Federal agreement improves drug access for rare diseases in Sask.

A new investment with Ottawa is helping Saskatchewan residents diagnosed with rare diseases who face thousands in treatment costs.

On Jan. 10, Saskatchewan’s health minister Jeremy Cockrill joined Canada’s health minister Mark Holland at the Jim Pattison Children’s Hospital to sign a bilateral agreement for the National Strategy for Drugs for Rare Diseases. 

 Work between both levels of government has been ongoing for months to sign the $40 million deal. 

 The province currently provides coverage for the three drugs listed in the agreement, but Cockrill said these funds will further support investments already underway to improve care for residents with rare diseases. Additionally, he said it will help sustain Saskatchewan’s publicly funded drug plan.

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Drugs that will benefit from the enhanced coverage are Poteligeo and Epkinly used to treat extremely rare cancers, and Oxlumo for a rare inherited condition that affects the kidneys.

According to the government of Canada, coverage for Poteligeo costs $35,000 for the first treatment and $17,000 for subsequent treatments.

Treatment costs for Oxlumo can be as high as $1.7 million for the first treatment for adults, and over $500,000 for children.

The first 28-day treatment cycle for those requiring Epkinly costs $14,000, with costs differing for subsequent treatment.

“This agreement and this partnership with the federal government is important to the ongoing commitment of both the federal and provincial governments to improve access to innovative treatments, early diagnosis and screening and coverage of these high-cost drugs,” Cockrill said.

According to the Government of Canada, one in 12 Canadians will be diagnosed with a rare disease.

“It’s a spin of the roulette wheel,” Holland said. “There’s no idea whether or not it’ll be you or somebody you love that it lands on.”

Holland explained such investments add to the continued conversation surrounding publicly funded medications.

“I’m working closely to talk with provinces across the country about PharmaCare, about making sure people get the life-saving medication that they need,” he said. “Today is an important step in that.”

According to a release from Health Canada, in March 2023, a federal investment was announced of up to $1.5 billion over three years to support the National Strategy for Drugs for Rare Diseases.

The investment also includes up to $1.4 billion for bilateral agreements with provinces and territories to help patients with rare diseases have access to treatments sooner.