Inside her home in Mississauga, Nadia Saiphoo has been watching the story of Shantee Anaquod unfold over 4,000 kilometres away in Vancouver with a mixture of sadness and guilt.
Sadness, because Saiphoo was recently in Anaquod’s position: stuck in a hospital bed, suffering from the rare auto-immune disease known as aHUS, or atypical hemolytic uremic syndrome.
“It was like me lying in that bed,” Saiphoo said about seeing Anaquod in the hospital on Global BC. “I was devastated.”
The guilt is because Saiphoo was able to access the expensive drug that she says has dramatically improved her life, while Anaquod can’t.
Ontario has opened up its drug program to fund the drug eculizumab, which costs $750,000 a year, for select patients, while B.C. has refused to cover it for anyone.
For Saiphoo and her husband, that disconnect is unacceptable.
“For someone to look at you and say you’re not worth the money? I don’t agree with that at all,” Saiphoo’s husband Sayani said.
“Looking at the picture of Shantee, I see Nadia.”
‘I was planning my funeral’
Saiphoo was diagnosed with aHUS in September, which immediately beset her with kidney failure and put her into a grim routine of regular dialysis and plasma exchanges.
“I didn’t think I was going to be around for much longer,” she said. “I was planning my funeral.”
But Saiphoo’s condition made her a candidate for Ontario’s Exceptional Access program, which had recently decided to fund eculizumab, also known as Soliris, for a select group of patients on a possible ongoing basis.
Just days after taking the drug, Saiphoo was discharged from the hospital and saw her prognosis improve dramatically.
“Within a week I felt dramatically better,” she said. “I’m here now recovering. I don’t feel perfect, but I can do so much more than I could initially, and Soliris did all that.”
How Ontario got the drug covered
In 2013, the Common Drug Review (CDR) recommended against adding Soliris to funding lists, due to a lack of proven benefits and the high cost of the drug.
The CDR is considered the gold standard that provincial health ministries refer to when determining what drugs should be covered by health plans.
Two years after that ruling, the Ontario government went back and asked for advice on criteria to cover Soliris for a smaller group of aHUS patients.
After doing more research and bringing in three clinical experts, the CDR didn’t reverse its original recommendation, but it did offer Ontario some advice on how to proceed.
The CDR never rejected the province’s request, nor shut down its proposed criteria.
‘That’s not a positive recommendation’
But when Global News asked B.C. Health Minister Adrian Dix about Ontario’s request, he immediately shut down the conversation, saying that information was factually incorrect.
“To say they were positive but didn’t recommend it is incorrect,” Dix said. “Their advice in 2013 was not to list and their advice in 2015 was not to list.”
But the 2015 CDR report written after Ontario’s request made two important points.
“All three experts agreed there is a need to fund the eculizumab treatment for aHUS,” the report reads, “and based this opinion on both the clinical evidence available and the unmet medical need of aHUS patients.”
Furthermore, the three experts “endorsed the proposed criteria as a means of providing access to eculizumab for those aHUS patents most likely to benefit from treatment.”
But Dix still rejected the idea that the CDR had said anything different beyond its initial 2013 decision.
“When the recommendation is no, the recommendation is no,” the health minister said. “That’s not a positive recommendation.”
Dix did say he feels for the family and other patients suffering from the disease, but that his staff would consult with the Ontario government — along with those of Manitoba and Quebec, the other two provinces that cover Soliris — and make an informed decision based on what they find.
Wanting to do more
Back in Mississauga, Saiphoo says the B.C. government’s unwillingness to cover the drug goes against evidence of the drug’s efficacy, and rejects the idea that there’s a lack of concrete results.
“I’m speechless, I don’t know what to say about that,” she said.
“The results are me sitting here now being able to talk to you. Being in the comfort of my own home.
Saiphoo says now that she has access to the drug, all she wants to do is share it with people like Anaquod.
“I have an infusion coming up on Saturday,” she said. “If I could just give her that infusion I would gladly do it, because I know it would help.”