This week, the Canadian Government published its budget for 2019 and for the first time, rare diseases is included in the budget.
The Budget, that can be read here, will allocate over $1 billion towards rare diseases and changing the heath care system. More specifically, the government will create 3 key items: the Canada Drug Agency; establishing a national formulary; and a national rare disease strategy. As you are aware, many stakeholders, led by CORD on the patient side and RAREi on the industry side, have been advocating for exactly this — the creation of a national strategy on rare disease therapies.
The Canadian Drug Agency, a new national drug agency will take a coordinated approach to assessing effectiveness and negotiating prescription drug prices on behalf of Canadians.
It will be interesting to see if this new agency will replace CADTH and pCPA, and/or put both under one roof. In the Budget, it is stated that Health Canada will receive $35 million over 4 years, starting in 2019–20, to establish a Canadian Drug Agency Transition Office.
A national formulary is also an interesting proposal in the Budget that could save Canada billions. It will be a comprehensive, evidence-based list of prescribed drugs, to be developed as part of the Canadian Drug Agency. This would provide the basis for a consistent approach to formulary listing and patient access across the country.
A national strategy for high-cost drugs for rare diseases will be developed to help Canadians get better access to the effective treatments they need. This is an important first step in expanding drug coverage through federal support. This is the big-ticket item in the budget. The have proposed to invest up to $1 billion over 2 years, starting in 2022–23, with up to $500 million per year ongoing. This strategy will gather and evaluate evidence on high-cost drugs for rare diseases, improve the consistency of decision-making and access across the country, negotiate prices with drug manufacturers, and ensure that effective treatments reach the patients who need them. The Government will work with provinces, territories, and stakeholders to establish the national strategy—an important first step in expanding drug coverage for patients with rare diseases, through federal support.
This is a significant win for the rare disease community in Canada and we at Rare Disease Foundation are thrilled by this announcement from the Canadian Government. Now the work really begins to ensure these proposals will properly address our community’s needs.