Shantee Anaquod, a 23-year-old battling a rare disease, has been approved to receive coverage for Soliris, a $750,000 drug that, until this week, was not covered in B.C.
Health Minister Adrian Dix announced today that Soliris will now be approved on a case-by-case basis in B.C.
B.C. changed its policy after the 23-year-old’s case garnered national attention.
Anaquod, a UBC student, was diagnosed with atypical hemolytic uremic syndrome (aHUS) last month — and was shocked to find that the medication that could save her, though approved by Health Canada, was not covered in B.C. even in exceptional circumstances.
Her mother, Jennifer Anaquod, launched a social media campaign called “Fight For Shantee,” which inspired thousands of social media posts and triggered widespread conversations about the plight of rare disease patients in Canada.
Jennifer after knowing about the approval said, “It was as though a huge load of bricks was lifted off my shoulders. “I think this is the first real breath I’ve taken since this started.”
“It’s amazing, there are really no words to explain. I’m ecstatic that she has a possibility at a life again.”
Shantee is approved for coverage for six months, after which she’ll need to apply to extend the coverage. She’ll be required to go off the medication after a year to see whether it’s still needed.
She’s now hoping to resume her courses at UBC in January, if she’s well enough.
Dix said the province decided to change the policy after reviewing decisions made in Alberta, Manitoba and Ontario, where coverage is provided in exceptional cases. The province also reviewed coverage in the U.K. and in Australia.
The ministry is now urging the manufacturer, Alexion Pharmaceuticals, to lower the price of the drug.The company charges Canadians 21-per-cent more than it does patients in the U.K.