After the federal government announced its plans for a National Strategy for Drugs for Rare Diseases in March 2023, it committed $1.5-billion over three years to establish governance structures, including the new Implementation Advisory Group (IAG), announced October 30.
Health Canada estimated that one out of 12 people has a rare disease in Canada. The stated objective of the national strategy is to increase access to, and affordability of effective drugs for rare disease to improve the health of patients across Canada.
“Over the next three years, the IAG will provide a forum for patients and stakeholders to provide patient-centered advice and exchange rare disease-related information as well as best practices that will inform the implementation of the national strategy,” Health Canada states in an announcement about the group’s launch.
The 20-member panel of clinicians, pharmaceutical industry representative and researchers and their annually rotating co-chairs, might also invite external participation to support specific discussions. Among the members of the IAG is also Stephen Frank, President and CEO of the Canadian Life and Health Insurance Association (CLHIA).
It also plans to host an open town hall twice annually to share progress. The IAG may also recommend the establishment of working groups to assist with the exploration of specific topics. Representatives from public drug plans and representatives from the pan Canadian Pharmaceutical Alliance will also be invited to participate in meetings.
The IAG will operate until March 2026 at the latest, as determined by the deputy minister of health.