Open Letter to Prime Minister Justin Trudeau regarding PMPRB Regulations

AAMAC has written a letter to the Prime Minister that supports the letter written by CORD and Myeloma Canada on proposed sweeping changes to the drug pricing review board.





May 8, 2019


The Right Honourable Justin Trudeau, PC, MP
Prime Minister of Canada
80 Wellington Street
Ottawa, Ontario K1A 0A2


Dear Prime Minister Trudeau,

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada. Our organization supports patients and caregivers across the country who are living with aplastic anemia (AA), myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH).

We are writing to you today to express AAMAC’s support for the letter sent to you on April 8, 2019, by the Canadian Organization for Rare Disorders and Myeloma Canada, which outlines in detail major concerns to the sweeping changes proposed to the Patient Medicine Prices Review Board (PMPRB).

We share concerns of these two organizations that the regulatory changes will mandate drug prices so low that companies will not launch new drugs in Canada, or they will wait until after they have been available for years everywhere else.

Therapies for patients diagnosed with AA, MDS and PNH rely primarily on ‘best supportive care,’ blood transfusions, and a limited number of therapies that – at best- treat symptoms but are not curative.  There are drug and gene therapies in drug trials right now that have the potential to significantly improve the lives of people living with these rare bone marrow failure diseases.

Inability to access these new drugs and therapies would have a devastating impact on patients with bone marrow failure diseases, for whom cell and gene therapy may offer a life-changing solution.

We are asking you and your government to reconsider the changes to the PMPRB regulations.  We remain deeply concerned that implementation of the PMPRB regulations will obstruct and slow patient access to needed medicines, putting at risk the lives of people who live with rare disorders.



Chair, Board of Directors
Aplastic Anemia and Myelodysplastic Association of Canada


The Hon. Ginette Petitpas Taylor, PC, MP, Minister of Health
The Hon. Bill Morneau, PC, MP, Minister of Finance
The Hon. Joyce Murray, PC, MP, President of the Treasury Board
Dr. Mitch Levine, Chair, Patented Medicine Prices Review Board
Douglas Clark, Executive Director, Patented Medicine Prices Review Board