$750K drug that could save UBC student now covered on a case-by-case basis in B.C.
Soliris will now go to an expert Expensive Drugs for Rare Disease advisory committee
The province says Soliris — a drug that could save a 23-year-old B.C. woman — will now go to an expert Expensive Drugs for Rare Disease advisory committee.
That means the drug, which is not covered in B.C. and costs $750,000 per year, could now be covered in specific cases.
The case of Shantee Anaquod prompted debate around the expensive drug. Anaquod, a UBC student, has been fighting for her life since she was diagnosed with atypical hemolytic uremic syndrome (aHUS) in October.
Shantee's mother, Jennifer Anaquod, has been lobbying the province ever since then to find a solution to save her daughter.
Health Minister Adrian Dix, who is also Shantee's MLA, made the announcement at a media conference Monday afternoon.
Dix said the province came to the decision after reviewing coverage decisions made in Alberta, Manitoba and Ontario, where coverage is provided in exceptional cases. The province also reviewed coverage decisions made in the UK and in Australia.
The ministry is also urging the manufacturer, Alexion Pharmaceuticals, to lower the "outrageous" price, Dix said, adding the company charges Canadians 21 per cent more than it does patients in the UK.
In September, Canada's drug price watchdog ordered Alexion Pharmaceuticals to lower the price of Soliris. The company, which has reported cumulative revenues of $14.2 billion off the drug since 2010, is appealing that decision.
Dix said B.C. is now applying to be an intervenor on that appeal.
"We will continue to take action to protect rare disease patients and public funders from exorbitant drug costs," he said.
In 2013, 2015, and 2016, the Ministry of Health determined it would not cover Soliris even in exceptional circumstances.
Soliris will still not be listed as a drug available under PharmaCare, but is on a list of "reviewable drugs" for the expert committee.
"I feel that we have made the right decision for British Columbia," Dix said.
Anaquod family not informed
Citing patient confidentiality, Dix would not comment on whether the decision will affect Anaquod's case, which has galvanized the public and drawn hundreds of messages of support on social media.
He said he had been in touch with Shantee's care team, but Jennifer Anaquod said she was not informed that the press conference was taking place — let alone invited.
"We have not heard from them at all," she said, despite the fact that Premier John Horgan said in a previous press conference that the province was working closely with the family.
"It's disappointing that you're making a large announcement about my child's life and you wouldn't think it was important that I know before the press," she said.
<a href="https://twitter.com/adriandix?ref_src=twsrc%5Etfw">@adriandix</a> Soliris works! It worked for my wife and it can also save Shantee Anaquod! <a href="https://twitter.com/hashtag/fightforshantee?src=hash&ref_src=twsrc%5Etfw">#fightforshantee</a> <a href="https://t.co/TmFNVXhuK6">pic.twitter.com/TmFNVXhuK6</a>—@jaggerbeastmode
Jennifer said she has not yet heard from her daughter's doctor on whether she qualifies.
For B.C. patients to receive Soliris, they need to have experienced significant organ damage and must have had an inadequate response to plasmapheresis, the treatment that is currently covered.
"[Shantee] is upset that people are talking about it and nobody's even mentioned the chance of her getting it," she said.
Anaquod said that, despite the lack of communication from the province, she is pleased with the decision — especially since the initial response from the province was a firm no.
"We didn't have any hope before and this gives us something."