Canadians invited to share their views on a National Strategy for High-Cost Drugs for Rare Diseases
January 27, 2021 | Ottawa, Ontario | Health Canada
The Government remains committed to a national, universal pharmacare program and will accelerate steps to achieve this system including through a rare-disease strategy to help Canadian families save money on high-cost drugs. Approximately one out of twelve Canadians has a rare disease. Rare diseases are often genetic conditions that start at birth or in early childhood and can be seriously debilitating and potentially life threatening.
All Canadians, especially patients with rare diseases and interested stakeholders, are invited to take part and share their views on what a national strategy might look like. This feedback will help inform the strategy and ensure it helps patients get better access to the effective drugs they need. In addition, federal, provincial and territorial officials are working closely to build a strategy that works for all Canadians in the context of Canada’s health system and respect the role of provinces and territories in health care delivery.
Canadians can provide their views on the national strategy through an online questionnaire, as well as by providing written submissions on the key questions in the discussion paper to Health Canada. They can also participate in the discussion through public town halls from February 9 to March 23, 2021. Find out how to register here.
The online consultations will close on March 26, 2021.
“Canadians with rare medical conditions face many unique challenges, and we’re committed to improving access to the medications they need. These public consultations are an important opportunity to hear from Canadians, and I encourage everyone to participate. The views and feedback you share will be used to inform our development of a national strategy to help Canadians get better access to the effective treatments they need.”
The Honourable Patty Hajdu
Minister of Health
Budget 2019 announced up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing, to help Canadians with rare diseases access the drugs they need. This includes working with willing provinces, territories and stakeholders to establish a national strategy for high-cost drugs for rare diseases.
The prices of drugs for rare diseases can range from $100,000 to more than $2 million yearly, per patient.
It is estimated that there are between 6,000 and 8,000 different rare diseases that have been identified to date.
The Government of Canada is engaging with provincial and territorial governments concurrently through a dedicated federal-provincial-territorial table.
Engagement with Indigenous partners and collaboration with health partners is also planned.
Office of the Honourable Patty Hajdu
Minister of Health
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