It has been eight years since I was diagnosed with CML, and over that time there have been so many people who have crossed my path, kept an eye out for me and made my cancer journey easier. Some are at the forefront – my oncologist, my GP, the nurses at Princess Margaret Cancer Centre. These are the thank-yous that we tend to remember first. But don’t forget those who may be a bit “behind the scenes” – like the people who figure out how you are going to afford your medications. A few weeks ago, I had the honour of speaking to the Oncology Drug Access Navigators of Ontario (ODANO). Meeting these incredible people, hearing about their passion and dedication to patients, and listening to them tell countless stories about how they refused to give up until they found a way to get medication to a patient reminded me of what an incredible difference they make. Almost every cancer centre has a Drug Access Navigator. If you need help understanding drug coverage, communicating with your health plan provider, or figuring out Trillium, find the drug access navigator in your hospital. You’ll be so glad that you did.
Here is an excerpt from my speech.
When you are faced with an illness that can potentially kill you, there are many people who cross your path, who make an incredible difference in your journey. Of course there are those who I call the “first responders.” These are the doctors and nurses who first give you the diagnosis. They explain your illness, answer your questions, explain treatment options, listen to your fears, and help your caregivers to understand what is happening. They are the ones with the numbers – they measure results and identify progress or failure. They are the ones who know if everything is going to be ok, or not. They are the ones who we rely on to make it ok. These are the people who treat mostly your physical being, and, if you are lucky, a little of your emotional being. These are the people who we say save our lives.
And they do save lives. When I was diagnosed with a rare leukemia eight years ago, there were a few days when I thought things would end badly. I had two little kids that I needed to be around for. I spent more than a few nights walking between their rooms, lying with them, listening to them breathe, smelling their hair and wondering if I would live to see them grow up. Thanks to medication, I am still here today. I often say that my oncologist saved my life. In fact, and he is always embarrassed when I say this, but I may even be in love with him.
But someone else saved my life way back then.
Once I knew what kind of leukemia I had, I was given a prescription for a medication that cost almost five thousand dollars. Not only did I not know where that money would come from, but I was also terrified of taking a chemo drug. How bad were the side effects going to be? Would it work? So there I was, afraid of dying, afraid of being sick, and afraid of what such an expensive drug meant for my family and our quality of life.
By the time I got to the drug access team at Princess Margaret Cancer Centre, I was beyond overwhelmed. I think I sat down and one of the first things I said was, “Just so you know, I am not leaving my kids.” What a weird thing to say! And how does someone respond to that?
I don’t remember what the response was, but I do remember that during this meeting was the first time that I felt a bit of peace since my cancer journey had started. I sat there and all I had to do was listen as the person across the desk made the necessary calls. And when I left that day, medication in hand and the financial worries put aside, I felt ready to begin the process of hopefully healing.
That day, it was the person on the other side of the desk who saved my life.
Since then, as the founder of the Canadian CML Network, I have witnessed other lives being saved. I often get calls from patients who don’t know how they are going to pay for the medicine they need to survive. They should be focused on their health, but they are not. Many of you who are here today have helped these people. You have helped me help these people. It is an incredible thing that you do.
So I want to take a moment to say thanks to all of you. If you ever wonder if what you do makes a difference, if you ever think that your work goes unnoticed, if you ever get tired of working in a world where people who are dying because they can’t get their medications, know that we, the patients, notice your hard work, appreciate your commitment and we are incredibly grateful. Thank you so very much.
This is an excerpt from a speech that was presented at the ODANO dinner on October 26, 2016.