High-Cost Drugs for Rare Diseases Survey

Health Canada has prepared a survey entitled “National Strategy for High-Cost Drugs for Rare Diseases Online Engagement.” Rare diseases include myeloma, but also many others such as ALS, CFF and more. The groups that represent these patients, including SAMPS, are very interested in these issues. This survey is open to all Canadians, and we encourage you to participate.

To help Canadians with rare diseases access the drugs they need, Budget 2019 proposed to invest up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing. As reaffirmed in the 2020 Fall Economic Statement and Speech from the Throne, this includes working with willing provinces, territories and stakeholders to establish a national strategy for high-cost drugs for rare diseases.

As Canada considers how best to create a national strategy on high-cost drugs for rare diseases, it is important that Canadians - especially patients, their families and their caregivers - have a voice in helping to shape it. We invite Canadians to share their ideas and views on what a national strategy could look like. This feedback will help inform the design of the strategy and ensure it helps patients get better access to the effective drugs they need.

The survey is open until March 26, 2021. Full details can be found on the Government of Canada website.