Drugs for rare disorders among discussions at conference of provincial and territorial ministers of health

Discussions at the conference of provincial and territorial ministers of health began Jan. 20, 2016 with the BC Health Coalition making strides to get the province’s “public health care back on track,” including drugs for unusual diseases.

The Conference of Provincial Territorial Ministers of Health takes place Jan. 20-21 at the Fairmont Hotel in Vancouver. Photo: Jocelyn Aspa

The Conference of Provincial Territorial
Ministers of Health takes place Jan. 20-21 at the Fairmont Hotel in Vancouver. Photo: Jocelyn Aspa

Launched May 2015, the Canadian Organization for Rare Disorders (CORD) and the Economic Club of Canada implemented a strategy that “calls for national standards for newborn screening, centres of expertise, sustainable access to treatments and dedicated funding for rare disease research.” 

In a news release, Durhane Wong-Rieger, President and CEO of CORD, said the strategy is achievable.

“More than 30 other countries have national rare disease plans. With respect to drugs for rare diseases, patients have been waiting for over a decade for the national plan that was promised by Health Ministers in 2005,” she said.  “We are hopeful that these health ministers will announce concrete steps towards fulfilling that commitment.”

Canadians suffering from rare diseases have had difficulties getting the right diagnosis, and treatment. It’s reported one in 12 Canadians has a rare disease, which is approx. 2.8 million people, and roughly two-thirds of them are children.

Publicly acknowledging rare diseases, and renewing the public health care system has been a long time coming.

Under Harper’s Conservative government, a statement released by the BC Health Coalition stated it “refused to negotiate a new accord with the provinces an introduced major funding cuts.”

Edith MacHattie, BC Health Coalition chair, said they feel encouraged by Trudeau’s Liberal government’s commitment to improving health “and support the provinces’ position that the federal government’s share of health funding needs to be restored to at least 25 per cent.”

Other talks on Wednesday included mental health and substance use, physician assisted dying, access to primary care, and aboriginal health.

 

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