My name is Audrey Lagacé. I am 24 years old, I live in Brossard, Québec and I have a rare blood disorder, called Paroxysmal Nocturnal Hemoglobinuria, or PNH.
I was diagnosed with PNH a month after my 13th birthday. Because I was a teenager when I was diagnosed, I remember things mostly through the retellings of my mother, father and grandparents who supported me through it all. But from what I do remember, the doctors did not really know how to treat it at the time. They said they did not know children could develop PNH. I was told that without medication or treatments, I would probably only live another 10 to 15 years and that I was at risk of dying at any moment due to blood clots. The doctors did know there was a medication out there – Soliris (eculizumab)–that could help deal with my disease symptoms and improve my life expectancy – but unfortunately at that time Soliris was not publicly funded by provincial drug plans.
My health would deteriorate in the years that followed with more and more hospitalizations. If I caught a slight cold, I would end up with an infection and have to take antibiotics. The symptoms of my disease were becoming more severe. My body became unable to function and I found it difficult to keep up with my friends and classmates.
Thankfully, after a couple of years of fighting with the Québec government and the insurance companies, I was finally approved for the drug, Soliris. I feel so lucky to have been able to receive this treatment for my disease. Without Soliris, I never would have been able to lead a normal life and pursue my studies to become a registered nurse.
We are now past the 10-year mark since I was first diagnosed, and I am thriving! I work as a nurse at Charles-Lemoyne Hospital in the Hematology-Oncology Department. I not only take care of myself and my loved ones, but also the loved ones of others, whom like me, got handed difficult cards to deal with and are trying as best as they can to survive. I am able to do this, and be the woman I am today, thanks to Soliris. I know that without it, chances are, I would not have made it this far.
That is why I’m frightened by the new Patented Medicine Prices Review Board (PMPRB) guidelines. I already had the hardest time getting access to the only medication currently available in Canada to treat PNH. What if Soliris stops working for me, as it has for other PNH patients, and I need a new treatment option? The new PMPRB guidelines set to come into force January 1, 2021 would mean that I might never have access to new treatments or clinical trials for possible cures. That would mean the Government of Canada would be taking away my life; a life filled with hard times and struggles that led to love and success. Not only my life, but the lives of thousands of people suffering from rare illnesses that are difficult to treat and have limited research.
I ask you to stop and think on how PMPRB reform might affect the lives of those of us here in Canada, living with rare conditions that are just as difficult and important as diabetes, cancer, heart disease, etc. Keep in mind that NONE of us asked for this. All we ask for is the possibility to live our lives and to be a part of society.
I am only 24 years old. I am looking forward to a future. Please make it so I will be able to have one.
Thank you.