B.C. government to cover expensive drug for woman with rare disorder

A young woman whose only hope for recovery rested on a drug that costs more than $700,000 a year will get her medication covered by the provincial government after all.

University of B.C. student Shantee Anaquod, 23, had been in poor health in hospital for weeks fighting the rare condition of atypical hemolytic uremic syndrome (aHUS) and trying to convince the government to pay for the lifesaving drug Soliris.

On Tuesday, Shantee’s mother Jennifer Anaquod said her daughter’s doctor informed the family that the province would pay for the drug and it would arrive today to be immediately administered.

“It’s amazing,” said Jennifer Anaquod, who had been fundraising and appealing to the province since last month to help pay for the medicine. “She’s started talking about things in the future now. She’s hung on to living day by day, never looking at tomorrow through the whole thing.”

The B.C. government has not previously covered Soliris, due to its high price and lack of evidence. However, Health Minister Adrian Dix announced a review of that policy, following Anaquod’s story. Soliris is covered in Alberta, Saskatchewan, Ontario and Quebec.

On Monday, Dix announced coverage for Soliris would be included for consideration by a special review panel that handles drug coverage in extraordinary circumstances on a case-by-case basis. Patients would need to have a confirmed diagnosis of aHUS, evidence of organ damage and have unsuccessfully tried the currently funded plasmapheresis treatment.

Shantee will have to undergo a review of her case in six months, and come off Soliris after a year to see how she is doing, said her mother. She has also signed paperwork to agree to a care plan and stay in contact with her doctors.

Soliris is one of the most expensive drugs in the world, and parent company Alexion has faced allegations of excessive price gouging as well as federal orders in Canada to cut its costs. Alexion has not responded to a request for comment.

Dix said Monday that B.C. would continue to fight against the “outrageous” cost of the drug, because even covering the two to four estimated cases per year that will be eligible under the new criteria will cost millions of dollars and affect the provincial Pharmacare budget.