On March 22, 2023, Federal Minister of Health Jean-Yves Duclos announced $1.5 billion in funding associated with the government’s long anticipated national rare disease strategy first announced in 2019.

Most of the funding – up to $1.4 billion – which is to be allocated over the next three years, is earmarked for bilateral agreements with provinces and territories to expand their drug programs’ coverage to include new and existing drugs for rare diseases, and to support early diagnosis and screening for rare diseases.
     
According to the announcement, federal, provincial and territorial governments will “jointly determine a small set of new and emerging drugs that would be cost-shared and covered in a consistent way across the country, for the benefit of patients”. PDCI will continue to monitor and report developments concerning how drugs will be selected by governments for funding under this strategy and whether consultations will be conducted.

The remaining funding will be allocated as follows:

• $33 million to Indigenous Services Canada’s Non-Insured Health Benefits Program to support eligible First Nations and Inuit patients living with rare diseases;
• $20 million over three years to the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Canadian Institute for Health Information (CIHI) to improve the collection and use of evidence to support decision-making;
• $32 million over five years to the Canadian Institutes of Health Research (CIHR) to advance rare disease research with a focus on developing better diagnostic tools and establishing a robust Canadian rare disease clinical trials network; and,
• $16 million over three years to establish governance structures, and an Implementation Advisory Group, to support the implementation of the Strategy.

For more information, please consult the Government of Canada’s news release.

Background: Federal Budget 2019 initially proposed investing up to $1 billion over two years, starting in 2022–23, with up to $500 million per year ongoing to improve Canadians’ access to drugs treating rare diseases. Health Canada’s 2021 Discussion Paper and public consultation sought stakeholder feedback on how to build the national strategy, culminating in its report Building a National Strategu for Drugs for Rare Diseases: What We Heard from Canadians.
 

Please contact Courtney Abunassar, Associate Director, Market Access and Policy Research at courtney.abunassar@pdci.ca for any questions or further information.