CORD Open Letter to Premiers

July 8, 2022

Subject: Developing a truly Canadian approach to improving the lives of Canadians with rare diseases

Dear Premiers,

Rare disease has a tremendous impact not only on the 3.2 million Canadians living with one of 6,000+ rare diseases but also on society as a whole.

But for far too long, those of us with rare disorders have been struggling to deal with the challenges mostly on our own. It takes five to 10 years to get an accurate diagnosis and years more to get to the right specialist, with multiple misdiagnoses and sometimes the wrong treatment along the way.

And just like cancer, cardiovascular disease, and COVID-19, while it may appear to be costly to diagnose and treat, the costs of not getting a timely diagnosis and not getting access to the best treatment are much higher. 

Which is why the rare disease community, inclusive of the patients and healthcare providers, under the leadership of the Canadian Organization for Rare Disorders (CORD), has taken it upon themselves to develop solutions … to timely diagnosis, care and treatment.

In 2015, CORD released Canada’s Rare Disease Strategy, which proposed a five-point plan to address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat. This strategy continues to be the roadmap for what needs to be done across all stakeholders and lays the groundwork for much of the recent momentum created by the announcement of a Rare Disease Drug Strategy.

In 2019, the federal government committed to improving access to rare disease therapies by investing $1 billion over two years (2022-2023) to implement a national Rare Disease Drug Strategy with on-going investment of $500 million annually. Earlier this year, Health Canada released its proposed framework, which includes proposed investments in a number of key areas.

We now have a once-in-a-lifetime opportunity to build on this growing momentum to implement a coordinated pan-Canadian strategy, so that every Canadian, no matter where they live, can live his/her best life.

Over the past 20 months, in addition to providing input to Health Canada’s consultations, CORD has hosted over 25 webinars, forums, and conferences including all stakeholders. Collectively, we have developed widespread agreement around the desired outcomes, a blueprint for action and proposals for the use of federal funds. 

Now it’s time for provincial and territorial governments to step up and add their respective and collective perspectives and contributions to the proposed framework to bring into reality a Canadian Rare Disease infrastructure that will assure optimal effectiveness and cost-effectiveness of a Canadian Rare Disease Drug Program. 

Fundamental to optimal drug access and management is a coordinated national approach that would assure every person potentially with a rare condition access to the full range of specialized knowledge, care facilities and resources regardless of where they lived in Canada. Making use of SMART technology, patients and their files could move from one jurisdiction to another to achieve timely diagnosis and treatment.

In this context, and as part of your health-related discussions at the Summer 2022 Council of the Federation meeting in Victoria, I would like to bring to your attention one critical yet low hanging fruit that can bring immediate and significant added value to treating patients with rare disorders: the establishment of pan-Canadian Centres of Excellence.

Centres of Excellence bring together teams of clinical experts in a nationwide network of cutting-edge facilities, with the goal to provide standards of specialized care and disease management for people living with rare disease and their families, regardless of where they live or their drug plan provider.

Similar to how provincial cancer agencies manage all aspects of cancer in Canada, Centres of Excellence would present the opportunity for patients with a particular rare disease to receive the full spectrum of care and treatment for their disease. Importantly, this is also the cornerstone for how rare diseases are treated in other key jurisdictions, including the whole of Europe.

However, significant investments are needed to help establish and support these centres of excellence across Canada. 

For this reason, on behalf of the 3 million Canadians with rare disorders, I am asking your government to commit dedicated funds to support the establishment of networks of Centres of Excellence across Canada. 

Sincerely,

Durhane Wong-RiegerPresident & CEO
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4

Encl. CORD Proposal for Canada’s Rare Disease Drug Program within a Canadian Rare Disease System, including Rare Disease Centres of Excellence