QUESTION PERIOD — Health
National Strategy for Drugs for Rare Diseases
February 29, 2024
My question is for the Government Representative in the Senate. Senator Gold, as you heard both in my statement and in Senator Mégie’s statement earlier, today is Rare Disease Day. According to the Canadian Organization for Rare Disorders, or CORD, the federal government promised a rare disease drug strategy five years ago.
This March will mark the first anniversary of the announcement of Canada’s National Strategy for Drugs for Rare Diseases, with the allocation of up to $1.5 billion over three years. However, to date, no new drug funding has become available, and not one single Canadian rare disease patient has benefited, despite a huge need for new, approved and recommended treatments for life-threatening diseases.
I have but one question, Senator Gold: When will the government implement the promised funding through Canada’s national rare disease strategy to help treat and care for the 3 million Canadians who live with rare diseases?
Thank you for your question. It’s an important one. I don’t have a specific timeline for you, but I can say — and colleagues should know — that the Minister of Health has announced the creation of the Implementation Advisory Group for the National Strategy for Drugs for Rare Diseases. Over the next three years, this group will provide a forum for both patients and stakeholders to provide patient-centred advice and to exchange rare diseases-related information as well as the best practices that will inform the implementation of this national strategy.
The group includes approximately 20 members from across the rare disease community, including those with lived experience and those who provide or work to provide care for patients, such as clinicians, the pharmaceutical industry and researchers. I understand that the first meeting has taken place. The formation of this group marks the continuation of a critical dialogue between patients, their families and caregivers and stakeholders in the development and implementation of this national strategy, with an eye to providing better outcomes for those who suffer from rare diseases.
