As Jennifer Anaquod watches her daughter’s health hang in the balance, the provincial government is looking into whether it should fund a drug that could potentially save Shantee Anaquod’s life.
Twenty-three-year-old Shantee 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.
“There are times I have to leave the room because I don’t want her to see me cry,” Jennifer said Tuesday.
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A costly drug named Soliris can treat the rare condition and has been approved by Health Canada.
The drug is currently covered in Alberta, Ontario and Quebec.
B.C. doesn’t cover it because it’s not recommended by the Common Drug Review (CDR) and the B.C. Drug Benefit Council.
In 2013, the CDR recommended that the costly drug not be listed, saying the clinical evidence was insufficient.
Health Minister Adrian Dix said Tuesday that it is “reasonable for us to both review the original decisions because this is a very, very harmful syndrome.”
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Many governments see the CDR as the gold standard, but when there’s political will there seems to be a way.
In 2015, the Ontario government went to the CDR looking for advice on possible exceptions for funding to cover Soliris for a smaller group of aHUS patients that met specific criteria based on models in Australia and the U.K.
The CDR brought in three clinical experts.
While it did not reverse its decision, it stated:
“These criteria should allow for aHUS patients with the greatest unmet medical need to be treated.”
After meeting with the health minister, Jennifer said she was not hopeful about the review and is left wondering what led the drug to be funded in Ontario but not in B.C.
“It wasn’t positive,” Jennifer said. “It’s still really troubling.
— With files from Jesse Ferreras