Health Care Reform, Quick!

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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.

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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.

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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.

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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.

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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.

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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.

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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?”

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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.

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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.

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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?

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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.

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29 Comments on “Health Care Reform, Quick!”

  1. zuleme Says:

    Yes. Yes. Yes. This morning in the NY Times it sure looks like a health care bill will pass. How much it will help, and how soon, or soon enough, we’ll wait to see. We have totally inadequate insurance, self employed, we are left, as our insurance agent said, swimming with the sharks. As we age, they raise the premium. Our deductible is as high as we can get. My husband is Swedish so we do have a chance to go back to a sane society if we have to.
    All my sympathy to you and Shel.

  2. Rona Y Says:

    I’m so sorry for what you and Shel (and those who love you) are going through. I hope your poignant letter will open the eyes of others, and encourage them to advocate for more complete (and less costly) health care.

    I’m sending healing thoughts Shel’s way, and to yours, as well.

  3. Rebecca Says:

    I’m with you, Abra. ALL the way and then some.

  4. Janet Says:

    Absolutely. Well written, thank you!

  5. Linda Says:

    Abra and Shel,
    I think of you often. Healing thoughts to you Shel – please fight it successfully.

  6. Wolfgang Says:

    I am an “anomynous” reader of your blog or to you as a person.

    YOU ARE RIGHT IN EVERY SINGLE WORD !

    As being a doctor myself, having had the lifetime experience of being diagnosed for Cancer being an 43 year old husband with 2 small kids and a n outstanding wife.
    I will not say much except.

    Yes,one gets very loneley out there in the ocean of life and the lifeboat seems to shrink at every rolling wave.

    Keep on rowing the lifeboat, there is no other option

    Cordialement
    W

  7. Jan Lang Says:

    I’m thinking of you both with sorrow that the beast has returned; and in absolute agreement of all you’ve written. Shel’s kind words of experience helped me greatly when going through my own radiation treatments and I just think it’s all a damn shame! Take care and comfort in each other, both of you.

  8. Eric Says:

    Marching in the streets in America gets you tazered and arrested.

    The only way to make a point in the US is by shock and awe.

    After sitting next to the HR department in a multi-national company I can verify that there are father-raping baby-killers that live and breath the same air I do and do not seem to mind what they do.

  9. Cathy Garossino Says:

    This health care nightmare has been dreadful for you and your family. You expressed what many of us feel but did so much more eloquently. I wish more people would take the time to see both sides of the health care issue, the US side and almost the rest of the world side. I believe that things would have changed a long time ago if that was the case.

  10. Lori Says:

    Abra –
    I am sorry to hear this news. When you started your blog, I was recovering from surgery for cancer and I so looked forward to your bright, cheery, thought provoking posts as I was recovering. Even though I don’t know you and Shel, you are in my prayers and thoughts. Too often, people don’t know what to do when someone in their lives gets sick. Your request to demand healthcare reform deserves to be heard and sharing your post with as many people as I can will make me feel like I am helping in some way. You are an inspiring person and I wish you and Shel much luck and strength, with as many moments of joy that you can sieze upon.


  11. Very sorry to hear about your bad news.

    As Paul Krugman noted in his column in the N.Y. Times this morning, this is the moment of truth for the health care bill, which is in the hands of the so-called centrists, including my Sen. Joe Lieberman. They don’t seem to have a coherent (or any) reason for opposing it (or not one they are willing or able to declare, anyway). All we can do as citizens is encourage them to think further.

    I have just written to Sen. Lieberman to see if I can help him change his mind.

    Best of luck to both of you.

  12. Cindy Lovell Says:

    Oh Abra I am so sorry to hear this. I just want to give you and Shel a great big hug and not let go. I didn’t get to see Shel much on your short trip back here to Bainbridge and I am wishing now that I had. Tell Shel that I am sending positive loving thoughts to him. Please keep me informed, I miss you.
    Cindy

  13. Lauren Says:

    Abra and Shel, I am so sorry to hear this. What a profound and poignant post you’ve written. What a call to action.

  14. Don Morton Says:

    I just sent letters to my senators and representative asking not only for health care reform but most importantly campaign finance reform.

    My thoughts are with you both.

  15. Wendy Says:

    I read this first thing this morning but have really been at a loss for words, I’m truly sorry. I will absolutely send this off to those in charge and hope for the best. Thinking of you both. xo Wendy

  16. Chrissy Says:

    Abra and Shel –

    I’m sending you both light and love. Unfortunately, urging Utah senators is a waste of time, but but I hope and hope and hope for health care reform as well.

    I can’t imagine your fight with your ins. co. I have Blue Cross Blue Shield and my individual plan has increased 60% in 2 years because I turned 30 and was diagnosed with seasonal allergies!

  17. Margaret Says:

    Sending all the goodness and light I can conjure Shel’s way. What a beautifully written piece. Blessings to you both!

  18. Abra Bennett Says:

    Thank you all so much for your love and support and wise comments. I’m writing to everyone I can think of about health care reform, and I hope you are too. C’est maintenant ou jamais, it’s now or never!

  19. Jeanne Says:

    It’s not just what the CEO is paid and what his company doesn’t pay out in support of it’s customers. It’s the basic premise that a consumer buys insurance (what ever kind of insurance – life, health, auto, home, etc) for protection against a huge bill later IN THE EVENT OF A LOSS; that’s what the insurance company provides – the funds when a loss occurs. The insurance company doesn’t want to pay out when the time comes; they want to keep the money paid into the system and they will do everything possible to find an excuse to not pay. That’s the core issue. You may never have to call on your insurance but you pay it anyway because you are insuring yourself against the risk. It’s not the qualified professional (doctor, builder, mechanic) that makes the call about what’s needed and what isn’t – it’s the insurance worker making the decision. The business of insurance isn’t there to protect the consumer anymore; it’s a business trying to make money and that’s the problem.

  20. geri Says:

    So sorry to hear of Shel’s health downturn. May your wonderful, enriching life in France continue to build healing, shared moments and hopefully, as a result, put his cancer in remission.

  21. Greg Peterson Says:

    What a powerful post! Our thoughts are with you–of course!–and perhaps your words will in some way contribute to the solution.

  22. molly Says:

    Oh my. I popped blithely over from roots ‘n grubs, was struck stone cold by your post, and just wanted to offer a word of support and encouragement. And applaud the clarity and absolute truth of your insurance perspective.

  23. Lucy Says:

    I am terribly terribly sorry to hear this news. I am praying for you and trying to think of things I can do to help in addition to spreading this message.

  24. Baroness Tapuzina Says:

    Abra,

    Would you like me to check if the drug is available here? I will write you privately. My thoughts and prayers are with you and Shel.

  25. Jann Says:

    This breaks my heart~I am truly sorry to learn of this devastating news……

  26. Nina Says:

    My beloved husband is fighting lung cancer, and currently taking a new drug that offers us hope for keeping him in “remission”. I know only too well that the day will come when we get just the kind of news that fills one with dread. The fear of becoming uninsured is with me constantly.
    I pray for your Shel, and for you, and I wonder if possibly there is a research programme in France that would get you the meds that Shel needs.
    I am sending the link to my Massachusetts legislators.

  27. Sally Robison Says:

    Shel and Abra, terrible news. How I wish you were back here for us to bring comfort and, perhaps, a nice something–not my refrigerator soup however. I will alert the writing group of your latest addition to the art of persuasive writing.
    We will be thinking of you and, of course, send tender thoughts.

  28. Rocky Says:

    My thoughts to you and Shel, if only we had a real health care system.


  29. Just caught up with the blog guys . Poignant writing Abra , I feel very lucky to be in my situation in France . The health bill has now passed in the house in the US so hold on a little longer . See you soon .xx


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