'How do you put a price on somebody's life?': Student needs $750K to treat rare disorder
Published Sunday, November 12, 2017 12:41PM EST
A B.C. student dying of a rare but treatable disorder says she’s in desperate need of financial help, because the only drug that might save her costs $750,000 a year.
Shantee Anaquod, 23, fell sick with what she thought was a stomach flu on Thanksgiving, during her first break from school at the University of British Columbia. But the situation proved to be much worse when after visiting doctors a few times, one noticed she was missing two-thirds of the blood she should have had. Anaquod was diagnosed with atypical hemolytic uremic syndrome, or aHUS – a rare, chronic and potentially deadly disorder that destroys red blood cells.
Now, Anaquod is clinging to life in an isolation unit at Vancouver General Hospital, while her family tries to raise the money needed to buy the only approved drug that can save her. That drug, called eculizumab and sold under the name Soliris, costs $750,000 per year and is not covered by the provincial health plan.
“It’s the only thing that will possibly save her life and we’re not going to get access to it,” Anaquod’s mother, Jennifer, told CTV Vancouver.
Jennifer launched a GoFundMe page to help pay for her daughter’s medication last month. The campaign has raised approximately $11,000, but is still short of its initial goal of $93,000 needed to buy three infusions of the drug.
“It really sucks knowing that there’s something out there that can make you better and they won’t give it to you,” Shantee Anaquod said on Saturday.
She added that she hopes her situation will put pressure on the provincial government to cover Soliris in the future.
“Even if I don’t get it, I want other people to get it too,” she said.
Nevertheless, the B.C. Ministry of Health says independent experts have recommended against covering the drug, “due to unclear clinical benefit and high treatment costs.”
AHUS Canada says approximately 65 per cent of patients diagnosed with the disease either die, require dialysis or suffer permanent kidney damage within the first year after diagnosis.
“There is no standard treatment, as each case is different,” the organization says.
AHUS Canada’s website also suggests Soliris is one of the most effective treatments for the disease. “Unlike historical plasma therapies, this new treatment option has potential to change the course of the disease, and for the first time offers a real opportunity for transplant in thos aHUS patients on chronic dialysis.”
Canada’s Patented Medicine Prices Review Board recently ordered the drug’s producer, Alexion Pharmaceuticals, to pay the federal government back for overcharging for the drug. However, the amount of the payment was not disclosed, and Alexion said at the time it strongly disagreed with the decision.
Jennifer says it’s extremely painful to watch her daughter face death when the solution is a money issue.
“How do you put a price on somebody’s life?” she said. “How do you decide that she’s not even worth $750,000?”
With files from CTV Vancouver