So Why DOES Canada have Scarcer Access to Rare Disease Therapies?

According to a story from CheckOrphan, Durhane Wong-Rieger, the CEO of the Canadian Organization for Rare Disorders, says that the Canadian health system has been letting down the roughly three million Canadians that live with rare diseases.

The Canadian health system, while generally good for people with common illnesses, still has some fundamental weaknesses that have yet to be resolved. Firstly, it is among the most expensive on the planet, with only Switzerland and the US costing more. In addition, while care from hospitals and physicians is universally covered, therapies are not. About two percent of the population lack coverage for therapies and about ten percent are inadequately covered.

The incomplete coverage of therapies is a major weakness for rare disease patients, who often have to pay for exceptionally expensive medications already; not having coverage can make this even more of a financial burden. Another criticism from Durhane is the fact that Canada has not passed any orphan drugs laws. These laws provide incentives for drug developers to create medications that treat rare diseases.

While the legal framework for such a law has been around for some time, it has been hung up on the provincial levels, mainly due to budget concerns. 1 in 12 Canadians have a rare disease, and about two thirds of these patients are children.

Despite the fact that rare diseases as a whole actually affect more people in Canada than cardiovascular illness, diabetes, and even cancer, far less effort has been made to help address the challenge that they pose. There are a number of rare diseases that seem to be particularly prominent in Canada, such as multiple sclerosis, cystic fibrosis, Fabry disease, and spinal muscular atrophy.

Spinal muscular atrophy (SMA) is particularly a problem, because the main drug for it, called Spinraza, has only been approved for type 1, which affects patients under 7 months old. If your SMA started later than 7 months, you are currently out of luck.

Access is the biggest challenge facing rare disease patients in Canada. CORD has issues several guidelines outlining how Canada can address the issue.

  1. Improvements to detecting rare diseases early and preventing it when possible

  2. Provide fair, timely, and scientifically backed care

  3. Work towards the development of more community support

  4. Promoting potentially innovative research

  5. Providing stable, sustainable access to effective therapies


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