With just a few small words, the BCBS representative on the other end of the phone dropped a pitcher of ice-water into my belly:
“Blue Cross doesn’t cover clinical trials in any way.”
I struggled to wrap my mind around what I’d just heard–that my health insurance could value dollar signs more than my life. I began to cry, but I knew I would lose my chance to ask questions if I didn’t get hold of myself. So I did. I wasn’t steely when I spoke again, but I was together. “You mean, even though all of the imaging, bloodwork, and doctors’ visits that would happen during the study are exactly the same as the standard of care for my disease, because that care would be happening under the auspices of a clinical trial, BCBS wouldn’t pay a dime? Even though the extremely-expensive medication would be given to me for free?”
I almost didn’t manage to contain myself, hearing her confirm it. I’d been hoping I’d misheard, or that she’d misunderstood. After all, I’d had to explain ocular melanoma to her three different times before we could get to the crux of the conversation. But I persisted, because goddamn it, I don’t go down without a fight. “Is there a way I can be assigned…I don’t know, is there such a thing as a case worker? Somebody I can–”
The representative broke in on me with a strangely strong tone in her voice. “Are you requesting a case manager?”
I realized then that I was living that scene from the movie The Incredibles, when Mister Incredible tells the little old lady, “I highly recommend that you do not contact this person on the fifth floor, and fill out this form…” So I dutifully said, “Yes, I’d like a case manager.”
So now I have a phone number. I still don’t have the promised callback, but it’s a start. Perhaps the representative has her facts wrong. Perhaps she misunderstood (as most folks seem to) that there are no treatments to prevent metastasis that are FDA-approved. Perhaps the case manager can work some magic. Because my magic insurance words have thus far failed.
My family and I just got done figuring out the cost of participating in either of the two clinical trials I currently qualify for. Long story short (and I promise, the long story will come in a later post): because BCBS (at this point) won’t pay for anything, I’m looking at paying anywhere from $79,000 to $130,000 over the course of the next two to three years to get (at most) a 30% reduction in my likelihood of metastasis.
Considering that my chances were 72% to begin with, that means I spend the equivalent of buying a house and I still have a 42% chance of being screwed.
Explain to me again how I “win” by not having nationalized healthcare? People whine about the wait and the expense, but I’m already six months into this process and out more than $6,000 in premiums and out-of-pocket expenses, and I’m staring at $130,000 more.
Explain to me again how private healthcare is better?