So the hubby comes home tonight and opens his mail.

And now we know the details.

To all those who think employer-based healthcare plans are the pure and only true path to medicine? Given my medical history, insurance is a subject close to home here.  Are you sitting down?

My husband and I are celebrating our 30th anniversary this summer.  Thirty years ago, with both of us having grandfathers on the political scene in DC for decades, they knew everybody, they had us invite everybody to the reception, we sent out 500 invitations and 500 people actually showed up! We were standing in that receiving line for three and a half solid hours with no breaks in the flow of humanity, most of whom my new husband and I didn’t know, all these people taking the time out of their lives to come shake our hands and wish us well.

We solemnly promised our own children we would never do that to them.

I guess one could say now that we had a lot of witnesses, having no idea we might someday need them. (One thank-you note, on the other hand, was returned two months after the wedding as “recipient deceased.” That was fast. We might be in trouble here.)

My husband’s employer, a Fortune 500 company, now says we must produce our marriage certificate, and fast, or they are cutting off my medical insurance on the assumption of fraud.  They are doing this to everybody.  We claim John is our son? We’d better produce the birth certificate and prove it, and his school transcript, too.  We have to order the license or the birth certificate from the states they happened in? Oh, those states are furloughing workers and are weeks or even, in California’s case, months behind on all paperwork?  So sad too bad, you’re out.

It took California over ten weeks to process my auto registration payment, and that’s when they were in effect getting paid money by me to do so, and not just some nominal fee.  Okay, yes, we have the kid’s birth certificate, but not his transcript.  And what of all the people who don’t have a copy on hand for their kids?  Or of their marriage certificate?

I so much want to ask the CEO, whose own insurance, I am sure, is in no way imperiled: exactly what kind of corporate culture do they think they’re trying for here? Are they familiar with the term meta-message? Could you shake each employee’s hand, look them in the eye, and convince them you were wishing them and their families…well?

My own grandmother, ratting someone out! Not that I want to give anyone ideas.

Note that Strom Thurmond is famous both for his record filibuster stalling the Civil Rights Act of 1957 and for how very wrong he was on that issue–he made it appear *more* wrong by what he did, by how he frustrated his country as well as his fellow senators, and he never got completely away from the image he gave himself by doing so.

Okay, now, a word on Massachusetts:  they elected a charismatic, good-looking guy who knows how to throw a zinger given a chance. Tip O’Neill of Massachusetts once famously said “All politics is local.” I would add, “and of the moment.”

So here we have that lost 60th vote–but it’s a Republican and he’s from Massachusetts, representing a whole lot of Democrats. He knows he has to keep them happy if he wants to keep that plum job.  He knows he has to work with the other party.  In today’s severely divided Congress, this is a good thing. He also happens to have been for the plan in Massachusetts that the one in Congress is trying to improve upon. (It ain’t perfect, but we gotta start somewhere.)

Back when I was in college, I was at my grandparents’ home and somehow a cousin asked Gram a question re their political life back in the day; usually, those got directed at Grampa. But he wasn’t in the room just then.

My very proper grandmother, whom I’d never heard speak an ill word towards nor about anybody in any way ever before that moment, looked suddenly like she’d kept this one to herself for far too many years. It was just too much. The truth had to be told.

The subject was that record filibuster.  Passing that Act was the right thing to do, but Thurmond was having none of it. As long as he stayed on that floor, reading the Washington DC phone book, or, famously, his grandmother’s biscuit recipe, then the floor was all his.

As long as he didn’t step away from it.

And what would limit that?

“Strom Thurmond had a catheter under his pants!” exclaimed Gram.

(Typing fast, I’ve only got two minutes…)

Wha-a-a-t! That’s not supposed to…! I just put that in there!

Context:  Blue Cross helpfully said there were no deductibles on ileostomy supplies this year. Given our $10k deductible and a no-insurance catalog price of $995/month, that was a huge relief. They don’t tell you the fine points during the November enrollment period, nor do they answer the questions they don’t want you to know to ask.

So I was going, oh good.  And then they said that oh by the way that one month supply that just shipped, same monthly amount as ever, was, as of this year, to hold me for the quarter.  Wait, *what*!  Are you out of your MINDS?!

And today, how stunningly bad an idea that was was staring hard at me.

It’s okay. My doctor’s office is on it. (But why should they have to be?)

Michelle was sitting in a cozy spot on this cold, rainy day.  First time I ever saw a bluejay shaking itself off like a dog, or a very soaked squirrel, but I don’t think either would have cared for an offer of a hairdryer. Brrr.

Wrapped up in a blanket, hot mug of cocoa on the arm of the chair, laptop propped up on the other one, safe from all ills.  It cheered me up just to look at her.

I plunked down at her feet. “Can I growl?”

She looked at me. “Okay, you got one minute of whine.”

“Stupid bag burst.”

“Oh,” wincing.  She thought about it a moment.  Then she threw her arms out from under her blanket in a magnanimous, wide-open gesture, and granted me, “For that, you may have TWO minutes of whine!”

We both burst out laughing, and that was the end of that.  Hey, Michelle–you’re a good one.  Thank you.

(Massachusetts voters:  60.  It’s all in your hands tomorrow.)

A stunning item in the Newsweek issue that arrived today:

They write about the Cleveland Clinic, showing the various ways in which it has cut costs while improving patient outcomes and how it hopes to be a model for ways in which the delivery of healthcare could be reformed.

But there is one major problem they can do nothing about.  They describe the clinic’s clerks.  Picking up the phone to deal with the “thousands of different health plans from the hundreds of companies all over the country” and getting “put on hold like anyone else who calls an insurance company.”  Industry estimates, they say, are that the average cost of handling a phone call is $3 to each party. “This is the hidden cost of competition…”

So, one might wonder, reading that, how many phone calls are there per case?

What dropped my jaw was what they said next: there are 2,000 doctors at Cleveland. They have to keep 1,400 clerks to deal with those companies. And they know, their CEO says, that the insurers have just as many people working on each of those cases, doing everything they can to examine them.  And then if they can in any way they will deny or at least delay each claim for as long as possible.

Which is one big reason why the overhead for private insurers averages out, Cleveland Clinic’s CEO says, at 29% vs. Medicare’s 3%.  (As an aside, I have read that the Blue Crosses of California run at about 50%.)  That’s just on the insurers’ end in terms of the lost money that could have been spent on actual care of human beings in actual medical need.

Cleveland, it should be noted, told insurers what its average maternity cost was and offered to simply charge that average fee per baby delivered to each, freeing themselves and all those insurance plans all the costs of all that wrangling and nitpicking.  Spend that premium money on the patients instead! Please!

Not a single one took them up on it.

We need a public option. Now.

The Rooster is rocking on. Slowly but surely, despite a day of a thousand distractions and things needing doing. And by the way, Mr. Stewart? Nice catch.  (Re that link: 1. Fox is unembarrassable. 2. Our President honoring our veterans. 3. The Muppets singing “Ode to Joy” in meep meeps, and a school in Massachusetts that has banned the nefarious word “meep.” Sometimes you can’t make this stuff up.)

I’ve been trying to be an informed voter and have been spending a fair amount of time trying to learn more about our current health-care system.  All facts and figures here via Google.

In California, Blue Cross was allowed to be changed from being a not-for-profit to being for-profit in the 90’s, with a domino effect on other states.  Blue Cross covers roughly one in seven people in California.

As an aside, from North Carolina we read this from three years ago, with more recent figures hard to find online somehow:

“Aetna CEO John Rowe had total compensation of $30.6 million and Cigna CEO H. Edward Hanway received $12.3 million. That includes millions of dollars in stock compensation. Meanwhile, the president of Cigna HealthCare of North Carolina made a total of $279,526 last year.”

You catch that?  $279, 526.  Go Cigna!  So much for the idea of needing to pay millions to attract top talent.  Larry Glasscock, BBA Cleveland State, graduate school NA, was CEO in ‘06 of Wellpoint, which owns Blue Cross in California and a dozen other states. According to this, his total compensation that year was $52.4 million.

My daughter’s premiums, had Blue Cross accepted her, would have been $133/month as a young single woman for a plan without maternity benefits. Let’s round that up to an even $1600/year.

Let’s picture, for a moment, how many people would have to pay that premium for one year while requiring absolutely zero in medical pay-out, in order to sustain just that one CEO salary.  Just for that one executive.

Three million, two hundred seventy-five thousand people.  Paying that premium faithfully, month by month, and not going to the doctor once. Not even getting so much as one flu shot in 12 months.  Over three and a quarter million people.

And the CEO’s claim their pay has no influence on the medical care of their subscribers.

As for the town hall talking points and the obscenely defaced pictures of our President that are beneath each and every one of us, the screaming and the shouting, the attempts to silence all discussion of changing any part of this system–

–Remember the Watergate line.

“Follow the money.”

‘Cause there’s a whole lot of it (that’s for lobbying in 2009, so far) that sure isn’t being spent on taking care of us.

Pardon another rant. I do try to keep them to a minimum. Ooh, looky, the baby alpaca stole is done! (Did that help?) Bluejay shawl pattern, three repeats plus an extra stitch each side, cast on 36.

We were sure it was coming. But still.

Remember my saying insurance companies look back through your records up to 20 years to look for something to deny you coverage over?

Our daughter aged out of ours and we’ve got her on COBRA while we can, at nearly four times the rate of private health insurance.  Same company, same coverage.

They denied her attempt to get her own policy, in part because she had a) a cataract sixteen years ago as a young child (which she fully disclosed) and because b) she had the surgery for it.

Wait–what?!

The note from the insurance agent said to try again if we keep up the COBRA the full 18 months it’s good for: by that point, the insurance might be required to take her on.

Might.  If.  If.  If healthcare reform happens. If it does, my normal, young, healthy daughter will be able to pay premiums and help support the system. If it does not, COBRA will end, we can’t cover her even with an inflated price, and she will have no coverage.  Should anything major happen to her that would keep her from working, she will have no choice but to be a burden on the taxpayers even though that’s the last thing she wants to do.

Note that our premiums didn’t go down in the slightest with three kids aged out.

I’ve been debating writing this all day.  It would be far more fun to talk about how cool Karin’s yarn is starting to look in my new project. And I do try not to go on and on on such things.

But I think this is compelling, and I think it’s terribly important. I read this article today, thanks to Lene: about the executives at the nation’s major health insurers admitting Tuesday before incredulous members of Congress of both parties that yes, it is true: there is a list of about 1,000 expensive medical conditions which, if you have, and if you have private coverage (ie, you’re not protected by the laws governing HMOs about pre-existing conditions) they will scour your medical records as far back as 20 years looking for a reason to drop you. Something, anything, you didn’t disclose on your application.  And they will find one.  Some have whole departments set up for this and give bonuses and positive performance reviews to their employees who drop expensive patients.

One person’s doctor had once noted that he had gallstones but didn’t mention it to his patient. When the guy later found out he had cancer, his insurer canceled him for fraud for not disclosing what he didn’t know.

This was not an isolated case; this is simply how they conduct their business and they freely said so. They told the congressmen that it had saved them $300 million over five years.

I recommend that these lovely individuals put a Bob Marley cd on and go read Charles Dickens: “Business? Business! MANKIND was my business!”

Note that in California the insurance commissioner proposed fining one of the Blue Cross companies $12.6 million. And then did not do so.

There is a case underway, finally, in which the insurance company did not notify a couple they were considering them for rescission during the period during which the wife could have switched their insurance to her employer’s; then, after her husband was in a car accident, which, as I read the article, the company apparently knew about, they continued to collect premiums from them.

Until the husband submitted medical bills that were more than that monthly payment.  And then they dropped the couple and refused to pay a dime.

All three executives said they would continue their policy of rescission regardless of whether the insured had knowingly lied in filling out the application or not. They said it keeps their costs down.

You got a problem with that?

With apologies to Paul Simon (and an extra verse added by special request of the peregrine group)…

The problem is all inside your wings, Clara said to Kya
The answer is easy if you practice, and eventually…
I’d like to help you in your struggle to fly free
There must be fifty ways to leave your louver.
Fifty ways to leave your louver.

Dive out of the way, Jose. Set a flight plan, Esteban. Watch your Clara, Tierra. And set yourself free.  Look and fly clear, Veer. Try it today, Ilahay! Just hop off the ledge. Fledge. And set yourself free.

The watchers said it grieves us so that Carlos went astray
We wish there were something we could do, to make him show again
But Esteban is here. A peregrine papa too, now, teaching,
Fifty ways to leave your louver.  Fifty ways to leave your louver.

Dive out of the way, Jose. Set a flight plan, Esteban. Watch your Clara,
Tierra. And set yourself free. Look and fly clear, Veer. Try it today,
Ilahay! Just hop off the ledge. Fledge. And set yourself free.

Glenn said it’s really not my habit to intrude
But the more I see you’re grounded and your directions misconstrued–
Don’t want to box you in. But at the risk of being rude
There must be, better ways to leave your louver. Better ways to leave your louver.

Dive out of the way, Jose. Set a flight plan, Esteban. Watch our Clara, Tierra. And set yourself free.  Look and fly clear, Veer. Try it today, Ilahay! Just hop off the ledge. Fledge. And set yourself free.

Tierra said why don’t we all just sleep on it tonight
And I believe in the morning, we’ll begin to see some flight
And then Veer kicked her. And she realized, they probably were right
There must be, fifty ways to leave your louver.
Fifty ways to leave your louver.

Dive out of the way, Jose. Set a flight plan, Esteban. Watch our Clara, Tierra. And set yourself free.  Look and fly clear, Veer. Try it today, Ilahay! Just hop off the ledge. Fledge. And set yourself free.

———–

A side note. My son John got T-boned by someone speeding fast, totaling both cars. He lucked out in that his passenger wasn’t hurt and only John’s shoulder got reinjured: it was operated on after a high-school wrestling team injury a few years ago.  He hurts, but oh goodness.  Thank you dear God for saving the life of my child and the others.

And of course, since he’s not currently a full-time student while on a mission for the Mormon Church, our insurance won’t cover him even though we pay the same premium as before he left. But that’s just noise at the moment compared to what matters.

Remember when the employee of Caremark, the prescription distributor my insurance company contracts with, told me they weren’t sure they wanted the liability of selling me my prescribed Humira?  At a time it looked like nothing else would keep me alive?  I wanted to say to them, all drugs have side effects and if you can’t handle that simple fact of life, what on earth are you doing in this business?  And why do you have any say whatsoever?  You’re just a supplier. My insurance has (FINALLY!) approved that Humira.  It is approved by the FDA for the disease I have.  Send me the flippin’ med, fer cryin’ out loud, since it’s one I cannot pick up at a drugstore and cannot do anything about on my own.

And we all know how that one went. Nada, despite frantic phone calls from us, from my doctor, even from that Caremark employee’s secretary responding to me by walking around the floor trying to find where that woman went so she would finally take my call again and do the right thing.

And then my readers saved the day by bombarding them with messages till they not only caved when the weekend was over, but they actually grovelled.  Which was a little too satisfying for my own good.

So. On the Sunday of Memorial Day weekend, as I’ve written here, I was in Urgent Care again in great pain with a new flare, and one of the things the doctor I saw did was to prescribe me Zofran.

When my Crohn’s flares, I barf.  I never did once during all my pregnancies and I used to pride myself on having an iron stomach. Shows you what I knew.  So.  It is somewhat unusual for Crohn’s to cause barfing, and I can assure anybody that thank you, I’d prefer to be normal on that one.  But all the iron-stomach thinking and determination I’ve tried gets me nowhere these days: in the hospital, they had to keep me on two different high-powered IV anti-nausea meds at a time pretty constantly.

I could draw you graphic pictures of what I do on Phenargan, the entry-level med. Let’s not.

Based on all that, the Urgent Care doctor prescribed me Zofran instead, and rightfully so.

Which the insurance company denied. And not only denied, but since it was a holiday weekend, they had nobody on staff to even begin to appeal it to to get me through the long weekend. The doctor filling in for my Dr. R. reiterated to them a few days later my need for that med; with my very low blood pressure, barfing is an emergency and I need to have access to it.

I got a letter Saturday. Not from Blue Cross, my insurer, but from Caremark, who, like I say, they contract with, and who my local pharmacy had to get the okay from.  And I quote:

“The request was denied for the following reason:

The patient is not receiving moderate to severely emetogenic chemotherapy, total body irradiation or fractionated abdominal irradiation. The patient is not less than 18 years of age with a diagnosis of gastroenteritis and dehydration.”

I don’t have cancer so go ahead and barf. Nice.

And we wonder why the insurance companies don’t want the accountability that would be a natural part of the competition of having people having a choice of a government plan vs. them?  Right now, their only accountability is done legislative piece by piece, state by state, as outraged people get the one part of medical neglect they’ve been subjected to fixed by the demand of the law, while other parts wait for someone to suffer loudly enough.

My friend and hero Marnie took on a quarter million dollars in medical debt to adopt her kids, because at the time insurance companies were allowed to deny coverage to babies till they’d proven they were healthy their first month and forever if they weren’t.  That loophole was so egregious as to spark a Federal law outlawing it, too late for her.

We need a better system.  We need the will to do it. I’m not one demanding a single payer, but I do say, and loudly, that the insurance companies MUST be held accountable.  And the only way to do that, short of lawsuits that drive up healthcare costs and enrich the lawyers, is if they have true competition, which they do not now.  You know why they’re fighting so hard against the government providing an optional plan.  They’d have to change.

(Taken through the skylight.)

I haven’t mentioned the outcome before over here, but back in September–you know, back when the economy seemed okay, back when we didn’t have thousands in medical bills and co-pays, etc–we decided to go for an old and very large dream of ours: we signed the papers. We were going solar.  Bigtime.  (Now if the car companies would only fall in line so we can charge a car from the house.  Can’t afford a Tesla…)

And then we had to wait for our panels to be manufactured.  Others who had tax breaks elsewhere with a January 1 deadline got theirs ahead of us, and we were okay with that.  But finally we got word that our panels were ready to be delivered and installed.

…The week I got home after nearly three weeks in the hospital with my total-colectomy surgery.  With all those skylights, dead center in one bathroom and above the sink of the other (but with a strategic door at least). Oh joy. Hi guys.

The owner of the company, who knew, told each of his workers they had to knock on the door and ask permission each day before doing anything or making any noise up there, that they were not to interfere in my recovering.  I was quite surprised.  And each day, they got told thank you for asking, and hey, go right ahead.  Work progressed nicely.  (I wanted it OVER with!)

It was worth every moment.

My cousin Dan and his family who came over last night–turns out they got the same panels a year ahead of ours.   Cool.

Now, this being California in a drought, if only we could do the same produce-your-own with water.  Suppose we could build a pipeline and help out those folks in Fargo?

Humira was approved for Crohn’s in Feb 07.

A hospital would have to order each dose from Abbott too.

Blue Cross should have been set up to Fedex from Abbott to patients immediately in emergencies: Dr R ordered it Wednesday, I should have had it Thursday.

Being paid to deny or obstruct patients their return to full, productive, good health in the prime of their lives: what a bitter way to earn a living.  (And how are the benefits?)

To the lady at Caremark whose name I’m not putting here: how could you DO that? How could you just walk away for your weekend, wondering if I would die if you did? Of something entirely treatable.  Would you do that to your sister? Your mom?

To everybody who contacted Caremark, thank you. Once I get better, my representative will hear from me, and so will the Insurance Commission.

Now. I’m trying to get up the energy to take a shower. (So yes, today’s a little better.) We figured out a method: sit on an overturned dyepot, since our wooden chairs really wouldn’t do.  I like the idea.  Drumbeats of water to celebrate sitting up.  When I think I can for long enough.

(Ed. to add: I put this in the comments, but it’s important enough to put up here too: the woman at Caremark may be just as stymied and frustrated as me; we should pray for her in her job.)

Really bad day.

No Humira.

Finally at least got hair brushed. Pecking letters on laptop lying down.

Let me try again to finish this, I’ve been working at it in bits and pieces.  I can sit up for short times…

Dr. R’s nurse called this morning, and her voice was dancing: she told us to call Caremark at this number.

We did. Blue Cross had finally authorized the Humira.  But: Caremark had not.  They were running it past their risk assessment team. And they were still trying to decide what the billing would be, what the co-payment would be.

I was stunned. Were they afraid of the liability of selling me a dangerous drug? It IS dangerous, I know that–I read the experimental results and side effects re its near-cousin Remicade before I started that five years ago: it could cause MS.  Lupus. (Beatcha.)  But you do what you’ve got to do.

Richard assured me all pharmacies run all meds through a computerized thing so that one med won’t cause damage alongside another. Okay, but that doesn’t take hours.

Several hours later, they were still working on it.   I told the woman if there were anywhere we could drive to within 200 miles of the San Francisco Bay Area to pick it up, we would, that this was a life or death situation.  We knew it wasn’t something a pharmacy would have lying around on the shelf, but if they could somehow get it to one of their Caremark-affiliated pharmacies if it was a problem getting to us, then okay?… Whatever it takes!

She sounded very sympathetic.  She said they were waiting for “authorization from the doctor.” I called my nurse back, who exclaimed, “They *WHAT?*” And vowed to immediately take care of THAT problem for me!

And from there on out, all we could get through to was the voicemail of the lady at Caremark. The receptionist even tried her supervisor for me.  Forget it. It is after 7:00 pm Central time, the time they close up for the day and I assume the weekend.  They bailed on me.  There is no Humira.

And yet… It could well be that tomorrow morning it will be there at our doorstep; I just don’t know.  They wouldn’t tell me.

But in spite of all that mess, I have to add one other thing: yesterday, given how awful I was doing, I asked Richard and he called our friend Eric and in the evening, Eric came over and the two of them gave me a blessing, Mormon style.  A way of saying we have done what we can; we put it entirely now in the hands of God in our moment of need.

And in that blessing with their hands on my head, Richard felt impressed to say out loud something we both already knew: that family was praying for me, friends were praying for me, people I didn’t know were praying for me.  And as he said that

Okay stop a moment and collect myself here

As he said that, I got a sense of the tiniest glimpse of the love of God, at His joy that His children were looking out for one another and caring for one another, and that all those prayers and love and Thinking Good Thoughts, thinking beyond themselves to a fellow human in need, mattered.  And made a difference.

I knew then that I would make it to when this Humira comes, whenever that might turn out to be.

I want you to know I do feel your prayers.  I had a sense of each individual one said for me while I was being given that blessing.  It was powerful.  I can’t begin to describe…  You do much good, every single one of you.  And I am profoundly grateful.

And a little stronger today for it.

With the rising inflammation, my cardiac cough has made a comeback. Love that lupus, too.

My husband’s employer with great fanfare in November told us that they now had an advocacy setup for healthcare for the chronically ill among their employees’ families; someone to turn to if insurance was being difficult over a needed med.

My Dr. R called me today, frustrated.  Our Blue Cross PPO was resisting ok’ing the Humira; he was hoping I would nevertheless get a phone call from Caremark, their pharmaceutical distributor, today, saying they were sending it, and he made a point of telling me to tell them to FedEx it, to tell them it was an emergency. Well, yeah–and I’d pay the extra for weekend morning delivery too if need be in a heartbeat.

I decided to call that advocacy number; it was morning, when my energy is at very low ebb, but I needed to get the ball rolling.  I got an RN willing to answer health questions, but as for the promised service, well, I guess someone got laid off?  The nurse transferred me instead to the number at Blue Cross so I could go argue for myself.

And she sent me to the wrong number.

The person who answered didn’t know how I got there, but knew, after taking my identification, that I was in the wrong place and started to tell me that.  Lucky for me, I was too deaf to immediately get what she was saying, and in a voice that surprised me at how very thin I sounded, with no whine, no complaint, I simply stated a terribly-vulnerable truth: “I am trying not to die.”

That stopped her short.  I continued, “I need Humira.”

We spoke slightly, and I said, “I have Crohn’s. I’ve run through every other drug on the market. I need Humira.”  It took me several breaths to get that out; I guess morning was the right time to call after all.

Her voice softened a bit. She told me this was the provider line, that I needed to call the patient number on my insurance card.  I thanked her, and meant it; that little bit of improvement in her voice, no longer resisting me, was important to me.

I didn’t call the patient number.  Dr. R’s working hard enough and I was hesitant to go further to mess things up for him.  I was too tired to hold the phone any more at that point anyway.

But I realized I had been routed to the same number where Dr. R would have been passionately arguing for me.  And I knew I had offered this woman a stark moral choice: would she, on whatever level was available to her, advocate now for me?  There was no denying the truth in my words–I knew she felt them.

Or would she turn away?

It’s after 5:00 pm Pacific, and Caremark has not called me yet.