Health Care Saved Thanksgiving — and My Family
Issue   |   Tue, 11/14/2017 - 23:10

I remember 2 1/2 years ago, down to the very taste in my mouth and the angst and nausea that followed. And it was not even I who found myself suddenly threatened by a life-altering disease.

It was mid-February 2015, and my dad stood by the washing machine removing his snow-soaked outer layers in preparation for a hot bath. We had just dug our way out of the latest New Hampshire blizzard — I was on leave from school that semester — and finished clearing our long, steep driveways to allow my mom, returning home from work in Boston, to drive up and exit her car safely.

For several weeks, my dad had mentioned to me at various times feeling “odd”: tired, weak, ill or just “off.” A former marathoner, he had taken up winter hiking in the White Mountains roughly a decade earlier after a serious back surgery for a “fusion” of vertebra in his lower back had limited his capability to run comfortably. But even hiking, a regular and beloved means of exercise and mental relaxation, became cumbersome. Whether he was rising early from bed in order to arrive at the trailhead before dawn or snowshoeing through fresh powder several feet high on a barren mountainside, he spoke of feeling increasingly hindered by something he could not quite identify.

As he was stripping off his damp Carhartt flannels, he called me over to the machine, gesturing toward his upper leg.

“Galen, can you look at something for me?” he asked.

“Sure,” I said.

“What does this look like to you?” he asked.

Halfway down his inner thigh was a semi-spherical lump. I knew, but I did not know. In fact, I did not even want to guess.

“I don’t know, but it’s weird — why don’t you ask Mom?”

In short, several days later, he and my mom returned from the doctor’s office. My mom took me around the one “block” in our tiny rural town and told me that my dad — someone I had always viewed as unshakeable, a veritable rock in the hardest of times — had the rarest and most pernicious type of non-Hodgkins lymphoma: mantle cell lymphoma. It has a low survival rate, and the upper limit is somewhere around seven years, I recall her telling me.

My memory stops there. The last thing I can recall about that day is throwing up and enduring one of many sleepless nights.

Now, more than two years later, my dad has made an incredible recovery. He went through months of chemotherapy, an extended inpatient treatment in Boston at the both Dana-Farber Cancer Institute and Brigham and Women’s Hospital and lost his hair (and grew it back). My family and I struggled daily to comprehend it all too, I think.

Being in remission carries its own anxieties for the cancer patient and his loved ones alike. When will the cancer return? If and when it does, what will treatment entail? And, of course, how much longer will he live?

On the one hand, I could put all of this to the back of my mind — “compartmentalize,” as my mom advises — and focus on the final month of college I have between now and mid-December. Yet, on the other hand, both the season and the current political atmosphere prevent me from doing so.

Indeed, Thanksgiving awaits, and with it, the clichéd — but important — questions about the things for which we are thankful. Two Thanksgivings ago, with my father home for the first time after a weeks-long round of literally-crippling chemotherapy, I thanked his presence and my family’s fortitude in bringing as all together around a single table for even one night. And this Thanksgiving, I have little doubt that I will utter a similar recognition when we assemble and share our “thanks” while the turkey and sides grow cold before us — a small price to pay, my dad’s cancer made me realize.

But his treatment, especially that we were fortunate enough to be able to afford hundreds of thousands of dollars’ worth of top-of-the-line care through insurance, allowed me to reflect daily on the importance of equal access to such health insurance and the meaning that such financial support holds beyond the rows and columns of federal budget sheets.

One insurance claim I happened to see listed a drug — a single day’s 15 milliliter dose — at $10,000. And for six months, my dad ingested a nightly teaspoonful of what looked like yellow paint, poured from a pharmacy-dispensed bottle that cost more than $1,500 per refill. Without insurance, we would have been bankrupted, or my dad would have foregone treatment and might not be at the table this Thanksgiving.

So, when news first came from Washington, D.C. this year that Congress was pursuing a “repeal and replace” of the invaluable Affordable Care Act (A.C.A.), I extended our experience and good fortune to all those cancer patients who, without having the option to enroll in subsidized health care, might have been forced to avoid life-extending care. Each night, I crossed my fingers that the effort would fail: nothing seemed more cruel than using deceptive messaging and blatant lies to undermine the effectiveness of the A.C.A. — claims that “marketplaces are collapsing,” for instance, despite numbers showing more people have signed up than in previous enrollment periods — and thereby subvert millions of peoples’ chances at living a few days, months or years more.

Fortunately, the measure stalled, but the message did not seem to sink in. Just last week, the president suggested discarding the insurance mandate — a “tax” on those who do not sign up for insurance, which enables people in the A.C.A. marketplace to afford drugs like the “yellow paint” — as a part of the tax legislation currently moving through Congress. No such proposal has been implemented yet, but no less troubling is what does exist: removing the tax deduction for medical payments.

While not the exact type of insurance from which my family benefits, this tax exemption is nonetheless a form of insurance for millions of lower- and middle-class families who require costly medical care at the same time they try to raise children or buy a house or, more simply, feed and clothe themselves. Indeed, under current law any medical expenses above 10 percent of one’s annual income become exempt from taxation, which might mean an extra $1,000 or more toward other critical costs of living.

But this flies out the window under the proposed plan, and in comes the possibility that millions of people will find themselves saddled not only with, say, a $10,000-a-day chemotherapy treatment, but no shield from tax exemption on this payment. Worse, if the A.C.A were repealed as well (a constant threat with the current G.O.P. reign in D.C.), families could be doubly burdened. Forget the tax break, but also forget any possibility of an affordable insurance plan that might cover life-saving drugs or treatment. All of this is so that those holding “estates” — a staple of the proverbial “one percent” — are no longer taxed on these plush trust funds at all.

This all may sound overly dramatic. If anything, I wish I did not feel compelled to draw a line between my dad’s life and the current G.O.P. bill. But the myriad unfair components of the bill — the cessation of the medical expenditure exemption, coupled with a decrease in corporate tax rates, a gift to the pharmaceutical giants making the $1,000 -a-bottle “yellow paint” — demands that we, as voters and citizens, think about the implications for the actual people and their families on the receiving side of health care politics.

Indeed, think of the people who might no longer sit at your Thanksgiving table.

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