BC, reflecting broader challenges plan sponsors face amid rising drug costs, particularly for high-cost medications.
The BC Ministry of Health told the Vancouver Sun that nine-year-old Charleigh Pollock of Langford received her final publicly funded infusion of Brineura last Thursday.
Charleigh has Batten disease, a rare and fatal neurodegenerative condition.
Brineura is intended to slow the decline in motor and speech function but cannot stop disease progression.
Health Minister Josie Osborne said Canada’s Drug Agency had reviewed the case and found “no new evidence to change its 2019 recommendation to discontinue coverage of the drug, given the advanced stage of Charleigh’s condition.”
Osborne stated, “We all share the desire to do everything we can to care for this young girl. I empathize deeply with Charleigh’s family and my heart goes out to them.”
Charleigh, the only child in BC and one of fewer than 20 in Canada with Batten disease, began showing symptoms at age three.
According to the family, she had benefited from biweekly Brineura treatments for nearly six years. Her mother, Jori Fales, said she was still processing the news and could not comment further.
In earlier statements, Fales warned that discontinuation could lead to “rapid deterioration, irreversible loss of function and ultimately death.”
As reported by the Vancouver Sun, BC’s decision follows a January recommendation from the Canadian Drug Expert Committee to end coverage.
The committee is composed of clinical and public representatives appointed by Canada’s Drug Agency and advises public drug plans across the country.
BC had extended Brineura coverage until June 28 but noted Charleigh is the first Canadian to meet the national criteria for discontinuation.
The Ministry stated that once a patient’s motor and language functions have declined beyond a certain point, clinical evidence shows the drug no longer provides benefit.
Since the province began using the Canada Drug Agency's review process in 2007, BC has never continued drug coverage contrary to the Agency’s recommendations.
The Ministry also clarified that the cost of a drug is not considered in these clinical decisions.
BC Conservative MLA Brennan Day urged the province to reconsider the decision on compassionate grounds, saying, “I can’t imagine the emotions the family is feeling.”
The Brineura case highlights a broader national concern: the rising cost of specialty and rare disease drugs.
According to GreenShield’s 2024 Drug Trends Report, total drug costs adjudicated by the insurer rose from $1.55bn in 2019 to $2.46bn in 2023.
The number of claimants increased from 2.0 million to 2.5 million, with cost per claimant reaching a record $971 last year.
As per the report, chronic conditions such as diabetes and obesity are also driving up drug costs, particularly due to growing use of GLP-1 drugs like Ozempic.
Though usage has stabilized, GreenShield vice-president Ned Pojskic noted the drug remains a major cost factor.
He also pointed to the possible arrival of generic versions in March 2026, which could be “upwards of 75 per cent less expensive than their brand counterparts.”
High-cost medications, including biologics for autoimmune diseases, continue to reshape benefit plans. Pojskic said biosimilars—lower-cost alternatives to biologics—are a “really important driver of the savings that private plans can achieve” and could help offset the growing cost burden.
According to Benefits and Pensions Monitor, plan sponsors are increasingly pressured to provide robust coverage while managing tight budgets.
Small and mid-sized employers may soon need to make difficult decisions around coverage limits, deductibles, or co-pays.
Beneva vice-president Sunil Hirjee said the challenge lies in helping employers balance rising expectations and healthcare costs.
“Most employers genuinely want to offer this kind of comprehensive support… The challenge is that none of it comes without a cost, and those costs can be significant and ever-changing,” he said.
Hirjee noted that simplifying communication, encouraging preventive care, and investing in flexible tools are key to managing emerging pressures.
Beneva has been developing a new IT system to support this, while also focusing on drug cost management and flexible benefits design.
The Brineura case, set against this rising cost backdrop, underscores the complex balancing act between clinical effectiveness, affordability, and patient need.
