BRAUN: Canada has left Cystic Fibrosis patients in the lurch.

BRAUN: Canada has left Cystic Fibrosis patients in the lurch.


More than 18 months ago we wrote about Victoria Vigneau, a Canadian teenager with Cystic Fibrosis.

Like other Canadians with CF, Victoria knows there are drugs that will save her life — drugs she cannot get.

Orkambi, a gene-altering medication that treats CF, is available from Vertex pharmaceuticals; it is effective and it is very expensive.

Nonetheless, 18 other countries including Australia, Austria, Germany, Sweden and, recently, Wales, have decided to fund the drugs for their CF population.

Canada continues to do nothing.

“So many other countries have said yes to Orkambi,” says Victoria’s mother, Carol Vigneau. “We’re still fighting for it.”

Hopes are high that the new federal Health Minister, Patty Hajdu, will get the ball rolling on drugs such as Orkambi. A national pharmacare plan is in the works, and it can’t come soon enough for those who need drugs for rare and orphan diseases.

In Ontario, Christine Elliott has said that as the pharmacare plan is put in place for all Canadians, Ontario is looking for some specific federal solutions around such medications — many of which are extraordinarily expensive.

“The issue of rare diseases and orphan drugs is one of Minister Elliott’s top priorities as the new chair of the provincial-territorial health table,” confirms Elliott’s spokesperson, Hayley Chazan. “She looks forward to addressing her concerns and identifying possible solutions with respect to this important issue with the newly appointed federal health minister over the coming weeks and months.”

Victoria is in grade 12 now and hopes to be a nurse or a social worker when she’s an adult. Unfortunately, the frequent hospitalizations she needs because of CF cause her to fall behind in school.

“It’s been almost two years since Victoria and I started to fight for Orkambi,” Vigneau says. “We are no further ahead then we were when we started. It’s so frustrating.”

At the moment, Victoria’s health is pretty good, “Knock on wood,” says Vigneau.

“But winter is coming. We’ve already had one hospital admission in September. There’s probably another one coming up. She goes back to Sick Kids for a checkup next week.

“We never know with this, which is the worst thing.”


Cystic Fibrosis patient Victoria Vigneau is seen here in January 2018. supplied photo)

Vertex makes Symdeko, Orkambi and Kalydeco; Kalydeco is government funded in Ontario, a decision the Liberals were shamed into making a few years ago.

Without these drugs, many CF patients will die young, with numerous hospitalizations and other medical interventions along the way — at a cost to taxpayers that makes the price of Vertex’s drugs look small by comparison.

Lawyer (and CF patient) Chris MacLeod, chair of the Canadian Cystic Fibrosis Treatment Society, has said for years that Canada needs to negotiate a portfolio deal with Vertex — a deal that will set a price on all their drugs once and for all, new drugs included.

He has offered to negotiate — gratis — on behalf of the government.

But, “Canada is not even at the negotiating table,” he says.  “I assure you the drug is available at a minimum of a 50% discount. There’s a long-standing offer to the government.”

Meanwhile, as the government does nothing, Vertex has introduced a new medication called Trikafta that it is expected to treat 90% of CF patients successfully.

“Trikafta is the Holy Grail,” says McLeod, who doubts Vertex will even bring it to Canada.

“Why would they bother? They’ve been rejected three times already on Orkambi.”

McLeod worries that part of the government resistance in all this can be traced to an anti-corporate stance. Yes, Vertex drugs are hugely expensive. Yes, the company’s senior officials are paid obscene amounts of money.

“But the only people on earth making these drugs in Europe and the U.S. are multinationals. We’ve got none,” says MacLeod.

The bureaucrats, he adds, should be ashamed of themselves.

“They are health economists with great benefits packages and salaries, and they sit and pontificate about how bad the corporate people are.”

CF patients across the country need to see a deal with Vertex, and they need it quickly.

“Canada is the only country left who refuses to negotiate with the drug company,” MacLeod  says. “Nobody pays sticker price on a car. Nobody pays sticker price on these drugs.”

“What is Canada waiting for?”

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