UBC student with rare disease first in B.C. to be approved for $750K drug Soliris
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.
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.
In a news conference late Monday, Health Minister Adrian Dix announced Soliris will now be approved on a case-by-case basis in B.C.
'There are really no words'
Jennifer, who was not informed about Monday's news conference in advance, said she learned on Tuesday that Shantee meets the criteria to receive coverage.
"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," she said.
"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.
In 2013, 2015 and 2016, the Ministry of Health determined it would not cover Soliris, even in exceptional circumstances.
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.
Soliris is still not listed as a drug available under PharmaCare, but is now a "reviewable drug" that can go before an expert Expensive Drugs for Rare Disease advisory committee.
