CORD is pleased that the governments of Canada and British Columbia have signed this bilateral agreement. We would like to thank all of our members and partners that have advocated over the past fifteen years for a Canadian rare disease strategy. This latest plan for funding medicines is a huge step in that direction.

In fact, huge steps are particularly needed and especially in British Columbia, which is among the most challenging jurisdictions for patients to get funded access to new medicines.

We are also relieved that patients with a very rare blood cancer as well as those with primary hyperoxaluria type 1 (PH1) will benefit from a new therapy.

That said, CORD remains very disappointed that we remain in the dark regarding the other ten medicines that have been pre-negotiated as eligible for access to the new funding. We had no input on which medicines would qualify for the enhanced federal funding.

So many questions remain. We don’t know what this means for our patient organizations who may be called upon to help generate and contribute to the real world evidence required. We don’t know what that data will be used for, and how it will link into existing programs and policies, such as the new Canadian Rare Disease Network.

For this reason, CORD planning to host a webinar for members where we will take their questions and help bring them forward to governments. Health Canada and BC officials will be invited to respond and discuss the new agreement, and we hope they will help inform next steps on improving access to medicines for our patients.

Health Canada’s Press Release: https://www.canada.ca/en/health-canada/news/2024/07/government-of-canada-signs-two-bilateral-agreements-with-british-columbia.html