Canada putting $1.5B into better therapy access, rare disease care

National Strategy for Drugs for Rare Diseases will be a three-year initiative

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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The Canadian government has committed to invest CA$1.5 billion (about $1.1 billion) over three years to improve access to medicines and ensure better care for people with Lambert-Eaton myasthenic syndrome (LEMS) and other rare diseases.

The effort, being called the National Strategy for Drugs for Rare Diseases, also aims at assuring that “promising and effective drugs for rare diseases” are affordable, according to a Health Canada press release.

This effort will help to address a long-term gap in meeting the needs of patients with rare and complex diseases and their families, noted BIOTECanada, an association of health, biotech, and other industries across the country.

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CA$1.4 billion over 3 years to improve drug access and patient diagnosis

“Today’s announcement is an important initial step which sends a strong message to investors and researchers of Canada’s commitment to addressing the need of patients globally,” Andrew Casey, president and CEO of BIOTECanada, said in an association press release.

Through bilateral agreements, CA$1.4 billion will be given by the national government to the country’s 10 provinces and three territories to improve treatment access, both for new and existing therapies, and to support faster diagnosis and screening for rare conditions.

The program also aims to “engage” with local governments to “determine a small set of new and emerging drugs” to be “cost-shared and covered in a consistent way across the country,” the government’s release stated.

An additional CA$33 million will be given over three years to Indigenous Services, the Canadian program for indigenous people, to support rare disease patients in the First Nations and Inuit communities.

Another CA$68 million will go to various other initiatives, from adding an advisory committee and secretariat to Health Canada to improving the collection and use of “real-world evidence” and establishing patient registries. Among these initiatives is a plan to invest CA$32 million over five years in rare disease research, with “a focus on developing better diagnostic tools, methods for tracking of rare diseases, and establishing a robust Canadian rare disease clinical trials network,” the government announced.

The Canadian Organization for Rare Disorders estimates that some 3 million people in Canada — one in every 12 residents — are currently living with a rare disease.

Casey noted that Canada houses many companies, from small university startups to global industries, working in therapy development, including for rare diseases.

“Remarkable new technologies and therapies are on the horizon, including some being developed by Canadian biotech companies,” he said, adding that “many global pharma companies are investing in and/or partnering with Canadian companies to advance innovative biotech solutions emerging from Canadian universities and research labs.”