Ottawa woman fights for coverage of $700K drug

An Ottawa woman with a deadly rare blood disease is hopeful a new medication will save her life but the prohibitive $700,000-a-year price tag — and lack of provincial coverage — is keeping her from trying it.

Ontario only funds drug coverage on a case-by-case basis

Marie Eve Chainey has to undergo dialysis six days a week to treat AHUS. (CBC)

An Ottawa woman with a deadly rare blood disease is hopeful a new medication will save her life but the prohibitive $700,000-a-year price tag — and lack of provincial coverage — is keeping her from trying it.

Marie-Eve Chainey, 32, has to undergo dialysis six days a week just to stay alive, limiting her ability to travel and work as a nurse.

"I definitely feel a little bit stuck in my own body," she said.

Chainey's kidneys stopped working 14 years ago due to severe blood clots caused by the rare disease, Atypical hemolytic-uremic syndrome (AHUS), which affects less than 100 people in Canada.

"It attacked both of my kidneys. My second relapse also attacked my left eye, so I couldn't see (out of it) for a few months," Chainey said. "It can attack any blood vessels, basically. This year, I just found out I had a stroke — a mini stroke."

AHUS causes the body to attack and destroy red blood cells, causing anemia, organ failure and, ultimately, death.

Patients also bear the brunt of the ongoing negotiations between the pharmaceutical company that developed the drug and provinces that find it too expensive to cover.

Soliris stops progression

Soliris can stop the progression of AHUS and allow those suffering, like Chainey, regain a normal life.

It was approved by Health Canada in 2013 but, for now, no province automatically covers it for patients with AHUS.

Soliris costs an average of $500,000 a year per patient — and must be taken for the foreseeable future — but in Chainey's case, the cost is about $700,000 a year because she would need the maximum dose for adults.

The cost of the drug is at the heart of a tussle between Canadian provinces, that have demanded lower prices, and the U.S. manufacturer, Alexion, which has refused to budge.

In February, Ontario began covering Soliris for some AHUS patients on a case-by-case basis. So far, the province has agreed to cover 10 patients for the drug out of 23 that applied.

The remaining applications were either rejected, delayed pending additional information or put on hold pending negotiations with the U.S. manufacturer.

Chainey did not meet the current provincial criteria for coverage of the drug.

​"What do I do? Am I mad at the government for not covering it? Am I mad at the company for asking $700,000 a year? I don't know," she said. "There's not one easy answer."

An Ottawa woman with a deadly rare blood disease is hopeful a new medication will save her life but the prohibitive cost and lack of provincial coverage is keeping her from trying it. 0:37

'Scarce health care dollars'

Ontario is leading negotiations with Alexion on behalf of the provinces in an effort to reach a deal with the company.

Eric Hoskins, Ontario's Minister of Health, is negotiating with Alexion to lower the price of the drug. (CBC)
The Ontario Minister of Health, Dr. Eric Hoskins, spoke with Radio-Canada in an exclusive interview.

"Ontarians expect us, when we look at any new drug, that we look at it in terms of its efficacy or proof that it works, first, for the patients," Hoskins said.

"But they also want a return on investment, they want to know that it's cost effective, that it's an appropriate and wise use of our scarce health care dollars."

The Canadian director of Alexion, John Haslam, told Radio-Canada that the responsibility to cover the medication for Chainey falls on Ontario.

"It really is the responsibility of the provinces now, almost two and a half years later, for them to make the decision to fund this product for their patients," said Haslam. "In the interim, we have supported patients compassionately."

Alexion had revenues of $2.2 billion last year and its CEO earned $20 million.  There is no discussion of lowering the price of Soliris.

"It is a cost that when you first see it, yes it looks higher," said Haslam. "But when you talk about drugs for rare disease, there are so few of them."

Haslam said the total costs remain reasonable for the provinces.

Both Ontario and Alexion argue that the priority for them is the health of patients. But for now, neither one is ready to finance Soliris for Chainey and other patients like her.

Meanwhile, Chainey said her headaches are getting worse and her "biggest fear" is that she'll have another stroke.

Chainey said Soliris could also make her eligible for a kidney transplant. For now, the high risk of blood clots destroying a new kidney keeps her ineligible, she said.

"Many have died of this illness in recent years. Are we just waiting for more to die?" she said. "It's just a situation that there's no way out until I have this medication."

With files from Brigitte Bureau