A B.C. woman is raising awareness about a life-changing drug that is helping treat her multiple sclerosis, but it is not covered by the provincial government. She fears her quality of life will be obliterated.
“I need glasses now,” 40-year-old Cassandra Nieman said. “I never needed them before. And yeah, that’s kind of how it started.”
Nieman started to lose her vision nearly a decade ago and was eventually diagnosed with MS.
“I was a working mom,” she said. “We were out all the time. We were doing things all the time.”
However, when she started to lose her vision, that all changed.
“I was home 24-7,” she said.
“If I was going out, even now, it’s short trips. (I) try to plan, because I know my eyes, they can’t handle the movement. They can’t the brightness… even going to the movies with my kids, I can’t do that anymore.”
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Nieman was prescribed the drug Ocrevus, which not only greatly improved her vision but also kept other symptoms at bay.
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The drug has been covered by her husband’s insurance but that is changing soon and Nieman is worried she will be forced to pay out-of-pocket, at a cost of $20,000 a year.
Nieman said she is “terrified” to be without the drug as it is life-changing for her.
“I didn’t have to go for the heavy-duty IVs anymore,” she said. “By 2022, I didn’t need steroids anymore. I haven’t needed them since. And my MRIs have remained stable. They haven’t gotten worse.”
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The provincial government does not pay for Ocrevus and while it does cover a generic version, that one has greater side effects.
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“The only reason to go to biosimilars is the cost,” Dr. Mark Freedman with the Ottawa Hospital Research Institute told Global News.
“The cost is substantially less if you go to Rituximab. Someone’s not thinking outside the envelope. They’re looking at the simple cost of the drug.”
Global News reached out to the Ministry of Health to ask why B.C. is the only province not to cover Ocrevus and if there was a possibility this could change, but did not receive a reply by the deadline.
Neiman received her last dose of Ocrevus last week.
“When we look at how well it has done things for me and my family, where I can actually go and do things now, I’m not always, you know, in pain,” she said.
“I’ve been able to at least go and do things with my family now and go camping. We can go and do things and not have to be worried that I have to be close to somewhere where I’m going to be able to get help if I need it.”
-with files from Kim Magi
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