Province, feds sign $40M deal to improve access to drugs for rare diseases

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A bilateral agreement will help improve access to drugs to treat rare diseases for Saskatchewan residents, the provincial and federal health ministers are touting.

On Friday at Jim Pattison Children’s Hospital in Saskatoon, federal Health Minister Mark Holland and provincial Health Minister Jeremy Cockrill announced more than $40 million going toward improving access to selected new drugs for rare diseases and to support access to existing drugs, early diagnosis and screening.

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“This agreement is another step toward building a stronger public health system for the people of Saskatchewan,” Holland said.

According to the federal and provincial governments, the first stage of funding will go toward three specific drugs under the National Strategy for Drugs for Rare Diseases: Poteligeo, for the treatment of mycosis fungoides or Sézary syndrome; Oxlumo, for the treatment of hyperoxaluria type 1; and Epkinly, for relapsed or refractory diffuse large B-cell lymphoma.

“By investing in drugs for rare diseases, this agreement will improve affordability and access to medications, early diagnosis, and screening, so that people in Saskatchewan with rare diseases have the best health outcomes possible,” Holland said.

According to the federal government, one in 12 people in the country live with a rare disease for which the cost of treatment is unaffordable.

Cockrill said the partnership will “benefit Saskatchewan residents and communities across the province.

“Through this bilateral funding agreement we are signing today, we are building on our existing efforts to enhance coverage and provide our residents and their families with even greater access to new high-cost rare drugs,” he added.

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In addition to the three drugs specifically noted by the two levels of government on Friday, the names of other drugs will be published online on a case-by-case basis following the pan-Canadian Pharmaceutical Alliance price negotiations for each drug.

The governments also noted that through the agreement, Saskatchewan is committing to “work with Canada and other provinces and territories on developing and implementing a plan for improving screening and diagnostics for rare diseases.”

Almost two years ago, the Canadian government announced up to $1.5 billion over three years to supports its National Strategy for Drugs for Rare Diseases, including up to $1.4 billion for bilateral agreements with provinces and territories to help patients with rare diseases have access to treatments as early as possible. Innovative treatments for certain rare diseases can cost from between $100,000 and more than $4 million each year, the federal government said.

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