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This is an update on my friend, Will, who's story I told here:
"Something Fierce and Imperishable...."

It's not a happy update, and I need your help.  I don't need money - I need ideas.  And maybe prayers.  And what all of us need: a sane, compassionate, and rational healthcare system.

Two weeks ago, Will went for scans to monitor his previously-in-remission stage IV melanoma.  He was feeling great, and on the brink of making some exciting and positive changes in his life.  I went with him.

If you've never heard the words, "The cancer is back, and it's worse", you probably can't really understand what happens when you hear them.  Imagine walking underwater, trying to make out what someone is shouting at you.  Being unable to get to the surface to catch your breath.  Knowing that critical news is being imparted, and that you need to listen, and process it, but being unable to understand a word.

And so, it's back, and it's in his lungs and liver.  That's the bad news.  The good news: it's not in his brain, and there are treatments.  In fact, given some cutting edge breakthroughs in melanoma treatment, there may be some very effective treatments.  And I lied, I didn't tell you all the bad news.  There is a test needed to find out if Will has the genetic mutation that would qualify him for this cutting edge treatment (to find out if he is B-raf positive, an oncogene that a majority of melanoma patients have) and his insurance won't pay for it.  It's an expensive test, apparently outrageously so, and in order to even get Medicare/Medicaid to consider covering this, he has to "Fail" a round of chemo.  Well, he's already failed two other treatments, but that's not enough.    Until he is tested for B-raf, he won't qualify for the "astonishingly successful" clinical trials that those who test positive can get into.  And they are having remarkable results.  Which, in the world of stage IV melanoma, is just this side of a miracle.  But it's a miracle that is for those who have insurance that will cover it.  Eventually, Will's insurance might decide he is eligible for a shot at this treatment.  But - wait- like the old show, "Let's make a Deal!" - there may be a catch.

Here's the catch:  When (not if, according to his oncologist) he fails the conventional treatment,  the failure could results in the cancer spreading to his brain.  And then it may be too late for much help from this treatment that - now - could actually help him. He would be disqualified from many clinical trials due to brain metastases.

Money for drones in the mountains of Kandahar, no money for Will or human needs in general.  Will, who has been failed by every single institution, government or private, that he's ever encountered, remains hopeful - he voted for Obama; he's big on hope, it's all he's ever had, really, to get him through his life.  

I have him booked for a second opinion.  But I know that the doctor he will see, while a melanoma expert, a "Mud/Phud" (MD/Ph.D) won't be able to wave the magic wand that provides Will with humane insurance.  And I don't know what to do.  If Will lived where we used to live, Australia, this would not be an issue.  But he's living with "The Greatest Healthcare System in the World".  So, yeah, there's hope.  Just not for you.

If anyone has any ideas or experience in dealing with this, or a similar dilemma, please share them.  If you have no ideas but are a believer in prayer, please do that.  And no matter what your experience or beliefs, don't give up on ending the "Murder by Spreadsheet" industry in this nation.  I don't know if Will is going to survive his cancer, or the US health care system.  But this has to end.

Originally posted to KibbutzAmiad on Fri Jan 29, 2010 at 04:31 AM PST.

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Comment Preferences

  •  Tip Jar (9+ / 0-)

    "Never trust a rich man when he offers you a truce."

    by KibbutzAmiad on Fri Jan 29, 2010 at 04:31:26 AM PST

  •  Great one liners (2+ / 0-)
    Recommended by:
    Angie in WA State, KibbutzAmiad

      it is insane in this day and age, just as you lay it out.
      The sympatheitc people in Congress, and there are some, need just the sort of one liners you have written here to get this across.
      i hope you'll forward your story to people like Alana Grayson or someone else. At least it will make a You Tube moment and possibly help the cause.
      best wishes, best of luck

    "America is ruled by the moral philosophy of the dollar." Leon Trotsky, New York, Dec, 1916

    by runningdoglackey on Fri Jan 29, 2010 at 04:41:58 AM PST

  •  heartbreaking (3+ / 0-)

    This system is absolutely brutal, and preys unmercilessly on the weakest among us.  

    Does Will have any contact with his family?  Would they be willing to pay for the test?  It sounds like the least they owe him, if for no other reason than it might discover a genetic flaw shared by other family members.

    Letters to Congresscritters are a long shot, but in an election year, they occasionally intervene in situations that provide them with a good human interest story for their stump speech.

    My best wishes to Will, and kudos to you for being such a great friend and advocate.

    Keep us updated.

    There is no snooze button on a cat who wants breakfast.

    by puzzled on Fri Jan 29, 2010 at 05:28:31 AM PST

    •  Thank you. (1+ / 0-)
      Recommended by:

      I don't think this test can be afforded by individuals, generally; it sounds as though we are talking obscene amounts of money.  He has some contact with his family.  I will try the congress pressure route.  I wish I knew someone in the National Institute of Health - that would be helpful indeed.

      "Never trust a rich man when he offers you a truce."

      by KibbutzAmiad on Fri Jan 29, 2010 at 09:45:26 AM PST

      [ Parent ]

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