Since 2012, there have been numerous breakthrough drugs for Cystic Fibrosis patients. This group of drugs, CFTR modulators, are all manufactured by Vertex Pharmaceuticals and treat the underlying cause of Cystic Fibrosis opposed to just managing the symptoms. The first generation of these drugs was Kalydeco, followed by Orkambi and Symdeko. However, with the exception of the drug 'Kalydeco' which only treats 3-4% of the CF population, none of these costly drugs (priced at $300,000) have been approved for public funding and can only be accessed by those with private insurance willing to cover it or out of pocket, so many CF patients are without access.

In 2019, Vertex introduced their third generation of CFTR modulators - a new drug which treats 90% of Cystic Fibrosis patients. This new drug, Trikafta, is a triple-combination therapy and takes from its predecessors mentioned above. Since its swift approval in the United States, many Cystic Fibrosis have been sharing their stories and the impact of Trikafta on their lives - there have been people reporting 50% increases in their lung function (most seeing a 10-14% improvement - WHICH IS HUGE.) Some additional benefits Trikafta patients are experiencing are: minimal 'symptoms' of Cystic Fibrosis, 50% decrease in pulmonary exacerbations which reduces long hospital stays; therefore, also decreasing the likelihood for more expensive medical procedures such as lung transplants. This drug is the next best thing we have to a cure and would DRASTICALLY improve many patients lives; however, Cystic Fibrosis patients are being denied that opportunity in Canada.

Currently, we are in the middle of a chess game. Due to the new "Universal Healthcare" system that is being introduced in government which wishes to put a cap on medication prices, the manufacturers of Trikafta have not applied to Canada. This piece of legislation, "Universal Healthcare" or "Equitable Healthcare" sounds great in theory; however, this legislation severely LIMITS life-saving treatment to patients with Cystic Fibrosis and the 1 in 12 other Canadians living with rare diseases, which will cost lives - a price we are not willing to pay. CF patients dying is not a trade off for cost saving - it’s a basic human right; we are more than a dollar value. Our efforts for now must be aimed at the government to develop a Rare Drug Strategy to evaluate rare diseases separately (rare diseases have more costly drug prices because of the fewer numbers)/ to temporarily halt this legislation until Trikafta can be grandfather'd in or at the very least sit down at the table with Vertex to try to come up with some alternatives that are time efficient and DO NOT COST LIVES.

We do not want to lose anymore patients, friends or family members when there is treatment just south of our border. We recently lost a CF patient in Nova Scotia, Chantelle Lindsay, who was a victim of this ridiculous and disgusting back and forth and we will also be rallying for Chantelle, her family, friends and community on the 25th.

Place: We will be meeting outside of City Hall Square where we will then head to Province House at approximately 11:00am.

This event is open to ALL and we encourage ALL to attend. We want to highlight that although this is a Cystic Fibrosis rally, 1 in 12 Canadians will be diagnosed with a 'rare disease' and that this legislation which is supposed to give equitable healthcare will be detrimental to many Canadians. Please wear some purple, make some signs and LET'S MAKE SOME NOISE.

If you are a Cystic Fibrosis patient and plan on attending, we will be getting bandannas for identifier purposes for infection control. Please let us know if you plan on attending so we can make sure to have more than enough 🙂