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[cancer] Field notes from Cancerland, miscellaneous edition - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-02-24 07:39
Subject: [cancer] Field notes from Cancerland, miscellaneous edition
Security: Public
Tags:books, cancer, child, fiction, friends, health, original destiny, personal, politics, seattle, stories
On being exhausted, albeit for good reasons

As previously mentioned, Friday afternoon I drove [info]the_child to Seattle. As a result of that, I exhausted myself and slept long and deeply Friday night. A familiar sleep, one I normally associate with healing. Yesterday Mrs. [info]bravado111 and I cooked through much of the midday, which was followed by an open house than ran about seven hours. A number of my Seattle-area friends dropped by. It was great good fun, and I loved seeing a bunch of people, but a lot of things hurt well before the end of the evening. Again I slept long and deeply last night. Again, a healing sleep. Today around lunch time I need to drive home to Portland. Sense a developing theme here?

A bit more on fiction from Original Destiny, Manifest Sin

A couple of days ago, I posted a bibliography of published short fiction from my novel-in-progress Original Destiny, Manifest Sinjlake.com | LiveJournal ]. Of course my Swiss cheese post-chemo brain forgot something. "Tom Edison & His Telegraphic Harpoon" was published in Weird Tales #345, June/July 2007. There may be another besides that, but I am having trouble sorting it out. Stoopid chemo brain.

The billing problem with my hospital

Remember my ten phone calls to talk to seventeen different people about my insurance company not being recognizing my oncologist as in-network? [ jlake.com | LiveJournal ] As of this past Thursday, I have now spoken to twenty-one different people, still without resolution. Friday's two amazing discoveries were [a] my health insurance carrier has now provided two, completely contradictory explanations for why they don't recognize my doctor is in network; and [b] my hospital's billing department has a "no transfer" policy, which means when you call back to follow up on a complex problem, you have to explain everything from the beginning to whomever answers the phone rather than being able to talk to the person who you were previously working with.

[a] is deeply annoying because it makes the problem very hard to solve when the problem definition keeps changing.

[b] I complained about to the hospital's patient advocate office. It's a deeply stupid policy. I was promised a callback from either the patient advocate's office or from the billing department, neither of which I have yet received. It occurs to me that the way around a "no transfer" policy is to call the office about once a minute until the person I want to talk to happens to pick up the phone, but this plan has its disadvantages in that the people I need to help me will not be kindly disposed to me ringing their phones off the hook. This is incidentally the first time in three decades of calling various customer service departments that I've ever run into this policy. Something I informed the patient advocate's office of in detailed terms. I'm sure it makes sense to some manager somewhere, but from a patient service point of view, this policy is deeply stupid.

This has gone beyond ridiculous. If the next round of phone calls doesn't produce resolution, I am going to open complaints with both the Oregon Insurance Division, that regulates insurance companies in the state, and the Joint Commission that manages hospital accreditation in Oregon.

Getting political

A number of people have suggested that I should try to reframe my experiences for a political audience, both in terms of attempting to place op-eds in one or more major national newspapers, and in terms of writing to senators and congressional representatives. While healthcare isn't really my core political hot button, it's certainly the life I'm living now. And the absurdities of the system are profound in their manifest illogic and cruelty. Put simply, we optimize to prevent fraud and protect profits, and in the process punish patients for being ill. So I'm going to be working on that. If you have experience with healthcare activism, or contacts with major national media and political figures, please contact me with suggestions or experiences that might be helpful.

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threeoutside
User: threeoutside
Date: 2013-02-24 16:26 (UTC)
Subject: (no subject)
Just one piece of advice: If you're writing to/for or addressing Congresscritters, use simple words of one syllable. Run your material through the Flesch-Kincaid test to make sure it's at about a 5th grade level, or lower.

I AM NOT KIDDING.
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martianmooncrab
User: martianmooncrab
Date: 2013-02-24 16:56 (UTC)
Subject: (no subject)
If the next round of phone calls doesn't produce resolution

I would suggest just doing it now, and saving yourself the aggravation.

When I was helping my cousin, I used the VA model, which is I went and stood in front of the person and said I would stand there until they fixed the problem. I know you really cant do that in person, but it is the most effective. Like going to the Insurance providers building and being seen in person. Regence had an office for just that reason in one of their buildings downtown.
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mlerules: TP kitty
User: mlerules
Date: 2013-02-24 17:31 (UTC)
Subject: (no subject)
Keyword:TP kitty
Very pleased to read your last paragraph, 'specially in light of section the second above. You're articulate and passionate and mad as heck. Just as you speak for those w/cancer, explaining and articulating the experience which others can then pass along to those who want and need to grok, so can you be a speaker for the ill re: the nasty process of getting care in our so-called "great" medical system.
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pilgrim3
User: pilgrim3
Date: 2013-02-24 20:27 (UTC)
Subject: (no subject)
Jay, give them exactly one phone call each Monday morning. In that phone call, ask to be immediately escalated to someone who can resolve it or your next phone call will be to the insurance commission and JCO (respectively). Phone calls and e-mails to local media (possibly Pro-Publica) and patients rights advocates will follow shortly after.
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andelku: Apu
User: andelku
Date: 2013-02-24 23:33 (UTC)
Subject: (no subject)
Keyword:Apu
I have a contact at NPR, but you'd have to record your op-ed and read it on the air.
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User: lindadee
Date: 2013-02-25 06:49 (UTC)
Subject: (no subject)
Have you seen the latest Time Magazine? There's a 25+ page article about hospital charges and their billing practices. ". . . declined to respond when asked . . . if the hospital thinks that sending patients who have just been told they are terminally ill bills that reflect chargemaster rates that the hospital doesn't actually expect to be paid might unduly upset them during a particularly sensitive time."
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