Friends and Family,
Here's how a recent conversation went with my oncologist:
Me: "My right elbow itches, and I get a twitch in my left eye when I eat squash."
Doc: "Could be the cancer. We should get you an MRI."
Those weren't the exact words, but pretty close. I had some pain radiating down my right arm for two days, so I dutifully reported it, just like they drilled into us clinical study participants.
I thought it might just be an irritated nerve, but when you're an oncologist everything looks like cancer. Since I have cancer in a couple of spots in my spine, he was worried it had spread to my neck. Regardless of whether I agree every time, it's good to know that he has my back.
This is when I got a lesson in the costs of running a clinical trial. Before he ordered the MRI he had to email the drug company to find out if it was something they would pay for, or whether it would my insurance would have the honor. Routine care goes under my insurance. Anything not routine, like my biopsy, EKG's, lab work, etc. gets paid for by the drug company.
You thought I was going to San Diego all these trips for treatment? Nope. All I do for treatment is take a pill every day. The trips to San Diego are to get scanned, sampled, and studied.
Every CT, MRI, and trip to the infusion room for EKG's costs thousands. If you've ever been in a hospital you know that the bill is always, always, always higher than you think it could possibly be.
Multiply these thousands by a couple of dozen or more events over the course of a year or two for the trial, and the math gets pretty staggering. Then multiply that by 440 participants. That's without even considering the cost of all the brains and research it takes to develop the drug.
It all adds up to the reason why they charged $200 per pill for Tarceva, and why they'll probably charge something similar when AZD9291 grows up and gets a real name.
I have often thought about the massive bill my insurance company is paying for my care. I have often felt guilty about these massive bills piling up over eight years, and I'm still running up the tab. I am one of the reasons, I thought, why your insurance premiums are so high.
Am I worth spending that kind of other people's money - your money - to keep me alive? What is the value of a single human life, when the cost is so extraordinarily high? That has been a heavy weight to carry. Not enough to overcome my survival instincts, but all the same it has weighed on me.
After eight years I've had time to think more about this. This is how it looks to me:
The drug company spends a zillion to develop a drug. They pass this on to my insurance company, and make all their money back, plus another zillion for their trouble.
They also sell it in other countries, sometimes for full price, but it's really based more on ability to pay. It can be sold for a fraction of the price, although they may wait until it has gone generic before they sell it at the discount rack price.
Yes, your insurance dollars are paying not only for my care, but for the cost of developing the drugs that will be used around the world. You are also paying for future care, since the patent will run out in 20 years, and then they will be selling these pills for a few bucks. I'm OK with this system, because this country can afford it more than a lot of other places in the world.
I don't know how you feel about it, but all this has eased my conscience immensely.
Back to my doctor and me. While I waited to hear back from him, I iced my neck and stayed away from the gym, so I wouldn't irritate it further. A day later he was still waiting to hear back from the drug company. I told him that the pain was gone, so he agreed to cancel the MRI request.
So what's the answer to the question, what's it take to get an MRI around here?" It's simple. If your baseline is cancer, anything more than a bad case of hiccups will get you another scan. But this time anyway, that won't be necessary.
That's one less pain in the neck!