Durhane Wong-Rieger, PhD
President & CEO, Canadian Organization for Rare Disorders
The rare disease (drug) strategy can learn from the Canadian Blood Services and Hema-Québec for Rare Blood Disorders.
In 1997, the federal government began the transition of the entire system for collecting and distributing blood and blood products from the Canadian Red Cross to two independent agencies. One year later, the Canadian Blood Services (CBS) and Hema-Québec (HQ) were launched. For the past 25 years, they have served as the stewards for safe and adequate blood and plasma for transfusion purposes as well as timely and equitable access to innovative therapeutics for rare disease blood patients.
Is this the model for all rare disease patients? In 2019, when the federal government announced $1 billion to set up Canada’s Rare DiseaseDrug Strategy, was CBS and HQ what they had in mind? A centralized drug purchasing and distribution system with a “national” formulary, paid for by a combination of federal and provincial/territorial funds? How could it work? $1 billion is a lot of money but it would hardly cover all therapies for all rare diseases. Which diseases and which drugs would qualify, and who would decide? Would provinces agree to a cost-sharing plan, especially if they could not control access? Importantly, what would be the role for the private drug plans?
Investment in new and innovative therapies that best meet the individual needs of each patient is not only good for the patients but is cost-effective and sustainable for the governments.
As importantly, would Canadian patients buy in? One key to success for CBS and HQ is that the agencies have demonstrated that investment in new and innovative therapies that best meet the individual needs of each patient is not only good for the patients but is cost-effective and sustainable for the governments.
Finally, the assurance of patients as equal partners within the system has been vital. The Canadian Organization for Rare Disorders is committed to the success of Canada’s Rare Disease Drug Strategy and looks forward to the implementation and the inclusion of patients in decision making throughout the system.
CORD calls for access to $1.4 billion in Rare Disease Drug Strategy. Visit raredisorders.ca.
