Shantee Anaquod has gone from planning the end of her life to planning the rest of her life. After being bed-ridden for over a month with the fatal disease, atypical hemolytic uremic syndrome (aHUS), Shantee is finally receiving the long-awaited treatment she needs.
The 23-year-old UBC student is the first patient to be approved for Solaris as a publicly-funded treatment in the province.
The drug can cost up to $750,000 a year and used to be very difficult to acquire. The B.C. Health ministry announced on November 20th that it would fund the drug, which is approved by a special committee on a case-by-case basis. While we previously reported Shantee was denied coverage, her situation changed given the November 20th development, and she is now receiving treatment.
It has been a long painful journey for Shantee, one that felt like it was going nowhere. Her mother, Jennifer Anaquod, was forced to witness her daughter’s condition grow worse as her kidneys failed. Her survival was in the hands of the government. Today, the future carries hope for a normal life and Shantee is able to come home at last.
But the battle wages on for BC to lower the cost of the drug. Their health ministry is strongly opposing Alexion’s extremely expensive drug, Solaris. Alexion is the pharmaceutical company behind the drug. Some experts say that Canada’s province to province approach puts it at a disadvantage and makes it more difficult to get approval for the drug.
AHUS is a rare kidney function disorder that affects both girls and boys equally and about ten per one million Americans. It is ten times less common than the typical form of hemolytic uremic syndrome. To learn more about AHUS, click here.
At the center of the fight, Jennifer warns all patients to avoid becoming pawns to the bigger pharmaceutical game at play.
“They could’ve relived a lot of stress on our end by reaching out and working with us,” said Jennifer to the Global News.
Shantee is hopeful that the drug will improve her quality of life and she now looks forward to tomorrow, a tomorrow that was always worth fighting for.
