February 26^th 2021

The Throne Speech delivered in September 2020 reaffirmed the Canadian Government’s commitment to work collaboratively with provinces, stakeholders, Canadians living with rare diseases and their families and other key players to establish a national strategy for high-cost drugs and rare diseases.

Rare diseases are often genetic conditions that start either at birth or in early childhood. They are often chronic, can be seriously debilitating and potentially life-threatening leaving families and those living with the condition to be put through many challenges when trying to access treatment. Cost is often a significant barrier, as prices of drugs for rare diseases can range from $100,000 to more than $2 million per patient per year.

To address this, Budget 2019 allocated 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 is in addition to support Health Canada’s proactive announcement of the final amendments to the Patented Medicines Regulations. These amendments give the Patented Medicine Prices Review Board (PMPRB) new tools to protect Canadians from excessive prices of patented medicines. Health Canada consulted, Canadian consumer and patient groups, employers, health professionals, health researchers, other levels of government, pharmaceutical industry, private insurers and more to ensure the amendment was made with comprehensive research and input. This is the first substantive update to the regulations in more than 20 years. We anticipate that with these regulatory changes, Canadians will save approximately $13.2 billion over the next 10 years on patented drugs.

To keep the momentum and focus, all Canadians, especially those living with rare diseases and interested stakeholders, are invited to share their views on what a National Strategy for High-Cost Drugs for Rare Diseases could look like by March 26, 2021. Public engagement is being carried out by way of an online questionnaire and virtual town halls. Canadians can also submit their views and feedback by email or mail. In addition to collecting feedback from Canadians, 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. I encourage  local individuals living with rare diseases, their families, caretakers and other partners to give their input without delay here: https://www.canada.ca/en/health-canada/programs/consultation-national-strategy-high-cost-drugs-rare-diseases-online-engagement.html

During my time as co-chair of the All-Party ALS committee and through continued collaboration with constituents and stakeholders at a grassroots level, I continue to hear about the need to further reduce barriers for those living with rare diseases. When an individual receives a diagnosis, their focus should be on their next steps to managing their health, not if they can afford access to the treatment.

Advancing a National Pharmacare Strategy for all is a priority for our government. Recently opposition introduced Bill C-213 “An Act to enact the Canada Pharmacare Act”. While we fully support the spirit of C-213 to make national universal pharmacare a reality, however we won’t get there by imposing criteria on the provinces and territories, we will continue to pursue those conversations on this most important matter.  We have committed to build a collaborative effort that empowers provinces and territories to build the framework that put the best interest of residents first. There are still many details that need to be clarified and further consultations must be considered.

This pandemic has taught our communities great resilience and has further amplified the need to address all facets of Canadian’s health including the affordability and accessibility of drugs and treatments for rare diseases and inclusive framework for continued research and legislation. Thank you to everyone who continues to make a difference in the rare disease community and inspires each of us to consider acting and giving input. With your advocacy we have found many successes over the years and we can pave the way to a healthier tomorrow.

Marc G. Serré
MP Nickel Belt

Contact
Kaylie Dudgeon
Special Assistant, MP Nickel Belt Marc G. Serré
705-507-2416 / [email protected]