Sask. agrees to $40M rare drug plan with Ottawa to improve access, screening

The Saskatchewan government has agreed to a $40 million deal with Ottawa to improve access to medication for rare diseases.

The federal government is also looking for the province's participation in a national plan to improve screening and diagnostics for rare diseases.

Saskatchewan Health Minister Jeremy Cockrill spoke alongside his federal counterpart at the Jim Pattison Children's Hospital in Saskatoon on Friday. He said the bilateral agreement between the two will "enhance" coverage for two drugs to treat rare lymphoma cancers and another for a rare genetic kidney disease.

The drugs included in the agreement are:

• Poteligeo, for the treatment of mycosis fungoides or Sézary syndrome.
• Oxlumo, for the treatment of hyperoxaluria type 1.
• Epkinly, for relapsed or refractory diffuse large B-cell lymphoma.

The Saskatchewan publicly-funded health plan already provides coverage for these drugs, Cockrill said, but the agreement aids that funding.

"I think what this agreement does is it opens up the opportunities to have more discussions, again, with the federal government on expanding what drugs are available to residents," he said.

Cockrill said these diseases affect a small number of people in the province, but did not provide the number of people the funding will aid, citing privacy reasons.

"Whether it's one patient or 100 patients, when we are able, again working with the federal government, to provide coverage that eases the burden of cost on that family," he said.

According to Mark Holland, the federal minister of health, about one in 12 people are expected to contract a rare disease.

Holland said it's hard enough navigating the health-care system and understanding the diagnosis, without having to consider the costs.

"How are we going to pay for the lifesaving medication that's going to keep the people that we love alive?" he said.

The agreement, he said, is important "in that journey of making sure that people can afford the medication they need."

Holland says Saskatchewan is the fourth province to sign an agreement under the National Strategy for Drugs for Rare Diseases, following British Columbia, Newfoundland and Labrador and Alberta.

When asked about unfinished rare disease and pharmacare bilateral agreements with some provinces, and whether he could finish the agreements before an election and a potential government changeover, Holland said he is "very hopeful" he can get them all done.

Holland questioned why people would force an early election for the chance to win more seats in the House of Commons when there is more work to be done, including finalizing the health-care plans.

"Shouldn't we use the time we're given as parliamentarians to get things done?" he said.

"And I can tell you, if I am given to October, I'll get all the pharmacare deals done, I believe that."