Dear Justin Trudeau,

Cystic Fibrosis

Dear Justin Trudeau,

Growing up in Canada I always felt incredibly lucky. I thought Canada was the best country in the world. I’m a successful, award-winning, serial entrepreneur and CEO. I provide employment and temporary jobs for thousands of young Canadians. I’ve attended many women’s events where you honoured and praised myself and my fellow Canadian women CEO’s. It gave me the illusion that you genuinely cared about your people, and what was right, not just the appearance of being “woke.” It’s upsetting to say now that what I believed via what you said was wrong.

I was born the middle child of two siblings suffering from the deathly disease Cystic Fibrosis. My older sister Julia and my younger brother Christian were both inflicted with this terminal illness. I was spared. Cystic Fibrosis is a disease that makes breathing impossible, it slowly robs you of every organ, it takes away your breath, and then it kills you. The slowest most painful death imaginable. Fortunately, you do not have to see your children suffer in this way but imagine if your children did – I expect the simple thing I am requesting would be done already if your children suffered from this disease.

I watched my siblings, my best friends, fight and suffer our entire lives. In and out of hospitals, double lung transplants, and I saw the deaths of friends also suffering from CF; I spent my childhood Christmases at the Ronald McDonald house. Growing up, every opportunity I had to make a wish – every wishbone, every penny in a fountain, every candle blown out – I wished for the same thing, a cure for Cystic Fibrosis.

As we grew older and my sister got sicker, it seemed like this wish would never come true. Then came the horrific day where my beautiful sister was taken from me on June 1, 2011. I watched as she took her last breath in front of me. A pain you will hopefully never know, to watch an immediate family member dying at 28 years old in front of you and you feel helpless. Her death left our family absolutely broken and caused my father and I to both be hospitalized to deal with the insurmountable grief – all while knowing my other sibling would suffer the same fate.

Since then, my Mother and I have done everything in our power to keep my younger brother Christian healthy, to fundraise for a cure, and raise awareness of just how badly it’s needed. Then, some incredible medical breakthroughs happened, something we had dreamed and wished for all these years. A pharmaceutical company called Vertex launched the first meds which greatly reduced the effects of CF. We watched as other countries approved them for its patients. A year went by, then another, and another, and another and the Canadian government made excuse after excuse as to why they couldn’t do the same for Canadians with CF.

Then comes the biggest breakthrough of all: Vertex launched the medication called Trikafta in 2019. Trikafta turns CF from a terminal disease to a manageable illness. Finally, my wishes – and over 4200 other Canadians with CF – were answered. We watched as every other developed nation once again jumped to get access to its patients. But Canada went the other way. Canada refused to negotiate and chose instead continue to watch (with a blind eye) CF patients suffer and die needlessly. All we see from your government is excuse after excuse, broken promise after broken promise, all while people are dying.

With deep sadness, I no longer think Canada is the best country in the world, and I am no longer thankful for this country. Its promises lie flat. At this point, it seems to me that this country is one that lets its people suffer and die over money and bureaucratic nonsense. Your government is one that operates so immaturely that they can’t even sit down with Vertex to find a solution for patients in dire need. What you are not doing is something that the United States, Australia, Denmark, England, Scotland, Ireland, France, Germany, Netherlands, Austria, Italy, Sweden, Norway, Greece, Spain and Luxembourg have all done. And we are to be ranked with these countries? How?

I continue my life of watching my sibling suffer, struggle to breathe and fight for his life, facing the fate that our other sibling suffered. Knowing he doesn’t have to suffer needlessly, knowing that there is an easy solution within a rare disease strategy, I am no longer a little girl making wishes in Sick Kids fountain. I am a strong woman. A woman with an earned and deserved voice who knows right from wrong. We have been polite and we have been patient. That ends now. We’re coming together and we are going to get loud. We will be protesting, we will be making it known to the entire world what failure and injustice you have caused by simple negligence. We will be that voice for the breathless. We are no longer waiting and we are not going to say “sorry.”

This will be your legacy. How do you want to be remembered?

Click here to join our Right to Breathe Rally – March 25th, 2020 Toronto Ontario.

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