Strategy & Access
Only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA.
Strategy
About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. The Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
- Improving early detection and prevention,
- Providing timely, equitable and evidence-informed care,
- Enhancing community support,
- Providing sustainable access to promising therapies and
- Promoting innovative research
- FAQs: Everything you Want to Know about Canada’s Rare Disease Strategy
- Canada’s Rare Disease Strategy (EN)
- Canada’s Rare Disease Strategy Executive Summary (EN)
- Canada’s Rare Disease Strategy (FR)
- Canada’s Rare Disease Strategy Executive Summary (FR)
- Initial Draft Discussion Document for A Canadian Orphan Drug Regulatory Framework (Dec 2012)
Access
With regard to the cost of orphan drugs, it is important to remember that the only acceptable solutions are those that assure rare disease patients get access to the right drugs in a timely fashion.
CORD believes there are workable solutions. We have consistently called for affordable and sustainable access to rare disease drugs, recognizing the small patient population, the lack of effective alternative therapies, and the overall budget impact as well as per-patient cost.
CORD has (repeatedly) proposed a responsible “managed access” pathway, starting only those patients who meet “evidence-informed” start criteria and maintaining those who continue to meet “treatment milestones” or show net benefits. This approach has been used in Canada for rare and common drugs and is increasingly used in the European Union. Health Ministers have not agreed to meet with CORD and the patient community.