however, for too many canadians, these treatments remain out of reach, due to accessibility and affordability barriers. a june 2018 survey by the canadian organization for rare disorders found that 78 per cent of rare disease patients experienced challenges accessing needed medicines, 70 per cent faced delays in securing necessary therapies and 58 per cent were denied access due to cost. a national rare disease strategy is long overdue.
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the federal government is on the right track. a year ago, the house of commons standing committee on health detailed a road map for a better future for canadians facing rare diseases, and made recommendations on a host of issues — drug approvals, pricing of drugs, how drug costs are reimbursed and access to diagnostic tests for rare diseases.
in budget 2019 , the federal government also promised to work with provinces, territories and other partners to “establish a national strategy for high-cost drugs for rare diseases.” our industry can be one of those partners.
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