LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Tuesday, April 08, 2008

Rebels like me

The windowless basement room is filled with smoke. My pipe is clenched in my teeth. A bead of sweat trickles down my temple. I can barley make out Fidel through the blue-gray haze. He sits across the green felt table from me, hat pulled down over his eyes, a pile of red and white chips in front of him. He’s chewing on the butt of his cigar.

“Come on, deal the cards already,” snaps Lech curtly, stubbing out a cigarette. Dr. Joslin cuts the deck and rapidly flips cards out to the players; except for Che, who’s already passed out from to much tequila. Mohandas yawns briefly and picks up his first card. Thomas scratches his ear. I get the feeling he’d rather be writing than playing poker with the rest of us Revolutionaries.

Dr. J finishes the deal. I pick my cards up and unfold them in front of me, holding the hand close to my chest.

Ace of spades, ace of clubs, two black eights, and the queen of diamonds. Hmmmm….. something familiar and ominous about this hand…..

I’m sure that back when I was a Cub Scout my Mother never expected me to be a revolutionary. Neither did I. But desperate times call for desperate measures, and for us D-folk the desperate times are about to get a whole lot more desperate. There are dark clouds on the horizon. A storm is coming, and it could well sweep us all away.

High in corporate towers the lawyers for the insurance companies and the Doctors who have sold their souls to the devil for dollars are cooking up a new black magic. Behold the lowly test strip: now you see it. Now you don’t.

Like most shocks I receive, this one started innocently enough… My problem was pretty simple: I get free test strips for poor diabetics from the state; but I have too many diabetics. My allotment of free strips for the needy is based on the clinic having 50 diabetes patients. The problem is I have 200. Oh, right, I forgot, I got 50 boxes of strips per quarter before the budget got cut. Now I get 36 boxes of Abbott Precision X-tra strips per quarter-year for a thousand square mile area. Lovely.

I can’t even split the boxes up. P-Xtra meters use a calibrator strip. Each box has only one calibrator. I tried giving out half-boxes and making patients sign an affidavit in blood stating that they would return the calibrator once their meter was ready. No luck.

About two weeks ago we ran out of strips. To be honest, I was so out to lunch I didn’t even know we were low until the mob showed up at my office with pitchforks and flaming torches. I knew I had to do something quickly.

I called everyone I know. Solutions were few and far between. Conversations went something like this:

Me: Hey, its Wil over at Valley. How ya doin?

Colleague at neighboring health center: Overworked, underpaid. You?

Me: You know me, I love my job... but we’re having a test strip problem over here.

Colleague: Welcome to the club.

Me: Yeah, we’re out. Totally. Ideas?

Colleague: How big is your budget?

Me: Ummmmmmm….I think I’m allowed to buy two pens and one Band-Aid this year.

Colleague: You’re screwed.

After about a dozen of these conversations, I had a good cry, a stiff drink, and then I thought to call my Primary Care Physician. She actually had a possible solution for me. She’d found a source for “affordable” test strips.

I called the outfit and told them the sad tale of my rag-tag band of diabetics living in tents in the freezing weather of the current economy. And they made me a pretty good deal. As we are a non-profit we could have test strips for $9.50 per box of 50; plus shipping of course. That put them right at twenty cents a strip, which is actually moderately affordable, an 80% discount off of name-brand strips, and roughly equivalent to the amount most insured diabetics shell out in co-pays.

The catch?

I had to buy 100 boxes at a time. They would give me 16 meters free for every 100 boxes I bought. Problem was I knew we’d need a lot more meters right out of the gate to start switching people over. I told them I needed 50 meters and reminded them about the starving children of diabetics who were pan-handling on the street at that very moment. (I actually got hired here after sitting in front of the clinic for three months with a “Will work for test strips” sign around my neck.)

We’ll get back to you, was their answer.

Tick-tock…

Tick-tock…

Tick-tock…

Tick-tock…

Boop! (sound of email arriving) Hot Russian women are waiting for you! How does this shit get though the clinic’s spam filters?

Tick-tock…

Tick-tock…

Tick-tock…

Tick-tock…

Boop! An answer! Five bucks a meter. I’m good to go. I just need to come up with a little over a thousand bucks to make this deal happen. Hey, J, what’s the current street price of Lortabs? What? No. No, of course I’m not serious. Damn this moral compass!

So I go to my boss to convince her to find over a grand from some other department’s budget. My argument: it isn’t really a loan as much as an endowment. If we sell the strips at cost, every box we sell gives us the money to buy a replacement box. It is more like a one-time capital expense than an inventory.

“Wait a minute,” interjected the clinic’s executive director mid-pitch, “you’re telling me these little plastic strips cost a dollar? That’s criminal! How much could they possibly cost to make? A penny? Half a penny?”

Her blood pressure up, her moral outrage up, and her sense of basic patient rights insulted; she proceeded to start rattling off a list of people I should call, email, and write to. Yeah, right, I thought to myself, I’ll get right on that in all my spare time. My eyes must have glazed over because she stopped in mid-sentence and studied me carefully. “Oh never mind, I’ll do it myself! Just get me the facts and double-check the letter when I’m done.”

OK, if you want to spit into a gale….

And the test strips? Our medical director was called in and the decision was made to add the ten-buck strips to our pharmacy’s formulary. Now, just like Z-pack, lyvoxil, and metformin; test strips are now always stocked. Always available. Always 10 bucks. That helped my people. But not everyone else.

My boss wrote the letter. Then I emailed it to every one under the sun. Various colleagues and assorted power-brokers emailed back: “Yeah. Sucks. What’ya gonna do?”

Then our regional ADA advocacy director emailed. The problem was MUCH larger than I had even known. She told me that her office has been flooded with complaints that insurance companies are re-classifying test strips as Durable Medical Equipment. What the fuck is durable about a test strip, for crying out loud! Why would they do that? Well, DME coverage is usually at 50% on most policies. Now, instead of a med co-pay, diabetic patients are all of the sudden asked to pony up half the cost of the strips at retail.

Oh yeah. And on top of that, you have to reach your deductible before they will pay their half. Oh yeah. And on top of that, some polices have a separate DME deductible above and beyond the policy’s basic deductible. This is the black-magic I was talking about at the beginning of the post.

Boy was I pissed. I didn’t know what I was going to do, but I had to do something. My little band of our tribe is OK: for now. But this was a basic assault on the health and well-being of my entire kind.

Not knowing what else to do, I started by emailing Amy at DiabetesMine.

I didn’t hear from her for a day or two. Rio is on spring break (so no school runs). I took the week off, locked myself in the library, turned off the DSL modem—no point in tempting one’s self—and starting hammering out the first draft of one of the D books I’ve been promising everyone I’d write for months, and months, and months.

Yesterday evening I booted up and I had mail. Boy did I have mail. Amy posted about me. There’s the picture of one-quarter of my face that was the first photo Rio took under the headline “Local Heroes.” Holy crap!

I guess I’d better go to eBay and buy myself a cape. And maybe a heroic pipe.

All the emails boiled down to the same message: Read about you on Amy’s blog. I think it is awesome what you are doing. How can I help? Well, all except that email from my buddy Kerri over at SixUntilMe; who jokingly called me a Diabetes whack-a-mole for my propensity to pop up for a while, disappear for a while, and then show up again. Guilty as charged with extenuating circumstances. I am a DWAM; but just ‘cause you don’t see me on the internet doesn’t mean I’m not doing something for us D-folk somewhere else!

So last night I went to bed thinking: all these people want to help. This could be the start of a movement. What to do with all this energy? How can we make a statement that will make the rest of the world understand how critical this is?

As I tossed and turned, unable to sleep, part of an idea came to me. A vision formed in my head. A dollar bill with a test strip taped to it. A dollar bill with a test strip taped to it and a sticky note that says “I pay one dollar per strip. I need six strips a day to stay healthy and in control of my diabetes. Can you spare me two grand?”

I pictured hundreds, thousands, tens of thousands of envelopes piling up on someone’s desk. But whose desk? Who can help us?

If we send our dollars to the test strip makers they’ll have a good laugh and take our money and buy hookers and crack cocaine with it.

If we send them to politicians, once again, we’ll be getting thank you cards from the Hooker’s Union and the Columbian Cartels.

The American Diabetes Association comes to mind, but…. well it is no secret how I feel about them. In case you are a new reader, I feel they are more interested in razing, er, raising money from patients than helping patients. All they do in our state is sell T-shirts and host money-raising diabetes walks. They don’t help individual patients. They don’t have support groups. They don’t help at all. But still, they are good when it comes to things that require money, guns, and lawyers. Especially lawyers.

If we sent our protest to ADA, at least after our point was made and publicized the dollars would go to a more-or-less good cause.

So, fellow rebels with a cause. Check in via comments. Do like the basic idea? Who do you think we should burry in test strips and dollar bills?

Oh…and this poker hand doesn’t look too good and my back is to the door…

16 Comments:

Blogger Mary C. said...

I'm in with you Wil. I have a few suggestions of my own. We'll need a website that lays out all the facts. How many people are affected, how many kids, seniors, etc? Who's profitting? How much does it cost to make a strip? How much does it cost to cut off a leg? Every dollar should include the web address. Then, those of us who send dollars can post a picture of ourselves holding the dollars before mailing them. Hundreds of pictures of kids and adults and seniors holding our lives in our hands, begging for help. If we send all of the dollars to one person/place, they can be counted. We could set a target date - maybe D Day? The media would love that. By the way, what color do you want your cape?

5:07 AM  
Anonymous Sara said...

I am completely in! I have no ideas other than the ones you have suggested already about who to send it to, but let me know and I will be there (or at least my $ will)!

Don't forget the message boards too! There are thousands of diabetics there too!

7:11 AM  
Blogger Araby62 said...

Hillary and/or Barack? It's good campaign fodder, if nothing else. Sorry to disappoint the Other Side, but I don't think McCain gets it.

Seriously, though, maybe one of the national media types might be the best. I'm thinking 60 Minutes or Lou Dobbs or someone/thing else high-profile. If it gets on the radar, something might be done...

8:33 AM  
Blogger Penny said...

I'm in. I'm with your last commenter. I think someone high profile would be better. Someone that could get media attention.

It's a great idea. But, do we have to tape an unused test strip to the bill? Then I'm out 2 bucks.

12:52 PM  
Anonymous Anonymous said...

Wil, you are a gift from God. I don't know how we'll do it, but we will. WE WILL!!!! My husband and I are both T1 and we recently lost our insurance. Welcome to reality. What used to cost us $40 a month now costs us around $250. That doesn't include the $102 per bottle of novolog for the pumps. He test about 4 times a day and I am controling myself with 10 tests a day. I can easily go higher. I am going to think hard about this. I can't wait to see what we can do.
jessica

4:17 PM  
Blogger Laura Williams said...

This is definitely a case of a picture being worth a thousand words. I'm not sure you'd even need to send the actual money - photos of this idea, personalized for thousands of people could be just as effective.

There's a lot of voices to tap into here, and I hope you find the right ear to direct them to. I've posted a quick pointer to this post over on my blog, to draw a tiny bit more attention.

7:23 PM  
Blogger josl said...

wil, i'm a T-1, just graduated college, lost my insurance, and am having a crappy time finding a job with benefits...not too many people are hiring with the economy these days....but as soon as i run out of my saved up supplies, not sure what i'll do. thanks for fighting man.

11:39 PM  
Blogger CALpumper said...

Wil my dear man, you know I am on board!!!!

I will try to think of ideas but I laughed so hard envisioning myself wearing my Raise Your Voice! t-shirt with a dollar attached and a used strip with a post it note, walking around my area. Oh what a site! Maybe for now I will do a picture.

I will most certainly get back to you if I can come up with something better. Btw, I think a blue cape would suit you. Not sure why....

11:00 PM  
Blogger Lora said...

Wil--How about a "fake" dollar bill? One that's customized with the message?

When they were going to cancel the TV show Veronica Mars, some designer came up with a fake bill that said "Veronica Mars is smarter than you" (related to an episode) and made that bill available for download. Thousands of fans downloaded it, printed it out and mailed it to the head of the network.

Maybe someone can design a dollar bill with the message already on it and it can be sent to a bunch of different sources. Fake dollar means no crack or hookers...

5:19 PM  
Blogger Albert said...

hmmm interesting idea... I like araby's suggestion. we'd need to find someone how is somewhat accessible and open to change... we believe in... heh.

btw, if you need help finding affordable strips, I can definitely help you there. Shoot me an e-mail and I'll help you out.

11:12 AM  
Blogger Mary C. said...

I'd like to suggest we ask Rear Admiral Kenneth P. Moritsugu, former Surgeon General of the United States and himself a type 1 diabetic, if he would be willing to be our "target". He's come to the last couple of Children with Diabetes annual Friends for Life conferences and is very approachable. He would definitely have both political and media connections.

6:28 PM  
Blogger Jonah said...

Figure out how to manufacture our own test strips, publicize the information, manufacture strips for ourselves and black market.
That's my half serious suggestion.

Seriously, they're more than a strip of plastic, but still! We should at least be able to make the non-machine ones (the ones that change color) for cheap.

8:09 AM  
Blogger nonegiven said...

How about every diabetic in the country put up a dollar to start our own nonprofit strip factory?
$20,000,000?

2:20 PM  
Anonymous jj said...

I don't think any of them get it, araby...sadly.

3:25 PM  
Blogger Jonah said...

Lee, it's been two months. Blog!

2:55 PM  
Blogger Mary C. said...

Happy Father's Day, Wil.

7:15 AM  

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