UBC student finds province won't fund medicine for her rare blood disorder
Megan Devlin, CTV Vancouver
Published Saturday, November 11, 2017 7:45PM PST
Last Updated Tuesday, November 14, 2017 9:05AM PST
Until this Thanksgiving, Shantee Anaquod was a healthy 23-year-old.
She was studying anthropology and archeology at the University of British Columbia and looking forward to a career of archeological digs.
Then in October she caught what she thought was the stomach flu. When went to the hospital, doctors told her to take some Gravol and wait. But it didn't get better.
When she started to feel dizzy and couldn't see properly, she went back for a second time.
"They tried to take my blood and it wasn't coming out properly because I didn't have enough blood in my body," Shantee said.
After looking more closely, doctors told her she had a rare autoimmune disorder called atypical hemolytic uremic syndrome. It causes thousands of tiny clots to form in the blood.
"They told me my kidneys were failing… and they had to give me a blood transfusion," Shantee said.
She's been in the hospital for the past month because she needs to undergo plasma exchange every day and dialysis every other day to filter the clots out.
What Shantee really needs is a drug called Soliris—her family says it's the only drug of its kind approved in Canada to treat the condition. But the cost is prohibitive at $750,000 per year and neither the province nor Shantee's health plan will pay for it.
"It's the only thing that could possibly save her life and we're not going to get access to it," Jennifer Anaquod, Shantee's mother, said.
Now, Shantee's family has started fundraising to get her the drug.
Many drugs are funded while patients are in hospital like Shantee, but Soliris isn't one of them.
The B.C. Ministry of Health said in a statement that independent experts have recommended that public drug plans not cover Soliris "due to unclear clinical benefit and high treatment costs set by the manufacturer Alexion."
But while Shantee goes without Soliris, she risks a buildup of blood clots that could cause an aneurysm or a stroke.
"It really sucks knowing that there's something out there that can make you better and they don't want to give it to you," she said.
With a report from CTV Vancouver's Michele Brunoro