British Columbia

UBC student fights for her life after being diagnosed with rare disease not covered in B.C.

Shantee Anaquo, 23, is battling atypical hemolytic uremic syndrome. The treatment costs $750,000 per year and is not covered in B.C.

Medication that could save the student costs $750,000 per year

Shantee Anaquod was diagnosed with a rare disease that affects fewer than 150 Canadians. "Is sister going to die?" her 8-year-old brother has asked her mother. (Jennifer Anaquod)

Days before Thanksgiving last month, 23-year-old Shantee Anaquod was focused on her UBC courses, enjoying her part-time job at an eyelash salon, and hoping to go on an archeological dig next summer.

Instead, she's now fighting for her life, battling atypical hemolytic uremic syndrome (aHUS) — a rare condition that affects only one in a million people and fewer than 150 Canadians.

AHUS causes the body to build a protein that attacks the body's healthy cells.

A medication called Soliris could save her — but it costs $750,000 per year, and is not covered in B.C.

Her mother, Jennifer Anaquod, said her daughter first thought she had the flu. When she went to the hospital, she was sent home with Gravol.

Then, things took a turn for the worse.

"She woke up Sunday night and she knew that if she didn't get to the hospital, she would die," Jennifer Anaquod said.

Shantee says her daughter usually has a few good hours a day where she can sit up and chat. But she's given such a high dose of Benadryl when undergoing her plasma exchange that it usually knocks her out. (Jennifer Anaquod)

After being diagnosed, Shantee was transferred to Vancouver General Hospital to begin a plasma exchange. The treatment removes damaged plasma from the blood, replacing it with healthy donor plasma.

She now gets that plasma exchange done daily. 

Jennifer said when the doctors told her the cost of the medication that could save her daughter, she went into shock.

"He said, it's $750,000 per year and it's not covered by the government. My heart just stopped, the world just stood still for a minute," she said.

"Shantee couldn't even look at me."

Shantee's kidneys have now shut down, and she's on dialysis. One night, her blood pressure was so high her doctor feared she might have a heart attack. She is now fighting an infection in her lungs that might be pneumonia.

Jennifer said her daughter has some good days where she is able sit up and chat and have a cup of tea. But she's put on such a high dose of Benadryl when she does her daily plasma exchange that it usually knocks her out.

This week, Shantee was forced to withdraw from UBC. Jennifer said the thought of returning to university had been her daughter's lifeline. 

Shantee's mother Jennifer described her daughter as "passionate and determined." She had hoped to go on an archeological dig next summer as part of her UBC coursework, but has now been forced to withdraw from school. (Jennifer Anaquod)

Other provinces cover treatment

According to aHUS Canada, a non-profit that supports families affected by the rare disease, aHUS can be treated with Soliris — a medication that is fully covered in Ontario, and partially in some other provinces. 

Jennifer has been working with the group to reach out to the province and various pharmacological companies in the hopes that the treatment can be covered for her daughter.

"As of now we've been told a firm no," she said, adding that her daughter happens to be a constituent of B.C. Health Minister Adrian Dix.

In a written statement, the ministry said B.C.'s drug review process relies on findings made by independent experts from the national Common Drug Review and B.C.'s Drug Benefit Council.

"These arms' length bodies have recommended that public drug plans do not cover Soliris for aHUS due to unclear clinical benefit and high treatment costs set by the manufacturer, Alexion," the ministry said.

'Terrified when my phone rings'

The response is of little consolation to Jennifer Anaquod.

"I'm terrified when my phone rings now that it's the hospital calling to tell me that something's happened," she said.

"I live in a constant state of fear every time I leave the hospital that that's the last time I'm going to see her."

Jennifer said she's now looking into the possibility of moving her family to a province where the medication is covered. 

In the meantime, she's started a Facebook and a crowdfunding page to raise money.

"[I'm asking] just to help us fight for her life. She's our sunshine and we really don't know what life would be like without her."