“Desperate times call for desperate measures and I’d rather be broke than dead.”

Those are the words of Janelle Dawson, a Steinbach resident who is one of only 4,300 Canadians with Cystic Fibrosis, a disease that causes her lungs to gradually fill with fluid until it is no longer possible to breathe. Her brother also has the disease.

Recently, Dawson held a Facebook contest in which every person who shared her post would be eligible for $1,000 cold cash, hence the comment. Her post was about a bill proposed by the Patent Medicine Price Review Board of Canada that seeks to limit the yearly cost of any given drug. According to Dawson, the most effective medication for CF is called Trikafta and is known more fondly as the “miracle drug” by many of its users. Trikafta was invented in 2019 and at around $350,000 annually, it costs significantly more than its proposed limitation of $90,000. The drug has not yet been passed in Canada and may not ever be.

“Because this bill is up in the air, Vertex Pharmaceuticals, the makers of Trikafta, may not even approach Health Canada for approval because if it passes they will be losing a lot of money.”

Dawson is afraid that the decision to pass the bill could, hypothetically, knock years off of her life. Canada’s CF patients are not the only ones who will be affected by this bill. If it is approved, Dawson says anyone with an expensive-to-treat illness may be forced to rethink their method of medication.

“This affects anyone with a rare disease,” she stresses, and if you don’t have something now you can develop it down the road.”

By implementing this bill, Dawson believes Health Canada would be moving backward. “Drug companies are not going to approach Canada, we are going to become an outlier, and this will kill a bunch of new drug launches in our country,” she states.

Distressed by the possibility of this, Dawson says she has submitted letters to both Minister of Health Cameron Friesen and Provencher MP Ted Falk, pleading for a reconsideration of the bill.

A government spokesperson indicated the following: “Health Canada’s recent amendments to the Patented Medicines Regulations strengthen and modernize Canada’s pricing framework for patented drugs so that the PMPRB can better protect Canadian consumers from excessive prices in an era marked by increasingly high-cost drugs.”

Dawson says she understands the government’s reasoning but still feels it does not give enough weight to the less common drugs in the medical system.

“To put a dollar number on a drug is extremely unfair,” she states, “they need to come up with an independent rare disease strategy.”

So far, Dawson’s Facebook post has been shared over 1,200 times.

Dawson says she has heard rumors that Vertex is beginning a dialogue with Manitoba Health, and is hoping it is true. Even if things do turn out positively for the CF population, she says other rare diseases may not be so lucky. 

Friday was the last day to officially object to the bill but Dawson says she and many other like-minded individuals will continue to making noise until the government hears.