I’ve talked about this before. And I’m pleased to report that, despite their representative’s assertion, BCBS has, in fact, been paying for my care. Originally, I was looking at anything from $79,000 to $130,000 for participating in a clinical trial. Instead, my family has had to soak merely $26,000 or so.
It’s a skewed country we live in, with equally skewed values, that we should have to absorb this cost to begin with. I’m a US citizen. I’ve worked and paid into the system for years. I’ve been the (unpaid) reason my husband can continue to pay into the system for more than a decade; and I’ve been the (again, unpaid) reason my daughter will (hopefully) someday pay into the system, too.
Yet here I am, asking my parents to dish out money intended for their own end-of-life care to save my rear end instead. Some days, I can’t begin to contain the shame and fury I feel.
The math works like this:
$1500 per year in health care premiums (2016-2018) (which my husband and I would naturally soak anyway, but still…all part of the picture)
$4500 per year in out-of-pocket maximums (2016-2018)
$4000 per year in travel to Philadelphia for the clinical trial (2017-2018)
Totaled up, that’s $26,000 in just over two calendar years. And we have good insurance.
Factor in other household emergencies (like both halves of our HVAC system going out, at $6000 each to replace) and suddenly we’ve soaked the equivalent of paying off a nice SUV in two years. And I haven’t even factored in how much my parents are spending (driving 1300 miles round-trip every quarter) to come babysit my kid while I’m in Philly.
How many families in America can do that? So very, very few. Most try, and lose everything in the process. We’re hanging on only because my grandfather worked three jobs his entire adult life to built the inheritance we’re spending. I can’t imagine how pissed off he would be to see even more of his hard work getting bled off to medical costs long after he’s gone.
Now, could I have gone cheaper on the travel? Oh yes, much. By half. But I could’ve done it that way only because I got lucky, and have thus far been healthy enough (even while on targeted chemo) to be able to travel alone. I didn’t know I’d stay healthy enough. I had to assume, when calculating costs, that someone would be traveling with me. I had to assume there would be hotel costs, because traveling and doing the appointment and traveling again in the same day would be too much for an ill person. And I’ve often traveled with someone anyway, even though I’m healthy, simply to give myself and my parents some much-needed one-on-one time.
Yet even then, even going with the most expensive options for my travel (two roundtrip train tickets plus two nights in hotel plus three days of eating out for two people), the travel has been by far the cheapest part of the cost of cancer. I never thought I’d view cherry-picked plane tickets as small potatoes, man.
Soaking at minimum an $1800 MRI every three months? Now that’s the killer.
And that’s just the money.
The cold hard fact is that, if the 2017 AHCA had passed, I know of at least two (firmly middle class) families who would’ve been forced to leave this country permanently.
Yep, you read that right.
Had the AHCA been passed, my family (and at least one other that I happen to know off the top of my head) would have been forced to emigrate.
Why? Because the AHCA would have allowed states to waive coverage of pre-existing conditions. And had my insurer changed for any reason, my cancer would have been deemed pre-existing…as would our family friend’s adult-onset type 1 diabetes.
Even if we had gotten lucky and not had to change insurers, we still would’ve had to flee this country–because the AHCA would have required that our families offset the cost of our coverage with punishing payback plans. For my friend, who was literally born to develop type 1 diabetes in her 40s (despite being a ridiculously fit person)? The reimbursement would’ve been somewhere between $40,000 and $60,000 per year. My reimbursement cost annually, had I metastasized? $140,000.
We came only three Senate votes away from disaster.
I could never have guessed that part of the cost of cancer would be losing the country of my birth. We came three Senate votes away from turning generations of my family’s American service and dedication into, “Well, that was a nice experiment. Time to take our clan back to the Old World.”
I don’t want to abandon my country. I don’t want my family’s grand American experiment to result in failure. I don’t want to be part of a middle class that has to cut bait just to keep its head above water, all because of health care.
I don’t want to see my country populated with only those rich enough to stay and those too poor to leave.
Cancer is a fact of human life. Isn’t it time our health care politics began to reflect that?