I thought nothing of it when I opened a piece of mail yesterday from Astrazeneca, the pharmaceutical company that developed the new medication I just began taking to control my ovarian cancer. As per usual, I skipped the introduction and went right to the middle of the page where the “heart” of an issue is usually introduced. Everyone has to begin letters with background and niceties, so I just skip it. My heart fell to the floor. The words, “not approved for full funding” caught me rather unexpectedly. Not understanding the context, I skipped back to the beginning of the letter to figure out what the heck was happening.
Having had fantastic results on Lynparza – to the degree whereby my tumor in my lymph node appears to have shrunk significantly – I had a vested interest in whether or not I was going to be able to continue taking the drug. At a cost of $10,000 per month – I knew that this was not going to be funded readily out of the family budget. In fact, scenes of Americans going bankrupt to save a life flashed before my eyes. Till now, Lynparza support program was funding me fully. It was anticipated that, since the drug was working so well on so many women who are BRCA positive, the province would pick up the cost as it has with so many other vital cancer fighting drugs.
Not the case.
How is that possible that this drug was not recognized as a life-saving drug? True – it is not a cure – but it keeps me on the bench! And I have two of the most important things that keep me fighting on my side: quality of life and hope. I have lots of hope. I have so much hope.
Reading on, I discovered that my funding had been grand-fathered per se. Thank God. Thank God. Thank God. I don’t think I could take any more kicks to the ribs. Nor could my family. I have no idea how we would afford this life-saving medication and not have a totally disrupted life. What would we do? Would I allow the sale of our home – a move – would I have to return to work while fighting for my life? I know many people have to make these choices. I am privileged. This I know. I am thankful every single day I am alive. I tell my story as a good news story. I believe it is. Every day is “icing” to me. The system, so far, is working… for me. Health care in Ontario, Canada, has always been something on which I could count. Broken elbow? Fixed. Infection? Fixed. Diseased? We are working on it.
I feel sick when I think of other women who, after November 7, will not be fully funded. I feel anxious, but mostly sick. This is a human rights issue. This is an issue that we, Canadians, only read about. This does not happen in Ontario, Canada. I have never had to choose my mortgage over my health, or my health over my mortgage. This – is Canada. We – are advanced. I – believe in universal health care… equality… fairness… a right to life.
So – I need to give back. My pills cost nearly $200 a day. How can I “earn” my keep to make each day count? How can I make it so that other woman with this same disease feel hope? How can they have quality of life? Even if it is only for a year or two? These years count! Our lives count! I need to give back so that others can enjoy life as much as I do and that means living with reassurance that fighting for our lives doesn’t mean putting our families into bankruptcy.
And so – it begins. I believe this is a new chapter. I have a mission. I have no idea where to begin.
“You have never let any obstacle get in your way, Stacey”, explained a friend of mine last weekend. I hadn’t seen her for nearly 30 years. We had been university friends and had lost contact. “You were a free spirit”, she added.
Now, I believe her. I need to believe these words. Of all the obstacles I have faced, I think this one is up there in terms of BIG. I need to not give up on this battle for cancer. That includes fighting for the rights of other women to have access to Lynparza. I am an advocate. I am a cheer-leader. And now – my focus is on this mission to make it accessible. Who can afford $10,000 per month and still survive financially? Not me.
I am on a mission like no other. I have been offended by the injustice.
I have experienced a visceral reaction to a complacent and uninformed decision by an organization that has been blinded by ignorance and bureaucracy which must be conscious about the ramifications of its decisions.
I, rather we, have a right to life-sustaining medication. And in this case, it is Lynparza. I will fight to give others access to it – I have a mission.
Watch me roar.