Today, Prime Minister Justin Trudeau officially apologized to all rare disease patients. In a statement before the House of Commons, Trudeau said, “For too long, the Canadian health care system has ignored the plight of persons with rare diseases. The rare community accounts for 8% – 9% of our population and we have too often abandoned them to focus our medical care on more common conditions that are easier to manage and finance. “
Trudeau added, “The majority of rare disease people are children. And our government’s past obsession with only providing drugs that are affordable means too many children are not getting access to ground-breaking medications that are transforming the lives of people in other countries. To those children, the Canadian government apologies.”
Coinciding with the official apology, the Trudeau government will begin developing a Rare Disease Drug Policy that will properly define a rare disease and provide incentives for clinical researchers and pharmaceutical companies to conduct research in Canada towards finding better treatments for rare conditions.
Some of the incentives for pharmaceutical companies will be tax breaks and reduced fees to encourage companies to conduct rare disease research in Canada. Trudeau noted, “If Canada wants to grow, the government must help that growth by stimulating innovation. Finding a new generic formulation for a common ailment is not innovation. Developing a gene therapy for a rare condition is. Rare disease research is the future and if Canada wants to stay competitive, then we must invest in that future.”
Generally, his apology and proclamation that Canada will legally define a rare disease was well received by the rare disease community, but some were critical of his dress attire during the announcement. James Radke, President of Zeal Access and former board member of the Canadian Organization of Rare Disorders (CORD) said, “it’s great that he apologized but many were hoping he would apologize in our traditional garb – the zebra suit. Even a zebra striped tie would have been more appropriate than the red tie he chose for today.”