Imagine struggling with an illness for years, finding a medication that really improves your quality of life, only to be forced off the drug because it’s too expensive.
That’s the situation facing a Vernon woman whose telling her story publicly hoping to the province will step in to cover the drug.
However, the province said it is following the advice of experts not to cover the medication.
Melissa Verleg, 34, was diagnosed with Cystic Fibrosis as a child. It’s meant surgeries and weeks on IV antibiotics.
“Sleeping is difficult. You struggle to breathe…all day but when you lay down it’s especially hard,” she said.
“I struggle to cook, clean. I struggle to do daily life.”
Last summer she started taking a drug called Orkambi.
“Within a month, I had energy. I was not napping during the day. I was becoming active with my children again,” Verleg said.
“I am living life again.”
However, Orkambi costs over $248,000 a year.
Because of changes to the medical benefits she gets through her husband’s work, Verleg no longer has the private insurance coverage to continue receiving the medication and will have to stop taking Orkambi at the end of the month.
The mother of two said she is scared to stop taking the medication.
“It’s like a train wreck that’s coming. I know I’m going to be hit and it’s going to hurt. I’m going to be sick,” said Verleg.
“I will probably be napping most days. I won’t be able to clean my own house. I won’t be able to play with my children.”
Verleg thinks the province should step in and cover the cost for those Cystic Fibrosis patients who take the medication.
Heath Minister Adrian Dix estimates that would cost B.C. millions of dollars but he said the province’s decision not to cover Orkambi is not primarily about the money but about “efficacy.”
“It is not really fundamentally a question of costs, although that plays a role when you have such an expensive drug,” said Dix.
“It’s that the panels that we rely on to provide us advice have said the drug shouldn’t be covered. That was the decision my predecessor Terry Lake made. It’s a decision that ultimately I’m supporting.”
Indeed, one of those expert bodies, the Common Drug Review, recommended the drug not be covered saying: “there is insufficient evidence to conclude that this drug will improve Cystic Fibrosis outcomes.”
However, Vertex Pharmaceuticals, the company behind Orkambi, called the Canadian authorities’ assessments of the drug surprising and untrue.
Vertex said there is more data but it’s not from a placebo-controlled study. Which, the company said, the Common Drug Review won’t accept.
The company said Orkambi was approved by regulatory authorities based on two six-month placebo-controlled studies.
“Then after that six months, when it showed that it worked, then all patients fall into what’s called an extension study and so then they are all receiving treatment at that point,” said Megan Goulart a spokesperson for Vertex.
Vertex said further placebo-controlled studies would take time and be unethical.
The company also defends the cost of the drug saying Orkambi costs billions of dollars to develop and Vertex reinvests the majority of its revenues into research and development.
“Approximately two out of three people with Cystic Fibrosis are still waiting for a medicine to treat the underlying cause of their disease. We are committed to continuing our efforts toward our goal of treating all people with Cystic Fibrosis, but this will take many years and billions of dollars,” said Goulart in a statement.
Meanwhile, Verleg is bracing for what will happen to her family when she comes off Orkambi.
“My son made me a book the other day and it made me cry it said: ‘Mom, when you get sick I’m going to make breakfast for you.’”
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