Government of Canada Improves Access to Affordable and Effective Drugs for Rare Diseases

Rare Daily Staff

The Canadian government said it would invest $1.1 billion (CAN$1.5 billion) over three years to support the nation’s first ever National Strategy for Drugs for Rare Diseases.

The funding will be used to increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada. As part of this overall investment, the government of Canada will make available up to $1 billion (CAN$1.4 billion) to provinces and territories to improve access to new and emerging drugs, as well as support enhanced access to existing drugs, early diagnosis, and screening for rare diseases. This will help patients with rare diseases gain access to treatments as early as possible for better quality of life, the government said.

There are thousands of different rare diseases that affect patients, their families, and caregivers across the country. Unfortunately, treatments are only available for a small percentage of these conditions. Even when treatments that might dramatically improve the quality of a patient’s life are available, they are often unaffordable and out of reach.

Innovative treatments for rare disease can cost anywhere from $73,000 (CAN$100,000) to more than $1.5 million (CAN$2 million) per year. The Canadian federal budget for fiscal 2019 provided funding up to $733 million (CAN$1 billion) over two years, with up to $367 million (CAN$500 million) per year ongoing, to help Canadians with rare diseases access the drugs they need.

The new funding announcement follows the July 2021 release of a Health Canada report based on a national engagement on the National Strategy. The engagement garnered diverse perspectives from more than 650 individuals and organizations, including patients with lived experience, family members, and caregivers.

The Government of Canada said it will engage with provinces and territories to jointly determine a small set of new and emerging drugs that would be cost-shared and covered in a consistent way across the country, for the benefit of patients. Similarly, to further support eligible First Nations and Inuit patients living with rare diseases, $24 million (CAN $33 million) from this funding will go to Indigenous Services Canada’s Non-Insured Health Benefits Program.

In addition, Canada will also invest $50 million (CAN$68) million to be used for various initiatives to help improve consistent access to drugs for rare diseases across the country. This includes funding to the Canadian Agency for Drugs and Technologies in Health and the Canadian Institute for Health Information  to improve the collection and use of evidence to support decision-making; support for the Canadian Institutes of Health Research to advance rare disease research with a focus on developing better diagnostic tools and establishing a robust Canadian rare disease clinical trials network; and funding for the establishment of national governance structures to support the implementation of the Strategy.

“This investment will enable improved access to new and emerging drugs for Canadians with rare diseases, including children, as well as support to early diagnosis and screening,” said Adam van Koeverden, parliamentary secretary to the Minister of Health and to the Minister of Sport. “This is a first step in looking at drugs for rare diseases coverage from a national perspective – consistently ensuring that patients can access the drugs they need regardless of where they live in the country.”

Photo: Adam van Koeverden, parliamentary secretary to the Canadian Minister of Health and to the Minister of Sport