‘You don’t plan for grief of this kind’: father of baby who died of aHUS speaks for first time
“I miss my son. Four weeks ago was the worst day of my life. Losing him feels like losing a limb.” Continue reading
aHUS
‘I can start with my life again’: life-saving drug approved for BC woman with rare disease
By John Hua Reporter
“It’s like you go from planning the end of your life to planning the rest of your life.” Continue reading
B.C. government approves coverage of expensive drug for student with rare disease
The medicine costs approximately $750,000 a year and can improve a patient’s condition who’s living with aHUS. Continue reading
B.C. government approves coverage of expensive drug Soliris on case-by-case basis
By Jon Azpiri Online News Producer
The drug became a hot-button issue after 23-year-old Shantee Anaquod went public with her battle to seek coverage. Continue reading
Six-week-old baby believed to be youngest person with aHUS
By Jeremy Lye
“It’s been kind of moment by moment.” Continue reading
Mississauga woman whose life was saved by expensive drug pushes B.C. to cover its costs like Ontario does
Nadia Saiphoo was planning her funeral before taking Soliris. Within a week, she was able to leave the hospital. Continue reading
B.C. health minister faces questions on why government won’t fund life-saving drug for young woman
As Jennifer Anaquod watches her daughter’s health hang in the balance, the B.C. government is looking into whether it should fund a drug that could potentially save Shantee Anaquod’s life. Continue reading
Student’s battle against rare disease renews calls for better drug coverage in B.C.
By Jon Azpiri Online News Producer
The costly drug Soliris can help treat UBC student Shantee Anaquod’s rare condition, but the province currently doesn’t cover it. Continue reading
It costs $750K per year to treat her rare disease, and B.C. doesn’t cover the cost
There are concerns that the drug is too expensive and that it has unclear benefits. Continue reading
Patient groups must say if their funding comes from pharma companies
Patient advocacy groups which get some part of their funding from pharmaceutical companies do have to disclose that information before lobbying the government. Continue reading
