This is an open letter to everyone who has ever been sick, and to everyone who will ever be sick. It’s a letter to everyone with cancer, past, present, and future. It’s a letter to Ron Williams, CEO of Aetna, our insurance provider, and a letter to your insurer too. A letter to Jay Inslee, our Congressman, and to your Congressperson as well. A letter to Barack Obama, my President and yours.
It’s a letter that’s too much about brutality and too little about redemption. It’s a letter about our life.
As many of you know, we’ve been living with Shel’s cancer for 15 years. Like everyone who loves someone with cancer, I’ve felt alternately hopeful and hopeless countless times over the years since his diagnosis. With each new treatment he’s tried there’s been hope and fear and relief and disappointment, and then, finally, settling for the new thing that has become our life, taking into account whatever part of it has been lost to the ravages of the disease. We’ve been lucky enough to have health insurance through it all, although the amounts we’ve had to pay out of pocket have been staggering.
Cancer is a savage beast, eating away at one’s strength and vitality every day. Doctors and patients take their best shot at it, but sometimes the guns are just not big enough. New surgeries, new drugs, all have taken their toll on our life. And as Shel has moved through all the conventional treatments, and some unconventional ones, worries about what our insurance will and won’t cover have increasingly come to dominate our health care horizons.
Sometimes it seems like all we can do is huddle together in silence, awaiting our fate. That’s what my son Jordan has to do, huddle and hope. He had leukemia as a small child, and lived to tell the tale about how a cancer survivor with no health insurance goes without any sort of follow up, having no other choice.
At other times, resignation and a “there are lots of good things about America, too bad health care coverage isn’t one of them” attitude just don’t cut it anymore, and we’re desperate to fight back. This is one of those moments.
When what you have is thyroid cancer, and conventional treatments fail you, there aren’t a whole lot of choices. It’s not a sexy form of cancer, and research dollars don’t often find their way into the thyroid cancer research labs. But still, after 40 years of sticking with the same old same old, treatment-wise, new drugs are finally being developed, often drugs that have been used successfully to treat other forms of cancer. There’s always some bright spot of hope down the road, even though it often tarnishes before you even get close enough to name it. The treatment system is a patchwork of old and new, and it doesn’t hold together too well.
It’s time to confess, to share the nasty little secret that we’ve been guarding these past few weeks. Shel’s been taking one of those experimental drugs for more then three years, and now, it seems to have stopped working. The tumor that almost cost him his voice last year has been growing again. Sylvie’s healing hands seem powerless this time.
For a long time it seemed that the drug worked, and we were fierce with hope. We tried to live as if cancer weren’t perched on our shoulders, came back to France, settled in, planned a new life. But now all that’s water over the dam, our hopes and dreams washing under cancer’s cruel bridge in the blink of an eye. One minute you’re lying in the scanner thinking the radiologist will give you good news, the next you’re reeling with the shock of hearing the unhearable.
Every cancer patient has faced these moments, some of them many times. And for some reason no one ever holds your hand when pronouncing the terrible words. For the French, the words are no less terrible, but cancer treatment is free, because it’s understood that the disease itself is brutal enough without having to worry about money at the same time.
If you’ve been unfortunate enough to hear the words “it’s cancer” or “your cancer has come back,” hasn’t one of your first coherent thoughts after emerging from the fog of despair been “is this going to bankrupt me because my insurance company won’t cover the care I need?”
We heard those words recently. “Your tumor has grown. There aren’t a lot of good options.” In fact, there aren’t any good options. There are just more or less bad options, and the prospect of dire financial consequences, because most of the options aren’t approved by our insurance company. The dark door has opened, and no matter how faithfully we’ve guarded out hearts against too much hope, the cold truth is sucking us in.
In Shel’s case, he could still have that surgery they offered him last year, the one that might leave him without a voice, or without being able to swallow, or both. Aetna would pay for that. Or he could try one of the new drugs. Could. If the world were different.
The new drugs are out there, but they’re mostly not approved for thyroid cancer. There is one promising drug that’s approved in the Netherlands. Perhaps we need to move there? Because while there’s a chance that it might be made available to Shel off-label here in France, it would cost 4000 Euros a month, which is $6000. Then there’s another drug he might be able to try in the US, but it costs, you guessed it, $6000 a month. And we already pay $1000 a month for our health insurance. But since the drugs are off-label, aren’t “approved” by insurers, even though oncologists say they might work, might spare Shel the terrible operation, our insurance won’t pay for them.
We’ve completely lost touch with the idea that “doctor knows best.” In fact, the doctors’ hands are tied by the insurance companies and they no longer have the right to provide the drugs and care they think are necessary. No wonder the doctors don’t hold our hands when delivering the bad news. They’re handcuffed.
Aetna is happy to take our $1000 per month, but then they leave us high and dry, alone to contemplate a terrible future. Oh, it’s probably not just Aetna. Almost certainly your own insurance company would treat you exactly the same way, were you in the same trouble we are. And not because they’re all just a bunch of heartless baby-killers and father-rapers, either. It’s pretty much a sure thing that every single person at those insurance companies has loved ones, plays games with their children, pays taxes, relaxes in the sunshine, and sometimes wakes up in a cold sweat after a nightmare.
As well they might, because they know that their loved ones too will be touched by cancer, because one in three Americans is. And the nightmare is that their insurance company won’t treat them any better than ours treats us. We’re all in the black hole together.
So here’s my message in a bottle to senators, congressmen, insurance company CEOs, Mr. Obama, and all of you. Every one of us will be touched by cancer in this lifetime, one in four of us will die of it. Perhaps one of them will be my husband. Perhaps one of them will be you.
And while it’s true that everyone must die of something, is it equally true that Ron Williams, CEO of Aetna, while he might be a heck of a nice guy, deserves to earn $3.4 million per year with an additional $10 million worth of benefits, while Aetna refuses to pay its fair share of the $6000 per month that might save Shel’s voice, or life? That $3.4 million that Williams pocketed last year in base pay alone would buy 47 years worth of the drug Shel needs. And at his age, Shel won’t be needing the drug for 47 years, so he’ll be happy to share it with some other thyroid cancer sufferer who has no better options. Come on Mr. Williams, don’t you feel like sharing too?
It’s cruel, it’s unfair, it’s regressive and shameful, but what can we do, besides weep and gnash our teeth? Changing our citizenship to that of a country that actually takes good care of its most vulnerable citizens isn’t an option for most of us. All that’s left is to stand up and fight. Scream and yell until someone listens. Make America as good as it should be.
I’m not asking you to do this for me, or for Shel. Be a ray of hope for someone you love who has cancer, or someone who will get cancer. That someone might even be you. Send the link to this post to your congressmen and women, to your doctor, to anyone you know who might lift his or her voice in outrage against a system that perpetuates such shameful discrepancies. Write letters, make phone calls, sign petitions, march in the streets. In standing up for a fair and responsible health care system, the life you’re saving might be your own.