Student’s battle against rare disease renews calls for better drug coverage in B.C.

Click to play video: 'Province under fire for not covering life-saving medicine' Province under fire for not covering life-saving medicine
WATCH ABOVE:The NDP government is under fire for not covering a life-saving medicine for a 23- year-old woman with a rare autoimmune disease. John Hua reports – Nov 14, 2017

Editor’s note: A previous version of this story identified Bob Mellor as being a member of the Better Pharmacare Coalition. That was incorrect. The reference has been updated to “drug coverage advocate.”

There are renewed calls for the province to review the types of drugs currently covered by the B.C. health-care system.

UBC anthropology student Shantee Anaquod is battling typical hemolytic uremic syndrome (aHUS), a rare autoimmune disease that is characterized by renal failure (when the kidneys stop working), issues related to red blood cell counts and vascular troubles.

A costly drug named Soliris can treat the rare condition, but B.C. currently doesn’t cover it because it’s not recommended by the Common Drug Review and the B.C. Drug Benefit Council.

Soliris has been approved by Health Canada and is currently covered in Alberta, Ontario and Quebec.

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“It’s really frustrating because you’re told you can get better,” Anaquod told Global News.

“But you’re also told that you might die if you don’t get it, and they’re not going to give it to you.”

Bob Mellor, a drug coverage advocate who has received a double-lung transplant, says he has heard many stories of people like Anaquod who have struggled to cover the costs of expensive medicine by themselves. Some have even moved to other provinces to obtain coverage.

He says he met with Mental Health and Addictions Minister Judy Darcy about the issue back when she served as the opposition health critic.

He said at the time Darcy “said she would try to talk with the health minister and see what they could do. Now that they’re in power, now is the chance for them to do something.”

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READ MORE: Orphan drugs: The high cost of rare diseases

Darcy says failing to fund a life-saving drug for Anaquod may be a case of being penny-wise and pound-foolish.

“You’ve got to look at the total picture,” he said. “How much is it costing in VGH for this young lady to be in there all the time now for two months, getting dialysis? What’s the cost-benefit analysis on that versus paying for the drug?”

Mellor, who also needed a costly drug to survive, understands Anaquod’s plight.

He says now is the time to put pressure on the government to fund medications that will help prolong the lives of many British Columbians.

“What’s wrong with B.C.? Why can’t they spend the money?” he said.

“What are they waiting for? What are they looking for?”‘

The Ministry of Health says it is aware of Anaquod’s case, and is deeply exploring the matter.

— With files from Jesse Ferreras, Simon Little and Jill Bennett

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