The Current

'It's been a roller-coaster': Patient questions $750K price tag for life-changing drug

An Ottawa woman fighting for access to her life-changing drug has thrown the excessive price of pharmaceutical drugs into the spotlight.
Marie-Eve Chainey has been on dialysis six days a week for 15 years for her atypical hemolytic uremic syndrome (aHUS), a rare condition that leads her kidneys to fail. (CBC)

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For Marie-Eve Chainey, the drug Soliris has been life-changing.

Chainey has atypical hemolytic uremic syndrome (aHUS), a rare condition that causes blood clots throughout her body and lead her kidneys to fail.

She has been on dialysis six days a week for 15 years. Now, Soliris is keeping her illness under control, allowing Chainey to finally qualify for a kidney transplant.

But the drug costs $750,000 a year for her condition. And Chainey expects she'll need to be on it for the rest of her life.

The government covers her costs, but Chainey must reapply to qualify for coverage every six months.

It's very hard for me to see how they can justify $750,000 a year.- Marie-Eve Chainey

"It's been years to try to qualify," Chainey tells The Current's Anna Maria Tremonti.

"It's been a roller-coaster emotionally and just physically as well."

She questions the price set for Soliris by the drug company that makes it, Alexion Pharmaceuticals.

"It's very hard for me to see how they can justify $750,000 a year," says Chainey.

Related: Ottawa woman fights for coverage of $700K drug

Are drug companies charging too much?

The Patented Medicine Prices Review Board (PMPRB), an independent quasi-judicial body that aims to protect the interests of consumers by ensuring the prices of patented medicines sold in Canada are not excessive, is looking into the price for Soliris.

The hearing panel will issue its decision at a later date.

If the board rules against Alexion, the company will have to pay back any excess revenue and issue a price adjustment.

The Patented Medicine Prices Review Board is looking into the price for Soliris. (CBC)

But John Haslam, general manager of Alexion Canada, says his company followed the PMPRB rules in setting the price.

"[Soliris] was designated a 'breakthrough product' and the price was set according to those regulatory requirements and guidelines," Haslam says.

"It was approved and accepted and the price has never changed over the last eight years."

Related: How pharmaceutical company Alexion set the price of the world's most expensive drug

Haslam argues that producing the drug took 15 years of work and cost Alexion over a billion dollars to bring to market — but that even these costs aren't the total that set the price of the drug.

"It's not a one-to-one ratio of the cost versus the price that is paid," explains Haslam.

"There are many other factors that go into setting the price of the drug."

Costs behind drug prices

However, Sachdev Sidhu, a professor of molecular genetics at the University of Toronto, argues that drug companies should be legally obliged to disclose exactly what costs are behind the prices for their drugs.

Related: Blood disorder patient pushes for drug funding

Sidhu says the cost of the goods needed to produce a drug like Soliris would be only a few hundred dollars — so there should be clarity about what else is being factored in.

"A major problem in this field has been preferential pricing [for orphan drugs], which actually does make sense if it's a small market, but critically without corresponding transparency," Sidhu tells Anna Maria Tremonti.

"I mean normally when you grant special rights, you should be granting special responsibilities," he says.

"And I think in this case, that's not happening."


An earlier version of this story indicated that the PMPRB "decided in a public review that Alexion was charging too much for Soliris" and it "ordered the company to pay back any excess revenue earned over the past few years."

This is incorrect. A decision will be made at a later date. We apologize for the error. 

Listen to the full segment at the top of this web post.

This segment was produced by The Current's Samira Mohyeddin and Catherine Kalbfleisch.