CAD 1.5 billion for rare diseases and access to medicines for everyone
The new National Strategy will provide all age groups of the population with the necessary medicines in the next 3 years.
Jean-Yves Duclos, Minister of Health announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years that will make medicines for rare diseases more accessible to both adults and children.
The Government of Canada will make available up to $1.4 billion to provinces and territories through bilateral agreements. This will help improve access to new medications as well as provide diagnostics for rare diseases.
In addition, Health Canda also invest $68 million for various initiatives to help improve consistent access to drugs for rare diseases across the country, including:
- The Canadian Agency for Drugs and Health Technology (CADTH) and the Canadian Institute for Health Information (CIHI) will receive $20 million CAD over 3 years "tto improve the collection and use of evidence to support decision-making";
- The Canadian Institute for Health Research (CIHR) will receive $32 million CAD over 5 years "to advance rare disease research with a focus on developing better diagnostic tools and establishing a robust Canadian rare disease clinical trials network";
- And the remaining $16 million CAD over the next 3 years will be allocated to support the establishment of national governance structures, such as a Health Canada secretariat and a stakeholder Implementation Advisory Group, to support the implementation of the Strategy.
The development of the strategy was the result of long consultations and meetings. More than 600 people were involved. The strategy is designed to improve the collection and use of evidence and to increase investment in rare diseases.
Today, lack of access to medicines remains a serious problem in Canada. Statistics show that one out of twelve people—many of whom are children—has a rare disease.
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