Stratford man fighting for every breath

Islanders with fatal lung disease lobby health minister to cover expensive drug

Dave Stewart
Published on December 19, 2014

Garth Matthews of Stratford, who suffers from idiopathic pulmonary fibrosis (IPF), met with Health Minister Doug Currie on Thursday to try and convince the minister to add the IPF drug Esbriet to the provincial formulary. Accompanying Matthews in the meeting was Robert Davidson, left, president of the Canadian Pulmonary Fibrosis Foundation.

©Guardian photo by Heather Taweel

Garth Matthews of Stratford gasps for breath just going to the bathroom.

He has to take multiple breaks just taking a shower.

And he’s extremely prone to the common cold.

Like so many people with idiopathic pulmonary fibrosis (IPF), daily life is a struggle for Matthews. IPF is a rare, progressive and ultimately fatal lung disease with no known cause.

Matthews is one of 25 Islanders with IPF. He was one of two IPF sufferers who paid a visit Thursday to Health Minister Doug Currie, hoping to get the IPF drug Esbriet added to the provincial pharmacare. Esbriet slows the progression of the disease in mild to moderate cases.

“It’s extremely difficult to get around. I need oxygen 24-7,’’ Matthews said following his meeting with Currie.

But he’s one of the lucky ones. Matthews has drug coverage that pays for the $45,000 cost annually. Not everyone is that fortunate.

Robert Davidson, president of the Canadian Pulmonary Fibrosis Foundation (CPFF), who also attended Thursday’s meeting with Currie, said there are between six and 10 Islanders who would benefit from being on Esbriet.

While there are 25 Islanders suffering from IPF, Davidson said Esbriet only works for mild to moderate cases.

“It’s an expensive drug, there’s no question about that, but all drugs for rare diseases are. But this drug is the only one of its kind for treating IPF so, to me, it’s not that expensive when you consider the patients and what happens to them,’’ Davidson told The Guardian.

“The death rate is higher than most cancers. Pancreatic cancer is the only one with a higher death rate so it’s a pretty evil disease.’’

According to the CPFF, seven provinces are providing public funding for Esbriet through a pan-Canadian interim agreement signed months ago.

Currie said Esbriet is on the list of drugs the province wants to add but there is a process to follow first. There is an organization that advises provinces on this kind of thing based on clinical trials, research and evidence.

“This drug, Esbriet, is going back to the drug review (process) in early February and we have to respect that process,’’ Currie said. “This is one of a number of drugs that we’ve been actively working on (adding). We’ve got a list in the queue that are not on the formulary and Esbriet is one of these medications, just like we have another round of high-cost cancer drugs in the queue.’’

Last month, the province added 10 new drugs, including Revlimid for multiple myeloma, to the formulary at a cost of $1.1 million.

Davidson said since the drug doesn’t work on severe cases of IPF, time is a factor.

“We need it sooner rather than later so patients don’t slip into the severe stage and then die.’’