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!).

Friday, July 04, 2008

Robin Hood’s Evil Twin

Yes, I know it is pathetic. I’m a personal friend of Robin Hood’s evil twin, Robert Hood. He steals from the indigent and gives to the poor. How sad is that? Let me tell you the tale. Spoiler alert: no tights, no swords or bows and arrows, and most definitely no merry men.

To set the stage for our drama you need to understand that except when it comes to your BGLs; you really don’t want to be in the middle.

If you are truly, pathetically, abjectly poor—what we call indigent in the medical world—then you will actually get damn good health care. You’ll probably get Medicaid, which is arguably superior to the Medicare we give senior citizens who worked hard all their lives. Plus you’ll also qualify for Patient Assistant Programs, called PAP, from all the major Pharma companies. Because we got lots of poor people, hundreds of thousands of dollars of top tier name-brand drugs arrive via UPS at our little clinic every month.

If you are truly rich, well, then health care really isn’t an issue is it? You can afford the best insurance. And being rich you’ll probably have fewer health issues. Sad truth: the rich are healthy. They can afford to take care of things right away, they can afford proactive, preventive care.

Anywhere in the middle, you are probably screwed. No, not probably: definitely. Anywhere in the middle you are definitely screwed.

The worst spot to be in is working poor. You make $38 dollars per month (half tank of gas) too much to qualify for PAP, you don’t have insurance at all, and you can’t afford the drugs that would really make you healthy. We send you to Wal-Mart for $4 generics, but….

The next worst spot to be in is working poor with insurance. In theory you are covered, but deductibles, high co-pays, and tiered drug benefit plans literally make chronically ill patients choose between their health and keeping the lights on. I can’t tell you how many times I’ve have this conversation:

Me: OK, let me just review your meds with you real quick to make sure our records are up-to-date.

Working Poor Patient: OK.

Me: So we’ve got you on 45 units twice a day of Lantus, right?

WPP: Yep.

Me: Great, and you take Lipitor 40mg for your cholesterol, right?

WPP: Looooooooong silence. Patient is looking at his hands. Well………Um……..I haven’t been taking that for a while now.

Me: What?! Why the hell not? Of course, I know the answer that is coming.

WPP: I can’t afford it.

The first drugs the WPP’s drop are the ones with silent effect. In most cases, but not all, they’ll take their diabetes meds because even if they only check their BGLs every-once-and-while it doesn’t take long to see the effect that skipping your D-meds has on your body. But most folks, especially WPPs who can’t afford to pay for lab tests out-of-pocket, don’t check their lipids as often as they need to. The WPPs are also quick to drop their high blood pressure pills. It is easy to rationalize a high blood pressure: I just had a cup of coffee, my kid’s in jail, my wife left me for my brother (all real things real patients have told me).

Trivia question: what kills diabetics? If you said diabetes you are wrong and must now go sit in the back of the class. Unless you were sitting in the back to start with, in which case you must now sit in the front row. The correct answer is: heart attack. And the best way to keep that pale horse at bay is to keep your cholesterol and blood pressure down. I’ll bet you worry about what high blood sugar does to your kidneys, huh? Did you know that high blood pressure can actually be more damaging?

Let’s face it, the cards are stacked against us D-folk to start with, anything we can do to keep the rest of the body healthy in money in the bank. But life with out electricity and heat at 7,000 above sea level in the New Mexico mountains sucks too.

So back to Robert Hood (the evil twin). He’s my counter-part at a neighboring community health center. We are a lot a like, except that I’m older and a lot more handsome. Over coffee and idea trading recently he told me he was getting comfortable living in ethical gray areas. It started with an honest mistake. In filling out some insulin PAP paperwork for a patient that would need nine pens for a three month period he checked off nine boxes of pens. The UPS driver dutifully brought forty-five insulin pens: 36 more than the patient needed.

Robert hesitated about 1.6 seconds and dove into the grey water. He re-distributed the extra pens to his WPP folks. I’m guessing he’ll check the wrong box when he renews. And maybe on a few other patients too.

I haven’t gone that far. Not yet. Not ever. Damn this moral compass! But my boss once threatened to create “fake” patients to get the meds to real ones that need it but can’t get them. Of course, he was just venting. If he did that he’d lose his license and be publicly executed by hanging, no doubt.

Now I have to take a detour here and tell you about the pinto beans. My mother-in-law gets “commodities,” a food program for low income seniors. They get a variety of food stuffs each month, including one pound bags of pinto beans. Pinto beans in New Mexico are the same a rice in China: a ubiquitous staple. Quality pintos are pale tan. One of my jobs as spouse-of-Hispanic is to “clean” the pintos; a kitchen table sorting process whereby I scoop the good ones into the pressure cooker and discard the rocks, broken beans, and dark ones.

The commodities program was giving out bags of dark beans. My mother-in-law would not use them. Each month she put them in her pantry. The pile grew until there were 14 bags of these dark beans. She was afraid to throw them out because the local rumor had it that the authorities were keeping an eye on the dumpsters and that if people were throwing items away the government would stop giving stuff out. Hmmmmmmmm…one hopes the government has better things to do, but one never knows.

One day, after hearing her discuss various schemes to rid herself of the beans, I loaded them up and took them to my office to see if anyone would want them. Sure enough, we had folks who were hungry enough not to care that the pintos were technically sub-standard. By end of day one the beans were gone. Well one thing lead to another, word gets around a small town, and pretty soon my office was doubling as a unofficial, unapproved, uncertified, and probably illegal commodity re-distribution center.

Amongst our glucometers we now have cans of juice, bags of creamed wheat, boxes of pasta. Patients bring what they don’t want or use and take what they need. The needy helping the needier.

So Robert and I both work in an impossible world. Diabetes and obesity costs our state a million dollars a day but we failed to get a crappy one million dollars from the state legislature to run the state’s diabetes control and prevention program for an entire year. Don’t you think that investing 1/365 of the cost of a problem in preventing it is a good investment? Our national lepers….err….leaders…. espouse a “culture of life” while they let large corporations rape and pillage the populace. Greed rules the health care system, patients simply don’t count. We are at the edge of the tsunami that is the diabetes epidemic and not only do we not have any oars; the life boat is full of holes.

So I understand what Robert is doing. I applaud him, even admire him and I secretly wish I had the balls to do what he’s doing… but I’m too much of a boy scout to join the Hood brothers. As well as being a chicken and a sissy.

I stress out every day. I worry about my patients. It pains me to know what meds they need but to know I can not get the right meds for them. I actually use to be happy that I was diabetic. I know that sounds crazy. But I felt it was some sort of calling, the hand of God if you will, and that now my life had purpose. Some days I still feel that way. But some days I don’t feel that way anymore. So much misery has worn me down. I long to put my head into the sand, hide my face behind a camera and pretend that I’d never heard the word diabetes. I live it 24-7. I read about it on the internet. I write about it. I talk to schools, parents, and lawmakers about it. I work it full time. I go to trainings in the evenings and my days off. There is no escape.

But after talking to Robert I began to wonder if what worked for pinto beans would work for insulin. As meds changed, and dosages changed, folks sometimes had left-overs. So long as it hasn’t been opened we can give it to someone else. I put the word on the street: bring me your unopened bottles, your sealed vials, your extra needles and lancets.

Then I got an email from a reader. Her T-1 kiddo had gotten a pump and they had some left-over Lantus and some supplies. Could I use them or could my patients? Absolutely. I don’t use it myself, but plenty of my patients do. I emailed her our address. I was expecting a vial or two. Wrong. I got a huge box with 16 vials of fresh insulin (already half now in the hands of those who need it) and a second carton of boxes of pen needles, lancets, and other goodies. Surplus from the insured helping the uninsured. Awesome.

Rather than add life of crime to my Maalox moments and general insomnia, another idea came to me, thanks to the pinto beans and my reader. What diabetic doesn’t have three boxes of D-stuff they don’t need anymore? So, dear readers, to keep me and all those like me from resorting to joining the Hood gang, if you’ve got extra D-goodies of any kind cluttering up your closets, call your local non-profit community health centers, they’ll get your goodies into the hands of those that need them the most.

I drink coffee with Hoods, but I guess I’m more at home working with the Peace Corps, the Red Cross, and all those other folks that find a way to spread resources around. Still, when my head hits the pillow at night I briefly fantasize that I am a highwayman, stopping Pfizer, Merck, and Amylin trucks with an Uzi, loading up their supplies and slipping back into the night…..


Blogger Unknown said...

You are doing a great thing for diabetics. I can't find any local places to take my supplies, but I have been in touch with you so I know the supplies are going to be going to a great cause for someone who needs them. Look for a package from AL soon.

10:04 PM  
Blogger jlash said...

i know what you mean about the blurring lines. im an uninsured T1 right now whos living off strips mailed across the country to me from an insured T1 cousin of mine who has extra big prescriptions written with me in mind. hmm.

8:26 AM  

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