North Island Conservative MLA Anna Kindy is calling for immediate changes to British Columbia's drug approval and funding processes for rare diseases.
The call comes after the family of 10-year-old Charleigh Pollock found out in June the province was cutting funding for a costly medication known as Brineura for their daughter. The drug helps stabilize a rare and terminal brain condition called Batten disease, which Charleigh has. The medication costs about $1 million a year and is administered via an infusion of fluid directly to the brain to slow down the progression of the disease.
READ MORE: 'Charleigh wins': Island mom overjoyed at B.C. U-turn on funding decision
Following significant public outcry, Health Minister Josie Osborne called the girl’s family on July 17 to inform them the ministry was reversing its decision, reinstating coverage for Brineura.
At least 10 physicians stepped down from the province's Expensive Drugs for Rare Diseases committee, which is responsible for reviewing and recommending funding for medications used to treat rare diseases, following the province's reversal. They claimed the government interfered politically by overturning their recommendation to revoke the girl's coverage.
The decision to reinstate coverage was because of a disagreement in the medical community about the effectiveness of the drug Brineura, health minister said at the time.
But Kindy said the decision to revoke the drug should never have happened in the first place.
“We are rationing care for the most vulnerable, and families are being left to fight behind closed doors," Kindy said in a statement.
In a video posted to her Facebook page, the Conservative health critic said she was shocked to learn how badly B.C. ranks when it comes to providing lifesaving medications for rare diseases.
"Take short bowel syndrome. There are about 32 kids in B.C. with this condition. They can't eat normally, so they rely on something called TPN or Total Parenteral Nutrition. That means being fed through a tube straight into your bloodstream."
There is a medication that can help, Kindy said, but it is not covered in B.C., despite being covered in every other province. This means kids with the disease are not receiving the treatment, she said.
Kindy also criticized the 52-member Expensive Drugs for Rare Diseases committee for lacking transparency, stating it operates in secrecy with undisclosed membership, unpublished meetings, and no input from families.
The high cost of medication for rare diseases poses a significant challenge, with new drugs ranging from $100,000 to $2 million annually per patient. In 2024, the province spent $153 million on these drugs, up from $101 million in 2023, with a five-year annual growth rate of 48 per cent, according to UBC's Therapeutics Initiative, an independent organization. If this trend continues, costs could exceed $1.6 billion in five years and $11.3 billion in 10 years, all for medication intended for less than one percent of the population.
On Monday (July 28), Premier David Eby pledged to reform the Expensive Drugs for Rare Diseases committee. He said it needs to be more transparent and work in a way where experts are making the decisions.
"It did not work that way in the Charleigh case," Eby said. "We had two groups of experts fighting it out – one very publicly, one secret committee within the Ministry of Health speaking through politicians. That doesn't work."
In an email to Campbell River Mirror, Osborne said the Ministry of Health is reviewing the committee's process and structure to identify opportunities for improvement.
“We also recognize the need to increase public understanding of how the (committee) process works. Greater transparency can help build trust and ensure that patients and families feel heard and informed as decisions are made," Osborne said.
“There is ongoing debate among experts about the criteria Canada uses to guide the use and funding of Brineura. These are complex and difficult decisions that rely on evidence and clinical expertise – but children like Charleigh should never be caught in the middle of disagreements between experts and clinicians."
The Mirror contacted Dr. Sandra Sirrs, one of the members who resigned from the province's rare diseases committee, and is awaiting a response.
- with files from Ben Fenlon
