Cystic fibrosis advocates hope to alert premiers to lack of affordable treatments

Advocates for the rare disease cystic fibrosis are joining forces to gain the attention of the country's premiers.

Provincial and territorial leaders are meeting in Saskatoon this week and different advocacy groups are seeing this as an opportunity to have their voices heard.

Kimberly Evans, a provincial advocate for Cystic Fibrosis Canada, has a unique way to get her message to the premiers.

Her daughter, Cassidy Evans, was diagnosed with cystic fibrosis when she was four years old. When she turned five, she started a lemonade stand to help raise money for cystic fibrosis research.

That lemonade stand eventually turned into a lemonade truck, which is now parked outside of the premiers' meeting.

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"We need a rare disease strategy in this province, as well as in the country, to move forward in helping find a cure for cystic fibrosis." Kimberly said.

Cassidy's lemonade truck has raised almost $100,000 for cystic fibrosis research.

Cystic fibrosis is a genetic disease that affects the salt and water balance in the body. This causes sticky mucus to plug up the lungs and pancreas. It is currently treated by doing hours of respiratory physiotherapy a day.

Advocates bringing up different concerns

Chris MacLeod, a spokesperson for the Canadian Cystic Fibrosis Treatment Society, said the problem lies within the federal government's refusal to negotiate drug prices.

"There's a 70 per cent discounted offer on the table from the [Orkambi] drug company right now and on Kalydeco, another drug, [the government has] been in negotiations now for seven years and [they] don't have a deal." MacLeod said.

MacLeod said that since pharmacare is on the table at the premiers' meeting, now was a good time for advocates to raise their concerns about the planned Canadian Drug Agency.

The Canadian Drug Agency is a proposed agency by the federal government that would test new prescription drugs, negotiate prices of drugs and make recommendations to provinces and territories on which drugs have the best value-for-money.

"We wanted to send a clear message to say 'this won't work,' I have no faith it'll work, and I've given examples of why it won't," MacLeod said, "I do have faith that Canadians working together, the private sector and the public sector, will come up with a great plan." 

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Kimberly said they are asking the premiers to take a look at what steps they can take moving forward with the disease strategy, which would include getting access to certain drugs.

"We know that our advocating has got us to a place where the pharmaceutical companies are ready to negotiate, these drugs can come to the table" Kimberly said, "And we just want them to be willing to come up with a strategy to make this happen, rather than keeping on saying why it can't happen."

Kimberly said cystic fibrosis used to be a pediatric disease, but now people are living longer due to life-saving medications. She said she wants to see advancements in treatment for Cassidy.

"I don't think an 11-year-old has to be advocating to save her own life," Kimberly said, "We can already forward see that if something isn't done, she won't live a long life."

With files from CBC's Emily Pasiuk and Courtney Markewich