TORONTO, June 28, 2021 – The Canadian Organization for Rare Disorders (CORD) emphatically supports the federal government’s recent decision to delay the implementation of the Patented Medicines Regulations to January 1, 2022, which is being reported by the media this afternoon.
“While we welcome the news of a third delay in these restrictive pricing guidelines, what we really need is a fundamental overhaul that takes into consideration all of the patient feedback received to date. CORD looks very much forward to working with government officials and helping lead a more open and transparent multi-stakeholder dialogue over the coming months, and especially in the context of the expected federal election,” said Dr. Durhane Wong-Rieger, President and CEO of CORD.
The delay allows time to fix the flawed regulations. If the Patented Medicine Prices Review Board’s (PMPRB) draconian pricing rules remain unchanged, rare disease and all other Canadian patients will continue to be at risk of losing access to life-changing new medicines.
According to Wong-Rieger, “The rare disease community is committed to assuring both affordability and timely access of medicines. Like all other countries, Canada needs to find solutions that will give patients early access. The key ingredients for success are evidence-development, negotiated access programs and patient involvement throughout.”
For its part, CORD is taking a leadership role on a national rare diseases strategy, bringing patient and expert voices to bear on Health Canada’s commitment to a rare disease drug program. CORD’s most recent webinar series called on Ottawa to jump-start Canada’s Rare Disease Strategy, which included a deep dive on the PMPRB (see: https://youtu.be/FSnx0fFkF90 and press release https://hriportal.ca/worst-fears-confirmed-pmprb-engages-in-advocacy-campaign-against-patients/). CORD plans to build on these efforts over the summer to create a forum for a new approach.
Wong-Rieger also noted that federal political parties are clearly preparing for an election call later this summer and will be hearing from the millions of Canadians affected by rare disorders who expect better from the federal government. “Now is time for all of us to step up with solutions that work for Canadians – and this includes every federal political party – so we’re not in the same position, six months from now.”
About Canadian Organization for Rare Disorders (CORD)
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca
For further information:
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
(647) 801-5176, durhane@gmail.com
For interviews and media enquiries:
Don Sancton, Senior Associate, 3Sixty Public Affairs
(514) 206-1191, dsancton@3sixtypublicaffairs.com