Characterized by a progressive decline in lung function, IPF is a fatal, fibrotic lung disease. It causes scarring of the lungs, leaving patients with constant chest pain and shortness of breath. And while numerous lung cancer drugs are accessible to Ontarians, the only drug for IPF is out of reach.

Damaging Decision

Esbriet (pirfenidone) was approved by Health Canada in October 2012. Yet, the Ontario Ministry of Health’s Committee to Evaluate Drugs (CED) decided to follow the flawed guidance of the Common Drug Review (CDR) and decline public funding of Esbriet claiming ‘there was insufficient evidence to determine if pirfenidone provides clinical benefit.’

The fact that Esbriet is publicly funded by 13 European countries makes Ontario’s decision difficult to comprehend; especially because Ontario’s CED studied the same clinical evidence as those countries. Why is a drug that has been proven safe and effective in Canada, not publicly funded in Ontario?

The baffling decision by the Ontario Ministry of Health’s CED has left two Ontarians suffering with IPF with two completely different stories to tell.

Contrasting Tales

Retired Ontario farmer, Hugh Detzler, is — for now — able to afford the $45,000 a year that Esbriet costs. The drug gives the 64-year-old some hope that he can continue to enjoy his current quality of life.

“A year and half ago I was not doing well, my lung function had gone down as low as 49 percent,” says Detzler.

Esbriet has turned Detzler’s life around. “After a couple of months on Esbriet I was back up to nearly 65 percent lung function,” he says. “This drug has really changed things for me.”

The situation for Larkell Bradley is different. The 67-year-old North York grandmother is in no position to pay for Esbriet out of pocket and, as current policy stands, she’s unlikely to get access to it anytime soon.

“I was always a very high-energy person and now if I do one little thing I need to go and rest to catch my breath,” she says.

Boiling Frustrations

The options are limited for Bradley. A lung transplant is the only viable alternative, but it’s risky; and a lot of sufferers are not strong enough to endure the highly invasive procedure.

“The most frustrating thing is that this government couldn’t care less,” she says. 

Founder and president of the Canadian Pulmonary Fibrosis Foundation (CPFF), Robert Davidson finds it hard to mask his rage. “When we heard that this drug had been approved for use in Canada, there was a huge amount of hope in the IPF community,” he says. “But that hope has been taken away and patients are devastated.”

But no one can illustrate the distress that this decision is causing more than Bradley, “I’m going to die and that doesn’t have to happen, at least not this soon,” she says. “This will probably be my last Christmas with my family and it shouldn’t be, it doesn’t have to be.”

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