It costs $750K per year to treat her rare disease, and B.C. doesn’t cover the cost

One month ago, UBC anthropology student Shantee Anaquod thought she had come down with the flu.

Since then however, the 23-year-old has been in hospital, after she was diagnosed with atypical hemolytic uremic syndrome (aHUS).

Coverage of autoimmune diseases on Globalnews.ca:

2:00 8-year-old Alberta girl suffers debilitating reaction to strep infection

• 8-year-old Alberta girl suffers debilitating reaction to strep infection
• Ask the Doctor: What is psoriasis?

Previous Video

Next Video

It’s a rare autoimmune disease that is characterized by renal failure (when your kidneys stop working), issues related to red blood cell counts and vascular troubles, according to the aHUS Foundation.

The condition can be treated using a drug called Soliris, which is approved by Health Canada.

But it costs $750,000 per year. And B.C. doesn’t cover it.

READ MORE: Orphan Drugs: The high cost of rare diseases

“It’s really frustrating because you’re told you can get better,” Anaquod told Global News.

“But you’re also told that you might die if you don’t get it, and they’re not going to give it to you.”

Anaquod is currently receiving plasma exchanges and kidney dialysis, but the plasma treatments aren’t working in the way that doctors hoped they would.

Soliris is covered in Alberta, Ontario and Quebec, but in B.C., the Common Drug Review and the B.C. Drug Benefits council have said the treatment has unclear benefits and is too expensive.

Therefore, it’s not covered.

“It’s like an apartment or a really fancy car or something,” Anaquod said.

“But it’s my life. It’s worth something more than an object or money.”

Tweet This Click to share quote on Twitter: "But it's my life. It's worth something more than an object or money."

A GoFundMe page has been set up to help pay for the treatment with a goal of raising $100,000.

It had raised over $11,000 as of Sunday morning.

Michael Eygenraam of aHUS Canada told Global News that, “if there’s a treatment available for somebody, and the government steps in between her and the doctor and says, we’re not going to fund it – even though the doctor says this is the right medication – I think that’s appalling. I also think it’s unethical.”

Anaquod is set to spend her second month in hospital as they hope to obtain the drug that could make her better.

“My worry is, what if we don’t have time to plan?” her mother Jennifer said.

“What if, while we’re waiting, something happens?”