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Volunteer Advocate
cf insights cf insights

Advocacy in action: Simone’s story

My name is Simone McFee. I’m a 25-year-old woman from BC and I have cystic fibrosis (CF). As I’ve gotten older, this progressive disease has started to interfere with my daily life more and more. As my lungs are subjected to more frequent infections, particularly in the past year, I find myself frequently unable to attend work, spend time with my friends and family, and partake in many of the hobbies I enjoy. In the past year and a half as my disease has thrown me into a downward spiral, I have been hospitalised for two-week periods 10 times. The strain that these exacerbations have had on me has been debilitating both mentally and physically. In December 2015 my right lung collapsed, resulting in another month-long hospitalisation with a tube in my chest to drain the air. A life of permanent disability, discomfort and eventual early death was all I envisioned for my future.

Orkambi = fewer hospitalizations and better overall health

In March 2016 I was approved for Orkambi through Compassionate Access, as my lung function is less than 50%. After only a month on it, the results have been dramatic. I have been out of the hospital for three months now – considering the fact that I was in and out of the hospital nearly every month for the past year, this is dramatic. My tolerance for physical activity has increased considerably; I no longer have to worry about having enough energy or lung capacity to go to events with my friends, walk the few blocks from my bus stop to work, or even make it through a work day..

The inflammation in my lungs, a constant in my life, accompanied by chronic cough, shortness of breath, and chest pain, has reduced. I barely have chest pain at all anymore, my shortness of breath is noticeably less, and my chronic cough has lessened. I finally have an appetite again after a year of struggling and I am able to gain weight. Gaining weight is another essential component to staying healthy and out of the hospital with cystic fibrosis.

There is absolutely no way this drug should only be covered for those with cystic Fibrosis with lung function under 50%. Early administration of this drug would reduce exacerbations, which inevitably lead to more hospitalisations and lung function decline, which leads to more hospitalisations. The strain chronically ill patients put on the health care system would be significantly reduced.

My future includes Orkambi

Now when I envision my future, I see a future to have. I can go to law school and pursue a legal career in Aboriginal Law, like I was planning on doing before my body started to fail me. I see a future where I don’t have a lung transplant by 30 and die by 40, and it’s realistic. With Orkambi I can be healthier, more productive, and happier. I can be a person living with a chronic disease rather than a person who is slowly dying from one. It is absolutely essential that this drug be approved for all Canadians with cystic fibrosis with the F508del mutation to prevent the progression of this disease.

Simone McFee

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