PATIENTS SAY “NO” TO UNJUSTIFIABLE NEW REGULATIONS THAT WILL OBSTRUCT THE ENTRY OF NEW MEDICINES TO CANADA
FOR IMMEDIATE RELEASE:
April 8, 2019, (Toronto, Ontario) Two major Canadian patient organizations have appealed directly to Prime Minister Trudeau in an open letter calling for a moratorium on planned changes to the Patented Medicines Regulations which could harm patient access to new life-saving drugs.
In the letter which is available at www.raredisorders.ca, Dr. Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD) and Martine Elias, Executive Director, Myeloma Canada express urgent concerns over how the new regulations will impact the entry of new medicines into Canada. Dr. Wong-Riegerand Ms. Eliasserve as patient members on a Steering Committee that is studying the proposed Patented Medicines Prices Review Board (PMPRB) regulatory changes.
“As patient members appointed to the PMPRB Steering Committee on Guidelines Modernization, our responsibility is to ensure the needs of the millions of Canadian patients are adequately reflected in the proposed regulatory changes,” said Dr. Wong-Rieger. “So far, there is no indication that the PMPRB is willing to listen and we appear to be crash test dummies in a vehicle on a pre-set course to go over a cliff.”
“We all want to have access to medicines at affordable prices,” added Ms. Elias. “However, these proposed changes by the PMPRB will mean that many new therapies will not be available in Canada. It will be unethical, unjustifiable, and unfair but nevertheless inevitable that Canadian patients will be denied breakthrough, lifesaving, and even incrementally better medicines.”
The patient representatives urge the Prime Minister to exercise his leadership and instruct the PMPRB to undertake a proper consultation on the proposed changes before it’s too late, especially in light of new national Pharmacare initiatives. Dr. Wong-Rieger added that, “If done right, consultations on a new national Pharmacare program could lead to better access to affordable medicines that patients need to be well and, in many cases, survive.”
CONTACT
Durhane Wong-Rieger
Canadian Organization for Rare Disorders
(647) 801-5176
durhane@raredisorders.ca
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On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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