Montrealers with a rare blood disease are blaming the federal government for keeping life-saving treatments out of their hands.
The patients say new drug regulations set to come into effect in January are scaring pharmaceutical companies away.
Twenty-four-year-old Audrey Lagacé from Brossard is a burgeoning singer/songwriter when she’s not working as a nurse, but when she was 13, she was told she might not even live to see her mid-20s.
“I knew that there was something wrong and that it was probably going to be serious, because they took my parents outside of the room to tell them about it,” she recounted to Global News.
Lagacé was diagnosed with a rare and deadly blood disease called paroxysmal nocturnal hemoglobinuria (PNH).
“Basically, your red blood cells are missing a protective gene. As a result, your immune system destroys the red blood cells,” explained Barry Katsof, president of the Canadian Association of PNH Patients and a PNH patient himself.
Without treatment, Lagacé may have only lived five years past her diagnosis, but there are drugs that help. After a battle to have it covered by health insurance, Soliris from Boston-based pharma company Alexion helped keep her alive.
“It’s a really, really expensive medication. I believe it’s $500,000 a year,” Lagacé said.
Soliris does not work for everyone, however, and there are more efficient options like Alexion’s Ultomiris. Ultomiris is available in the US and Europe, but not in Canada.
Alexion tells Global News though the drug was approved by Health Canada, the company decided to not to bring the drug to Canadians because of new pricing regulations.
“Like many companies, Alexion is working to determine if there is an available path for commercialization in Canada due to PMPRB changes” said Megan Goulart, a spokesperson for the company.
“The pricing regulations are just going to be such that it’s not going to be able to make a profit margin,” said Katsof.
In January, Canada’s Patented Medicine Prices Review Board (PMPRB) is bringing in new rules. Health Canada told Global News that Canadians pay some of the highest drug prices in the world, which hurts peoples’ ability to access medicines.
Health Canada said the PMPRB is getting new tools to protect Canadians from excessive prices of patented medicines.
“Less than 75 per cent of existing patented drugs will have to lower their prices as a result of these changes, and only by an average of five per cent,” explained PMPRB spokesperson Jeff Wright.
“The government is strictly focused on price. They’re not focused at all on patients,” said Katsof.
Earlier this year, Global News reported how drug company Vertex was hesitating to bring its miracle cystic fibrosis drug Trikafta to Canada, also due to the new guidelines.
Katsof wants the new regulations to be put on hold, and has been encouraging PNH patients, including Lagacé, to write letters to the federal government.
“They’re putting a price on a patient’s life,” he said.
“It’s just really frustrating, because I feel like those people don’t take into account that what they’re dealing with isn’t medications and money, but it’s people’s lives,” Lagacé said.
So far, Canada is not backing down.
The PMPRB spokesperson pointed out how Alexion earned almost $6 billion USD last year.
“It is difficult to understand why a pharmaceutical company would only be willing to bring its drug to Canada on the condition that we continue to pay among the highest prices in the world,” Wright said.