After her story was widely covered by Canadian media, University of British Columbia student Shantée Anaquod—who was diagnosed with a rare, life-threatening autoimmune disease earlier this month— will have her treatment costs covered by the province.
The yearly cost of Soliris, a drug needed to treat Anaquod’s disease, is $750,000. While the province does not normally cover the cost, British Columbia’s Minister of Health Adrian Dix announced on Nov. 21, that the province will now cover the cost on a case-by-case basis.
The 23-year-old anthropology student was diagnosed with Atypical Hemolytic Uremic Syndrome (aHUS), according to her mother, Jennifer Anaquod.
According to the aHUS Foundation website, a non-profit which helps children and families affected by the disease, aHUS is not caused by an external agent such as a bacteria or virus. While the syndrome is not well understood according to the website, it has been identified as a genetic problem due to an irregularity in several suspect genes or appears, “out of nowhere.”
The disease is “ultra-rare” as it occurs in about one in one million births, and can occur at any age and can present with a wide range of severity. Some patients may experience one episode or “attack,” while others have regular episodes that can become quite severe, according to aHUS Canada’s website.
According to the website, when the immune system is faced with a foreign invader, a protein called a regulator protects healthy blood cells, but in a person with aHUS, the regulator is defective and attacks healthy blood cells leading to clotting in parts of the body and can lead to organ failure.
Some of the symptoms include nausea and vomiting, confusion, shortness of breath, fatigue, anemia, and kidney problems.
While there’s no cure for aHUS, there’s treatments such as Soliris, which Ontario, Quebec, Alberta, and Saskatchewan currently provide coverage for.
Despite the hefty price of the drug, Jennifer said the family remained hopeful.
“We started a GoFundMe first just to cover her expenses,” she said. “Being a student, she was working part-time just to cover things, she was really worried about that.”
Jennifer said she was contacted by a mother from a different country who has a family member that suffers from aHUS as well.
As of publication, Anaquod’s GoFundMe page has raised about $38,000 of its $100,000 goal. According to the post, it will cost around $93,000 to cover the cost of three Soliris treatments.
Her mother extended her gratitude to Canadians in support of her daughter.
“I’ve never been so proud of Canada,” Jennifer said.
She said she keeps Shantée’s supporters up to date by posting frequent updates on the Fight for Shantée Facebook page.
According to her mother, Shantée continues to undergo dialysis treatments every two days and receives a daily plasma exchange.
“She’s really sick still, she really struggles to complete the dialysis treatment now, it’s very hard on her body.” Jennifer said. “She’s struggling with breathing—really she’s just fighting to hang on.”
One of her Facebook posts read, “As I sat beside Shantée in dialysis today I just couldn’t believe that this is real life. I can’t believe that media coverage and million dollar medications are the focus of our lives . . . ”
