“We only have 2 cards to play. We have already played one of them, so we need to play the second one wisely.”
Sounds like this person is talking about a card game, right? No. Actually, this person is my loverman’s haematologist/oncologist and he was not referring to a card game at all. He was talking about a human life. My loverman’s life.
I will warn you, this post may seem a little bit abrasive in comparison with my previous posts, but I need to have my say about this insanity. First let me fill you in on some background…
When Kevin was first diagnosed with Chronic Myelogenous Leukemia, I almost spit my coffee right out of my mouth when we were told that the first line treatment for this cancer, Gleevec, would cost “about $3000 a month”. I kinda laugh out loud and said, “OMG! Really?!” What I was really thinking was … WTF!? Are you kidding me?! It never occurred to me that patients with life threatening illnesses like cancer that NEEDED life saving therapy would ever have to worry about paying for an ESSENTIAL treatment in Canada. Never in a MILLION YEARS did I think that. Well I was wrong… DEAD WRONG.
Oh, and it’s actually $3,615.11/month… and that is a single dose. Some people have to take more per day… Just sayin’.
Because of the severity of Kevin’s leukemia when he was diagnosed, he has been on Disability for the last 6 months. I am self-employed because of my own disability. So I never know how much income I will bring in from one month to another and it’s not a lot. Because our combined family income is pretty low right now, we have been assisted by the Canadian Government for funding for his treatment. However, they do expect him to go back to work when he does respond to the treatment, at which time we will need to pay 25% of the costs of the drug because it will get switched to his work benefit plan…. and that is only IF they approve it.
So as much as all of that sucks, we dusted ourselves off and accepted it. We are part of many online CML support groups that consist of people from all around the world and we know that we are not the only ones who are struggling with the costs of treatment and care. At least we are being funded for now and the support from our family and friends has been incredible. We are grateful for that! Some CML patients have even given up trying to gain access to care and treatment because of the hardship. Sad, but true.
Two weeks ago Kevin had his 6 month molecular testing done. Just over a week later he received a call from the Cancer Clinic. His oncologist needed to talk to him, so instead of going back in August, we had to go back yesterday.
The bad news: The leukemia is still not responding to the Gleevec. He is still at “diagnostic levels”. They think it’s resisting the treatment for some reason.
The REALLY BAD news: They feel that it is necessary to switch him to a second line treatment, but… and I quote… “the government will only help fund TWO of these “fancy drugs” in a person’s lifetime. We only have 2 cards to play. We have already played one of them, so we need to play the second one wisely. I think we should do another bone marrow biopsy and wait to see what it shows so we can decide what treatment to choose next.”
Yes. You read that correctly. Sounds like a sick game of Russian roulette doesn’t it?
When the doctor said what he said, I looked at him, trying REALLY HARD to keep my cool and said, “So you are telling me that a human being’s life is not actually a right, it’s a privilege?” and he said, “It’s politics.” Then he continued to explain that they had to follow the ministry guidelines and protocol for Access and told me that he agreed with me and was on our side.
When I asked him what happens if the second drug doesn’t work, he told me that I shouldn’t be worried about that right now and we should cross that bridge when we get to it. I agreed that I should not be worried about it or even be thinking about that at all, but the fact that we do HAVE TO think about it and worry about it is disgusting and sad when you think about all of the money our government wastes on bullshit that obviously comes before the well-being of our citizens.
Because there is no cure for CML (except MAYBE a very dangerous bone marrow/stem cell transplant), most patients’ survival depends on taking chemotherapy TKIs (tyrosine-kinase inhibitors) for the rest of their life. I know that many cancer patients with other types of cancer have chemo/radiation treatments and go into remission, but this is not what happens with CML. So, because we are only 6 months into his treatment plan, I am EXTREMELY concerned about the next drug not working. You would be too if someone you love’s life depended on it.
I can’t believe how clueless I was before we experienced all of this. I can’t believe how naive I was. I can’t believe I haven’t heard people yelling and screaming about this madness from the rooftops. The stress and devastation of a cancer diagnosis or a life threatening illness is bad enough and families suffer financially as it is. No one needs to deal the financial burden of treatment. If our country was a third world country where everyone was struggling to make ends meet and provide the bare necessities to their families, I could maybe understand. Maybe. But we live in a country where some people make insane amounts of money for the work they do while others work themselves to the bone and suffer. We live in a country where people own more property and material things than they can handle. We live in a country where it’s more important to spend money showing off to the world than it is to provide our citizens with the essentials of life, including life saving therapies.
My heart bleeds for others who have had to deal with this insanity, especially parents of small children who are suffering. It’s not right. It’s not okay. Something has to change and you can bet that I will spend the rest of my life speaking out and fighting for change until it happens. I’m just getting started.
Thanks for the amazing support, prayers and encouragement! Regardless of this ridiculous red tape we have to go through, we will never let it get the best of us. We will stay strong, stay positive, keep laughing, keep sharing and keep going!
OH! And remember, if you are in Ontario, Canada this weekend… Stop by the Beer Store and donate your empties!!