The B.C. Conservative Party has urged the provincial government to enhance transparency following the leakage of a 2021 review on the handling of costly drugs for rare diseases in British Columbia.
The leaked report, initially disclosed by the Vancouver Sun, uncovers a comprehensive examination conducted by the province on its Expensive Drug for Rare Diseases (EDRD) initiative in 2021.
The Ministry of Health in B.C. acknowledged receiving a review report from Fraser Health Ethics Service, which assessed the program and proposed enhancements for the EDRD system, according to a statement provided to 1130 NewsRadio.
Revealed deficiencies in B.C.’s EDRD system, particularly regarding transparency within the decision-making processes of the committee, were highlighted in the leaked document as reported by the Vancouver Sun.
The leak occurred shortly after the NDP government opted to reinstate funding for drug coverage for a young girl on Vancouver Island afflicted with a rare and terminal illness.
Previously, following extensive reviews by the Ministry of Health, advisory committees, expert consultations, and advocacy from the child’s parents and treating physicians, the provincial government had initially opted to discontinue funding.
Conservative MLA Brennan Day of Courtenay-Comox attributed the back-and-forth decisions to the delayed release of the 2021 EDRD program review.
Day stressed the urgency for the government to disclose the review findings promptly, along with updates on the implemented and pending recommendations.
Charleigh Pollock, affected by Batten disease, relies on the drug Brineura as a treatment measure, which, while not curative, aims to decelerate the disease’s progression at a cost exceeding $1 million yearly.
The 2021 review, according to the Vancouver Sun, advocated for a 36-point communication and public engagement strategy to enhance transparency and public trust in decision-making processes.
MLA Day expects the government to provide an account of the 36 recommendations proposed, emphasizing the significance of transparency and clear evidence standards, particularly in the realm of rare disease patient inclusion in chronic care coverage.
Day underscored that the ordeal faced by Charleigh’s family should have been averted, condemning the government’s inaction despite being cognizant of systemic flaws dating back four years.
The Ministry of Health stated that 87 of the report’s recommendations have been implemented, while seven are not actively pursued. Factors beyond the province’s jurisdiction are accounted for in 20 recommendations, with 15 still under deliberation.