“In November, I went to the pharmacy for a refill of the life-sustaining drug that keeps me going in the face of essential thrombocythemia (ET), a rare blood cancer. They couldn’t fill my prescription. That happens sometimes. You just call around to other pharmacies until you find it. But it wasn’t a minor blip in the supply chain this time. Everyone with ET was getting the same news. We were facing a global shortage of the medication we all depended on, with zero advance warning. It quickly started feeling like the Hunger Games.
The stakes are so high for the ET community, but the disease population is so small it’s hard for this to get the attention it needs and deserves. There’s currently only a single manufacturer for our drug and we’re in a position where there won’t be any new supply until, if everything goes right, December 2025. We’re running out now.
When we miss the first dose of our meds, a timer starts in our bodies. Untreated, our bone marrow will produce millions and millions of surplus platelets. Sooner or later, that leads to blood clots, thrombotic events, heart attacks. It might be weeks, it might be months, or it might be hours.
I was 29 years old and a new mom when I was diagnosed with ET in 2003. The typical patient with this disease is much, much older. I remember I was handed a pamphlet that said, don’t worry, average life expectancy with this disease is 15 years. Maybe that’s great news if you’re diagnosed at 82, but not so much when you have a baby at home.
I’ve been able to live a full life, to see my children grow, to become a successful entrepreneur and build a thriving company. I’ve been able to do those things because of advancements in medication and because of a faith that Health Canada and the drug companies would ensure the drugs I needed were there for me. I've spent years sharing my story with people, showing them that an illness like this doesn't need to hold them back from their goals - with their family or professionally. I want to be able to keep telling people that, to have it be true. But right now, I’m sitting on a seven-week supply of my life-sustaining medication and, frankly, I don’t know what happens when those seven weeks are up. It seems no one does.”
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