pan-canadian strategy needed in rare disease battle
more than three million canadians living with rare disorders have been fighting for testing, diagnosis, care, and treatment long enough.
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more than three million canadians with rare diseases and their families have been fighting to solve a puzzle of testing, diagnosis, care, and treatment their whole lives. mostly on their 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 and cardiovascular disease, while it may appear to be costly to diagnose and treat, the costs of not getting a timely diagnosis and access to the best treatment are much higher.
tired of fighting mostly on our own, the rare disease community, inclusive of patients and healthcare providers and under the leadership of the canadian organization of rare disorders (cord), has developed solutions to timely diagnosis, care and treatment.
in 2015, cord released canada’s rare disease strategy, which proposed a five-point plan aimed at addressing 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.
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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 an ongoing investment of $500 million annually. earlier this year, health canada released its proposed framework, which includes 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 or her best life.
it’s time for provincial and territorial governments to step up and add both their perspectives and contributions to the proposed framework to bring into reality a canadian rare disease infrastructure. this will ensure the optimal efficiency and cost-effectiveness of a canadian rare disease drug program.
fundamental to optimizing drug access and management is a coordinated national approach that would assure access, for every canadian who has or may have a rare condition, to the full range of specialized knowledge, care facilities and resources regardless of where they lived in canada. new technology and services can facilitate the movement of patients and their files from one canadian jurisdiction to another to achieve timely diagnosis and treatment.
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there is 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.
dedicated funds are needed to help support the establishment of networks of centres of excellence across canada. more than three million canadians living with rare disorders have been fighting for testing, diagnosis, care, and treatment long enough. it’s time for the provincial and territorial governments to take this critical next step.
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— durhane wong-rieger is the president and ceo of the canadian organization for rare disorders.
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