UVic student pins drug hopes on price battle
With her life in the balance, a Victoria woman with cystic fibrosis is closely watching a high-stakes poker game, with a giant pharmaceutical company on one side and big government on the other.
Lilia Zaharieva, a University of Victoria student, is running out of her supply of Orkambi, a pill that aims to treat a strain of cystic fibrosis, called Double Delta F508. Zaharieva said her life has changed since she began taking the drug in 2016.
If she stops, she said her lung capacity will decline and she will be at higher risk of infection.
She learned in September that her private insurance through the UVic Students’ Society no longer covers the $250,000-a-year drug. She has called on Health Minister Adrian Dix to cover the drug under B.C.’s PharmaCare plan.
On Monday, Vertex Pharmaceuticals, which manufactures Orkambi, offered to significantly reduce the price in order to open negotiations with the pan-Canadian Pharmaceutical Alliance, the body which negotiates pharmaceutical prices on behalf of the provinces and territories. Vertex would not disclose the price it is offering.
“I’m glad that Vertex heard the urgency of what’s going here in B.C. and decided to make this step,” Zaharieva said.
The Canadian Agency for Drugs and Technologies in Health recommended the alliance fund Orkambi only if there is a reduction in price.
Christopher MacLeod, chair of the Canadian Cystic Fibrosis Treatment Council, applauded Vertex for coming to the table with a lower price and urged the alliance to negotiate.
“CF does not wait for bureaucracy,” he said. “CF patients lose considerable lung function every year that they are not treated with medication such as Orkambi.”
Cystic fibrosis is a genetic and irreversible disease that can clog the airways, making it difficult to breathe.
MacLeod has sent a letter to every health minister in Canada urging them to ask the alliance to negotiate with Vertex. Provinces can also negotiate directly with drug companies instead of through the alliance.
Dix responded to MacLeod, saying that a drug is covered under PharmaCare based on “a rigorous scientific review of its efficacy, therapeutic value and cost.”
“In three arm’s-length, independent reviews, twice at the national level, and once in B.C., Orkambi was rejected for coverage,” Dix said in an email, a copy of which was provided to the Times Colonist.
“If PharmaCare covered Orkambi, despite there being insufficient evidence of therapeutic benefit according to independent review, it would cost the public drug plan $85.5 million over three years,” Dix said in the email.
“Using public funds to pay for drugs that have been rejected for coverage by the scientific process and pay whatever price the manufacturer wishes to set would be a serious mistake and would undermine any public prescription drug plan.”
Dix said the ministry has contacted Vertex and advised it to resubmit Orkambi to Canada’s Common Drug Review board using additional clinical data.
Vertex spokeswoman Megan Goulart told the Times Colonist it is difficult to meet the board’s requirement of a double-blind study because “once you know a medicine works, it’s not ethical to do placebo-controlled trials.”
Canada is the only developed country that has not publicly funded Orkambi or is in negotiations to do so, Vertex said in a statement.
“I have thought to myself, ‘Maybe I should move to the U.S. for my health,’ ” Zaharieva said. “Otherwise I could die.”
Zaharieva asked Vertex to supply her the drugs free of charge on compassionate grounds but that request was denied. She was sent an exceptional 12-week supply of the medication that will run out by Christmas.
“I’m grateful but I’m also disappointed because I’ve asked the Health Ministry for help,” she said. “So far I’ve had help from the UVic Students’ Society, who bought me a one-month supply, from the pharmaceutical company and I’ve had people offer to give me money.”
The cystic fibrosis community is planning a rally at the B.C. legislature on Nov. 29.
“We’re feeling really left behind right now in B.C.” she said.