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Feds to spend $1.5B over three years to improve access to drugs for rare diseases

Health Matters March 7: An Edmonton internist got an unexpected medical education when he ended up in the ICU for months, paralyzed with a rare disorder — only the 17th documented case of anti-neurofascin syndrome in the world. Dr. Rob Agostinis shared some of the lessons he learned as a patient with Su-Ling Goh. – Mar 7, 2023

The federal government says it will spend up to $1.5 billion over the next three years to improve access to drugs used to treat rare diseases.

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Health Minister Jean-Yves Duclos says up to $1.4 billion of that money will be used to help provinces and territories expand coverage of new and existing drugs that treat rare diseases.

The federal government says it wants to create a list of new and emerging drugs for rare diseases that would be covered in a similar way by all provincial and territorial health insurance plans.

Another $52 million will be used to gather evidence on the safety and effectiveness of these drugs as well as for research on diagnostic tools and creating a clinical trials network.

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And $33 million will go to Indigenous Services Canada to support eligible First Nations and Inuit patients with rare diseases

The government says one in 12 Canadians has a rare disease, and that innovative treatments for those diseases can cost between $100,000 and $2 million per year.

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