Only a week or so before I was scheduled to start treatment with Pluvicto, I received a phone call from a representative of my treatment provider saying, “I have some bad news.” Right away, I knew that she was going to tell me that the treatment was still not available, and I’d have to wait longer to start treatment. I said that to her and she said, “I actually wish that is was I was calling you.”
I laughed and said something like “what could be worse than that?” She very nervously went on to tell me that she was calling to cancel my treatments altogether. After waiting for months, I was more than a little frustrated and asked her why they were canceling me if it wasn’t due to supply problems with the treatment. She told me that they had received word from my insurance company that the reimbursement for each treatment was going to be $850 less than what they needed to move forward with it. This, on a treatment that costs $45,000 per treatment.
I said, “you’ve GOT to be kidding me.” She said, “I wish I was.” I asked whether this was just a timing thing… like maybe it was being delayed while they worked out the reimbursement details with the insurance company. She told me that it wasn’t – that they couldn’t make money at the level of reimbursement they were going to be receiving. That’s it. End of story. Cancelled. Go somewhere else? Not as easy as it sounds. This provider was the only place nearby that had the treatment.
As it turns out, Liz Bonis from Local 12 had just filmed a story with me and my provider. The gist of the story was about the hope and promise that this new treatment offered to guys with advanced prostate cancer – guys whose treatment options were limited, short of a clinical trial. The story was just about “in the can” and ready to run on TV, so I immediately contacted Liz for two reasons: (1) so she could pull the story since I was no longer going to be treated there and (2) in hopes she might be able to bring some pressure to bear.
She knocked the ball out of the park, asking them to either provide (a) a written statement as to why my treatments were being canceled or (b) have a member of their executive team go on camera explaining their decision. Within hours, I was contacted by the provider’s CEO, telling me there had been a “mistake,” and that my treatments were back on. Liz asked for a promise from them that they would follow through with all treatments and they said they would. Thankfully, they have stayed true to their word so far.
By now, you might be wondering “what happens to people that don’t have a TV reporter as their advocate in cases like this?” It’s a valid question, and a troubling one. Stay tuned.
Until next time,