Conservatives criticize government over expensive drugs program

The Conservative Party of B.C. has called on the provincial government to improve transparency after a 2021 review into B.C.’s policies around expensive drugs for rare diseases was leaked.

The leaked document, which was first reported on by the Vancouver Sun, shows that the province conducted a full review into its Expensive Drug for Rare Diseases (EDRD) program back in 2021.

In a written statement to 1130 NewsRadio, B.C.’s Ministry of Health confirmed it received a report from Fraser Health Ethics Service, which conducted a review and provided recommended improvements to the EDRD program.

The Vancouver Sun reports that the leak reveals shortfalls in the province’s EDRD system — specifically around transparency in the committee’s decision-making processes.

The leak happened just a few weeks after the NDP government decided to reinstate the funding of drug coverage for a young girl on Vancouver Island with a rare and fatal disease.

In a previous decision, made after months of reviews by B.C.’s Ministry of Health, advisory committees, expert recommendations, and advocacy from the child’s parents and treating physicians, the provincial government originally chose to cut the funding.

Brennan Day, Conservative MLA for Courtenay-Comox, says this back-and-forth was due to the fact that the review into its EDRD program was not released in 2021.

He says the government should immediately release the review’s findings and an update on what has and has not been implemented.

“It’s really unfortunate that it’s taken this long for this document to come out. It’s clear the government had this well before the Charleigh Pollock case, dating back to 2021, and there’s been very little action taken on the report,” Day said in an interview with 1130 NewsRadio.

Charleigh Pollock suffers from a disease known as Batten disease, and the drug Brinuera is one of the only treatment methods.

While it is not a life-saving drug, it aims to slow the progression of the disease.

Brinuera can cost $1 million a year

Brineura can cost upwards of $1 million a year.

The Vancouver Sun reports that the 2021 review called for a 36-point communication and public engagement strategy to explain decisions and build public trust.

MLA Day expects the government to provide an update on all those 36 recommendations — many of which focus on increased transparency and clear evidence standards.

“The inclusion of rare disease patients in chronic care coverage. So those 36 total points, we don’t know yet from the government where they’re at with any of those 36 points. It seems like this report was issued and then forgotten about,” he said.

Day says what Charleigh’s family went through in their case should not have happened.

“The family was largely left in the dark, and unfortunately, it’s clear the government was aware that this system was broken four years ago, and there’s been very little action taken to avoid what that family had to go through,” he added.

B.C.’s Ministry of Health says it has implemented 87 of the report’s recommendations, while seven are not currently being pursued. It also says that 20 recommendations are outside of BC’s control, which means they can only be addressed by the federal government, and 15 remain under consideration.