Breast cancer, the Affordable Care Act, my friend and me (and why you should care)

In one of life’s little ironies, this National Day of Action to preserve Americans’ access to health care coincides with the ninth anniversary of my breast cancer diagnosis.

January 15, 2008 was a Tuesday, and I was sitting in my office when my secretary put through the call from my doctor. I can’t remember what I was doing at the time, what I did afterwards, or much else, really. Quite a bit has faded over the past almost-a-decade, even in the two years since I wrote this 2015 post.

The important thing was that I was sitting in my office. Which is to say: I had a job, and it was the kind of job that comes with an office, someone to take calls for you, and health insurance.

So as I went through treatment – which involved too many scans and biopsies to remember, surgery, a fairly grueling course of chemotherapy and eight years of anti-hormonal drugs – I was cocooned in a security blanket of comprehensive coverage.

Not once did I have to worry about paying the hospital or the oncologist. Or – as I casually stashed those little vials of Neupogen in the fridge – the pharmacy. (Neupogen was the specialty drug that allowed me to survive dose-dense chemotherapy. I believe the sticker price was upwards of $3,000. Per treatment. I had eight treatments.)

Not once did I have to decide whether the top-of-the-line anti-nausea meds I was getting were worth the co-payment, or whether a little queasiness might not be a reasonable trade-off for paying my utility bill on time.

Not once did I have to question whether I’d be able to keep my house. Or whether my teenage daughter would be able to go to college.

And not once did I give so much as a fleeting thought to the possibility that, if my cancer metastasized and I required lifelong treatment, and if the treatment worked and I lived another five years, or ten, I might bump up against a lifetime limit on my coverage.

I never had to face these things, but after I joined an on-line support group, I met a lot of women who did.

I met a woman who did in fact lose her home, because she had the bad luck to be diagnosed with cancer just as the economy plunged into financial crisis and recession.

I met a woman who didn’t fill her anti-nausea prescriptions because she couldn’t afford both them and the antibiotics her doctor had prescribed for a post-surgical infection, and the antibiotics were potentially life-saving, while the anti-nausea drugs were just for quality of life.

I met a lot of women who were forced to worry about a lot of things no one with a cancer diagnosis should ever have to worry about.

Then the Affordable Care Act passed, and yes, it was imperfect, but it made things better.

A lot better.

Even I, cocooned and cosseted as I was, could breathe a little easier. Thanks to the Affordable Care Act, I knew that if anything happened to that great job of mine, I would no longer be uninsurable. (That security allowed me to do crazy things, like retire, move to Brooklyn, marry the love of my life, and start this blog.)

But it made a much, much bigger difference for my friend Tricia, who was diagnosed with metastatic disease right from the get-go, and whose insurance policy had a cap on lifetime benefits. Which meant that if she lived a long time – long enough to see her youngest daughter graduate from high school, then college, maybe even long enough to hold a grandchild, or two, in her arms – she would live herself right out of her health care coverage.

And then she’d go bankrupt or die. Or both.

After the Affordable Care Act eliminated caps on annual and lifetime benefits, Tricia set herself a new goal: to live long enough to blow past the old limit on her policy so that she could call up her insurance company and taunt them that she was still here, and they were still paying.

The thought never failed to crack her up. (I can hear her laughter as I type this.)

Tricia died this past May, shortly after her fiftieth birthday. She did live long enough to see her youngest graduate from high school and start college, which makes me happy, because I know how important that was to her. She did not live long enough to meet her grandchildren, which makes me unspeakably sad.

And while I don’t know whether she ever got to make that taunting call to her insurance company, I’m glad that it was a possibility right up until the end – and that she was spared the sight of the House, Senate and President Elect stumbling over themselves in their eagerness to take her health insurance away.

Because, don’t kid yourself – that’s what they’re doing. To cancer patients, to others with chronic health conditions, to tens of millions of newly-insured Americans.

And so, today, when I’m out there shouting and rallying, I’m going to be thinking of Tricia’s laughter and the way she described her situation – “I’m not dying, I’m living” – and how Paul Ryan, Mitch McConnell, Donald Trump, the whole lot of them combined are not worth one strand of her curly red hair.

We’re not going to let them do this, are we?

Goddamn right we’re not.

 

 

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3 thoughts on “Breast cancer, the Affordable Care Act, my friend and me (and why you should care)

  1. As another cancer survivor, with three grown kids, I can identify with this. It’s all true, including the stories about your acquaintances that had it worse off financially. Praying that the powers that be never reduce the lifesavers that make care and medicines affordable for us.

    Like

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