LifeAfterDx--CGM Chronicles

Smoke detector batteries

2012-01-24T13:49:00.002-07:00

Damn. Ambushed.

I didn’t even feel it coming. Of course. I never do.

But where was the frickin’ DexCom? It’s supposed to prevent things like this.

47 mg/dL flashed at me from the face of the Presto Meter.

Hello low. I haven’t seen you for a while.

I don’t know if it was the surprise, or the lack of sugar reaching my brain, but I just sat there like an idiot, staring at the number.

Rio leaned over to look at the meter. “Hey, there’s only two digits!” he said.

Then he jumped up, shouted “Hooray!” and bolted from the room. About 30 seconds later he came bounding back in waving a glucagon emergency kit, “I’ve been dying to use one of these for years!”

Fucking Christmas in January.

When Rio turned five I taught him how to use a glucagon ER kit, and he’s been dying to stick me with it ever since.

Lucky for me, his mother intervened first, with glucose fluid. Then a brownie, then potato chips (we can argue about optimum choices some other day). Then a bowl of cereal. Then crackers. The low was a stubborn bastard. I’m not sure how or where it came from, but it took almost 100 carbs to get my head above water again. And poor Rio didn’t get to use the glucagon.

Good thing, as it turned out.

About an hour later, my brain functioning again (at least as well as it ever does), we decided to review the somewhat obtuse inject-mix-pull-inject process of using the ER kit. That’s when I noticed the expiration date.

Oops.

My break-glass-in-case-of-emergency to save-my-ass medication had expired.

Two years ago.

Quick and easy diabetic meals

2012-01-15T12:22:00.000-07:00

Sysy of Girl’s Guide Fame emailed me the other day, wanting me to join in on an email-based “collective, constructive, and tasty” diabetic recipe exchange.

(((groan)))

I love Sysy, but I hate these email things.

The instructions said it should be something quick and easy that you make when you are short on time.

I actually have only one recipe that fits the bill:

Open microwave, insert box.
Check nutrition facts label.
Multiply carbs by severing size on box and enter result into pump.
Wait for both sets of beeps (microwave and pump).
Serve and enjoy.

Another year, another copyright

2012-01-01T00:00:00.001-07:00

A look back that a year that sucked… or maybe not.

2011-12-31T09:14:00.000-07:00

I, for one, won’t be sorry to see 2011 in the rear-view mirror. It’s been a difficult year, to say the least.

Just when, for the first time in years we could pay all our bills and breathe a little easier; Deb lost her job, my hours at the clinic were cut back, and one of the two University programs I worked for was shuttered. On top of that, I haven’t seen an increase in my salary in three years, but I have seen an increase in the cost of gasoline. And electricity. And propane. And milk. And eggs. And every other fucking thing I pay for. It seems like I’m working harder for less every day.

This year I had a protracted fight with my insurance company over my CGM which they have been covering for several years. I guess because they haven’t had to pay for an ER visit recently, they’ve forgotten how much money they save themselves by covering it.

I had a number of health misadventures this year, including crippling bone-pain from vitamin D deficiency, of all things. And I sleep poorly. When I sleep at all.

My 22-year marriage was cast onto the rocks by four separate major storms this year, but she’s a tough old ship (the marriage, not the wife) and she’d didn’t break up and sink. The storms? Some money troubles, some communication troubles, and some girl troubles—which invariably lead to wife troubles.

Our house is literally falling apart around me. Old mobile homes have a tendency to do that. Fully three-quarters of our windows are broken and their shattered panes held together and in their frames with clear packing tape. All the faucets leak and the roof sometimes leaks, but we’re having a severe drought, so you’d hardly notice that most months. Oh, and don’t walk around barefoot when a cold breeze blows, ‘cause it cuts right though the house. That’s OK, dFolk aren’t supposed to go barefoot anyway.

And then there were the computers. First the “big” computer (at the time the only one we owned) bit the dust, taking with it the backup external hard drive and two months of writing. The only reason I didn’t commit suicide right then-and-there was the fucking rat poison box didn’t have a nutrition label on it with the carb count. (Even when trying to kill ourselves, we type 1s can’t breakout of certain habits.) At that point, we decided that even though we couldn’t afford even one computer that we needed two. First, a sacred computer—a lovely little Gateway— for writing that only I would touch and use to avoid the software problems that are inventible with too many people using too many applications on too little machine; and a second one for email, web and porn surfing, and computer games.

That second machine has now been back to HP three fucking times and no one in the household has been able to get email, web and porn surf, or play computer games for two months. Never buy a Hewlett-Packard computer. I know I never will again. I could spend a whole post just ranting about that experience, but I won’t.

Is it any wonder that I drink too much?

But at least I do have a job. Well… three part-time jobs, actually. And for that I am grateful, as many in our nation are not so lucky. I’m exhausted, physically, mentally, and spiritually: But oddly, my creativity remains intact. I guess it draws its water from a different well. So that’s a good thing.

And… you know… come to think of it… a few other good things have happened this year. I did release a new book. And my book about CGM was converted to a Kindle by the folks at ShareCare. And a European publisher has picked up the Tiger book. And the Spanish version of Tiger came out as a Kindle, too. And I won a slew of book awards for titles both new and old. I’m now up to fourteen national and international awards for the four titles, but who’s counting. Oh. Right. I am. And I got a couple of cool new writing gigs including the every-Saturday Ask D’Mine column at Diabetes Mine (the New York Times of diabetes!) and the Diabetes Simplified column at the dLife supersite.

Oh yeah. And you know, I also wrote a number of articles for Better Homes and Gardens Diabetic Living Magazine. They publish only four times a year, so most of those haven’t even hit the street yet. But look for my name there. Oh. And in the upcoming pages of Diabetes Self-Management Magazine, too.

And, after my latest car was beaten to smithereens by my epic commutes and crappy roads, I finally threw in the towel and got a Jeep. It’s the most wonderful vehicle I’ve ever owned, hands down. Well, except for the gas mileage. But I’ve been able to rationalize that annoying fact away by balancing it with the fact that the Jeep has not once failed to get me home, to my door step, at the end of every day. My previous car left me walking the last half mile in the cold and dark waaaaaaaay too many times.

Oh, and I got a Twitter handle (finally). Not that I use it or anything. But now I’m cool.

And I traveled by airplane much more than usual this year, going to the first Med-T social media summit and the zillionth Roche summit. I also flew to DC to lobby for rural internet and to Palo Alto for the Diabetes Mine Innovation summit. All those trips were wonderful. I also spent time teaching in various parts of the state that I hadn’t seen before, so that was fun.

Recently, I got a call from one of my friends who insists that I be brutally honest, rather than polite. She made the mistake of asking how I was. There was a long pause. Then I said, “Well…” Where upon she made the observation that since she’s known me, my spirits tend to run dark at this time of the year. I’d never noticed, but I think she’s right. Maybe I have that seasonal mood disorder thing.

Oh. And I shouldn’t forget that not a day goes by that I don’t help someone with their diabetes. Sometimes one-on-one in my office, sometimes by email, or sometimes in ways I only learn about months or years later when someone tells me that something I wrote had a positive impact on them. And that, of course, is why I write.

OK. So maybe it wasn’t such a bad year, after all. Still, I’m not sorry to see 2011 in the review mirror and I’m now looking out my windshield, looking forward to seeing what’s in store for me in 2012.

Holiday haiku:

2011-12-22T12:21:00.002-07:00

Don’t test
Depression avoided, eat
drink, be merry

I love you guys (and maybe the girls a little bit more)

2011-11-09T06:00:00.010-07:00

The sheet of paper was slipped under my door when I wasn’t looking. It looks like a ransom note from a cheesy movie, the message made up of letters of different sizes and fonts cut from newspapers and magazines, and pasted onto a sheet of yellow paper from a legal pad.

It reads: “Write a post for diabetes blog day. Or else. PS: I know where you live.”

Ah. It must be from Gina.

She’s doing this whole scrapbooking diabetes project for D-Blog Day, which is today. I told her I don’t scrapbook. Others must have said the same thing, because for those of us who are allergic to glue, or too drunk or too hypo to be trusted with scissors, we were given the following homework assignment: Write about why the DOC is important to you personally. And where should it go from here?

OK. That I can do. Because scrapbooking is going to totally get in my way of giving Mr. Hemingway a run for the money in the booze department.

So here we go. Now, in case anyone forgot, or never knew, I’m one of those adult diagnosed type 1s. And when I was diagnosed there weren’t any diabetes educators in my neck of the woods. And, as you know, type 1s are kinda rare. And my family freaked the fuck out and went into hiding.

And I was… Well, lonely.

And scared.

Of course, I read everything I could get my hands on, but back then, the books and magazines we had available to us were not much help. They were written by doctors and edited by lawyers. Oh, sure, I learned about how my beta cells became a smorgasbord for my immune system. I learned now I might go blind, if my kidneys didn’t fail first, assuming the hypoglycemia didn’t carry me away in my sleep.

And I learned how to smoothly blend my NPH by spinning the stainless steel pen between my palms. And I learned I had been testing at all the wrong times.

But nowhere could I find what I really needed. The human stuff. The companionship. The understanding. The support. Not even the little stuff like what the fuck to do with the blood left on your finger after you test.

Then one day I found Gina on the internet at a funky little place called Diabetes Talk Fest. I think I was like, I dunno, the fifth member. Maybe the seventh. I’m bad with numbers, that was years ago, and I can’t even remember last Tuesday. But it was super small back then and it was also super wonderful. There were others of my kind out there! We could ask questions of each other. We could share, we could vent, we could laugh, and we could cry.

I had found a home.

Which back then, was really fucking weird. It was my first exposure to a virtual community, long before our society became Facebooked and Twitterfied. Hell, back then most people didn’t even use their real names out on the internet frontier. I went by “Printcrafter,” as I was working as a printer for a high-end custom B&W photo lab.

Anyway, eventually, one thing lead to another and I ended up becoming one of the early diabetes bloggers; which meant that I knew the 12 other early diabetes bloggers, and we all read each other’s stuff. Sometimes I actually miss those simpler days. It was such a joy to read Scott and Six and Allison and Amy and all the rest. It was like having coffee with a best friend. Now, I barely have time for coffee at all, much less time for coffee with my friends.

And what friends they were, and still are! It was amazing to me that I could feel so close to people who never stood in the same room with me. But we knew so much about each other, our loves and hates, our fears and hopes, our joys and sorrows. We became a family united by our diabetes and I think we all thrived for it.

I know I did.

Eventually, most of us would meet in person, which was wonderful beyond describing, but my life-long friendships with this gang were born on “1s” and “0s” flying across copper phone lines and resolving as words on a flickering computer monitor in the dark of the night, when the humans that live under my roof had long since retired.

Of course, in time, this small group of friends, this small family, would grow. And then grow up, and become the Diabetes Online Community. And as the world changed so did we. We are still family. But we’re also strong in a new way. I see now that we’re a force to be reckoned with. Industry listens to us, respects us, and fears us. And that’s good. Next we must get the government to listen to us, respect us, and fear us. Because we speak for all our kind. We are the ambassadors.

But we must be more.

We must do more than advocate. We must motivate. We must agitate.

We must be the tip of the sword. Because if we don’t, who will?

Mr. Wil goes to Washington

2011-10-05T12:23:00.000-06:00

I knew from the start that it was a fool’s errand. An impossible mission. (Good morning Mr. Phelps, your mission, should you choose to accept it…)

So why did I accept it? Why did I go?

For many reasons. First, I believe in the cause. Second, lost causes are appealing in a perverted Romero-and-Juliet fatalistic kinda way. Third, I wanted to keep my whining license current (you’re not allowed to whine about things forever it you haven’t tried, personally, to do something about the problem). Fourth, I viewed it as an opportunity to learn. And lastly, I’m constitutionally incapable of saying “no” to a free anything, much less a free trip.

And it all happened so fast that the first anyone even knew about it was when I sent a tweet from the Hyatt Regency Capitol Hill, literally in the shadow of the nation’s capital dome. Yeah, I took the leap from garden variety advocacy to hands-on advocacy. One-on-one with the power brokers. Mono-y-mono. Somewhere in the back of my mind I was both proud of myself for taking action, while freaking the fuck out worrying: Does this make me a lobbyist?

It started off, as most things do nowadays, with an email. The email was from someone named Ali. I didn’t even know if Ali was middle-aged Arab male or a twenty-something California female (she turned out to be the latter when I met her a week later). Ali had gotten my name from a key mover-and-shaker at the University program I work for part-time. Ali was working with the Internet Innovation Alliance, an odd-ball group made of assorted non-profit and for-profit organizations had gotten together with the U.S. Cattlemen’s Association, the National Grange, and a pack of local Chambers of Commerce to fly a group of citizens to Washington D.C. to talk to their legislators about the importance and impact of broadband in rural areas.

Now, if you are a city person you may not know how big an issue this is for a lot of people. Well, for 26 million people, anyway. That’s about eight-and-a-half percent of the U.S. population that are rapidly becoming a technologic underclass. In my state it’s even worse. Twenty-two percent of our population doesn’t have a way to realistically reach the online world, either through a wall or through the air. I get teased a lot for having a dumb phone, but you know what? A smart phone won’t work at my house. In fact, my garden-variety cell phone only works in my kitchen and my bedroom, and only if a cloud doesn’t pass over the sun. Dropped calls sitting in a chair in my kitchen are a fact of life for me.

So anyway, I was asked to be part of this “Fly-In” to speak as the voice of healthcare for my state. To provide in-the-trenches perspective on how both broadband and lack of broadband impacts healthcare delivery. Ironic that I should be chosen for this ambassadorial role, given some of the professional problems I’ve had over the last few years with the large camp of medical folks who don’t want to let people like me without the sacred initials after our names play in the game. Sufficiently ironic that I was tickled pink. It took me two seconds to say yes and about 15 seconds to begin to worry if that was a smart thing to do.

Then I realized what a bad citizen I’ve become. I didn’t really have the slightest clue where my personal legislators stood on much of anything. In fact, I was a bit hazy on which congressional district I live in. Don’t get me wrong. I always vote, but at the same time I often find myself in the booth saying “What the fuck is a Commissioner of Public Lands, and what does he do, anyway?” as well as having no clue as to whether or not we should retain Judge So-and-So.

I knew I had to be a better citizen than that, if I was going to D.C. in person. So I hit the internet (I’m one of the lucky 78% of my state’s citizens who has broadband at the wall, even though I live remotely). I started at the official sites of our Senators and Reps to read their policy statements and learn more about their backgrounds. Then I went further a field. There’s an appalling amount of info on the web about the people we send to Washington, much of it with agendas both subtle and coarse (my favorite warped site was the one that evaluated voting records to show how frequently someone in Congress voted against the principals of the constitution).

I also double checked when each of them was next up for re-election.

After filling many pages of my notebook with facts, figures, and thoughts, I was ready. Well, more ready, anyway. Then I packed an overnight bag and agonized about which cuff links best matched my shirts and which of my three sport coats to take.

It was a brutal, two day, one night trip. I woke up a 4am to drive to Santa Fe, caught a puddle jumper jet to Texas, on to Baltimore, then taxi to D.C. Door-step to door-step my travel time was over ten hours. We had some night stuff to do on arrival, were to be on the Hill all day the next day, and then travel ten hours back afterwards. Yeah. Same day. As junkets go, I’ve been on better ones.

I decided to travel computer-free (wow, I heard half of you gasp from here), because I didn’t expect any free time to use it. When I arrived at the reception Hyatt Regency’s Capitol Room A & B , however, I was pleased to find a “Social Media” booth set up in the back of the ballroom, located conveniently next to the free bar. I chatted with the two young people running the booth. They had three laptops set up and ready to take me to Twitter or Facebook.

So, I don’t think I ever told you the story, but I’m sure most of you know I’m a Twitter Virgin. I only got a handle this summer after the Roche Summit, where I was apparently the only attendee that didn’t have one. Several people who I’m very fond of bluntly told me that they really couldn’t be seen in public with me any longer if I didn’t get with the modern world.

I’m still learning the ropes and most tweets still look like Coptic Greek to me, but a little at a time I’m starting to get it. The Fly-In event had a hash tag and the kids that ran the booth advised me on how to structure a proper tweet. They were even kind enough to log me back out without sending faux tweets under my name when I left the booth without logging off. In the morning they helped me again, and at the end of day they helped me get some early news tweets out about our delegation’s limited success while my peers where shouting at me about missing the taxi. I think I’ve doubled my lifetime tweet count in 48 short hours.

So speaking of peers, I didn’t travel alone. Four of us from our state went. One guy runs a food delivery service. People can order food from Mom and Pop local restaurants via internet and have it delivered for five bucks more. This guy’s company creates jobs both directly by hiring drivers, and indirectly by giving these small restaurants more business than they would otherwise have. His problem is that his expansion is limited by the lack of broadband in the smaller towns. We also had a woman who works on the training end of the internet, teaching folks in rural areas how to use computers and internet. Her two-year program was created with stimulus money and has trained 3,000 folks in my state so far, and still has funds to train 2,000 more. We also had a second healthcare person in our group. Damn. I didn’t get to be the sole voice of health for the state. Oh well.

Anyway, the welcome reception wrapped early, no doubt a combination of jet lag and free booze. Present were 165 people from 23 states. It was 10 p.m. in D.C., but my body thought it was only eight in the evening. Despite the long day, I wasn’t ready to call it quits. Most of my group had important emails to send and check and retired for the evening. I submit that when you’re somewhere as interesting as D.C. your frickin’ email can wait a day (I still haven’t checked mine this morning, I wanted to get this post written and out while the details are fresh in my mind). So what to do? I decided to walk over to the Capitol Building.

I hadn’t been to D.C. since I was a child. I remember the Lincoln Memorial, and the Jefferson Memorial, and my dad swearing about the lack of parking which had all been torn up for the building of the subway system. And that’s about it.

It turned out I was staying only about two city blocks from the Capitol Building and it was a lovely night. The dome is brightly lit, while the rest of the building rests in shadow. God help you if you are in a car, but on foot in the middle of the night you can pretty much walk right up to the building. Of course the DC cops with their machine guns were everywhere, but I wasn’t stopped, questioned, or hassled in any way. I was surprised how all the buildings in the plaza could be so massively over-scaled on one hand, while taking up a such a small collective foot print on the other hand. It takes no time at all to get from the U.S. Capitol to the Supreme Court, for instance. I guess our classic federal buildings are more correctly tall than large.

The next morning we were set to meet with our two Senators and two of our three Representatives. There was a minor cluster-fuck with the schedule and we had an hour and a half free. Again, most of my delegation were making important phone calls and emails from their hotel rooms while I forged off on my own.

Quick: You have one hour! What do you choose to see? Well, for me as a writer and author, there was only one logical choice: The Library of Congress. So I just went up and walked in the door. Of course there was an x-ray and a metal detector; as there is in every official building in D.C. Imagine me with my insulin pump, CGM, assorted emergency medical supplies, and my frickin’ cufflinks (very hard to put on while the shirt is on your body) trying to get through a metal detector. After five walk-through attempts the good-natured guards just “wanded” me and let me go my way.

I choose not to take a tour, but to simply wander around. The building is pretty, but a little baroque for my taste. And you can stand in a Plexiglas booth and look down at the circular research desks in the core of the library itself, the area made famous to most Americans in the movie National Treasure 2: Book of Secrets. But for me the high point was hidden in an alcove.

A super-quick history lesson, and then I promise I’ll get back to the main story. In 1814 the British paid us an… umm… unfriendly visit and among other things burned our national library. A broke Thomas Jefferson offered to sell his private library, an astounding 6,487 books, to the nation as the seed of a new library. After much congressional wrangling, the collection was purchased and became the genesis of the current Library of Congress.

Hidden in this alcove was a circle of high book cases, maybe 15 or 20 feet in diameter. Yeah. The original books. Thomas Jefferson’s library. (Note: the display is a partial recreation, as two-thirds of the original collection was destroyed in another fire in 1851; but fully 2,000 of the volumes I spent time with were Jefferson’s actual, original books.)

I arrived just as a tour group was heading out. I spent five or ten minutes alone with the Ghost of Mr. Jefferson and his books, walking in a slow circle around and around again. Gazing at the titles of books in English, French, Latin, Spanish… All beautiful hard-bound volumes. I don’t know how long I was there. Not really very long as I had scant time to spend. But it felt like a wonderful eternity.

It was a religious experience.

Books held in his lap. Books touched by his hands. Books read by his eyes.

It was wonderful. I yearned to stay longer. But I had an appointment with a United States Senator. Best not to be late for that kind of date.

Or did I?

One of the big unknowns, one of many things I learned on this trip, is that when you want to talk to your elected representatives, you may or may not get to meet the actual person. Often you end up talking instead to an aid of some sort. The higher the aid is on the totem pole the more likely your voice is to be heard by the Senator or Representative. Oh, and it also sends a signal about how important your issue is to the top man or woman on that totem pole.

First stop, after more x-raying, metal detecting, and educating security people about insulin pumps, was our state’s senior-seat Senator, Jeff Bingaman. We met in a postage-stamp sized conference room with Casey O’Neill, whose title is “Legislative Correspondent.” Casey is exactly 12 years old. Or at least that’s what he looked like to me. He was polite, earnest, took lots of notes and admitted to knowing pretty much nothing at all about healthcare or broadband access. His name is nowhere to be found on my list of the Senator’s staff.

Nuff said about where we stand.

Apparently, a somewhat more senior aid was to meet with us but at the last minute the impending implosion of the U.S. Postal system took this aid away. Later, one of our group ruminated on the irony that the Senator’s attention is on saving the Post Office rather than looking to expand broadband. Kinda looking in the wrong direction.

The Senator is not running again, so I had hoped maybe he could be convinced to do the right thing as he had nothing to lose.

I, apparently, still have a lot to learn.

Next we went down seven stories to Senator Tom Udall’s office. My research had indicated that he was likely our best ally and pretty clearly a friend of healthcare and broadband. However, the good Senator was having a personal encounter with the healthcare system himself that very morning. A big chunk of tooth had broken off at breakfast and he was in a dental chair getting an emergency crown.

I guess as excuses go…

In his place we got Kevin Cummins a “Legislative Assistant” and Stephanie Kuo, another Correspondent. I was beginning to see how the titles show rank. Kevin was on my key staff list. About in the middle. (There are also Legislative Directors, obviously near the top, Legislative Counsels, and “Aides” too. I’m not yet clear where Aides fit into the pecking order. I could probably Google it, but I’m too lazy.)

A quick run to the other side of the Capitol plaza took us from the Hart Senate Office Building to the Cannon House Office Building, with more diabetes education for the guards. There we meant with Congressman Ben Ray Lujan himself, in his office. He pulled a chair out from behind his desk and sat with us in a circle around a coffee table in the middle of his office.

It was a very different experience.

What did I say to him? I told him that I was pretty blessed. That I had good broadband at home, and that my clinic has twin T-1 lines. That we can do telemedicine with the University, but that was where it ended. Information can only flow between the University and the Clinic. We have no way to flow it beyond, to the patients. We have no way to get information from the patients back to us.

I showed him my AgaMatrix Presto meter. I showed him the USB port. I gave him five pages of full-color Zero-Click reports from my meter. He spread them out on the coffee table and studied the reams of data, charts, pie graphs, bar graphs, and line plots than can flow from such a simple device. I told him that if our patients had broadband they could email me these reports. That we could make therapy adjustments from afar. I talked about our 500 square mile service area and how hard it can be for patients to come to the clinic so I can download their metes. I talked about how diabetes, controlled, is harmless. How diabetes, out-of-control, costs us untold human suffering and millions and millions of dollars lost in amputations, dialysis, heart surgery, and blindness. Expanding broadband is cheap by comparison. A bargain.

I talked about health disparities. How the poor are already getting left behind. Especially the rural minority poor. I told him what I’d seen at the Stanford Summit and how I was coming to feel how much more our society is networked, and how much I feared that the rural poor are on the brink of becoming a permanent underclass, left behind as our society moves forward.

And he listened to all of us. And he asked intelligent questions. He asked for ideas. And either he’s one hell of a good actor, or he really cared. Or both. I also talked to him about the paralysis of congress. And he was upfront about it. He didn’t feel much of anything would get done in this congress. Too many people who like to thrive on saying no to everything are stalemating the process.

Broadband should be a non-partisan issue. It creates jobs. It reduces health disparities. It increases education. There’s something in it for everyone. But nothing is non-partisan anymore.

He told me that certain members of a certain party are firmly entrenched in the belief that they were sent to Washington with a mandate to never compromise. So I asked him, if to his knowledge, any member of congress had been elected with 100% of the vote back home. He laughed and said he wished some of his colleagues would think about that.

Twice the Congressman’s aids interrupted, gently, to remind him of other pending meetings. We spent a lot of time with him. And in the end he asked us for something. He said that facts and figures were great and important, but that the best ammunition for debates on the floor are human stories. And he asked us to send him human stories, about how getting broadband changes lives, or how lack of it impacts lives.

Did we make a difference? I don’t know. I doubt it. I doubt this congress will do anything beyond keeping the government limping along with eleventh hour last-minute actions. Congressman Lujan is hopeful for the future. He thinks, no matter who has the majority next time, it will be razor slim. He thinks that will force a return to negotiation. And I think that would be wonderful. We are a diverse country. We will never agree on everything. And we shouldn’t have to. But this “winner take all or nothing” paralysis that has gripped our nation has to go. We have to move forward as a people and craft a government that will be willing to take a little and give a little at the same time. To meet in the middle. To serve its diverse citizenship.

And as for me, even if I accomplished little for broadband, I got a lot out of the trip. At the worst, I can tell my grandchildren that I visited the heart of our republic in its darkest hour when our government could not function, and even fought over whether or not to help its own citizens who were victims of natural disasters. And at the best, I’ve been to boot camp for hands-on advocacy.

Hands-on advocacy skills I hope to hone and use again for diabetes advocacy in the future. Skills to make me a better and more involved citizen.

And five makes me an Ace...

2011-09-25T14:42:00.000-06:00

This just in: Beyond Fingersticks is a Finalist in the 2011 New Mexico Book Awards. That's the fifth award for the title. Winners announced in November at a swank banquet... stay tuned.

BTW, this means Fingersticks just out ranked The Born-Again Diabetic in award count, which is ironic, because to be honest, I don't think Fingersticks is my best work...

My son the anarchist

2011-09-22T17:26:00.000-06:00

I shouldn’t have been surprised. He comes from a long line of troublemakers and rabble-rousers. In fact, when Rio was about three years old, he was engaging in some sort of creative destruction when my mother, after watching the chaos for a few minutes, sighed and said, “Well, what else should we expect? After all, his ancestors were Vikings and Conquistadores.”

True.

But Rio is generally a pretty mild-mannered kid.

He’s now in the third grade. And not too happy about it, either. Rio doesn’t exactly hate school, but I think it would be safe to say he despises it, abhors it, loathes it, detests it, and generally finds it nauseating. But even worse than school is homework.

Now, I know what you’re thinking, What the fuck are they thinking giving homework to kids so young? Well they aren’t thinking at all. No child left behind removed thinking from American schools and classrooms, but that’s a topic for another day. Homework is a sad reality of modern third grade life.

Last year, before Deb was canned, it wasn’t uncommon for us to all be getting off the road from our various commutes a bit after seven in the evening. Then we had to make dinner, eat dinner, catch up on news. Like, oh, by the way, I got fired today. Homework half an hour before bedtime just wasn’t realistic. What? Oh. No. Not Rio’s bedtime, he doesn’t really have one. I was talking about MY bedtime.

Anyway, a significant excuse for poor parenting now removed, we are trying to take homework a little more seriously around here this year.

Most days my creativity is at low ebb at the end of the day, but sometimes we actually have fun with the homework. The other night Rio’s vocabularly words were: ledge, shear, valley, boulder, scout, and a few others I’ve forgotten by now. But I was able to spin them altogether into a yarn that involved Rio and I shimmying around the edge of a ledge above a sheer drop into boiling lava because he didn’t frickin’ scout the way in advance very well and… (of course we are acting this out around the premier of the kitchen).

But I’ve digressed from my story. On Monday, when I was home recovering from my adventures at the Stanford and Diabetes Mine Innovation Summits, he came bounding in the house after school, “Great news,” he announced “the copier is broken so there’s no homework.”

I looked him up and down and asked him if he was involved in sabotaging the copy machine. He crossed his arms across his chest, stared at me sternly, and emphatically announced, “I did not sabotage the copy machine. I don’t even know where they keep it.”

Tuesday the copy machine was working again and we did home work at the kitchen table, trying to multitask it with getting dinner prepared.

Wednesday, when I pulled up outside the house after my commute home from the clinic, Rio came bursting out of the house to tell me the good news that the copy machine was out of order again. Because his reaction was so funny on Monday, I asked him again: Was he was involved in the copy machine’s misfortunes? And again he denied any involvement. For the hell of it, I asked him, Well, would you sabotage the copy machine, if you knew where it was?

“Probably so,” was his frank reply.

But after some more reflection, he added that he really wasn’t entirely sure about how to go about sabotaging a copy machine in the first place, even if he knew where it was.

Shortly after dinner last night Rio announced a solution to the dilemma. “I’ve been thinking,” he told me, “I could probably just whack the copy machine with a mallet.”

It’s now late afternoon, and Rio and his mother just got home from school two minutes ago. I stuck my head out of the library where I’ve been working on this post. No back pack. He doesn’t have homework today.

Ut-oh.

I can just hear the call from the principal now…

Baseball bats, Charles Atlas, and drunken rodeo clowns: Modern medicine for diabetes

2011-08-18T16:20:00.000-06:00

The drawing, I confess, is worse than pathetic.

My student taps part of the doodle with her pen, “So this is the liver, right?”

Ah. No. That’s the pancreas. The liver’s over there.

“Oh,” she says. “I thought that was the stomach.” A pause. “I’m just not quite getting this yet.”

My drawing, clearly, is not helping. On the sheet of copy paper, crudely sketched in red ink, is my pathetic attempt at depicting the elegant internal structure of the human body. Yeah, Andreas Vesalius I’m not. I mean I know what I want my illustrations to look like, but they never turn out that way.

I’m teaching a class on insulin to the Promotoras at a neighboring clinic. We’ve gotten off on a tangent about other diabetes meds that need needles. I gaze at the mess I’ve drawn. A bubbly-edged blob, on the right, is supposed to be the pancreas. It looks more like a thought balloon from the Sunday funnies. Next to it is a basketball that was run over by a FedEx truck. Right. That was intended to be the stomach. Below that is a snake that was run over by the same FedEx truck. You got it. The small intestines. Off to the left is a much, much larger pathetic sketch that was intended to be the liver. It doesn’t help that in the interest of anatomical accuracy I’ve tried to draw in all the lobes. Running down the middle is a winding road that’s the esophagus. On the top, a large open triangle. The mouth.

There are various sweeping arrows connecting this train wreck, and strange nonsense words litter the page, “GLP-1,” “DPP-4,” “counter-reg,” and “ins.”

Geesh. No wonder she’s just not quite getting this yet.

I decide to give up on the drawing and fall back on my real strengths: Words. Story telling. Analogy.

So I made up this little tale (embellished slightly for the web):

OK, I say, let’s pretend it’s first thing in the morning and Gee-el-pea, he has a funny name because he’s not from around here, is getting ready for work. It’s important that he gets to work on time, ‘cause he has a very important job. He works as Supervisor of Digestion at the Type 2 Plant over in Foodville. When he gets to work he’ll be in charge of stomach speed, shutting down the liver’s production of glucose, and calling the brain on the intercom when enough food is in the system.

So, like I was telling you, Gee-el-pea is getting ready for work. He’s got his best Khakis on. He’s had his coffee, and right on time he heads out to the bus stop. And that’s where things go bad, ‘cause Gee-el-pea lives in a kinda rough neighborhood. In fact, poor Gee-el-pea is mugged at the bus stop. A brute named Dipfour jumps out from behind a dumpster and just beats the ever-living crap out of Gee-el-pea and steals his wallet. Lying there bruised, broken, bloodied, it’s all Gee-el-pea can do to crawl home again.

So what the fuck is Dipfour’s problem? Who knows? Maybe he’s on crack. Maybe he has an anti-social personality disorder.

But a week later Gee-el-pea has recovered and is ready to go to work again. The folks he works with over in Foodville have been worried about him, so they skipped up the yellow brick road to see the Wizard of Med, who prescribed a Louisville Slugger.

So Gee-el-pea puts on his Khakis, drinks his coffee and heads to the bus stop. Sure enough, the anti-social Dipfour jumps out from behind the dumpster again, intent on great bodily harm. But this time Gee-el-pea whips out the baseball bat and smashes Dipfour over the head with it. The brawny bully collapses onto the dirty sidewalk with a thud. Yeah. It’s every bit as satisfying as the revenge of the 90 pound weakling against the sand-kicking bully in those old Charles Atlas comic book ads back in the day.

Only this is a new century. And this is diabetes. So Gee-el-pea savagely kicks Dipfour in the stomach a few times while the burglar is down, and then spits in his face for good measure.

And that, my friends, is Victoza. It’s the incretin hormone GLP-1 with a baseball bat. Able to stand up to the counter-regulatory hormone DDP-4 thanks to Charles Atlas.

Oh. Wait. I forgot to tell you about the drunken rodeo clowns.

So, if you’ve never been to a rodeo, the clowns have a job I have no intention of applying for anytime soon. I’d rather have the night shift at the sewage treatment plant, thank you very much. The job of a rodeo clown isn’t really so much to entertain the crowd as to serve as human bait to distract super-pissed off bulls so that dazed bull-riding cowboys have a chance to stagger to safety after their eight-second ride.

But rodeo clowns also control the gates on the bull chutes. The idea is that once the bull-rider is ready, they yank open the gate and the bull storms out into the arena intent on bucking the rider off, and then probably goring him and stamping his head into the dirt for good measure.

What happens if the clowns are drunk? They open the gate early. Before the rider is ready. And things end badly.

In your body, DDP-4’s job is to stamp the shit out of GLP-1. After all, it is a counter-regulatory hormone. So it isn’t really the crack-crazed sociopath that I made it out to be. It’s the damn drunken rodeo clowns that are the real problem. They let the bull out of the shoot early. In dFolk, especially those of you with type 2, the DDP-4 gets out early, and wipes out the GLP-1 before it can do its job.

And, for review, what’s GLP-1’s job? Over in Foodville? Supervisor of Digestion, remember? In charge of stomach speed, and shutting down the liver’s production of glucose, and calling the brain on the intercom when enough food is in the system.

To understand how this whole process is supposed to work, we need to talk about Twinkies. Actually, it could be any kind of food, but Twinkies’ just happened to pop into my mind.

So when you eat a Twinkie, here’s what happens. As the sugar hits your mouth, red lights and alarm bells go off at digestion central. Insulin is released in those of your with functioning pancreases. GLP-1 is unleashed. It tells the liver to go smoke a cigarette and get a cup of coffee (in other words to stop releasing glucose for a while). Then it shifts the stomach into second gear, a nice digestive speed, and once enough Twinkies arrive at the stomach, GLP-1 picks up the phone and calls the brain to let it know the body has enough food. Its job done, like a poor male black-widow spider who just got laid, the GLP-1 gets eaten up by the DDP-4—the other player in this romance.

But wait a minute. What happens if the DDP-4 gets let out early by the drunken rodeo clowns? Before GLP-1 can do its job?

Let’s go back to the Twinkie and replay the scenario. The red lights and alarm bells still go off. GLP-1 is still released. But DDP-4 gets out at the same time and ambushes GLP-1 at the bus stop and GLP-1 never gets to work. So…

So no one tells the liver to go have a smoke and a cup of Joe. That means it keeps on cranking out glucose. Twinkie + sugar from the liver = twice the sugar.

But wait… there’s more.

No one shifts the stomach into second gear. In fact, it seems to be at highway speed. It’s emptying twice as fast as it ought to. And where does it empty to? Into the small intestines, of course. Interestingly, that’s where most carbohydrate absorption takes place.

So now we have Twinkie + sugar from the liver + sugar rush from the intestines. Three times the sugar we need.

But wait… there’s more.

No one telephoned the brain to tell it that the stomach really has enough Twinkies. And if that weren’t bad enough, not only did the brain not get the message the stomach has had enough, by now the stomach is empty again ‘cause it’s emptying so fast.

Can things get any worse?

Well, yes. Yes they can.

You all know what homeostasis is, right? The body’s system of input and counter input that creates a stable state? It’s like keeping the shower at the right temperature in a cheap hotel by constantly fiddling with the hot and cold handles. The body does this with blood pressure, body temperature, blood sugar (in non-dFolk), and a gazillion other things. The bottom line is: The body generally knows what’s good for it.

With one major exception.

When your blood sugar is high, you get the munchies. What’s up with that? When your blood sugar is high, the last thing in the world you need is more sugar. But it is what it is, and you all know it, because you’ve been there and done that.

So the final nail in the coffin here is that high begets more high.

Twinkie + liver sugar + excursion + empty brain + empty stomach = hunger pangs.

Hunger pangs = more Twinkies.

So many type 2s live in a metabolic state of constant starvation because of those stupid rodeo clowns. You can weigh 380 pounds, be eating like a horse, and still feel genuinely hungry all the fucking time.

The two possible solutions to this dilemma are to sober up the clowns (using a DDP-4 inhibitor like Januvia or Onglyza), or supersize the GLP-1 with a baseball bat (using Victoza or Byetta) so the native DPP-4 doesn’t stand a chance against it.

There’s a moment of silence in the clinic conference room. Then my student smiles.

“Now I get it,” she tells me. “I never understood these meds until now. Why didn’t some just explain it like that in the first place?”

I shrug. Probably because most doctors and CDEs don’t hang out with thieves, drunken rodeo clowns, or use bus stops.

Or have overactive literary imaginations.

A message from my son

2011-08-16T18:26:00.000-06:00

Rio says, “My Daddy’s new book is out.”

Count down & Kindle news

2011-08-02T18:35:00.000-06:00

Well this is new. The email says I’m a winner. But I have to wait a month to find out how big a winner.

Oh. Don’t get me wrong. There’s no money involved.

Bummer.

No, like most things you win for writing, this is about status.

So… drum roll… I’m a winner of a Reader’s Choice Award. Yeppers, Beyond Fingersticks is continuing its mini-sweep of book award contests, now taking it’s fourth prize. But this one has a twist. Unlike many contests, a month out from the award announcement, a “short list” is announced. From this short list, which has four books in the Health/Medical Category, the Gold, Silver, Bronze, and… well… the one left over… will be chosen.

But I won’t know where the chips fall until September 1st. Maybe I’ll win the gold seal. Or maybe the… you know... the one left over. But I gotta wait a whole frickin’ month to find out.

Sigh.

I don’t know if I ever mentioned it, but waiting is not my strong point.

Oh! Oh! Before I forget to tell you, Fingersticks is now a Kindle. Yep, the fine folks at ShareCare converted it to a Kindle for me. And what a job it turned out to be. There’s art work and graphs, and photos, and all kinds of stuff that eBooks really don’t deal well with. It took them many months, but the Kindle version rocks. There’s something appropriate about having a book on a subject as high-tech as CGM on an eBook. Right?

They did great, except they never could manage to get that whole ink-on-paper smell of real books that I love so much.

Speaking of real books, I recently spent a depressing evening at the remaining Santa Fe Borders Books browsing the final clearance sale. In case you missed the news, Borders/Walden Books ran upon the rocks a few weeks ago. They had attempted reorganization, but ultimately failed. I’m deeply saddened, but I’m part of the problem myself. Nine out of ten books I buy are on my Kindle nowadays. I love, love, love analog books. And I love, love, love book stores. But… you know… the Kindle is a pretty handy device. It’s nice to carry a library in my Go-bag. Plus if I’m stranded, say at the Jeep dealership getting an oil change, I can always buy another book from thin air.

R.I.P. Borders books. But I didn’t buy anything at the sale. For one thing, it was the day Debbie got fired. And for another thing, I was too depressed and overcome by the fear that I someday I’ll be forced to write a book that will only exist as “1”s and “0”s. A book that will never to exist as a real book you can cuddle up with, thumb through the pages of, scribble notes in the margin of with a red pen.

If that day comes, I don’t think I’ll be able to regard myself as a real author anymore.

Oh. Yeah. And speaking of ghosts of the past, one other little thing. Remember The Born-Again Diabetic? The book that started my diabetes book writing addiction waaaaaaaaaay back in 2008 (when dinosaurs ruled the earth)? It’s hard to believe after all these years, but it just won:

Yeah. Award number four for this book.

Total book award count for this author: ten.

Born-Again still sells as well as the newer books. I picked up a copy and thumbed through it last week (I almost never touch a book once I’m done with it). You know what? It’s pretty damn good if I say so myself.

I see an updated Audio Version in your future…

No good deed goes unpunished

2011-07-30T10:45:00.000-06:00

So what was the “official” reason? I asked, stoking thin air with the middle and index fingers of both my hands to denote the quotation marks.

“I guess I endangered a patient’s life by sending her to see a cardiologist,” snorted Debbie, sarcastically, her face still hard with anger, dark eyes nearly blazing.

There was a moment of silence between us while her words soaked in.

Then, despite the worry of being unemployed in the worst economy of our lifetimes, despite the unjust nature of working in medicine, despite small personalities with big titles—the ridiculousness of the whole thing stuck us and we began to laugh.

Yep. Yesterday my wife got fired. Her unforgivable sin: She put a patient’s welfare before the almighty dollar; and in modern American health care, you might as well throw yourself under a metaphorical bus.

Here’s what happened: Last week a regular patient came into the private practice medical clinic where Debs worked until yesterday. This woman was having surgery in a little over a week, and at the pre-op appointment the surgeon had detected an enlarged heart. He told her he’d feel better if she had a visit with a cardiologist before the cut her open.

The patient wanted to know if she could get a referral. Debbie knew that, unless you are on a gurney being unloaded from an ambulance, the odds of getting in to see a cardiologist in less than a week are a zillion-to-one. Still, she told the patient she see what she could do. Debs called the cardiologist’s people who normally would have laughed until they threw up. However, apparently God loves this woman. The cardiologist’s office had just received a cancellation. Debbie’s patient could have it, but they needed a referral ASAP.

Debbie booked the appointment for the patient, filled out all the paper work and took it to one of her providers and explained what was up: regular patient, surgery in a week, surgeon would be happier if patient saw cardiologist, miracle of miracles, we can get her in, but ya’ gotta sign here. The provider signed the document and Debs didn’t give it another thought. There were other medical brush fires to put out. If she’d been in the military she probably would’ve been given a medal for showing initiative.

Or maybe not. But she should’ve been.

Now, Debbie worked at a satellite office. The main office is over in Santa Fe, about 75 miles away. Every couple of months there’s a staff meeting at the main office. Thursday the boss called Debbie and asked her to come in an hour early so they could “sit down and discuss some things.” Debbie knew this couldn’t be good news, but didn’t expect to be asked to drive 150 miles to be handed a termination letter and curtly told to clean out her desk by day’s end. But that’s what happened.

Of course I read the letter and the “official” reason she was fired was acting beyond her scope of practice, which is nonsense. Filling out referrals was part of her job, as is scheduling patients with other practices. It’s not like she forged a doc’s signature on the fucking form.

Debbie spent the rest of the day and half of the night trying to re-play the brief conversation she’d with her ex-boss, wishing her mind was a tape recorder. Eventually scraps of the conversation came together and everything made sense. Well, made sense when you add in the fact that her ex-boss is an erratic crazy woman obsessed with titles and licenses and keeping people in pre-defined boxes. Oh. And obsessed with money, too.

Referrals are typically given at an office visit. With time pressing, there was no time to get the woman on the schedule. Several days after all this happened some bean counter realized the practice had missed an opportunity to make a buck.

Now remember that Debbie didn’t actually make the referral. She didn’t sign it. She just showed initiative and got everything ready. The provider could’ve said, screw this, I need to see the patient. Instead the provider chose to sign the document, presumably based on the information Debbie had gathered from the patient. And let’s face it, referrals are harmless. It’s not like the patient came in and said, “Hey this other doctor said I should have a prescription for Oxycontin.”

Referrals are pretty much handed out like business cards. In fact, they really only exist because of insurance. Otherwise, if you wanted to see a cardiologist, endocrinologist, dermatologist, urologist, ophthalmologist, or any other ologist, you’d could just pick up the phone and made an appointment yourself. In fact, many people whose insurance don’t require referrals do just that.

But, you can’t fire a provider for making that kind of mistake. That would lose too much money in the long run. But if you are a shorted-sited, money obsessed, crazy, paranoid person who wants to keep all the staff in a state of fear, a medical assistant makes a great sacrificial lamb.

So what did we do? Well, my family has a good tradition for times like this. We celebrate both victories and disasters. So Debbie, Rio, and I went out to dinner at the Steaksmith, the same place we celebrated my writing awards a few posts ago. Rio had a hard time wrapping his brain around why we’d celebrate something bad. We celebrate bad things to remove their sting, I told him, to show that our spirits can’t be conquered. Rio still didn’t get it, but ordered the scallops anyway. He’s not the type to look a gift horse in the mouth.

Then our drinks came. Roy Rodgers for Rio. Kula and Cream for Debs. Half-liter of cab for me. We raised our glasses. F’em. F’em all, I said. “F’em,” repeated Debbie, and clinked my glass.

“What’s ‘F’em’ mean?” asked Rio. I bent over and whispered the answer in his ear, with the added explanation that if we were at home there’s be no need to censor ourselves, but that in public places it sometimes pays to be circumspect.

“Ah,” said Rio, “F’em all indeed.” And he clinked his glass against mine.

Then he added, “I like our family’s tradition of celebrating disasters.”

The times they are a-changin’

2011-07-14T13:37:00.000-06:00

The gestation time of a baby mouse is 19 days.

The gestation time of a rabbit is 33 days.

Lions take 108 days.

Beavers 122.

It takes 187 days to make a baboon, and 245 days for a moose. That’s the real kind. In the woods with antlers and all. Not a chocolate mousse.

The gestation time for a human baby is 276 days.

Giraffes take longer at 425 days.

Sperm wales take 535 days.

Elephants 630 days.

And lastly, at a whopping 785 days, we now know the gestation time of trust between diabetes social media and big pharma.* It was a long gestation, but it was sure worth the wait.

Yeah. I’m here to tell you about the recent summit between Roche and us. I’m probably the last to weigh in on this year’s summit, which is the third. I waited a bit ‘cause I was crazed at work. And because I had to catch up on my columns. And because I was finishing a book. Oh, and also, of course, because I’m lazy about blogging. But mainly I waited because I needed to absorb it all.

Because this year it was different.

This year something new and wonderful happened. And I’m still trying to form the words to explain it to you.

Now, there’s really no point in my rehashing the details of the summit itself. Who spoke to us and what they said. For God’s sake, it was twittered and tweeted, tubed and twitter-pated in real time by a dozen of my younger, more diligent, and more digitally enabled colleagues. You probably saw me—odd man out with a pen and paper (an analog substance made from trees)—in one of Manny’s live video feeds, while everyone else hunched behind their lap tops and iPads. If you did, you might have even noticed I wasn’t taking many notes either.

Real time reporting is awesome stuff. But not my thing. I was focused on what was going on under the surface. Something that had to be felt more than recorded. Internalized more than broadcast. My goal was to provide analysis and commentary; another respectable journalistic tradition that we don’t see too much of in our rush-rush real-time online world. It’s hard to report, either in real time or after the fact, the vibe, the tone, the energy in the air. What it felt like to be there. But to me, this was the story I was drawn to, because this year it felt different from the start. This year there was a newfound sense of unity and purpose. Both between ourselves, and between us and our hosts.

In their long quest to discover a safe way to engage with the Diabetes Online Community, Roche has worked with a core group of us from the DOC as ambassadors. But in engaging with us for their own purposes, a powerful unanticipated consequence took place. It caused us to engage with each other too; and that caused us to change.

As crazy as it sounds, I guess I’m one of the DOC’s “founders.” And over the last few years I’ve watched the DOC go from isolated and lonely individuals reaching out to each other in the dark, wanting nothing more than to know they aren’t in this shit all alone; to being a loose confederation of individuals who sometimes got along… and sometimes didn’t; to forming up into a powerful and influential group perched on the cusp being able to do more than just provide support or speak for our kind—but to be the tip of the spear for change.

And that was the electricity in the air this year. The powerful realization that we can spark change. Engineer it. Create it, even.

Don’t get me wrong, I don’t think that Roche created a monster that will bite the hand that delivered it. Going forward, I felt that there was a realization in the air that it’s OK to have partners in our fights. That the enemy of my enemy is my friend. Yes, the big pharma companies make money on us, but these companies are made of living, breathing human beings that do care about us. In fact, many of them are us. dFolk are everywhere. There will always be a thin barrier between us. We will always watch our pharma allies with a degree of suspicion, and they will always need to be on heightened alert when we’re in the room; but the pure unadulterated distrust that marked our first meeting was gone and replaced with mutual respect, some trust, and dare I say it? Affection?

I liked the people from Roche from the start. And I confess that I’m now beginning to like the organization itself too. Yes, we have separate core goals. Their goal is profits. Our goal is to do more than survive. We want to thrive. But it seems to me like the roads we are both walking on might be going the same direction. Why not walk together?

And depending on the purpose of our walk (are we just traveling, or are we marching?), it might do us good to have even more people by our side. Strength in numbers. I neglected to “report” on it before now, but earlier this year the diabetes division of Medtronic hosted a Roche-like summit of their own. It didn’t have the electricity of this year’s Roche summit, but it went very much better than the first Roche summit; proof that Roche’s hard, patient work is paving the way for others who want to (carefully) follow in their footsteps. I found that like Roche, the Med-T folks were genuine and honest in their dealings with us. They came to the table, well actually they brought us to their table, to open a dialogue. They asked and listened. They answered questions as best they could.

To be fair, we barraged them with questions they couldn’t legally answer. We all wanted to know what was on the drawing board, something they simply can’t tell us with about paying a heavy price with the government. It’s illegal to talk about devices before they are approved, as it smacks of guerrilla marketing against devices already in the market place. And that’s a law with teeth. I’m sure Med-T has wonderful things hidden in the basement. On one hand I think many of them wished they could tell us what’s coming down the pike, but they are playing by the rules (the fucking boy scouts).

Recently, other companies who want to engage with us have not had it so easy; but maybe they can learn. I have it on good authority that after stepping on their own dicks trying to enter the social media space recently, a small pharma company who I’ll let go nameless is regrouping and going about it right: asking permission to enter our space; asking questions about how we can engage together with us in areas of common ground and common good; and listening to us. They initially made the mistake of talk first, ask questions later. They were not well received. Their re-boot will be a series of mini-summits via web conferencing, as they don’t have the budget for the real world approach the bigger players prefer. I hope the community gives them a second chance.

But now we have some decisions to make. Now that we are unified, strong, and powerful; we must decide our next steps carefully. Do we move our influence off-line? Do we rally around the IDF and push for greater global outrage over diabetes? Do we dive into the health reform fray, and protect ourselves from unintended consequences of legislation being written by people who’ve never wanted for good care? Do we knock down the Berlin Wall of the FDA and push for intelligent (and speedier) approval of the devices we need to maximize our health?

At last we are as one. Now we must decide where to go from here. Together.

*The exact number of days between the original announcement of the first Roche Summit in Diabetes Mine and the first night of the third summit.

Sir Writes-a-lot

2011-07-12T12:12:00.001-06:00

The cat’s out of the bag now. Or maybe I should say the dragon is out of its lair? Yep. My latest title is up at Red Blood Cell Books. I’ve been pretty vague about it over the last couple of months, just telling people that it’s a sequel to Taming the Tiger.

But now that pre-publication orders are being accepted—hey, at half off, no less—and now that the cover art and a brief description of the title are online (and I’m doing the dutiful modern author thing by “tweeting” it and “facebooking” the news), I might as well talk about it here too.

The new book is called:

Wait a sec, knights in shining armor follow tigers, how exactly? Sorry. I’ve upscaled diabetes to a 90 foot long dragon that breathes fire, has 14-inch spike-like fangs and claws stronger than titanium. Well, diabetes is a progressive disease, after all.

New information, new analogy, that’s all. No tigers this time. It’s only a Tiger book in that it has the same small pocketable format and is fun and fast to read. Well…. actually, that’s a lie. Oh, not about it be fun and fast to read, about it’s being completely devoid of tigers. If you look very closely, you may catch a glimpse of the tiger, but that’s just a special treat for sharp-eyed observers.

So back when I wrote the original Tiger, I really kept the information simple and narrowly focused, just teaching new members of the tribe the basic survival skills they needed to get them started on the right foot. I figured there was a ton of books out there that they could read later to learn more. You know, when they were feeling better.

But I’ve paying attention to how people read nowadays. Attention spans are getting shorter. People don’t want to read 100,000 words about diabetes. Not when they live it day in and day out, anyway. Clearly, another Tiger book was needed. Just a bite-sized morsel that would satisfy the hunger for knowledge, without taking too much time out of the day.

So, what, logically, do you need to know after surviving the first year of diabetes? Well, now you need to know all the stuff that allows you to thrive. And a lot of that stuff can be… ummm… you know… rather dry. I needed a creative tool. To me, the best antidote for dry is humor. If the subject is boring, at least make it fun to read about, that’s what I always say.

So yes. The new book is about diabetes. And yes. It deals with serious shit. And yes. It deals with potentially boring stuff like standards of care. But no, I didn’t take myself too seriously this time, to say the least. This little book is a hoot to read. And why not? If we can’t have fun with our diabetes, what can we have fun with? So from Fruits of the Vine to Sundials, I’ve taken diabetes back into the Dark Ages. Trust me. You’ll like it.

Now, I always get a bit uncomfortable bragging on myself, but…… well, I think this is the best book I’ve written yet. Of course, Debbie says I always say that when I finish a book. But she ACUTALLY read this one, and she tell me she likes it.

And, speaking of Dark Ages, this book had its genesis waaaaaaaaaaaaaaaaaay back in 2009. You can re-read the story here:

http://lifeafterdx.blogspot.com/2009/08/one-tin-soldier.html

When I re-read this post today, I was surprised to see I had threatened to turn this whole concept into a book back then.

It’ll be available as a Kindle book too, of course, but won’t be as much fun. The Kindle will be text only. The paper version has some great artwork. I’m not going to spoil the fun by talking about it; but let’s just say the cover art is only the beginning.

Oddly though, even though I was really happy with the book, a feeling of the blues settled over me once I finished it. Probably just the creative spooling down at the end of the project, but I was moping around shortly after finishing it because I’d come up with a couple of other “Tigerable” diabetes subjects.

And I wasn’t sure I wanted to write more miniature books. I was feeling like I wasn’t a REAL AUTHOR, writing these little things. Deb asked what was wrong. I don’t want to be known as the guy who only writes miniature books, I told her.

God bless her, she laughed at me. “What’s wrong with being known for writing little books that help people? Not a week goes by where one of our patients doesn’t tell me how much they loved Tiger and how much it helped them!”

“You are sooooo fucked up,” she said.

And then she kissed me.

Hard calls to make

2011-06-16T11:14:00.000-06:00

Once, many years ago, I found myself in the position of calling my wife to tell her I was in the Emergency Room.

Ummm…. Hi, Hon. It’s me. Uh, I don’t want you to worry or anything, but I’m calling you from the ER…

And the conversation went pretty much downhill from there.

Now imagine making thirty calls like that. That was my day yesterday, after the FDA announced an ongoing safety review of the type 2 med Actos.

Actos is a member of the TZD family, anti-insulin-resistance drugs that are designed to allow the body to more efficiently use its own insulin to control blood sugar. The other member of the TZD family was Avandia, now effectively banned worldwide. Avandia was actually a great diabetes drug. It did an awesome job controlling blood sugar. The only problem was that whole nasty side effect that it might maybe give you a heart attack.

(((Sigh)))

Actos is under fire for a different reason, for might maybe increasing the risk of bladder cancer. The evidence isn’t 100% clear, but strong enough for France to yank if from the market, and strong enough for Germany to ban new prescriptions.

Here in the U.S., where it’s nearly impossible to get FDA approval of a new med, it’s equally impossible to get rid of one once it’s approved. The FDA is at the five-year point in a ten-year looksee at Actos. At this point the FDA says overall risk of bladder cancer for folks who use the med isn’t higher, but an increase in bladder cancer was noted “among patients with the longest exposure” and in those “exposed to the highest cumulative dose.”

Excuse me?

So…. We just need to wait a little longer for everyone on Actos to get cancer, is that it?

Anyway, the five-year data, and a French study, are strong enough for the FDA to change the infamous “Warnings and Precautions” section of Actos’ label. The exact wording isn’t published yet, but the lead sentence of the safety announcement gives us a pretty good clue: “Use of the diabetes medication Actos (pioglitazone) for more than one year may be associated with an increased risk of bladder cancer.”

I guess the new Actos ads will tell us, “call your doctor if you experience bladder cancer.”

Holy crap.

The FDA also cautions docs not to use Actos in patients with active bladder cancer, past bladder cancer, or in persons with a family history of bladder cancer.

I predict a free-fall drop of Takeda stock.

“What do you think?” one of our Docs asked me in the hallway.

I’m soooooooooooooo done with these TZDs, I told him. I think we should just pull all our patient’s off of them. It’s not like we don’t have an entire medicine chest of other options. Why wait for trouble to be official?

“Do it,” I was told.

So began to make my phone calls. Yeah, hi, how are you today? Yep. Uh-huh. Uh-huh. Say, are you still taking your Actos? Yeah? Well, OK, I want you to stop…

I started with my most-excitable patients first. I knew by the time I called the third person, the first person would be calling all her diabetic relatives. I wanted the ones most prone to panic to hear it from me first. In terms of speed, social media on the internet is nothing compared to little ol’ ladies with landline phones in small towns. We call it the Viejita-Net.

I told them what was up. Not to panic. That we were being overly cautious. That the drug would linger in their systems for a week or so, and then their blood sugars would begin to climb. I reminded them that short term, higher blood sugar wouldn’t harm them. I asked them to test their blood sugars intensively for a week after that, then come see me.

The plan is to choose successor therapies based on each person’s Actos-free blood sugar patterns. Some will get DDP-4 inhibitors. Some will get basal insulin. If you’d asked me on Monday, I would’ve leaned towards using Victoza for many of them, but just a few days ago a much stronger thyroid cancer and pancreatitis warning was issued by the FDA about that drug too.

(((Sigh)))

I let the front desk know what was going on, and why I’d be transferring so many patients up to them to make appointments. “Wait a minute,” asked the medical records clerk, “Isn’t that the drug we moved all the people who used to take Avandia to?”

(((Sigh)))

Yeah. Yeah, it sure is.

At least at the ER they gave me a heated blanket and a heated pillow.

Of Words & Deeds

2011-06-14T08:00:00.007-06:00

The color of diabetes. Deep red. Like blood. Moving, spinning, flowing. I swirl the glass in my left hand, gripping the stem lightly, watching the fluid rise and fall around the clear edge, slowly settling back into the bottom, not wanting to let go of the smooth surface.

Rio cocks his head to one side, waiting. I bring the wine glass to my nose and breathe in the aroma. Ahhhhhhhhhh…. A lovely cab.

I raise my glass and say, “to words and deeds.” Tonight we are celebrating.

Rio clinks his Roy Rodgers against my wine glass and repeats with delight, “to words and deeds!”

His mother raises her margarita glass, clinking it against both of ours; our three different drinks uniting in one toast like the Three Musketeers. “To words and deeds,” she repeats.

Tonight, we have much to celebrate.

Where to even start? Well, Rio survived second grade. Barely. But he won a science award, which came as no surprise; and he also won a most-improved reading award, which was a surprise. Rio’s lagged far behind in reading since pretty much day-one, not from lack of brains, but from lack of seeing any value in reading. (Don’t get me started.)

After coming home from the school awards banquet he proved he inherited some genes from his paternal grandmother. “Don’t awards require a celebration?” he asked, and then set the bar high by suggesting the Steaksmith in Santa Fe would be the most appropriate place to go.

“We do have other awards to celebrate too,” pointed out Debbie.

True. I haven’t posted about them yet, ‘cause I didn’t want LifeAfterDx to start looking like a resume. But I’m kinda proud of this, so just really quickly, my CGM book Beyond Fingersticks has now won:

Yep. Three, count ‘em T-H-R-E-E awards. Oh and the little Tiger book also won a second award this season too. That brings my book award tally for the three English Language books to eight, three for Born-Again Diabetic, two for Taming the Tiger, and three again for Beyond Fingersticks, which gives me resume bragging rights to say: “Author of three multi award-wining books.”

My mother is very proud of me.

But not all the action is in books. Lots of other cool things are happening with Words in my life right now. Of course all of you are up to speed with my work answering diabetes questions at ShareCare, and hopefully you’ve been following my Dear Abby-style advice column on Saturdays at Amy’s Diabetes Mine site.

What you might not know yet is that I’m now writing for dLife too.

If ya’ click on that logo on the left it’ll take you to my profile page that will eventually link to all my work there. Right now there’s a piece up about how many times you could/should use a needle. My Debbie once left a pen needle on a Byetta pen for a month, that’s sixty shots! (No, we’re not quite that poor, apparently I was unclear when I taught her how to use the pen—at least that’s her story, and she’s sticking to it.)

If you search a little, you might also find a piece I did on the importance of dental cleanings, with a unique twist.

So you might ask, does he ever sleep? And the answer is: of course. Just not very often or for very long. ;-)

Seriously, don’t worry about me on that front. I’m still in the trenches at the clinic, but now running a much smaller program. Not that we have fewer diabetes patients, in fact, I had two new ones just this week. One of them cried when I told him he had diabetes. But that’s a story for another day. As is the one about the guy in a wheel chair with one leg that has no electricity or indoor plumbing. Did I mention he has to travel 200 miles three times per week for dialysis? If that one won’t make you cry, the one about the 13-year-old type 1 whose father steals his syringes for heroin will. Where’s the mom? Pissed if a low blood sugar makes her late to go party, that’s where.

Like I said, we’ll have to save those for another day.

No, our program is smaller ‘cause grant funding is drying up. Well, hell, funding for rural health of any kind is drying up. It seems the folks who sit in the comfy leather chairs in DC really don’t care if poor people with beautiful skin colors have health care or not.

Sometimes I even think they’d rather just let everyone who’s not like them die.

So my program is down to just me, and just three days per week. Still, that’s three-quarter time on our ten hour days, and I find now that I’m getting older, the long days and long commutes really wear me down. I’m liking the Monday-Wednesday-Friday thing just fine, thank you very much. It gives me all day Tuesday and Thursday to write, and my loved ones are not exactly early risers so I have peace and quiet for hours on weekends to boot.

So life, in the big picture is good. Sure. I still struggle with my diabetes. My check book. The little annoyances of life, like the fact that I spend about of a third of my time fighting with the fucking insurance companies, rather than just helping my patients to understand how to help themselves be healthier. But, still, life is good. I love my work. The one-on-one with the people I can look in the eye; and the work with people I can only reach through my Logitch Wave keyboard.

Life, in the big picture, is good indeed.

Where’s that cocktail waitress? I think I’ll have a second glass tonight…

Good morning Mr. Dubois, we’re calling to tell you that you’re screwed

2011-06-09T11:38:00.000-06:00

There oughta be a fucking law… well, come to think about it, there oughta be a lot of fucking laws. So today, Edgepark, the durable medical goods outfit who is the preferred provider for my Presbyterian health plan called me.

It turns out that my plan stopped covering one of my common insulin pump supplies.

A year ago.

Pres didn’t tell me.

Pres apparently didn’t tell Edgepark.

Edgepark apparently didn’t pay attention to the fact they weren’t getting paid for a year.

And now guess who gets stuck with the bill?

Yes. That would be me. The guy who can’t even afford to buy a full tank of gas for his Jeep in this economy. Oh well. What’s one more bill between friends? It’s not like I was planning to retire. Ever.

But what really makes me mad.. well, madder… is the whole process. The lady from Edgepark tells me that the official line from the insurance company is that “verification of benefits is not a guarantee of payment.”

Excuse me?

Ummm… now wait a minute. I’m stretching my infusion sets to four days ‘cause I know with 100% certainty that my quarterly shipment of keep-me-alive supplies will be held up for weeks while everything from my blood type to my doctor’s great-grandmother’s maiden name is confirmed, double checked, re-verified, and approved.

And all these delays and bullshit and stress and frustration are for… nothing?

I could just scream. In fact. I think I will.

Excuse me while I step outside for a moment.

Well, now I feel better.

No. Wait a minute.

I don’t.

Pretty Jewelry

2011-05-10T16:42:00.000-06:00

I love my new jewelry.

Not that I can wear it out of the house. Not without looking like some sort of perverted pathetic dork, anyway.

But I guess I could wear it around inside the house.

No. That wouldn’t work either. I’m sure my wife would be quick to point out that I look some sort of perverted pathetic dork there too.

Anyway, let me tell you about it.

It’s silver.

And shiny.

Very shiny.

And round.

It’s about three inches in diameter and hangs on a blue ribbon.

Can you guess what it is?

Nope. Not an Olympic Medal. Good guess, though. But who are we kidding? I’m hardly an athlete. (And no, it’s not a Senior Olympics Medal, either.)

I got this medal in the one area where I’m truly talented.

No. Not a hot dog eating contest.

No. Not for binge drinking.

No. Not for swearing in a public place.

OK. I guess I do have more than one talent.

Not for photography.

Not for teaching.

Think letters, and words, and sentences! Oh my!

Yep. Now you’ve got it! It’s a writing award!

Beyond Fingersticks, my Continuous Glucose Monitoring “bible” just won a finalist medal in the Health/Wellness category of the 2011 Next Generation Indie Book Awards!

And if you’re not supposed to wear it, then why does it come on a ribbon? Hmmmmm….. I’ll bet Gary Hall, Jr. wears his medals around in the house.

On Tuesdays.

Late at night.

After his wife goes to bed.

Extra! Extra! Read all about it!

2011-05-03T15:02:00.000-06:00

OK, Spanish speaking Kindle lovers (if there are any of you): I’m proud to announce that Domar al Tigre: Tu primer año con Diabetes is now for the first time ever, a Kindle book!

And it’s premiering for only 99 cents. That’s only eleven and a half Mexican Pesos according to Google.

For those of you who don’t know the story, despite all my Argentinean Facebook friends (Hola, all of you!); I don’t actually speak Spanish. Well not much anyway, my wife is Hispanic, so I do know all the bad words. Not that she ever loses her temper with me, or anything like that.

Naturally, working in the mountains of New Mexico, a lot of my patients speak Spanish. Thankfully, most also speak English. But, some of the elderly only speak Spanish, as do what we call “visitors.” The less compassionate might call them illegal immigrants. But I’m able to function with translators and wild gestures.

Anyway, about… Oh… I don’t remember… a few months after my wee book for folks just dx’d with type-2 diabetes, Taming the Tiger, came out my director of nursing said, “wow, I wish we could have that little Tiger book of yours in Spanish.”

(Picture a light bulb appearing above my head.)

Well, one thing lead to another and we got a Centers for Disease Control grant to do just that.

And I got to tell you, it scared the shit out of me.

Think about it. Would you be comfortable having your words translated into a language you don’t speak, read, write, or understand very well?

Anyway, long story short… Oh screw that. I’ll just tell you the whole story. As it turns out, there is no Spanish language. Folks in Spain and folks in Mexico don’t speak the same language at all. Oh and the Spanish in Central American is different from either of those. As is what the folks in Puerto Rico are speaking. And here? Hah! The folks in New Mexico don’t speak Spanish at all. They speak 15th Century Calistian.

Where, or where, is the Advil when you need it?

In the end, Trusted Translations, Inc., in Mexico City, professionally translated the English manuscript to “U.S. Standard” Spanish. Then the fun began. At the time we had five Spanish speaking staff members at the clinic. Three were “native” New Mexicans and two were Mexican. We also had a wonderful blonde-haired, blue-eyed gringa medical student who’s bachelor’s degree was in Spanish language.

All of them read Trusted’s manuscript and commented.

The glue who held this project together is a woman named Ariel Hubbard-Cordero, who I can’t say enough wonderful things about. She’s a bi-lingual New Mexico native social worker married to a Costa Rican. Oh yeah, and her little daughter is a T-1 and my youngest patient. Ariel was able to combine the team’s various comments, changes, ideas, etc., into a body of work; and patiently explained to me the various shades of grey of in word choices between the two tongues. She also had a flexible and functional understanding of the various dialects of Spanish.

Under her patient care I went from fearful, to confident, that the experience of the Spanish reader will be much the same as the experience of the English reader. After all, diabetes itself is a universal experience that makes us all one family, regardless of the tongue we speak.

In the over the two years since the project was completed, many local and south-of-the border folks have told me how much they like it. Recently, corresponding with a T-3 father of one of our little sisters in Spain (who got Domar off of Tu-diabetes), I learned that from the Spanish point of view in Spain, “the translation is excellent.” Wow. That made my day. To think that we created a work that spanned the globe of Spanish speaking people and worked for all of them is…. is… well, crap. I don’t have the words in any language to describe how I feel about that.

Anyway, at the time, there was not enough funding for a e-Book version, so it only existed on paper. A while back a PDF version was made as part of the free Tiger project which you can get here.

But it was never made into a Kindle. Not commercially viable and all of that. But advances in software for stupid people (read that as things I can use) has changed the face of e-Book publishing. So, yeah, I was able to spend a mere 2,000 frustrating hours to convert the damn thing into a Kindle. I hope to sell two, as that would double the Amazon sales of the paper version. Amazon sold exactly one copy. Ever.

Anyway, if my mission was to get rich, I’d be working on Wall Street, not Diabetes Way.

If one person benefits, my time was well spent.

So anyway. Domar on Kindle. Today.

Oh, right, the link is here.

The Saturday Share #18

2011-04-30T09:00:00.001-06:00

Doing my part to keep internet diabetes information fun and accurate I’ve been penning a new Saturday column over at Amy Tenderich’s aswesome Diabetes Mine site called Ask D’Mine, as well as answering reader’s questions over at Sharecare as one of their “Experts.”

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions from Sharecare with you here, and also give you a preview of what I’m talking about over at Ask D’Mine.

Sharecare Question: What is considered borderline diabetes?

My “Expert” answer: When the diabetes police are in hot pursuit and you are within five miles of a state border you have borderline diabetes.

Sorry. I couldn’t resist. In the medical world we use certain fixed blood sugar numbers to determine who has diabetes and who doesn’t. The standards are set by the American Diabetes Association and are adjusted from time to time as new research reveals new truths.

So if your blood sugar is above a set threshold you have diabetes. If it’s below a set threshold you don’t. If you fall between the two sets of numbers you’re not a member of either tribe. You aren’t really quite “normal,” but your sugar isn’t high enough to really be considered a person with diabetes either.

You have borderline diabetes, pre-diabetes, or in more technical terms impaired glucose tolerance.

But none of these labels convey the deadly seriousness of the condition. Here’s the truth, no bull, if you have borderline diabetes: full blown diabetes is on the way. The conversion rate from pre-diabetes to full blown diabetes is mind numbing, and because of this I especially dislike the term “borderline” as it makes the condition sound somehow less serious than it is.

At any rate, on to the numbers. We now use a quick and simple blood test called an A1C to diagnose diabetes. If your doctor’s office is so equipped, it can even be run from a single drop of blood from your fingertip in about six minutes.

The test gives us a picture of the blood sugar environment of your body over the last three months. Diabetes is now defined as a A1C score of 6.5% or greater. Normal is considered to be 5.6 and below. If you are between 5.7 and 6.4 you are on the border. (Just remember that it’s more like the border between North and South Korea—filled with land mines—than the border between North and South Carolina.)

To make it easier to grasp, these percentages can be converted into estimated average glucose numbers, in plain English—meter numbers. And in meter numbers “borderline” diabetes is defined as an average reading between 114 and 137 mg/dL.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here.

Meanwhile, over at Diabetes Mine, today I’m tackling a question from a type Type-1 about how to keep insulin cold when traveling. Or if you even need too. And I tell another T-1 that maybe he needs a pump break.

Go check it out. Right now. And don’t limit yourself to reading. Join in the fun. Ask me questions!

A tiger in your tank (well, in your Kindle)

2011-04-26T11:54:00.002-06:00

Good news for Kindle fans! My little first-year-survival guide for
Type-2s is now only 99¢ at the Amazon Kindle Store.

What? Are you fucking kidding? Less than a dollar? That’s what a quart of gasoline costs, a third of a cup of coffee from Starbucks, or a quarter of a Big Mac! Why, you can’t buy anything for less than a buck nowadays!

Yup. It’s true. You can put a Tiger in your Kindle for less than a buck! So what are you waiting for? Go buy it, already!

Of course, free PDF’s are still to be had at Diabetes-without-Borders, but you can’t beat the Kindle experience for ease of reading!

Test strip wars

2011-04-14T07:05:00.000-06:00

A quick note about this story: Amy T, over and D’Mine asked me a few weeks ago to look into the “test strip thing” in Washington state, and to write up an investigative piece on it.

So I did.

But it ended up being a lot more complicated than either of us ever imagined.

And the story ended up being just a little teensy, tiny bit longer than she wanted. Oh, like maybe almost ten times longer. Assistant Editor Allison Blass asked me, “didn’t it ever occur to you to, I don’t know, STOP at some point??!!!”

Well, I stopped when I had told the story. Some stories are just longer than others and take more time to tell, that’s all.

Anyway, a briefer version of what I discovered posted at diabetes mine, and here for those of you who want to know the full story, with all the details is the “epic” version. Long. Sure. A story worth reading? I hope so.

Let me know in comments—both here and over at D’Mine.

To the best I can tell, it started with a Wall Street Journal Article, but it’s hard to know for sure. News spreads like a virus in the modern world, traveling wirelessly across the landscape of twitter and cell phones, to social media sites accessed in coffee shops, through emails from work computers.

Our interconnected lives put Paul Revere to shame. But it wasn’t the British that were coming this time. It was a little known program in the state of Washington called the Health Technology Assessment Program, or HTA. And apparently they had the power to limit the availably of test strips for diabetic children.

The diabetes social media space exploded overnight in outrage, fear, and pure confusion. But even with a light-speed Paul Revere, by the time the call to arms came, the battle was over. And before any of us could fire a shot, we’d actually won the battle.

But the war itself has just begun.

So what happened? What is this program? How and why do they have the power to leave kids without enough test strips? And why did they choose not to exercise that power?

As it turns out, none of those questions are simple. And the matter is far from dead because the HTA is being considered by many states and at the federal level as a model for reigning in spiraling health care costs nationwide. As panicked politicians struggle to balance budgets, the cost burden from those of us with chronic illnesses will increasingly come under the microscope. And while you might justifiably wonder what politician in his right mind would even consider limiting care for children, the next round of the fight will likely effect us all.

So what the heck is this HTA in the first place?

The HTA was created by the Washington state legislature back in 2006. It’s job is to evaluate cutting edge medical technology by looking at the clinical evidence surrounding its use, and decide if it’s worth paying for or not. It uses a very formal and remarkably transparent process to accomplish its controversial mission. More on that process in a bit, but in a nut shell the HTA embraces the new science of “evidence based medicine” to decide what the state should pay for, health wise, and what it should not.

On the surface, the approach is logical. I’m sure most of us wouldn’t want our tax dollars to go towards paying for overpriced snake oil that may do no good at all, or worse yet, actually hurt someone. The problem, of course, is that as we get into high-tech medicine, separating the snake oil from the medical breakthroughs becomes increasingly more difficult. Looking at a list of technology reviewed by the HTA over the last few years I see they looked at the issues of Computed Tomographic Colonography, Discography, and Hyaluronic Acid Viscosupplementation.

OK.

I have no frickin’ idea whatsoever what any of those things are.

At a glance I’d say I’m not sure I’d want someone tomographing my colon, I thought we all agreed that disco was dead, and maybe my visco needs supplementation, but I really don’t know for sure.

The HTA has also been bold in reviewing things that tend to get accepted on the surface like lumbar fusion, knee joint replacement, breast MRIs, and cardiac stents. And they’ve not been afraid of controversy either. One of the first issues they took on back in ’07 was pediatric bariatric surgery, whether or not to pay for lap-band type procedures on grossly overweight kids. (They ruled against paying for this in the end.)

The HTA’s Vision Statement is to “achieve better health care outcomes for enrollees and beneficiaries of state programs by paying for proven health technologies that work.” It’s mission statement is to “base coverage on evidence that a medical procedure, device, or test is safe, effective, and provides value.” A secondary goal for the HTA is uniformity and consistency of coverage between the various state agencies in Washington state that pay for health care.

Of course what it really is doing is trying to save the state money. The HTA claims, with no citation, that “as much as one-third of the nation’s total health care spending currently goes toward treatments that do not work.” According to a recent HTA press release, since its inception, the HTA has trimmed $31 million dollars per year off of the state’s medical spending.

The way the HTA goes about this is by following a yearlong process that starts with someone saying “hey what about the cost of test strips, are we getting our money’s worth?” and the technology actually being reviewed and ultimately ruled on. And we’re going to follow that process from inception to bitter end.

Welcome to the collision of science, medicine, and money.

How the HTA works

So I don’t want this article to become a dull lecture in public policy, but to understand how taking test strips away from children was seriously considered, could actually have happened, who stood up for the children (and who didn’t), and why that course of action was ultimately rejected, ya gotta understand the process.

And I think the process might surprise you with its thoughtfulness, openness, and balance.

The HTA’s mandate is to investigate health technology, which it defines as “medical procedures, tests, and devices,” which can be either therapeutic or diagnostic in nature. If a HTA investigation shows the tech in question is “proven to be safe, to work, and to add value” then the HTA essentially forces Washington state health programs to pay for it. If the HTA finds against a technology, it will no longer be considered a covered benefit for any for the state’s health programs.

The first step in the process deciding what technology to review. Apparently anyone can “nominate” a technology to be reviewed. Not exactly the same prestige as being nominated for Golden Globe award. Most commonly, the insurance programs themselves, the so called “payors,” nominate technology, presumably technologies that they do not wish to pay for. Of course, the HTA gets more nominations than time allows for, so the program prioritizes their list and selects about ten technologies per year to dig into. Additionally, a tech that was reviewed in the past can be looked at again.

Once a technology is selected for review, the HTA identifies a set of research questions to ask about it. These questions drive the rest of the process forward. The questions form the basis for discovering what is known, from a clinical research perspective, about the technology. In an approach that is repeated throughout the year-long process, both the draft and the final questions are published online before the process moves forward, giving time for public, professional and stakeholder comment.

Once these “key” questions are finalized, a clinical research organization, called an “evidence vendor” is contracted to create an evidence report, which serves as the backbone of the review process. The vendor searches medical literature and summarizes the findings. Again both a draft and later a final report are pubic record, and are open for comment.

Ultimately, the report and feedback is reviewed at one of the quarterly meetings of the HTA Coverage Decision Committee. The committee is made up of eleven independent practicing clinicians. They are not HTA staff. Not politicians. They are practicing medicine men and women. People in the trenches. It’s their word that is final, not the bureaucrats.

Well, not quite final. The HTA revisits its decisions “at least every 18 months,” according to the HTA’s website. Apparently nothing is carved in stone.

The HTA’s mandate is actually fairly narrow, at least in terms of how they look at a medical technology. They have both primary and secondary criteria, which serve as the framework for the questions they ask and how they make their decisions about covering a medical technology. They are:

Primary Criteria

1) Is it safe?

2) It is effective or accurate, and how does it compare to alternatives?

3) How much does it cost?

Secondary Criteria

1) How many people are effected per year?

2) How severe is the health condition?

3) How urgent is the review?

4) How variable is coverage now?

5) Are there unique ethical concerns? The impact on women, children, elderly or ethnic groups must be considered.

Given the criteria stated above, it amazes me that test strips for diabetic children were even considered at all. Test strips are safe, and they are accurate with no realistic alternative. The population of T1s is small, the condition is severe, and were talking about children for Christ’s sake. But still, the HTA did review test strips for kids.

Who’s effected by HTA decisions

The HTA’s decisions to accept or reject coverage of a medical technology have a vast scope, setting the guidelines for the state’s Medicaid, Labor, Industries, and state Health Care Authority (more on this agency in a moment); as well as providing “voluntary” guidance to the state’s Department of Corrections and the Veterans affairs.

This is worth expanding on a little further. The HTA’s decisions don’t just affect the public assistance populations, the 1.3 million low income adults and children on Medicaid in the state. For instance, the state’s Health Care Authority, the HCA, oversees seven major programs beyond the HTA itself.

1) The Basic Health program subsidizes private insurance for folks who’s gross family income is at 200% of federal poverty level or below—$44,700 this year for a family of four. So basically people who make too much to get Medicaid but too little to afford private insurance. This program currently has a waiting list in the state of Washington.

2) The Community Health Services program uses grant funds to help support 36 nonprofit organizations who operate 175 clinics throughout the state, providing medical and dental services. A whopping 273,000 Washingtonians get their health care through this network alone.

3) The Prescription Drug Program, a state run discount card that helps citizens afford the cost of prescription medications. I noticed that the state provides info on this program in English, Spanish, Russian, Chinese, Korean, Vietnamese, Tagalog, and Punjab—which I think says a lot about the diversity of the Pacific northwest.

4) The Public Employees Benefits Board. Yep, the HCA overseas health insurance for state workers, retirees, and their dependants. It’s also on point for worker’s compensation coverage for on-the-job injuries.

5) The Uniform Medical Plan—the actual insurance plan for state employees. The plan covers more than 335,000 public employees, retirees, and family members.

6) The Washington Health Program, an “affordable” basic health plan geared to provide no-cost coverage for basic health services with an eye to reducing hospital ER visits. This program also serves as a safety net for those on the waiting lists for other programs.

7) The Washington Wellness Program, an education site and portal for other health and wellness programs in the state, such as exercise, nutrition, smoking cessation programs and the like.

So HTA decisions affect more than just public assistance patients, for all practical purposes they set the stage for what is covered or not covered for pretty much everyone in the state of Washington.

Since 2007 the HTA has finalized 21coverage decisions, shit-canning 10 technologies and continuing to cover 11 others, at least under conditions where evidence demonstrated benefit.

Among the technologies that were kept are lumbar fusion, bone growth stimulators, and routine ultrasounds for pregnancy. In the trash heap went upright MRIs, implanted infusion pumps for chronic pain, and TENS units (Transdermal Electrical Nerve Stimulators). I was sorta bummed to hear that, as I personally use a TENS unit and find it very helpful for my back pain from degenerative spinal disease. Still, when I researched TENS units for myself, I recall the clinical evidence showed that they only work in about half of people who use them, so presumably the HTA decided half the money spent would be wasted.

The HTA’s look at test strips and CGMs for kiddos

Once a review process starts, all the steps along the way are well documented, amazingly

transparent, and generally posted on the HTA or HCA web sites. The one thing I couldn’t find, or fathom, was why on earth they took on a subject like this in the first place.

Looking at the key questions that are generally reviewed—is it safe, is it effective, how severe is the condition, does it impact children—it seems like the outcome is a foregone conclusion. Why waste the time and money looking at it in the first place?

So I wrote to the HTA and asked, not expecting to get much of an answer. To my surprise, like everything else surrounding the HTA, they were open and brutally honest. Huh. They must have their staff chained to lie detectors attached to electro-shock machines.

Supervisor: Are you using your work computer to post to Facebook?

Employee: No sir, of course no— ZAAAAAAAAAP!

I started with their media contact, Sharon Michael in the HCA public affairs office. She replied within hours and got answers to all my questions by day’s end. Interestingly, at the end of her email was this little note: “FYI: Our offices will be closed on Monday for a state-mandated furlough day.” I found it poignant that even the folks who are tasked with deciding where to stop spending money in health care are furloughed.

A sign of the times.

Her email to me stated that the answers to my questions were “prepared by the HTA program staff,” so we can’t be exactly sure who is speaking, but the staff states that the review of blood glucose monitoring started off as a request from “state agencies” and goes on to say:

“Agencies believe that glucose monitoring is an important component of diabetes management; however there are important questions about optimization, frequency, outcomes, and methods for SMBG (author note: Self Monitoring of Blood Glucose) and those questions bear directly on creating a policy that best supports diabetic beneficiaries’ total needs while being the highest and most efficient use of our shared state resources.”

And the staff goes on to say that:

“After the initial selection of the topic, it became clear that insulin dependence and age are key different population. For adults (mostly non-insulin dependent) a recent well conducted evidence review provided evidence to formulate a policy, but there was no such information on 18 and under group. It did not seem reasonable or optimal to have a limitless supply without any review.”

The Report itself

In the case of the test strip report, the contracted evidence vendor, Spectrum Research, was given five key questions to research. Paraphrasing the questions and translating them into English they were:

1) Is there evidence that test strips work?

2) If so, and if you test more, do you get better outcomes?

3) Are the damn things safe?

4) If so, are they equally safe for everyone?

5) Are they cost effective?

Of course each question has up to eight sub-questions. For instance under the “do the frickin’ things work” question are sub-questions like “what about A1C?” “what about for reducing hospitalizations?” “what about reducing mortality?” and “how does it affect quality of life?”

Oh, yes. And I forgot to mention two further complications. Spectrum was instructed to investigate these questions only for people under the age of 18, and they were instructed to look at both test strips and continuous glucose monitoring (CGM).

On top of all of that, HTA evidence vendors are only allowed to look at specific kinds of medical research, in particular they seek out evidence from randomized controlled trials, or RCTs.

RCTs are considered the gold standard for clinical research. They work by taking a group of similar people (such as age, health, ethnicity) and dividing them into two groups, randomly assigning each person to one group or the other. The first group gets a medication or treatment and the other group, called the “control group” gets diddly-squat. Actually, in medical research, the control group often gets a fake med so they don’t know if they are in a control or study group. Then you wait a little while, or a long while, and then compare the health outcomes of the two groups to see if your therapy worked. Scientifically, it gives you slam dunk results.

The test strip report for the HTA was drafted by seven Spectrum employees with a mix of advanced degrees including two MDs and three PhDs. This report is no small thing. There are four documents totaling 505 pages.

The report used a method called PICO as the lens with which to view and sort the data. PICO stands for Patients-Intervention-Comparators-Outcomes. Say that five times really fast. It’s the inclusion/exclusion criteria for the report. In other words, PICO guided Spectrum in choosing what studies to include in their analysis and what studies to ignore.

P is for Patient. So to be included, a study had to look at folks under 18 who are insulin dependent. If the study wasn’t 80% or more kiddos, or didn’t have the data separated by age group, it wasn’t included. Some of the stakeholder feedback made a big deal of studies that were left out, but again, the report (and the HTA’s review) was only concerned about the test strip utilization of kids. The adult strip usage in the state of Washington has already been strangled down to the Centers for Medicare & Medicaid guidelines of 100 strips a quarter for pill poppers and 100 strips a month for shooters.

I is for Intervention. They kicked out studies of retrospective CGM use. They only wanted to look at studies on real-time patient use of data.

C is for Comparators. They wanted to find studies that compared how folks did with, say 8 strips per day compared to how they did with 5 strips per day. They also were looking for how folks compared using test strips as a stand-alone therapy vs. those using strips as part of a package of “education, feedback, and support.”

O is for Outcomes. I’m not sure what kind of study wouldn’t report an outcome, but ones that didn’t were not included. Spectrum was instructed to look for outcome data on getting A1C in target and keeping it there (yeah, riiiiiiight), hospitalizations, high and low blood sugars, DKA, microvascular and macrovascular complications, effect on medication or nutritional management, quality of life, length of life, and—of course—cost.

The effort was massive. Spectrum found 240 unique citations. Of these 170 were reviewed by abstract (the reader’s digest version that serves as an “executive summary” of a clinical research paper) and 70 were reviewed in full text. In the end only 20 of the 240 studies that were located in the literature were included in the report. The rest failed the inclusion/exclusion criteria. It doesn’t mean they were bad studies necessarily. It just means they couldn’t help answer the question about strips for kids. Another 23 studies were located in the bibliographies of the reviewed reports and included.

It would seem then, that the primary literature search missed just over half of the relevant clinical evidence.

So what did they find? The report states that “There are no randomized controlled trials or observational studies that evaluate SMBG testing as an independent component of management.” At least none were found. And they looked pretty hard.

Naturally. Because who on earth is going to create a RCT where you have one group of kids test and another group not test and then see what happens?

Spectrum went on to say that the best indirect evidence for the value of test strips comes from the famous Diabetes Control and Complications Trial (DCCT) back in the ‘90s that set the stage for the modern treatment of diabetes. Editorializing here, but this is really old news, people. This study happened when many D-folk were still doing urine testing for blood sugar. Meters were new. And primitive.

So why has no one looked at this issue since then?

Because it’s too fucking dangerous to do so, that’s why. Even the DCCT shut down its control arm half-way though. The benefit of testing was so great that it would not have been ethical to keep going. It would have resulted in the death or maiming of study subjects.

So yeah. Testing is that big a deal.

Testing has since become so entrenched in diabetes treatment that it is carved in stone.

But what is not known, what maybe should be studied is More vs. Lots More. I think that would be safe. Not more vs. less. But I would love to see a study looking at whether T1s who test 12 times a day do better than ones who test 8 times a day.

But moving on…..

When it comes to test strips he bottom line of the report, which looks at the bottom line, is “There is no evidence available to assess the cost effectiveness of SMBG or CMG in persons with diabetes ≤18 years old who require insulin. No full economic studies which focused on the cost effectiveness of CGM or the frequency of SMBG were found.”

In short, more than 500 pages to say, “we really don’t know squat.”

All righty then.

What about CGM effectiveness? The report’s bottom line on CGM is “There are a number of questions that remain with regard to rt-CMG use in particular. It is not clear from the evidence available what precise role these devices may play in those 18 years old or younger or which individuals may most benefit from this technology. It is not clear to what extent improvements in overall glycemic control within CMG groups is clinically meaningful or how they may translate long-term into other health outcomes. The short follow-up time in the trials to date preclude making conclusions about the long-term benefits of CGM.”

English translation: we don’t know squat about CGM either.

The response to the report

The Spectrum report got a lot of heat for saying the evidence is weak. In their defense, if you read the report carefully they are not saying the technology is weak, they are merely saying that the evidence—as defined by the search criteria—is weak.

Once the draft report hit the HTA’s web site the public and the stakeholders weighed in. Reponses were filed by American Diabetes Association, The Endocrine Society, and the Pediatric Endocrine Society. So now you know who your friends are. Industry came to bat with Abbott, Beyer, and Roche for the fingerstick team, and Medtronic and Dexcom for the CGM part of the equation. The enemy of my enemy is my friend, right?

Of course, patients, type 3s, and docs weighed in as well.

But painfully missing from the advocacy was the Juvenile Diabetes Research Foundation.

The ADA was able to pull a nice rabbit out of their hat by finding another Washington state study from ‘06 that found the cost of treating “uncomplicated diabetes” –sign me up for that please—is $1,600 per year while a single DKA costs the state $7,000. In fact, the ADA points out in their response, diabetes-related hospitalizations were racking up $1.27 billion per year; suggesting that saving a few pennies now would not be in the best interests of the Washington state tax payers in the long run. Of course they also included the whole little-Susie-will-die pluck the heart strings thing too.

The Endocrine Society letter stated “Although there may be disagreement about whether or not SMBG is useful in patients with type 2 diabetes on oral agents, there is little controversy among endocrinologists about the effectiveness of its use in pediatric, adolescent and adult patients on multiple daily insulin regimens.”

I thought the Pediatric Endocrine Society’s response was both medical and lyrical. A sample: “The DCCT had to be discontinued in 1993 when an interim analysis revealed that the benefits of intensive management of diabetes were so great and unequivocal that it was no longer ethical to continue to conventionally manage patients with diabetes. Since then, it has been justifiably considered unethical to deny any group of children frequent SMBG as to do so would preclude intensive insulin management. Therefore, it is not reasonable or ethical to assume that a dearth of randomized studies of SMBG indicates such monitoring to be ineffective; in fact, the dearth of studies actually results from the fact that intensive insulin management based on frequent SMBG is effective.”

They go on to point out that insulin has also come a long way since the DCCT, and more testing is needed now than what was done back then—both for effectiveness and for safety. They further point out that testing does not stand alone. It’s a link in the chain of insulin delivery, and that trying to look at testing in an isolated way is moronic. (OK, I probably paraphrased that a little bit). In their slightly stuffier way they say that testing blood sugar is not merely “a method to improve glycemic control – it is instead a necessary means for adjusting insulin doses…”

Abbott, who presumably sells test strips to the state of Washington, and therefore has the most to lose in dollars, hired United BioSource Corporation to write a counter-report to the Spectrum report. It’s sort of machine-gun science, trying to poke holes in the other guys’ work. Assassination by science, if you will. BioSource’s job was to try and dismantle the Spectrum report. To be fair, they were not playing by the same rules of HTA. Abbott filed BioSource’s 39-page report plus a 14-page appendix that is a copy of the federal statute that governs the protection of human subjects in clinical research as part of their feedback. Their argument was RCTs on kids under 18 would be a violation of federal law.

The BioSource report states “The stated focus of the HTA report is on the efficacy, safety and cost effectiveness related to SMBG, however, the report neglects to address the indirect long-term impact of not maintaining glycemic control. Overwhelming evidence and an established standard of care in support of glucose monitoring to maintain glycemic control has been widely accepted and practiced for at least several decades.”

Spectrum was given the chance to defend their report and respond to feedback. To their credit they did incorporate some evidence provided by the feedback process. But Spectrum defended their decision to give test strips a low “overall strength of evidence” score simply because they could find precious little if any studies that fit their criteria. The criteria mandated by the HTA.

They point out that doesn’t mean BGL testing at high volume for kids doesn’t work, it just simply hasn’t been studied. They also point out it’s not their job to make a recommendation to the committee.

The decision of the committee

According to the New York Times, the committee, who is currently made up of seven doctors, a nurse, a speech pathologist, a chiropractor, and a naturopathic physician voted unanimously to leave the test strips the hell alone with no daily limit.

CGM wasn’t as well loved by the committee, but it wasn’t kicked to the curb either. The committee advised coverage for “trial settings” and in cases of severe hypoglycemia.

The decision will not be final until May 2011 to allow for further public comment.

At the same meeting the committee shit-canned injections of pain meds around nerves in the spine. They stated that the clinical evidence did not support the practice.

But I don’t live in Washington state, why should I care?

According to the Wall Street Journal, the HTA’s director, Leah Hole-Curry, JD, has been appointed to the federal Patient-Centered Outcomes Research Institute. Yep. The HTA is going nationwide as part of the lumbering rollout of health care reform. Balancing outcomes, evidence, and money is going to be tomorrow’s health care.

Following the money—a LifeAfterDx analysis

A recent “policy brief” posted at the website of Washington state Governor Chris Gregoire states, “in the past decade, the amount Washington state pays annually for health care has doubled to more than $5 billion — a rate of increase that dwarfs any other part of the state budget.”

The Governor is quoted as saying “spending on health care substantially hinders our ability to invest in such essential services as education and public safety — each dollar spent on health care is a dollar not available for anything else. And it’s not just critical public services that are being squeezed. Individuals, families and businesses are also overwhelmed by health care costs.”

For what’s worth, nationally, health care in America costs us as a society 16% of GDP. That means that 16 cents out of every dollar our economy produces disappears into the gaping maw of health care.

Ours is the most expensive health care “system” on the planet. And we are not getting our money’s worth. It costs 2.3 trillion a year, around $7,600 a head on average, but this average is deceptive as it ignores the fact that many American simply can’t afford to participate in the so-called system in the first place. And by far, Americans do not have the best standard of health. The World Health Organization rates us at # 39 amongst nations behind such enlightened nations as Malta, Oman, Luxemburg, Cyprus, and Columbia. Next on the list below us is Slovenia, followed by Cuba and Brunei.

But back to the Pacific Northwest, just how big a deal is the cost of test strips for T1 kiddos for the state of Washington in the first place? Over the last four years Washington state shelled out close to two million dollars to keep between 700 and 900 kids in strips. The dollar amount has been shooting up, with 2009 spending close to double what it cost in 2006. Of course, that’s just the strips that the state is directly picking up the tab for. The cost of strips also influences the cost of the private insurance programs that the state subsidizes for folks caught between total poverty and the ability to keep their heads above water.

Of interest, the email I received from the HTA answering our questions about why they chose to review test strips in the first place, added this little tidbit at the end, almost as an afterthought: “Later in the process, as agencies reviewed their utilization data, they also discovered that high utilization may reflect mismanagement of diabetes, and be an indicator of overuse of other resources, such as emergency room care due to poorly controlled diabetes. A reasonable restriction on number of strips may do two things – force cases of poorly managed diabetes into the payment review process, where better management/re-education might be part of the solution – and also detect cases of fraud where strips are being purchased under an insurance plan and resold.”

Overall, however, the glucose monitoring costs work about to about $770 bucks per kid per year on average. Less than two bucks per day per kid. 85% of that cost is strips, the rest being meters, lances, lancing devices and some CGM supplies.

Data on the state’s test strip spending comes from two primary sources. One source is insurance reporting data from the state’s employees, dependents, and retirees; and the other source is data about the folks covered under the various assistance programs. There are some troubling differences between the two sets of statics.

Looking just at 2009, the most recent year for which data is available, the employee plans were shelling out a total of $1,389.31 in testing supplies per kid while the social programs were only paying out $554 per child.

The employee plans were covering 110 T1 kiddos while the social programs had 547 (with another 282 pediatric T2s, a shocking number to me, but not part of the test strip data as the vast majority of those kids are on orals and don’t test often).

The data between the two sets clearly shows that kids on assistance programs generally test one time less per day than kids on employee programs. In ’09 employee covered kids tested on average 4.9 times per day while kids on social programs tested on average 3.8 times per day. That one-strip-less-per-day difference remains consistent over the last four years.

Interestingly, 12% of the T1 kids covered under the state’s worker plans had a hospital visit in 2009 while 56% of the public assistance kids ended up in the hospital the same year.

Could one less strip per day really lead to so many more hospitalizations? Is this, by itself, proof that better testing gives better outcomes?

To be honest, I doubt it. We have to remember that T1 children living in poverty face an entire array of other issues from nutrition, education, social support, to God only knows what else. We need to be careful about making assumptions here.

Still, it is interesting.

But to me, I’m shocked that either 4 or 5 strips a day keeps these kids out of the grave. In my playbook a well controlled T1 needs a minimum seven strips per day. Minimum. Here’s my recipe for control: one test in the morning that doubles as your pre-breakfast test so you can correct your meal bolus as needed for elevated or below target blood sugar. Then one test two hours after b-fast. This is your way to see if you did your morning bolus right, fix it if you need to, and is also your after-meal advanced hypo warning system if something went wrong in the other direction. You need to do the same before and after lunch. And before and after dinner. And of course at bedtime. Many kids also need to check or be checked in the middle of the night. And what if you have a hypo? How many strips will that little adventure use up?

And there are more disparities here. And not all of them make sense. The social service programs shell out a lot more for meters than the employee programs do. It could be that meter companies aren’t supplying sample meters to the nonprofit clinics that most of the poor utilize, while private practices are better supplied. But when you only look at spending on strips per child you see that the kids covered under employee plans get $1,274 per year in strips while kids covered under social programs get $470 per year in strips. Now, we’ve seen that kids on the social programs either get or use fewer strips per day. But not enough fewer to account for the vast difference in dollars. Are the social service kids getting inferior strips? Are the kids of employees getting overpriced strips? I don’t know.

Another troubling disparity is that the employee programs shelled out around $11,000 in CGM stuff, while the social programs didn’t spend a dime on CGM. Apparently, none of the T-1 kids covered by social programs, who we’ve already seen have much higher hospitalization rates, have access to CGM.

But limiting strips to kids wouldn’t have saved the state a half million a year in the first place. Not without paying for a lot of funerals. The best the state could have done is to reduce this amount. After all, there was no talk of eliminating test strip coverage altogether.

It begs the question: why didn’t someone look at this a little more closely before embarking on this adventure? The review was not cheap. The savings wouldn’t have been great. The results pretty much a foregone conclusion. Why waste more money?

How much did this look at test strips cost the state anyway? There is no real way to know, or determine, how much the staff time of various persons at the effected agencies who had to collect and review data cost the state, but there is one price tag that is definitive: how much did the state of Washington pay the evidence vendor, Spectrum Research, for the study?

We asked HTA and they answered. To date, they have paid Spectrum $83,432.70 for the glucose monitoring reports. Nice work if you can get it.

A bargain, I guess. The HTA tell us that clinical evidence reports range from $75,000 to $150,000 each. They further tell us that this is a typical market rate. So that means the glucose report was towards the lower end of the scale. Abbott probably shelled out a similar amount for their anti-report report.

So I can’t help but think that the 667,000 test strips that could have been bought with that money.

Summary

Washington State is trying to base their medical spending decisions on clinical evidence. As a government, they are stating they are willing to pay for medical technologies that work, are safe, and are cost effective. They don’t want to pay for things that don’t work, are dangerous, or expensive approaches that offer no benefit over cheaper alternatives. It’s not a bad system.

No one in their right might would question the goal. If the health care system pays for medical snake oil we all pick up the tab, collectively, as a society—both in dollars lost and in sicker people.

But that said, separating the wheat from the chaff is no easy matter. The HTA relies heavily on searching clinical data to form “evidence based” reports on medical technology effectiveness.

But the well may be poisoned.

Author Carl Elliott in his chilling book “White Coat, Black Hat” claims that as much as 40% of the content of so-called peer reviewed medical journals isn’t real science, but may be material that is actually written by the pharma industry and “edited” by medical academia desperate for publication credits in their vicious publish-or-perish environment.

Of course, if that proves true, we’d expect the side effect to be that stuff which doesn’t work very well might look better on paper than it really is. But still, this illustrates the difficulty of separating commerce, greed, and good science from medicine and health care.

On the other side of the coin, cutting edge approaches may not have a sufficient track record of success under their belts to look good on paper, even if they work, are safe, and are cost effective.

Truly, the Devil is in the details.

And, of course, many more times than once, clinical research has later been proven to be flat-out wrong. Consider the epic drug recalls of medications that seemed safe in clinical trials only to prove dangerous once unleashed on the public. Vioxx comes to mind. Fen Phen comes to mind. A dark cloud hangs over Avandia, once the most prescribed diabetes medication on the planet.

And yet, I’m impressed by something that strikes me as unique and courageous about the HTA approach: cost is openly discussed and considered as part of the coverage review, unlike insurance companies who mainly look at money while pretend to only be interested in science.

I think Washington state deserves kudos for recognizing the inherent weakness in fact finding, and for designing the HTA so that all the stakeholders can be heard and be involved at each step in the process to provide for balance.

But most importantly, in the end, the state has put the final say in the hands of medical professionals who actually work in the trenches. It beats the hell out of the status quo where a Wall Street Suit who’s only looking at a balance sheet decides my health destiny.

And the mere fact that test strips and CGMs for kids weren’t kicked to the curb may be the ultimate testimony that this system actually works.

Today at Ask D’Mine

2011-03-26T08:17:00.000-06:00

Today I’m tackling a question from a type 2 who hates to “poke his finger” and might just be watching too much late night TV. Oh, and I tell a type 1 in New Jersey that she should eat, drink, and be merry—with a few caveats, of course.

Go check it out. Right now. And don’t limit yourself to reading. Join the fun. Ask me questions! At the top of the column there’s one of those little email buttons. Oh, but don’t send me naked pictures and stuff, ‘cause the email goes to Amy and Allison first and I don’t want you to be embarrassed….

www.diabetesmine.com

Moving Day

2011-03-19T10:30:00.001-06:00

I take one last look around to make sure I didn’t forget anything.

Everything is boxed up, ready for the movers. My antique typewriter. My pens and pads. My computer with it’s better-than-sex wave keyboard. All my reference books.

I’m happy to be leaving, and excited about where I’m going. But I’m also kinda sad too. Bittersweet, I guess they call it. After all, I’ve been in this place a long time.

Yep. I’m moving to Diabetes Mine, Amy Tenderich’s diabetes über blog, where I’ll be penning a new column for her site.

I’ve been reading Amy since 2005. And that’s 2005 B.C., people. Or at least it seems that long. I’ve always called her site “the New York Times of diabetes.” Yes, technically it’s a blog, and written with blog flare, but it’s really an unparalleled news site. If it’s happening in diabetes, Amy already knows about it.

I check her site each morning before I go to the clinic. I figure if they cured diabetes overnight while I was sleeping, Amy will have the scoop. And if they cured diabetes overnight while I was sleeping, there’s really no reason for me to commute to the clinic, now is there? I’d need to stay home polishing my resume and planning a new career. I think I might enjoy writing trashy romance novels for my next act. Whaddaya think?

Anyway, given how I feel about the site, I jumped at the chance to join her team when the chance came along. Amy has long limited Diabetes Mine to Mondays-Fridays, but like any major paper, it’s time to take on the weekend. And thus was born the Weekend Edition.

The column I’ll be writing is called Ask D’Mine. It’s a Q&A thing. So yeah, I’m now like the Diabetes Dear Abby.

New home. New venue. New format. But count on my style staying the same. Plus you can count on me posting more often, because Amy will personally fly to New Mexico and kill me if I don’t have a column for her every week. No, really, she will. It’s in the contract. Right here…. oh wait… in the fine print it actually says she can send some guys in black trench coats and mirrored sun glasses to kill me; she doesn’t have to do it herself. Ah. But I’m still feeling just as motivated.

I’ll be the main author of the new column. Every once and a while Amy or her right hand woman and rockin’ assistant editor, Allison Blass, may step in to help me with, you know, girl stuff.

I won’t totally give up on LifeAfterDx. For one thing, I don’t think Amy is going to let me say “fuck,” so I’ll have to check back in here periodically to get it out of my system.

But hey, the first column is up. Right now. Today I’m tackling questions about how to stock up the medicine chest for natural disasters when your insurance company won’t cooperate, whether or not a doc gave a newly diagnosed diabetic bad advice, and infusion confusion for the father of a 16-year-old boy.

Go check it out. Right now.

Wait! Wait! Hold on, I forgot to tell you something! Come back! Come back!

Everyone back in the room again?

OK, what I forgot to say is readers ask the questions. You can ask the questions. In fact, I want you too. Click on the link. Ask me anything. No holds barred. If I don’t know the answer, I’ll find out.

Alright. I think that’s it. Now you can scoot over to Diabetes Mine and check it out. And be sure to go back again on Sunday to check out the new Sunday Funnies, which are wickedly funny cartoons about diabetes penned from the warped and wonderful mind of my good D-buddy Haidee Soule Merritt. Yes. Diabetes can be funny and I think it’s good medicine for us to sometimes laugh at our lot in life.

www.diabetesmine.com

The Saturday Share #17

2011-03-12T08:00:00.001-07:00

Doing my part to keep internet diabetes information fun and accurate I’ve been two-timing my blog by answering reader’s questions over at Sharecare as one of their “Experts.”

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Does diabetes skip a generation?

My “Expert” answer: What a cool question! And to be honest, I really don’t know the answer, but I’m happy to speculate. Type-2 Diabetes, the most common kind, has a very strong genetic component and it’s considered normal to see many generations of one family have it. Even the less common Type-1 Diabetes may have some genetic components as well.

So we definitely see diabetes pass from generation to generation in many families. We also see it pop up where it never was before, but of course every human is the joining of two family trees, so it’s possible to get “diabetes genes” even though neither your mother or father’s side had it.

But as to skipping a generation. Hmmmm…. I don’t think so. Things that “skip” tend to be recessive traits, like blue eyes. In the case of blue eyes, you can carry blue jeans (so to speak) but you need to hook up with a blue-eyed person to get blue-eyed children. Diabetes genes seem to be more like the dominant kind. I think it more likely that each generation will be equally pre-disposed, but that some generations might not trigger the genes.

Remember that having the genes for diabetes does not guarantee that you'll get it. The genetic predisposition for diabetes still has to be triggered to get the disease.

Those triggers tend to be a magic combination of age and weight. Generally the fatter you get at a young age, the more likely you are to develop full-blown diabetes. If you had a family where the diabetes genes ran strong but one generation was more fit (or died younger) than typical, I think it is possible that diabetes wouldn’t manifest in that generation.

But the diabetes genes would still be there. They just wouldn’t be active, so it might appear to “skip” that generation simply because none of them developed diabetes.

Still, I’d be willing to bet if we took a member of that generation and fattened them up enough, they’d get diabetes too.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #16

2011-03-05T08:00:00.002-07:00

Doing my part to keep internet diabetes information fun and accurate I’ve been two-timing my blog by answering reader’s questions over at Sharecare as one of their “Experts.”

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: How does blood glucose affect the way I feel?

My “Expert” answer: First, the myth busting. Anyone who doesn’t check their blood glucose because they can “feel” what level they are at are kidding themselves. None of us are that good, and the way a given glucose level affects you on Monday won’t be the same as it affects you on Wednesday.

That said, there are a few general rules. Let’s start with high glucose. The first symptoms of high blood glucose are generally felt by your loved ones, not by you. For example, I personally don’t feel a thing when my blood glucose is a little high. But my wife sure does. According to her, I get “pissy” when my blood sugar is above 200 mg/dL.

If I go over 300 mg/dL even I notice that I’m… uh… irritable.

Above 400 mg/dL I start getting sick to my stomach.

Above 500 mg/dL every part of my mind and body feels like crap and I just want to die.

Other common effects of high blood sugar may include blurry vision, big-time thirst and hunger, and running to the bathroom to pee…. a lot (both frequently and volume).

On the low end, especially if your blood sugar is dropping rapidly, the body sends out a series of warning signs to alert you to the trouble. These commonly include shaking or shivering, excessive sweating, hunger, dizziness, and feeling like you are in an elevator whose cable’s just snapped.

It’s miserable.

But it can save your bacon.

If you’ve been low and are “rebounding” following treatment, you’ll experience great fatigue, soreness, and a bit of mental fog. Sort of like a hangover. Well, a hangover following a fist-fight with a gang of sailors that you lost.

The reason our bodies and our minds give us trouble outside of the normal range is because it’s unhealthy for glucose to be too high or too low. When you are high your blood is toxic to your tissues. When you are too low, your brain is suffocating, deprived of the glucose that keeps it running.

Of course the best way to avoid all these nasty side effects is to keep your blood sugar in target as best you can, most of the time.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #15

2011-02-26T08:00:00.001-07:00

The Saturday Share #14

2011-02-19T08:00:00.001-07:00

Doing my part to keep internet diabetes information fun and accurate I’ve been two-timing my blog by answering reader’s questions over at Sharecare as one of their “Experts.”

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: How can I get my husband to check his blood sugar?

My “Expert” answer: Ahhhhh… now that is a tricky one! I love these kinds of questions! OK, it’s clear to me that he doesn’t check his blood sugar, and it's also clear that you understand that it’s important that he does.

In a perfect world we’d get him on the couch with Freud and find out what his malfunction is. Of course Freud is dead. Who else can we use? Have you asked him what the issue is?

You might have, of course. But if you haven’t asked yet, you should. There might be a good reason, or at least a reason that seems good to him. I need to remind everyone that men and women think differently, and even if you don’t agree with the other gender’s view, it doesn’t make it less valid. So if he gives you a reason that seems silly to you, you need to bite your tongue, respect his view and help him to find a solution.

Now people don’t test for lots of reasons. A common one, is that if you haven’t been properly trained to do it, it can hurt. Hey, no one likes pain. If he’s finding the testing painful look to the lancing device. Most have variable depth settings. The perfect setting is one right between the swearing-like-a-sailor depth and the milking-the-finger-and-praying-for-blood depth. The idea is to get a small drop of blood with little or no discomfort and with little need to squeeze the finger. It may simply be that his depth is set too deeply.

Generally, larger numbers mean deeper lancing. Now, still on the pain theme, when was the last time anyone changed the little needle in the lancing device? Oh? Back when you changed the smoke detector batteries? So the folks that sell the needles want you to use a fresh one every time. Most of us don’t, and I don’t see any need to change that often. But they will get dull and you do need the change them. It depends on how tough your hide is, but a lance can get from 5 to 25 tests.

Another common reason that people don’t test is they haven’t been given any knowledge to use with the numbers. If he is only on oral meds he may feel he’s helpless to change his numbers. He’d not. He can study how various foods and activities change his blood sugar. It is a game. A puzzle to be solved. A battle to be won.

And if he’s just a stubborn old coot you can resort to any of the following: appeal to sense of loyalty (do it for me); bribe him (do it for something in the bedroom); or threaten him (do it or I’m outta here).

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #13

2011-02-12T08:00:00.000-07:00

The Saturday Share #12

2011-02-05T08:00:00.003-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Will my children inherit diabetes from me?

My “Expert” answer: If you come from one of those families with an intergenerational family history of diabetes (mom and pop, sibs, grandparents, uncles, cousins)--the odds are pretty good that your kids will inherit the family tradition.

But fear is the only thing you need to be afraid of. Working with a great many Hispanic families with intergenerational diabetes, I’ve found that families develop a sense of fatalism about the disease that gets in the way of early treatment.

This is why I’m always harping on the fact that diabetes isn’t really the problem at all. It’s the high blood sugar from diabetes that’s the problem. It may seem like a small difference, but it is not. High sugars are the kindling that start the fires of diabetes complications. All that scary stuff (kidney failure, blindness, amputations, death) that happened to grandpa were blood sugar driven, not diabetes driven. If you take your diabetes by the reins and control it, you don’t need to share in your family’s fate.

So I want you to shift your mental focus. I don’t want you to worry about whether or not your children will inherit your diabetes; I want you to assume they will. Then I want you to set a good example for them by being open about your diabetes and striving hard to control it. Show them the way to health by your own actions. Eat smart. Move smart. Test often. Talk about your numbers. Take your damn meds.

And for your adult, or overweight teenage children; get them tested every year. Diabetes is unique and beautiful in that the keys to treating it are largely in your hands. I can think of no other disease where our own behavior can do so much to help or hurt us. So don’t fear for your children. Equip them with the tools to live in healthy harmony with their diabetes.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #11

2011-01-29T08:00:00.003-07:00

The Saturday Share #10

2011-01-22T08:00:00.003-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Where on my body can I do the diabetes test?

My “Expert” answer: Many meters are FDA approved for “alternate site” testing, commonly on the forearm. The idea is that this type of testing is less painful than lancing fingertips.

However, they are not approved by yours truly. :-(

And to explain why, we have to talk about cops. It used to be that when police cadets were trained to use their guns they lined up in a nice neat row, standing straight and tall, drew their pistols, and fired at paper targets. They were taught to “pocket” their expended cartridges when reloading to keep the shooting range nice and neat.

Or at least that’s how they were trained up until a notorious shootout about three decades ago when an armed felon gunned down four cops. One of the deceased was found with empty shells in his pocket. In a life and death shoot out he seemly took time to put his expended cartridges in his pocket; a delay that may well have cost him his life.

In the aftermath of the incident, studies of how people react under stress were undertaken in earnest. It turns out that when the you-know-what hits the fan people fall back on their training and habits. Even when they should know better.

Now, strange bit of blood sugar trivia. The blood in the tips of your fingers carries the most accurate and up-to-date information. Blood sugar in your forearm is old news, sometimes as much as 20 minutes out-of-date. If you use alternate sites to test your blood sugar, you are getting old news. Much of the time this does not matter.

Unless your blood sugar is dropping quickly, which can possibly be life threatening. The folks that make the meters will warn you not to test on your arm if you suspect you are dropping, but guess what? Under stress, with dropping blood sugar (which tends to make us less mentally sharp anyway), what do you think you are going to do? Yep.

You’ll resort to your training. Your ingrained habits. My feeling is, don’t get into bad habits under sunny skies and you won’t resort to them in stormy weather. You don’t want to be putting shell casings in your pocket when a low blood sugar is gunning for you.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #9

2011-01-15T08:00:00.003-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Why is my A1C high when my blood glucose levels are in my target range?

My “Expert” answer: I want you to picture a freshly fried doughnut hole, just out of the deep fryer. Steam wafts from its surface. Still gleaming wet with oil, it’s sent spinning across a tray of powdered sugar. As it tumbles, sugar sticks to the wet oil, coating it, covering it as it rolls and bounces along.

Well, the same thing happens to your red blood cells. As they tumble and spin and roll through your blood vessels, sugar molecules stick to their skins. Or another way to think of it is to picture a windshield of a truck after driving through a swarm of mosquitoes. Splat-Splat-Splat-Splat-Splat! (OK, I just threw that in so you wouldn’t log off and drive straight to Dunkin Doughnuts.)

So an A1C test is a measure of how much of the skins of your red blood cells are splattered with sugar, which in turn gives as a picture of the blood sugar environment in which the cells lived, which in turn gives us a notion of your average blood sugar over the last several months.

So the A1C test looks at average blood sugar, while your fingersticks look at moments in time. The most common cause of a difference between A1C and fingersticks is that the fingersticks are not frequent enough, or are not at the right times to catch the elevated blood sugars that are jacking your A1C to higher levels.

For instance, if you are only testing in the morning, you are missing possible elevations after meals or overnight while you are sleeping. The A1C test is not perfect. For instance, if your sugar was ranging scary low to scary high you might get a number that looked pretty good. That said, most “false reads” are good looking numbers that mask troublesome variability. Additionally, if you are anemic, you can also get a false low, as your blood cells don’t last as long as typical.

But if your A1C is high, there are some high blood sugars lurking somewhere. And that is exactly why we do both fingerstick testing a A1Cs. They serve as checks and balances against each other.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

To-do list

2011-01-08T16:37:00.001-07:00

Using my sexy new Fisher Space Pen (with medical caduceus laser engraved into the barrel) I was able to scratch another of the WHO’s top ten off my list. A bold black line through the word “Italy.”

Taming the Tiger: Your first year with Diabetes was translated into Spanish in 2009.

A German language version is in the works.

Now I’ve hooked up with a translator for Italian. Hoo-raw!

Next on the hit list:

Hindi, the Official language of India. Maybe I need Bengali too?

Japanese.

Chinese.

Russian.

Come on people. I’ll bet I’ve got readers who can speak and write all of these languages. Don’t be shy.

Don’t force me to buy the following classified ad:

Wanted: Diabetics or Persons with Diabetes fluent in Hindi, Japanese, Chinese, Russian, or any other language on the planet for diabetes education translation project. No pay. Lots of glory. Satisfaction of doing the right thing for your fellow humans. Great working environment (your home). Short job, only 6,000 words. Word-for-word translation not needed, I’m seeking people who can translate spirit and intent. Contact Wil at LifeAfterDx. Sorry, the English, Spanish, German, and Italian positions have already been filled.

The Saturday Share #8

2011-01-08T08:00:00.003-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: I have diabetes, should I be concerned about a small red foot blister?

My “Expert” answer: Absofreakinlutely. Not to scare you, but we D-folk account for over half of the amputations in the US, all of which start with something simple like a blister.

For what it’s worth, that’s around 90,000 amputations every year, a popular club, but not one you want to join.

For a whole host of reasons, those of us with diabetes heal more slowly than other people, and we are also a risk from suffering from reduced sensation in our feet. That’s important because it means you might injure the bottom of your foot and not even know it.

But the great news is that you are aware of your blister. That tells me you are paying attention. Taking care of any foot injury early on is the key to keeping your toes, feet, and legs attached to your body until you die at the age of 114 after being hit by a FedEx truck while out for your early morning jog.

Two tips for everyone: buy slippers. Yeah, I know, I know. It is a hard habit to get into, but you should never be wandering around barefoot. Keep slippers by your bed so if you get up at night to answer a call of nature you don’t step on something sharp the cat drug in or stub your toe on a wall in the dark. (I’ve been preaching this to my patients for years but had to break a toe twice to actually start doing it myself.)

Second tip: kiss your feet goodnight every night. That simply means stop, look, and feel. Check in with your feet as you slip under the covers. Make sure everything is A-OK. No cuts. No splinters. No blisters. No odd color. If you have a hard time seeing the bottoms of your feet, get a hand mirror.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

The Saturday Share #7

2011-01-01T08:00:00.003-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Can I take OTC drugs instead of levothyroxine as I cannot afford it?

My “Expert” answer: Yikes! Breaks my heart when I hear stories like this, but I have good news, levothyroxine is a generic thyroid hormone replacement medication, and as such, is on the $4 list at Wal-Mart. Surely you can swing $4 a month? That’s cheaper than most OTC meds, after all.

Your thyroid med is not optional. If your doc prescribed this medication, you are hypothyroid, and that funky little organ in your neck is under producing the chemicals that drive your metabolism for the whole day. Without your pills at best you’ll be dragging through the day, and at worst will fall asleep at the wheel driving.

Oh, and be sure to take it in the morning with a nice glass of water quite a bit before you eat, and without any other pills. Like a spoiled toddler, levothyroxine does not play nice with others.

But there are lots of other needed meds for which there are no generic alternatives, and at first glance that may seem pretty hopeless, so I want to spend a quick moment on that. Some frontline drugs can be $200, $300, $400 a month or more.

If you have no health insurance, or if you are in Medicare Part D’s “doughnut hole” you will probably qualify for Patient Assistance. The big pharma companies all give hundreds of thousands of dollars of drugs away every month. Check the website of the medication you need, or contact your local community health center. In addition to Patient Assistance, many Federally Qualified Health Centers have what are called 340B pharmacies. The 340B is a non-profit cash only pharmacy that sells meds at the price the Veteran’s Administration pays, plus a very small administrative fee.

The prices can range from fair to amazing, sometimes literally pennies on the dollar.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

Another year, another copyright

2011-01-01T00:01:00.000-07:00

Rearview mirror

2010-12-31T11:59:00.008-07:00

I’m lying in bed with the covers pulled up to my nose, debating about whether or not to get up. True, the sun is out, but according to my multifunction clock it’s 13 degrees outside and I can hear the wind howling. Inside my bedroom it’s 64 degrees.

Then my cell phone decides for me. By ringing.

There’s static on the other end. Then a rapid fire female voice, tinged with panic, disjointedly careening from English to Spanish to English again. I try to get my brain firing on all four cylinders.

What? Who? Where? When? How? Those were the key questions in the old days of journalism, now conveniently replaced with the more succinct and all-encompassing What-the-fuck?

I’m not clear what’s going on. But something about vomit, ketones, and blood sugar. So it can’t be good. The fading in-and-out of the phone is a good sign that the caller is barreling down the interstate towards the ER.

As the signal clears and my brain wakes up, it’s finally clear who I’m talking to.

Shirley Temple is on her way to the Emergency Room.

OK, so the real Shirley Temple isn’t my patient. But one of the little T-1s under my care is the spitting image of Ms. Temple back in the day. This child even has a penchant for pink.

Job One, in cases like this, is to calm mom the fuck down. Job Two is to get the what-the-fuck-facts. In this case it seems the kiddo was running on the high side most of the night. They had been taking corrections via the pump. First thing this morning, the kiddo complained of stomach pain, then promptly threw up.

“I checked her blood ketones when she threw up and the meter said 4.3” the mother told me. “I thought ‘that can’t be right’ so I washed her hands and checked again and it read 4.1. That’s when I threw up.”

So a super-quick blood ketone refresher for you readers. For those of us with Type-1 Diabetes, when you run out of insulin your cells can’t get the sugar they need to live from your blood, no matter how much sugar that there might be in your blood. Your body’s cells turn into a pack of savage cannibals. Rather than starve, they chop up your body fat and throw it into big iron kettles. Can you hear the African drums in the back ground? Thump-thump-thump. Thump-thump-thump. Thump-thump-thump.

The smoke from the cannibal’s cooking fires darkens the jungle’s sky. In your body, the smoke from cells eating fat is called ketones. Too many ketones in your blood will kill you. They are the cause of the “diabetic coma.”

Historically, we checked for ketones in the urine with little dip-sticks that turn pretty colors. You then had to try and match the color of the stick to the color chart on the side of the bottle. But don’t wait too long or check to early.

Nowadays, thanks for our friends at Abbott, we actually have a way to test ketones in the blood itself with special strips that work in the Precision Xtra® meter. Under normal circumstances if I check mine, they will always be at zero, but I’m told that below 0.6 mmd/L is considered “in the green,” or normal. Between 0.6 and 1.5 mmd/L is the “yellow zone,” which translates into you need medical attention. Right now. Above 1.5 is “red lined.” You are now in a world of hurt. You are going DKA. Your blood is turning to acid. By now your breath will be fruity. You will be throwing up. Atropos is sharpening her scissors. I actually never knew how high above 1.5 you can go. But now I know that it’s possible to clock a reading in the fours and live to tell the tale.

Meanwhile, back on the phone, I confirm the kid’s breath is fruity. How’s her breathing? I ask.

“I don’t really know… once I totally freaked out, she totally freaked out.”

It’s OK, I think you are doing great.

Job Three is a pro-active guilt-ectomy. No matter how bad you may think it is to have diabetes, it’s nothing, nothing, nothing even 1% as bad as being the mother of a Type-1 kiddo. The level of responsibility and guilt they carry over things they cannot control is astounding.

I acertain that the mom has givien the little one a 5 unit intramuscualar shot in the arm. Super. Awesome. I’m soooooo proud of you. You’re doing everything perfectly.

“I need to live closer to the hospital.”

Oh, nonsense. Your house is beautiful and you own it free and clear. Why would you want to move to Santa Fe and pay rent just to save time when going to the ER a couple of times per year? Diabetes is fast, but not that fast. You have plenty of time with these highs, and if she were to go really low and go lights-out the ER would just use the exact same glucagon kit you have to bring her back.

“What if I can’t find the kit? What if it’s in my purse? Damn! I should keep the house cleaner!”

Hey, don’t worry about it. Don’t worry about it. I’ll give you a second kit on Monday. You can double-sticky tape it to the wall above her bed.

A relaxed exhaling of breath, and a little laugh come through the static. “Right next to her Virgin Mary, huh?”

Yeah, our Lady of Low Blood Sugar.

“Best to keep the whole team together, we need all the help we can get.”

Amen.

“Oh… ah… did I remember to say ‘good morning?’”

I hit the bathroom for a speed shower, get dressed and call the mom back again. They’re now at the ER. Shirley Temple’s CGM is showing a drop. She’s drinking water. Her skin color is normalizing. The emergency shot in the arm her mother gave her is kicking in.

Do you want me to come over to the hospital?

“No. No need. But thanks for offering. And thanks for being there for us.”

You’re welcome.

“It’s been a pretty crappy year, huh?”

Yeah, but it’s almost in the rearview mirror now.

So speaking of the end of the year, Deb, Rio, and I have been invited to a “kick the old year in the ass” party tonight (as opposed to a “happy new year” party). I, for one, am looking forwards to seeing 2010 behind me.

That said, just the other day, one of my spiritually well-grounded friends made me focus on the GOOD things that happened over the last year, rather than the crap. Paraphrasing quite a bit, she basically said if you spend all year in the outhouse, of course you are going to see a lot of crap.

Like a police detective she interrogated me on good things. “How's your diabetes? You don't seem to be in the ICU at the moment.”

“How is your beautiful child? Oh, and I see you still have a house, and a car, and a job.”

And so on.

I think the whole world has been through such a bad time lately that many of us are chronically tense and waiting for the other shoe to drop.

So for the new year, my dear friends, let's all try to change what we focus on. What we dwell on. There is sunlight and shadows out there, and we can choose to sit in the sun or sit in the shadows.

Damn cold here today.

A patch of sunlight sounds lovely.

Calling all Tiger tamers

2010-12-26T10:58:00.001-07:00

The “Free Tiger” project is going pretty well, thanks to all of you in the social media space. But now we enter phase 2 -- more tongues. Tiger is in English and Spanish. I’m working with a German diabetes advocate to translate and adapt it into his language and culture. Any of you advocates out there speak two languages well enough to help me start filling in other gaps in the tower of Bable?

According to the World Health Organization, these are the top ten countries for diabetes:

India
China
USA
Indonesia
Japan
Pakistan
Russia
Brazil
Italy
Bangladesh

I’m looking for folks who can translate not just words, but message and intent as well. I’ve just started reading Rio a fresh translation of Jules Vern’s 20,000 Leagues Under the Sea. I’ve always regarded the novel as technically interesting, but a ponderous book in the literary sense. Now it turns out I was the victim of bad translation. Vern was as brilliant a writer as he was a technologic visionary. He is a joy to read.

Any of you out there feel called to help me take this message to our brothers and sisters who talk, read, and think in other tongues?

The Saturday Share #6

2010-12-25T08:00:00.002-07:00

Merck’s Glass beads

2010-12-22T08:00:00.004-07:00

Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will. And He's allowed me to go up to the mountain. And I've looked over. And I've seen the promised land. I may not get there with you. But I want you to know tonight, that we, as a people will get to the promised land.

---Dr. Martin Luther King, Jr.

Memphis, Tennessee
1968

Back in the year 1626 an enterprising fellow named Peter Minuit made one of the greater real-estate deals in history, and for that act has been variously painted as either a genius or a rouge of the highest order.

Yeah, he’s the dude that bought Manhattan Island from the Natives.

For what it is worth, and totally off subject, this transaction is not what it first appears. I’d been taught in grade school that he got the real-estate for some glass beads worth a few bucks at most (those silly savages). Later, I often read that it was $24 in trade goods. Newer research has shown that, due to a historical translation error, the value was $37.98. Of course, a buck went a lot further in those days. In today’s dollars we’re looking at something like $1,500.

Even at that bargain rate, I still couldn’t afford to buy Manhattan.

But I digress. Did the Natives get swindled? Probably not. They didn’t get just some glass beads. They got the 1600’s equivalent of i-Phones and Dell computers. The trade goods included iron kettles and axe heads, hoes, and metal awls. Some historians have called this history’s first high-technology transfer.

And the money? Well, 384 years later Manhattan is worth something like 8 trillion bucks. Not too bad for a swamp between a couple of rivers. But before you flame me in comments, consider the brilliant compound interest analysis by Jeffrey Strain. He crunched the numbers and said (paraphrasing, of course), “well, what if the money had been cash? And what if the Natives had just parked it in a savings account?” Yeah, I know, no such thing at that time. Still, it is interesting to note that the Natives would be trillions ahead in the deal given the power of compound interest out-stripping the power of the rising value of real-estate.

So why are we talking about this? Because Merck just bought the future of the entire 116-billion-dollar-per-year diabetes business for a paltry 500 million bucks. This move makes the purchase of Manhattan for fifteen hundred bucks look like a bad deal by comparison.

I want you to remember the name Dr. Todd C. Zion. He’s the Dr. Frederick Banting of the future. As part of his doctoral thesis in chemical engineering from M.I.T., he developed something he calls SmartInsulin™.

I call it THE game changer.

So what the fuck is SmartInsulin™, you ask? Well, quoting from his company’s website, it’s “a layered, biocompatible and biodegradable polymer-therapeutic that is bound to an engineered glucose-binding molecule. Insulin is released from SmartInsulin only when the therapeutic is unbound by the presence of a specific glucose concentration.”

Don’t panic, I’ll translate that to English in a moment.

Oh, never mind. I’ll do it right now. SmartInsulin is the ultimate NPH. Remember NPH? In the pre-Lantus and pre-Levemir days it was the closest thing we had to long-acting insulin. It was an insulin suspension. In other words, bubble-wrapped insulin. Once injected, the bubble-wrap dissolved a bit at a time, releasing the insulin to do its thing. Both Lantus and Levemir are higher-tech, improved versions of the concept.

But SmartInsulin raises the bar. Instead of just dissolving at a set rate, the bubble-wrap is glucose sensitive. In effect, it’s insulin that only works when your blood sugar is high. And it stops working when your blood sugar is normal.

In short, SmartInsulin is a bio-chemical artificial pancreas. No pump needed. No CGM needed. No complicated algorithms. No gear at all. It’s an elegantly simple, self regulating system. As billed, it would be a once a day shot. The insulin stays nice and cozy and warm in its polymer blanket until your blood sugar begins to rise. Then the polymer dissolves, releasing some insulin. Which lowers you sugar again. Then the polymer stops dissolving.

Who knows? The next stage might be once a week shots. Or once a month.

Blood sugar automatically controlled. No matter what you eat. No matter how you move. It’ll be a therapy indistinguishable from a cure, except for the monthly payment to stay healthy.

And what will they charge? Pretty much as fucking much as they want. And this time insurance will pay. Because it will be all they have to pay. No more gear. No more durable medical supplies.

No more expensive complications.

If it works, they won’t even have to pay for eye exams any more, as there will be no risk of damage from high blood sugar.

In a Press Release over at PharmaTimes Online and SmartPlanet, Merck’s head of diabetes and obesity a research, Nancy Thornberry, is quoted as saying "if this investigational technology is ultimately approved for use with patients, it could provide an important new therapy [which] holds the potential to significantly impact the treatment of this disease." And reading between the lines, as she wipes the drool from her chin, I could have sworn I heard her add “plus it will make us and our shareholders sticking fucking rich!”

I realized the significance of SmartInsulin when I first read about it a few years ago. I just figured that if it worked, it would never see the light of day. Too many people had too much to lose. And actually, this is where Merck will come to our rescue. You see, of all the big players, Merck really doesn’t have much going on the diabetes arena. Right now all they have is the DDP-4 Inhibitor class med Januvia, which will be generic by the time SmartInsulin is ready for market. They haven’t got a product line to sell for the plague of the 21st century. They have nothing to lose and everything to gain by getting their mitts on a game-changing med.

If SmartInsulin gets approved, what does Merck get for their 500 million? Instant access to 30 million customers overnight. And if the CDC is right in their projections, fully one third of the US population could be Merck customers by 2050.

SmartInsulin will destroy the diabetes industry. All the other companies will go down in flames, their CEO’s will be running hot dog carts on Wall Street or pan-handling in Times Square.

If SmartInsulin lives up to its promise, there will be no need for other medications for our blood sugar.

There will be no need for meters. Or strips. Or lances.

There will be no need for CGMs.

Or pumps.

Or diabetes educators.

In short, SmartInsulin will be a de facto cure, but one with a perfect pharma edge. With their product we’ll live normal, healthy lives. Without it we’ll die. It’ll be the final evolution of insulin, probably just in time for the 100th Anniversary of its discovery. If it works, there will be no motivation, no incentive, for a real cure. We’ll forever be medicine addicts. Trapped like vampires.

It’s slavery, I think. Still… I would use it in a heartbeat.

If I were you, I’d sell the rest of your diabetes portfolio and buy Merck stock.

The Saturday Share #5

2010-12-18T08:00:00.004-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

So to do my part in trying to keep internet health information correct I’ve been two-timing my blog by writing over at Sharecare were I am one of their “Experts” answering diabetes questions posted by readers.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: What causes diabetic foot problems?

My “Expert” answer: Scary but true story: a man with diabetes came home from work super-tired one day and decided to grab a quick nap. He sat down on his couch, took his shoes off, slipped his glasses into one of the shoes for safe-keeping and nodded off. (About half of you out there know where this is going….)

He was woken with a start by the phone ringing. His wife had just been in a car accident and was in the Emergency Room. He jumped off the couch, pulled his shoes on, and dashed off to the hospital. Don’t worry. She wasn’t badly hurt. But it was eight hours later before they both got home. When he took his shoes off again he found his glasses. In the shoe. For eight hours he'd worn a shoe with a pair of glasses in them and had no clue.

I saw his custom-molded shoe insert, still bearing the exact imprint of his glasses, sort of like fossilized dinosaur tracks.

So, to answer your question, diabetic foot problems actually happen because in some people, many years of high blood sugar causes them to lose all sensation in their feet. Most of us get annoyed when we get a pebble in our shoes. The hero of our story had an entire pair of glasses in his shoe and couldn’t feel it!

Lack of sensation is exactly half the story. The second half is that most people aren’t in the habit of looking at the bottom of their feet, largely because there is no real reason for most people to do so.

If you don’t feel pain when you injure your foot. And you don’t look at your feet, how would you know if you’d been hurt? Right. You wouldn’t.

And that’s exactly what causes 84,000 non-traumatic amputations every year in our county. Of course all amputations are traumatic to the amputee, but in this case we simply mean medically necessary amputations that aren’t the result be being run over by a riding mower or being in a car accident.

The exact progression is: injury, infection, ulcer, gangrene--a.k.a. tissue necrosis, literally the death of part of your body that is still attached to you--and finally, amputation.

So the single best thing you can do to prevent this from happening to you is to “kiss” your feet goodnight every night. Look at your feet at bedtime. If you are to… um…ah... too hefty to see your feet use a hand mirror placed on the floor. Make sure everything looks OK. Start doing this now, even if you have great sensation in your feet, that way if you lose it in the future you will already be in the habit of taking care of them.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

Don’t judge people by their organization

2010-12-15T08:00:00.002-07:00

I’m the innocent bystander
Somehow I got stuck
Between the rock
And a hard place

And I’m down on my luck
Yes I’m down on my luck
Well I’m down on my luck

I’m hiding in Honduras
I’m a desperate man
Send lawyers, guns, and money
The shit has hit the fan

--Warren Zevon, 1978

The American Diabetes Association frequently pisses me off.

So much so, and so often, that I don’t even know why I keep expecting better of them. I’ve long maintained that all the ADA is interested in, if you are a diabetic, is your wallet.

Which would be OK, if they were more up front about it. They are, after all, an organization by, for, and about doctors. I guess my main issue is they market themselves as THE organization for people with diabetes, and frankly, that’s a lie.

Don’t get me wrong, I’m glad the ADA exists. They excel at what they excel at. Research. Setting standards. Educating doctors. And, when the shit has hit the fan, they are the lawyers, guns, and money folks.

Well, maybe just lawyers and money. But when you have a problem with the government and diabetes, they’ve got your back. Taking on “the man” is one of the things they are good at. Fired from your job ‘cause of the big D? School hassling your kid over taking shots at school? Cops throw you in jail for being hypo?

Call the ADA.

The ADA really is the White Hat Sherriff when it comes to laws that protect those of us with diabetes. They are also always on the lookout for new and wrongful laws that effect us, and their legislative advocacy has shot down many a law that would chill you to your bones before it even had a chance to take effect.

But where the hypocrisy hits the fan is in the way the ADA presents itself as a caring educational organization. In this arena, the ADA is like a law book with a dust jacket disguising itself as a romance.

A major failing of the ADA is what the rest of us learned in kindergarten: the world is a better place when we all place nice together in the sand box. Two appalling examples of this come to mind. First is the ADA’s refusal to really join in with the International Diabetes Federation on things of common interest, like, oh I don’t know…maybe World Diabetes Day?

The ADA has me seeing red by sticking with red (with no logo) as the color of diabetes while everyone else has gone United Nations blue with a cool circle logo. You all know the pink ribbon, right? Every year a little over 200,000 women in the U.S. are dx’d with breast cancer while well over one-and-a-half million Americans are dx’d with diabetes. I’m not trying to belittle the horrors of breast cancer. I’m just saying they have a better PR firm than we do. In terms of annual growth, we’ve got ten times the numbers but even most health care workers don’t recognize the blue circle. And having one of our flag ship organizations refuse to play with anyone else isn’t helping.

Anyway, I’ve gotten off track again. I had said there were two appalling examples of the ADA’s lack of kindergarten decorum. The second one pisses me off more, as it effects me personally as an author.

The ADA won’t in anyway promote a book that it didn’t publish.

I’ve known this for a long time. But I thought, stupidly, that maybe they might help out with promoting the free Tiger e-books for the newly diagnosed, seeing as they think they are the ultimate help-the-poor-diabetics organization.

So I crafted a plea and fired it off to them. 48 hours later I had my answer from a lady at their “Center for Information and Community Support.” I think I’ll just quote directly from the letter:

“Thank you for contacting the American Diabetes Association. We have received your e-mail regarding a resource.

Unfortunately, I am unable to assist you. As a rule we don’t promote or endorse non-ADA-published books. If you would like to advertise in our journals, please visit us at: www.diabetes.org/adrates”

Checking the rates in Diabetes Forecast, which the ADA modestly calls “the premier consumer publication of the world’s authority on diabetes,” I find that a single ad ranges in price from a low of $5,920 to a high of $25,990. Ummm…. OK, I don’t even make $25,990 per year in the first place (almost, but not quite). And of course, running an ad only once is pretty useless. It needs to be seen again and again. All the time. But even their smallest B&W ad, at almost 6 grand per month, for something that is free is just bad economics.

Oh yeah. Then they tried to sell me a membership and asked me to donate my time by “becoming an advocate or by getting involved through volunteering or participating in a local event.”

“Local event” is ADA slang for fund raiser.

OK. So let me get this straight. You won’t help me get the news out about something that’s free unless I pay you. But you want me to give you my time to help you raise money?

Huh.

Is there something wrong with this picture?

But before my blood pressure got too high, I got another email from the ADA. Different department. Different person. Different tone.

This person went to the Red Blood Cell Books site, and Amazon. And TuDiabetes. And Diabetes Living Today. This person read the reviews and commented that the Tiger books get “enthusiastic reviews” and seem “quite popular and effective.” The letter writer went on to say:

“I can tell that word will get out about the book. Unfortunately, the ADA is a bit more restrictive. Our current policy does not allow us to promote or distribute non-ADA-published books through our online resources or conference bookstores. We’ve had that policy for awhile and I know it won’t change in the near future.”

So I was still in the same sinking boat I was in before, but I felt better about it. It also served as a really important reminder. Organizations are like living organisms. Just as creatures are made up of individual cells with various functions, appearances, and personalities; so too organizations are made up of individual people. Each of those people has a mind of their own. They may not agree with the direction this ship is sailing in, but there is a limit to what they can do as a member of the crew.

What we need to remember is that any single person who works for an organization is not some kind of clone. We can (and should, must) fight to keep our organization’s feet to the fire. When an outfit like the ADA claims to be the “world’s authority on diabetes” we need to call them out on it. And keep calling them out on it until they become what they claim or stop lying about it.

But, but, but… We must never get personal about it. We must keep the high ground and remember that some (many, even most?) of the people in the organization may agree with us. Politics in our county has gotten revoltingly personal. We must be sure to not let our revolution fall to the same level. We need to speak with integrity about facts, and not fall to name calling.

Unlike those fuck-faces over at the ADA who… ah… oh…

Oops.

The Saturday Share #4

2010-12-11T08:00:00.004-07:00

I’m honored. Thank you.

2010-12-09T08:47:00.001-07:00

I just this second got an email via Facebook from Gina Capone, the woman responsible for getting me into this whole blogging biz. (3G--I can’t decide whether to send you diamonds or black roses.)

It seems I’ve been nominated for one of the prestigious 2010 DOC Awards.

Wow.

I feel like a star!

So I logged on to see what I’d been nominated for. Actually, I’ve been dual nominated, but not necessarily for the categories I might have expected—although I didn’t actually expect to be nominated at all, so hadn’t really given it any thought whatsoever. Oh well, if I’d known what to expect today, I would have just stayed in bed. What’s the fun in life if you know what to expect?

So…. drum roll…. I’ve been nominated as the “Blogger who we wish would blog more.” Wow. I’m speechless. Well, momentarily anyway. I’m sure I’ll recover. This strikes me as a very high honor indeed. That readers want to read more of your work is, by far, the highest praise a writer can get.

I’ve also been nominated as “Best Photographer,” which I probably don’t deserve as I don’t put photos in my blogs that often, and when I do, about half the time I’ve just pulled some clip art or public domain photos off the web to illustrate a point.

To my surprise, in looking over the categories, I see I wasn’t fucking nominated for “Best use of Bad Language.” How on earth did that happen? Based on the shit-storm that was created by using a sprinkling of f-bombs (to Quote Amy T) in my books I figured I be a shoe-in here. Although, that might not be the best award to list prominently on a resume anyway. Maybe I need to get more creative in my use of the good ol’ Anglo Saxon slang.

But seriously, thank you. Thank you. Thank you from the bottom of my heart. It is a great honor to be nominated.

Check out all the nominees and the categories over at:

http://docawards.wordpress.com/2010/12/09/2010-doc-awards-voting-part-1/

Biology Breakfast

2010-12-08T08:00:00.005-07:00

For three generations the men in my family have been the pancake makers, so much so that the thin crêpe-style family pancakes are known as “Daddy Pancakes.”

I make them for Rio about once a month. My father made them for me as a child, as did his father for him.

Of course, I’ve changed the recipe some, subbing Splenda for powdered sugar, and using sugar free syrup to lower the carb impact somewhat

Now, I can’t say for sure that grandpa made special shapes, but my Dad was a wizard when it came to artistic pancakes. Birds, flowers, rabbits. You name it. Once, as pancake master for a Kiwanis Pancake Breakfast fund raiser, he was actually able to make a pancake that looked like the Kiwanis logo.

No small feat. I wish I had a picture of the pancake.

But apparently I didn’t get the wizard genes from my father, at least not so far as pancakes are concerned. I am a closet artist at heart, but my pancake-art rarely comes out looking like anything I had intended it to. This has required me to become fast on my feet with coming up with explanations for what I’ve created.

That’s what happened today.

I usually duck the bullet by saying, what does it look like to you, Rio? To which, he’ll consider the pancake seriously and declare that it is a mockup of nuclear fusion in the engine of a starship. Exactly so! I’ll reply, slightly crestfallen that my mongoose came out so unrecognizable.

But every now and again Rio can’t divine a shape in the clouds of the cooking batter.

“What’s this Daddy?” he asked, nose so close to the griddle to risk burning it.

I fell back on the old ruse. What’s it look like, baby?

Rio shrugged one shoulder, “I have no idea what-so-ever.” And then he turned to me with those big brown eyes of his mother’s. Expectantly. Waiting for an answer.

One heart beat.
Two heart beats.
Three heart beats.

Cellular mitosis, I said.

Rio considered for a moment, then he turned to his mother, “Momma, does that really exist?”

His mother said, “Ummmmm… I think I’ll let your father explain that one to you.”

So while his mother buttered, syruped, jellied, and rolled his pancake up like a burrito, I sat with pen and paper and drew a cartoon sketch of how a single celled organism divides, cloning itself.

After breakfast we went on line and found pictures:

And even microscope video of mitosis in action. Very cool.

So what do you think of cellular mitosis? I asked Rio at the end.

“It’s pretty amazing,” he replied, eyes still locked on the screen.

Don’t you think your pancake looked like this?

A long pause, then, “Well… It was close enough, Daddy. It was close enough.”

Further proof of my guiding principal. If you don’t learn something new each day, you should have stayed in bed.

I rarely have a day I should have stayed in bed.

And I’m determined to make sure Rio’s life plays out the same way.

The Saturday Share #3

2010-12-04T08:00:00.005-07:00

The new Minutemen and a completely different kind of Tea Party

2010-12-01T08:00:00.000-07:00

Well, if the government wants you dead, it’s a least good to know it in advance, right?

So you can prepare. Or decide how to respond.

You can just lay down and let them kill you. Or you can put your affairs in order, and then lay down.

Or… you can fight. Maybe even get others who love you, or love your ideals, to fight with you.

A fellow T-1 has decided to fight. And he has asked me to join him. And I’m asking you to join us.

It started with a fax from Dr. Steven Edelman of TCOYD (Taking Control Of Your Diabetes) Circus fame. It started off “Dear Friend.” Now, Dr. E and I have met a few times, and have even corresponded occasionally, but I doubt he would recognize my name, much less count me among his circle of friends.

It must be a form letter.

Still having nothing better to do—as no one wants to see their diabetes educator between T-day and X-mass—I read the fax. Who would have thought that five paragraphs would raise my blood pressure so much?

So first some background. Medicare is the 800 pound gorilla in health insurance. All of the smaller gorillas, like BlueCross, Presbyterian, and the like, look to Medicare to see what they can get away with and what they can’t get away with.

Of course, we are talking test strips again.

Right now Medicare’s “guidelines” allow for one strip per day for diabetics on oral meds and three strips per day for those of us who shoot up. Insulin that is. To get your one-or-three strips covered requires some pretty strange paperwork and record keeping on the part of your doc.

But these guidelines are not carved in stone. A doc can get you more by doing even stranger paperwork and record keeping. But now a proposed Medicare rule change would take this guideline and carve it into marble. Oh. No. That’s not quite right.

First it would reduce the number of strips even further. Then it would be carved in marble.

The “Draft LCD” Medicare rule would absolutely fix diabetes testing supplies at one strip per day for folks who pop pills and two strips per day for those of us who shoot up.
No exceptions.

Think this doesn’t affect you because you aren’t on Medicare? Think again. A quote from Martin Niemöller about the Holocaust comes to mind:

They came first for the Communists,
and I didn't speak up because I wasn't a Communist.

Then they came for the trade unionists,
and I didn't speak up because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak up because I wasn't a Jew.

Then they came for me
and by that time no one was left to speak up.

Whatever Medicare does Medicaid does. Whatever Medicare and Medicaid do private insurance does. It’ll be a falling domino effect that’ll fall on your head faster than you can read this post.

I know that, even with a CGM, I cannot safely manage my diabetes with two strips per day.

Can you?

Dr. Edelman was calling on his fellow docs to “stand up as advocates for the rights of our patients to receive quality care and for our rights as physicians to practice appropriate medicine.” Amen.

Our docs are taking up arms to defend us. I think we should join the fight. Here’s Dr. E’s simple plan of attack. Call the Congressional Switchboard at 1-866-220-0044. If you give them your zip code they’ll connect you with your Senator’s office. Each Senator apparently has a Healthcare Liaison. Give that person an earful.

OK, I might have paraphrased that last line a little bit. Dr. Edelman isn’t quite as radical as I am.

Not yet.

The Saturday Share #2

2010-11-27T08:00:00.002-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

Dr. Oz—yeah the Dr. Oz—recently stated that we are living in a “renaissance of medical knowledge.” He’s seen that patients have the desire to understand their illnesses and their bodies in a way like never before, and they’re turning to the internet for that knowledge. Dr. Oz was both thrilled and concerned; thrilled that patients have a new thirst for knowledge, but concerned that sometimes the information they find is just plain wrong.

So he created a unique one-stop shop for medical knowledge called Sharecare. Dr. Oz has assembled an awe-inspiring collection of world famous medical experts, who are tasked with answering a multitude of health and wellness questions posted by people who want to understand their health better. The quality of the content is controlled both by limiting who can create it, and by providing multiple points of view.

Are you sitting down? Among these Experts is… drum roll… me.

Yeah. I can hardly believe it myself, but three times a week, I troll the site reviewing diabetes questions, diabetes medication questions, and diabetes gear questions. When I find a question that needs my touch, I answer it. Sometimes I’m the first one to answer it, sometimes I’m only one of many Experts to chime in.

And every once in a while I find other types of questions that I know about. Access to care. Stuff about cholesterol. Health politics and policy.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: Can stress affect my blood glucose levels?

My “Expert” answer: It was easier back in the days when we were cave-people. Imagine that you are walking along, gathering nuts and berries when all of the sudden a saber tooth tiger jumps out of the bushes.

What would you do? Right. Scream and run like @#$%!

And that's what the little organs on top of your kidneys are for. They let you run faster (hopefully) than the hungry cat. They are called your adrenal glands and they pump a hormone called adrenaline into your blood giving you a momentary boost in energy, speed, and strength. It’s your body’s turbocharger for getting out of danger.

So stress, in this case fear, causes this boost of sugar-like hormone. Back in cave-people days when something caused a blast of adrenaline, you most likely used it up right away, so it did no harm to your body.

Now, the problem these days, is that we have no saber tooth cats to stress us out, arguably a mixed blessing. But today’s stressors are not things you can run away from. Dropped cell phone calls. Traffic jams. A letter from the I.R.S. Any of these things, and a great many more, will cause stress, and that will lead to an adrenaline release, which will raise your blood sugar so that you can run away. Except you can’t run away from these things, so often your blood sugar will stay high for long periods of time.

If you are really stressed out, your sugar may be elevated all of the time. So what can you do about it? Well, if moving to Aruba and living on the beach forever is not an option, any of the following may be: exercise is often a great stress reliever, and helps work off the adrenaline to boot. If you work in a stressful environment, give yourself some sort of personal ritual at the end of the day to leave the stress at the office. Depending on your diabetes medication, an increase may off-set the elevations in sugar caused by stress. You can discuss that with your doctor.

But, and this is important, stress affects more than just your blood sugar. It can raise your blood pressure. It can affect your muscles and bones. It can affect your friendships and loved ones. So high blood sugar is just one of the negative impacts of stress. Stress, like any other illness, needs to be treated before it makes you sick.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

Train wreck

2010-11-24T08:00:00.003-07:00

I’m trying to think of something nice to say.

My patient is studying his hands, not wanting to make eye contact. He squirms in the side chair. My desk is flat against the wall, as not to come between me and whoever I’m working with. I always sit sideways, facing my patient, wireless keyboard on my lap. I’m blessed that I learned to “touch type” when I was young. I can make chart notes while keeping eye contact.

Of course I’m not typing at the moment.

On the corner of my desk is a wooden Lazy Susan, which holds my computer monitor. Right now it’s angled so we can both see the download from his Presto meter. We’re viewing the graphic Average/Spread report, an X/Y graph that records two week’s worth of fingersticks overlaid by time and level of blood sugar, and the view isn’t pretty.

Well, Victorio, this is pretty bad…

The lowest morning fasting number is 323 mg/dL. The highest is simply off the chart, denoted by a little triangle at 600 mg/dL. On average, his day starts around 350 and drifts up into the mid 400s. He’s dying right in front of me, and doesn’t know it.

“Worse than the time when you said I was a train wreck?” asks Victorio.

I laugh. Did I really say that? Wow. That’s harsh.

Victorio is one of those guys who gets his shit together, gets his diabetes under control, then starts drinking—and I mean really drinking—and spins out of control again. It’s a repeating cycle you can count on better than the ground hog. But this is the worst I’ve ever seen his blood sugar in four years.

He gives me a lopsided grin.

Yeah. Worse. A bigger train wreck, I suppose.

I drum my fingertips on the edge of my desk, bad habit of mine when trying to jump-start my brain. Apparently I do it frequently enough that my patient’s know it means I’m thinking. Trying to come up with a solution. Victorio maintains a respectful silence.

How are you feeling? I ask.

“Pretty good,” replies Victorio.

Any blurry vision?

“Well… yeah, actually.”

OK. Are you peeing a lot?

“Some, I guess.”

How many times per night do you get up to pee?

“Oh… a couple. Four maybe. Sometimes five.”

Uh huh. So, how’s your energy level?

“Well, to tell the truth, I’ve been feeling a little run down lately.”

My fingertips are drumming again.

The A1C machine let’s out it’s long beeeeeeeeeeeeep!

I crane my head around to see the glowing blue-green readout. An 11.5, much lower than I would have expected, given his meter readings. I pick up a circular cardboard slide rule from the ADA, spinning the top layer around to line up the little arrows with the A1C level. The ADA also has an online calculator and a pocket electronic one, but frankly, I find the old-fashioned conversion wheel to be the fastest. Victorio’s estimated average glucose, or eAG, appears in the little window. 283 mg/dL.

eAG is simply a way of converting A1C scores into meter-speak, which we all understand better. It’s hard to internalize that 11.5% of the surface area of your red blood cells are coated in glucose molecules. Doesn’t sound so bad… But when you know that an A1C of 11.5% means that your night and day average blood sugar is 283, well now, that is something we call all grasp. We get that. I’ve used eAGs since they very first came out a number of years ago, and I think it’s one of the better things the ADA has ever done for us. Which isn’t saying much, I guess.

But like I said, I was expecting a higher A1C for Victorio, so as soon as I saw the 283 in the eAG calcualtor’s window, and I knew in a flash what had happened to him.

Abruptly I ask, Did I ever tell you about the prairie dogs?

“Uh, prairie dogs? No. In don’t think so,” says Victorio, surprised.

OK, so picture a nice sunny day. It’s warm, with just a hint of a breeze. And all the prairie dogs are sitting up on top of their little mounds, like they do, you know?

“Sure. They sit up on their hind feet and hold their front paws like this,” says Victorio, holding his hands up in front of his chest, fingers down, in a very good imitation of a prairie dog.

Yeah. Exactly. But all the sudden a bald eagle flies over, casting his shadow across the prairie dog town. What’s going to happen?

“The prairie dogs are going to dive for cover. They’ll go back down into their holes.”

Exactly. Now your beta cells in your pancreas, the ones that make insulin, are prairie dogs. And your blood sugar levels are the hungry eagle…

Victorio is suffering from glucose toxicity. When the blood sugar gets high enough, the beta cells freak out and shut down, like prairie dogs ducking for cover. It’s almost like a temporary Type-1 diabetes, and it can get out of control pretty quickly. Think about it. Super high blood sugar with insulin, and all the sudden insulin production shuts down. Glucose toxicity is about the only circumstance in which a Type-2 diabetic can go into a coma, although it still takes a heck of a lot longer to happen.

The treatment is pretty simple. We’ll put him on insulin and titrate it up promptly. He’s not a tall guy, but he has a heck of a beer belly, so he’ll increase his insulin by two units per day until his sugar starts heading to normal levels. I don’t know how long it will take the prairie dogs to get over their scare and come back out of their holes. Once his average blood sugar is below 200, the beta cells will start working again. Sometimes they’re back on the job in a week or two, sometimes it takes a month or more.

Once his body is producing insulin again we can probably pull the plug on the shots and return him to his oral meds. And he’ll do fine.

For a while.

And then he’ll start drinking again, and the once and future train wreck will be back in my office, studying his hands, and not wanting to make eye contact.

The Saturday Share #1

2010-11-20T10:14:00.002-07:00

Did you know that health topics are the number one internet search item, outstripping even porn? Uh… pardon the Freudian slip there...

Dr. Oz—yeah the Dr. Oz—recently stated that we are living in a “renaissance of medical knowledge.” He’s seen that patients have the desire to understand their illnesses and their bodies in a way like never before, and they’re turning to the internet for that knowledge. Dr. Oz was both thrilled and concerned; thrilled that patients have a new thirst for knowledge, but concerned that sometimes the information they find is just plain wrong.

So he created a unique one-stop shop for medical knowledge called Sharecare. Dr. Oz has assembled an awe-inspiring collection of world famous medical experts, who are tasked with answering a multitude of health and wellness questions posted by people who want to understand their health better. The quality of the content is controlled both by limiting who can create it, and by providing multiple points of view.

Are you sitting down? Among these Experts is… drum roll… me.

Yeah. I can hardly believe it myself, but three times a week, I troll the site reviewing diabetes questions, diabetes medication questions, and diabetes gear questions. When I find a question that needs my touch, I answer it. Sometimes I’m the first one to answer it, sometimes I’m only one of many Experts to chime in.

And every once in a while I find other types of questions that I know about. Access to care. Stuff about cholesterol. Health politics and policy.

I’m having a blast, and I’ve decided that every week I’m going to share one of my favorite questions with you here.

Sharecare Question: How can I manage my diabetes during the holidays?

My “Expert” answer: Yeah, it’s a tough time of year: temptations abound, there’s unique social pressures, and our schedules are a mess. The best way to manage is one day at a time, and accept that it may not go according to plan.

Starting with the social stuff, it’s your right to defend your health, and it’s not impolite to do so. You can simply say, “I’m sorry. I’m diabetic, I can’t eat that. But thank you so much for offering, I really appreciate the thought.”

Someone who didn’t know about your diabetes may feel bad momentarily, but at least they won’t give you a fruit cake again next year. Never sabotage your own health simply to try to avoid hurting other people’s feelings, or out of some sort of miss-placed notion of what’s socially acceptable. Nor should you be in anyway embarrassed to have diabetes. It’s not like you have a sexually transmitted disease, after all.

Another problem this time of year is that you’re exposed to things that tempt you, that might not normally be in your environment. One of your co-workers will bring in freshly baked brownies.

One option is to “taste” the goodies and stop there.

Me? I soooooooo can’t do that. One bite leads to two, which leads to three, and then my blood sugar shoots up and I’m high anyway so I might as well eat 14 brownies and…

Well, I guess it’s clear that I’m a better tour guide than role model. So if you, like me, have little self control, and no control over your environment, one coping option is to keep a supply of healthy snacks on hand. They break out the white chocolate chip macadamia nut cookies, you break out the beef jerky. Chewing sugar free gum throughout the holidays also works for some of us D-folk too.

So normally you hit you treadmill at 5 a.m., but now your mother-in-law is camping out in your home gym/guest bedroom? Exercise patterns are messy this time of year, and the risk is, if you get out of the habit, will you ever get back in the habit?

I think a little pre-planning can go a long way. Move your treadmill to your bedroom for a week or two. Or do sit-ups on the bathroom floor instead. Just get creative, but keep moving.

The most important thing, however, when it comes to the holidays, is remember that it’s OK to be human. If you eat things you didn’t want to, if you fall off the sugar-free wagon, don’t beat yourself up about it. No guilt. Dust that powdered sugar off your hands and start over.

Don’t look back for even one second.

You can check out other Expert’s answers to this question, and my answers to many more questions by going here:

http://www.sharecare.com/user/william-lee-dubois

Then select the “Answers” tab near the top left.

Teaching

2010-11-17T08:00:00.001-07:00

The silence is deafening.

Even more so following the non-stop rush and crush of people over the past two hours, now all gone their hundred separate ways.

The small room remains hot from so many bodies packed in together. My shirt is sweat-soaked beneath my corduroy sport coat. In the center of the room are four long tables pushed together to form a larger rectangle. I survey the mess and sigh.

Time to clean up.

Strewn across the tables are pen needles, caps, needle sheaths, infusion set tubing, disposable inserters, and syringes. It looks like the refuse from a diabetes orgy.

Time to clean up.

I start sorting. No one bothered to bring a sharp’s container. I very carefully re-sheath naked needles and throw them into the center of one table. I’ll box them up when I’m done and take them to the clinic for disposal on Friday. Needle caps, paper debris, dead infusion sets go on another table, destined for the trash can. Stuff I can use again goes on a third table.

I undo the brown leather belt that holds my father’s briefcase closed. The right side latch is broken off and long lost, but it’s a still nice college-professor case. Deep reddish-brown leather. Smooth and soft to the touch.

There’s a brief burst of group laughter down the hall. From the pharmacology lab, oddly enough.

Yep, I’m in Albuquerque, at the University of New Mexico’s School of Medicine. And I just finished doing one of the things I enjoy most. Teaching.

Teaching runs in the blood. I grew up a “faculty brat,” both my father and grandfather were college professors. And as such I’m no stranger to college campuses. I’ve spent a lot of time on college and university campuses, both large and small. Some of my favorite memories of my father from my early 20’s was meeting him for lunch every Wednesday at the Faculty Club at the University of Northern Colorado, on the old campus.

The old campus and the new campus were literally side by side. Crossing a two-lane road took you from one to the other. The new campus was a place of wide open spaces and funky modern buildings. It would have been a great location for a sci-fi movie. The old campus was a place of tall, thick trees and solid stone buildings covered with climbing ivy. The type of place that would have been a great location for a movie about academicians.

The Faculty Club itself had an old-world quasi-Victorian feel to it. The food was good too, as I recall they made a killer Monte Cristo Sandwich.

But in my experience, the University of New Mexico campus, where I am today, stands in a league of its own.

It’s simply gargantuan.

The main campus encompasses 350 buildings sprawling over 769 acres of central Albuquerque. These buildings add up to almost 11 million square feet, the equivalent of 600 Wal-Mart Super Centers. The main campus’ libraries hold two and a half million volumes. Fourteen thousand people work here, and another fifty-four hundred man University Hospital.

Most of the work I do for the University—thank God—is via telemedicine, either from the comfort of my home library or my clinic office du jour (I’ve had three offices in six years, and rumor has it I’ll be moving again in the coming months).

About once a month or so, I actually do have to drive the two and a half hours to the University in person, but it’s often to the offices of Project ECHO, which sit in a building of their own just outside the main campus and just off the freeway—in, out, and on my way again. There’s an out-of-business car dealership right next door, so parking is never a problem.

But a couple or three times a year, I’m required to go to into the heart of the main campus itself, either to the School of Medicine or the University Hospital.

When I come here it is with a mix of dread and thrill. Remember that I live on 20 acres in the middle of nowhere. If I’m not working from home I’m working at a clinic in a town that has no stop lights. I’m not really a country bumpkin, but I might have been bumpkinified a little bit over the years. So coming to the heart of this mighty campus is both exciting and nerve wracking; a bit like riding roller coaster.

As I drive through swarms of traffic and fight for parking places I always swear I’ll never come again. But once I’m here, the rarified air is stimulating and I end up having a good time. Plus, there’s a Starbucks not too far away.

Today I was teaching diabetes technology: pens, pumps, and CGMs. It’s ultra quick intro time for student doctors finishing up their second year. They are young and smart and energetic. Pretty much everything I’m not. There are one hundred of them, in groups of 25, rotating every 20 minutes between my class room and three others.

Speed learning.

I’ve brought lots of hands-on goodies, and a super-quick Power Point. The School of Medicine loves, loves, loves Power Points. I, however, do not. I suffered near death by Power Point too many times. That said, used right, it has its place.

The students crowd in, a hush falling over them as they spy needles, strange devices, and tubing scattered across the tables. I introduce myself, then it is time for fun.

Like a ring master, standing in the spotlight of the laptop projector, I hold an insulin pen. I point it upwards and click-click-click-click-click-click-click-click the plunger home with my thumb, squirting a stream of expired insulin into the air, sparkling droplets glisten, liquid diamonds floating like butterflies, like rain descending through shafts of sunlight. We dive in.

Why do we tap the air bubbles out of our syringes?

“To avoid an embolism?” asks one boy.

You’re over thinking it. The shot goes in the subQ tissue, you can shoot as much air as you want with no risk. What problem can the bubble cause us?

“Could it displace the volume so you wouldn’t get the right amount of insulin?” asks another boy.

Bingo!

This is how you put the pen needle on. I throw the paper in one direction, the needle cap in another, and the sheath in a third direction. How often do you think patients are supposed to change the needle? How often do you think we actually do?

And then it’s time for the next group.

Why do we need a quick disconnect on our infusion sets?

The guesses flow in: in case you go too low; for taking a bath; in case you get your hose caught; in case…

What else?

“Sex?” asks an embarrassed female voice near the back of the room

We have a winner.

“Wow, I would have never thought of that,” says another girl near the front.

You study too much, I tell her. She blushes.

And then it’s time for the next group.

I snap an old CoZmo infusion set onto a red blood cell stress ball, then pull it off so they can see the cannula. I tell them insulin pumps are just fancy syringes, they don’t replace your brain. I show them a dismembered Omni Pod and explain how it is different from traditional pumps.

“All those circuit boards and batteries get thrown away every three days?” asks a student.

Yup. And do you think we D-folk care?

And then it’s time for the next group.

My CGM is passed around the room, complete with an embarrassing three hour trace, while I show them a projection of a sensor daily over lay report. What it can tell us and why they don’t have time to look at it during a 15 minute office visit.

You need to trust your educators.

And then, sadly, it’s over. Their excited voices echo down the hall as they head off to other classes.

And the silence is deafening.

Insulin pump follies

2010-11-10T08:00:00.001-07:00

The CGM buzzed in my ear. Twice.

WTF?

The only light in the room is the glowing screen of the Dexcom.

Groan….

I fumble for the monitor, half-hidden beneath the bed sheets. Two buzzes means a high or a rise alarm. If you sleep though the buzzes, she’ll squawk at you.

I’m at 351 mg/dL and going up quickly. My mind tries to grasp the fact. How on earth? It’s 2am. I can’t think clearly. But I didn’t have any dinner…

I went to bed at 114 mg/dL…

My basal rate can’t be that far off…

Infusion set?

I turn on the bed side lamp and, squinting as my eyes adjust to the brightness, I check the site. Looks good. Nice and tight. No damp skin. No band-aid smell of insulin. I wiggle the hub to be sure. Then I disconnect and reconnect to be double sure.

Everything looks A-OK.

Well, it has been a stressful evening. I sent one of my little T-1s to the Emergency Room this evening. Her mother called around eight. The kiddo had been high all day, and didn’t respond to corrections as well as usual. Turns out her cannula on her OmniPod got dislodged. By the time I was on the case she’d been above 400 for six hours and was complaining she felt sick.

At first I dithered a bit. We know the problem. She didn’t have insulin for quite a while. The problem is resolved. The insulin will catch up. The blood sugar will come down. The mother checks for ketones, which show up dark pink on a urine stick. So between moderate and high. We don’t yet have a blood ketone meter for the child.

The insurance company does not want to pay for the strips.

The kiddo hasn’t thrown up. In fact she just asked for a slice of bologna. Good sign she’s not feeling nauseated. And she’s not panting, which would be a very bad sign. But she does have fruity breath.

All of this adds up to her being well on her way to Diabetic Ketoacidosis, or DKA for short. DKA happens, generally in T-1s, when the blood sugar is too high for too long and there is little or no insulin in the system. We pumpers are more at risk from DKA because we don’t use basal insulin, those specially formulated insulins that time-release over 24 hours. We get our basal needs covered by a constant drip of fast-acting insulin from the pump. Unless the pump fails or the cannula gets pulled out somehow. In which case you have no medicine for what ails you.

Everyone’s diabetes varies, but figure that six hours above 300 in the absence of insulin can get you into a world of hurt. What’s happening is that your cells are starving in a sea of plenty. Even though you are chock full to the gills with sugar, in the absence of insulin, none of the sugar can get to the hungry cells. They start eating their shoe leather and… no wait… that’s castaways. They start eating fat instead of sugar, and like the smoke from a camp fire, the burning of fat creates a toxic waste called ketones. Ketones shift the pH of the blood, making it more acid.

Bottom line, untreated, this will kill you.

Lucky for us the treatment is related to the cause. Just add insulin.

So back to our sick kiddo. I’m sure the blood sugar will resolve. The ketones will pass. That’s not the real issue. I’m worried about the “Kay” as we call it. Kay, actually spelled simply “K” is a resident of the periodic table of elements, located at number 19, known more formally as Potassium.

Potassium is one of the kitchen soup of elements that are part of parcel of our bodies. The reason we’re even talking about this is that when someone is DKA or DKAish, funky things happen to the potassium levels in their blood. Generally speaking, as you re-hydrate (remember that DKA will dry you out from increasing urination and vomiting and all of that), your potassium falls. Sometimes pretty damn quickly. And the reason that matters is that low potassium can affect your heart rhythm. Bad and scary stuff.

But she’s sort of borderline. Not quite DKA. Not quite OK. I weigh the various facts and figures for a full 90 seconds before I finally get my head out of my ass. Why am I even thinking about this? The patient is a child.

Take her to the ER, I tell the mother.

“Are you sure?’ she asks, shocked.

No. I’m not. So take her to the ER now. It may be a complete waste of time, but the alternative is unthinkable. Go now.

This is the second pump failure of the week. Two days ago, one of my middle aged T-1s ended up seriously DKA after her Med-T infusion set got pulled out. She got to the throwing up on her shoes stage before she came in for help.

It has been postulated that the genes that lead to T-1 are the same ones that govern self-reliance to the degree of stubbornness.

So back to my dark bedroom, I reel in the infusion set to find my CoZmo pump. As the set checks out, I’m thinking the best plan is to just go ahead and take a correction bolus. Maybe the stress of the evening just took its toll on my blood sugar.

I press a button to wake up the pump.

Nothing happens.

I press again.

The screen is blank. Dead. I stare at the eight thousand dollar paperweight, unable to process the facts through my sleep deprived hyperglycemic mind.

My pump is as dead as a door nail. Holy crap.

We all know that technology can fail, but it is supposed to happen to other people, not us. I must have sat staring at the blank screen for ten minutes. Not sure what to do next. Then the stomach cramps kicked in and my brain kick started.

Take a shot, take a shot, take a shot, take a shot, take…

I stumbled through the dark house to the kitchen, a.k.a. the insulin storage vault. About this time, I remembered that I had put a fresh battery in my pump before bedtime. Actually, it was about the time the phone rang, when I got the frantic call from my little patient’s mother.

Could I have put the battery in backwards and not noticed in all the confusion? After all, who looks at their pump unless you’re gonna use it, or it vibrates, beeps, or squawks at you? I fished my key chain out of the bucket were I throw my wallet, watch, day-meter and strips, medic alert, pen, box cutter, and pipe lighter when I come home from work. The key chain has one of the more useful gifts ever given to me on it. A “coin” the exact size of the slot on my pump’s battery lid. It a hole to slip it onto the key chain and has the graceful Animas logo on it.

I use the coin to unscrew the battery lid on my discontinued (but beloved) CoZmo. The battery is in right. Damn.

For the heck of it, I grab another battery out of the bucket and put it in the pump. Nothing. No shudder of a vibration followed by beep-beep-beep!

This doesn’t look good for the home team.

In a last ditch effort to jump start my pump, I go find my go-bag, hanging on its hook by the front door. Inside is the last AAA battery in my world (yeah, I know, it’s pathetic but money has been tight.)

I slide it into the battery chamber. Slip the lid on. Screw it down.

The pump shutters to life. YES!!

So, dumb ass (that would be me) somehow ended up with batteries that should have been thrown in the trash pitched instead into his spare-parts bin. I probably took them out of some device and left them on the table with intentions of throwing them away later. Serves me right. Later on, my wife must have thrown them in my bucket, assuming—sensibly enough—that if someone left them on the kitchen table (rather than putting them in the trash only three feet away) that they must be good.

The lesson here is that routine is a mind killer. Let’s look at our actors in this little play: middle aged diabetic who has been pumping for years, a child with a super-smart Type-3 mom at the helm, and a diabetes educator for Christ’s sake. Three people who you think would be paying better attention. Well, actually, it’s not that we weren’t paying attention, it’s that we are so blessed that things rarely go wrong that we get caught flat-footed when they sometimes do.

So my bottom line is this—next time you have a high that doesn’t go away do the following:

Check to make sure your infusion set is still attached to your hide.

Check to make sure your cannula is still poking through your epidermis.

Check to make sure you didn’t put dead batteries into your pump.

Don’t get too comfortable. Banana peels are equal opportunity.

The Gift

2010-11-03T08:00:00.004-06:00

If you think giving away a stray cat is hard; try giving away a tiger.

Actually, I confess. Before I tried giving this particular beast away, I did try to sell it. You know, so I could buy something more useful. Like an elephant.

So let me tell you why I decided to give up on being a tiger tamer. Well, actually, to tell that story I guess I’d better tell you why I joined the circus in the first place.

Once upon a time… (the scene fades to black and white for that ol’ tyme look)…

Confession: while I’ve had a number of really funky jobs in my nearly five decades on the planet, working for the circus is actually not one of them. I was, however, the guy who cleaned the piranha tanks at a tropical fish shop, a security guard at a nuclear power plant.. and at a rodeo… and for one (horrible) day a laborer for Ready Man Labor. I was also a Colorado Licensed Fur Trapper for the Ft. Lewis College Psychology Department (we were trying to trap a coyote and put an radio telemetry collar on it for an animal behavior study); trust me on this, these critters live up to their reputation as wily. I also fed 100 head of cattle every morning before dawn in return for free rent, but the place literally had no insulation. I could see my breath in the morning while brushing my teeth. Besides, the only thing I really like about cattle is eating them.

Oh yeah. And I was a bouncer at a nudie bar. Actually, that job wasn’t so bad…

And why, you might wonder, would a stable, up-standing citizen like me have so many different jobs? Well, because the jobs were not what I did. They were how I kept from starving while I did what I really love to do: write.

CafePress has a coffee mug that sums it up perfectly, but I can’t afford it right now:

I also like the one that has the word “Author” warped to look like the Superman logo and the one that says “What came first? The writing or the drinking?” But that’s just me. They had one that reminded me of my sister, too. It says “Will write for chocolate.” She’s a professional playwright and has also had some interesting jobs in her life. But I digress.

Writing seems to come easily to my family. We don’t generally suffer writer’s block (although I frequently write my way into a corner); nor do we find it a torturous process. Quite the contrary, we find it joyful.

So it simply strikes me as natural that when I see a problem, I want to fix it by writing about it.

(The scene fades back into living color)…

Of course, all of that was before diabetes. As you know, diabetes changes everything. But for me at least, many of the changes were for the better. For instance it gave me better focus. Oh, and that whole small, but steady, paycheck thing.

That said, for the last five years I’ve been guilty of making a huge mistake in my life. I made the mistake of thinking of myself as a medical professional who also just happens to write.

That’s wrong. And nothing could be further from the truth. For lots of reasons. Yes, I work at a clinic. And yes, I’m a de-facto diabetes educator. But I’m not a doctor, or a physician’s assistant, or even a nurse. I have knowledge, and a hell of a lot of it, but I have no license. No certification. I’m just a lowly community health worker with about as much clout in medicine as the janitor.

In the medical world it really doesn’t matter how much you know. All that matters is what initials follow your name. Several of my better pedigreed colleagues readily admit that I know more about diabetes than they do, and are modest enough to seek out my council. But that doesn’t mean that they even for one microsecond think I’m part of the fraternity.

No way.

The problem is that men, including even testosterone-lite ones like me, define ourselves by what we do. It is both genetic and cultural. And believe me, even if it sounds silly to you females, it is powerful and impossible to escape. What we do is who we are.

Working for years in medicine, I forgot who I was. I, like Incurs, flew a bit too high and got my wings singed.

It serves me right in retrospect because I not a medical professional, and never will be. My name ends with the last letter of my last name. Nothing follows it. But who the fuck cares? The real truth, that I was slow to recognize, is that I’m a Writer who also just happens to work in medicine.

I let a certain lack of respect for my knowledge weigh more heavily on my soul than I should have, simply because I miss-defined myself. Now that I woke up and remembered who and what I am, the little shit doesn’t bother me anymore. I’m on a pretty shaky foundation when it comes to being a medical professional. But as an Author, I’m on a pillar that’s not so easily toppled.

So for those of you who were worried about my mental health. Worry no more. I remember who and what I am, I’m sleeping great at night, my back isn’t bothering me, and I’m not buying Pepto-Bismol in bulk anymore. And for those of you who’ve been with me for a while, know that the “human tumor” can’t touch me on the ground I’m standing on now.

Does all of this mean I’ve given up on helping my fellow d-folk in the arena of medicine? Hell no! I may not be a medical professional, but as a medical journalist I’m still in a heck of a good position to take the messages of doctors and make them understood by patients, and take the messages of patients and make them understood by doctors.

So I’m still an advocate. Maybe a better one for having gotten my head out of my ass.

And thus we get back to homeless tigers.

As a Writer who works in medicine, I’m a bit of a war correspondent. I’m stationed on, and reporting from, the front lines of the diabetes epidemic. More than 4,000 Americans are diagnosed with diabetes every day. And just last week, the CDC announced projections that by 2050 (which is much closer than it sounds), one in three Americans will have diabetes.

Oh. My. God. That’s 33% of the country. If this keeps up, we’ll be the majority. Can you imagine. An entire country of chronically ill?

Anyway, last summer, back in 2009, before the whole 1 in 3 thing, I could see that things were bad. Every week we were diagnosing someone with diabetes, generally Type-2. The emotional effect was devastating on the patients. They were terrified. Here in northern New Mexico they carry the family legacies of bad outcomes. They remember grandparents who lost their sight, their limbs, their kidneys, and their lives to diabetes.

They were also sick. Months and even years of hyperglycemia typically proceed an diagnosis of Type-2. It is a slow, creeping killer, wreaking havoc and damage before it reveals it’s face. The fast progression to the ER in Type-1 Diabetes is actually a blessing in comparison.

I was privileged and blessed to be on site at the moment of diagnosis to help these folks cope. To let them know it was not the end of the world. That they’d be OK.

But the math was bad. One of me and 4,000 a day of them. That would give me 21.6 seconds per patient, per day, if I never slept, ate, or drank. Not going to happen.

So I knew what I had to do.

I had to write.

About it. For it. For them.

And it had to be simple. Just the basics. Just what you need to know in the here-and-now. And it had to carry a positive message, because even though it doesn’t seem like it on the day it happens, a diagnosis is diabetes is probably not the worst thing that will ever happen to you.

In short, what these 4,000 people a day needed was a first year survival guide.

So I wrote one.

Now I’m not a complete idiot. A partial one, perhaps, but not a complete one. I knew that no one who was newly diagnosed was going to go to Amazon and buy a book. They just want to go home, go to bed, and pull the covers up over their heads. Forever.

I had innocently assumed that I could get some sort of grants to pay for books that could be given to doctors to give to patients at the time of diagnosis. The problem is that my publisher is not a non-profit. Well, they aren’t making any money whatsoever, but they are not technically a non-profit. Hope springs eternal. Anyway, most grants only go to official non-profits. Besides which, the grant wells have gone dry in this economy.

With great reluctance I turned to the deep pockets and questionable ethics of big Pharma. I contacted every company in the United States who sells diabetes drugs, meters and strips, or gear.

I started by offering them awesome discounts. No takers.

Then I offered books at cost. Still no takers.

Then I offered the high-res printing files for free. Still no takers.

By now I was getting… frustrated. Several hundred books were out in the world, mainly ones I paid for, and a small CDC grant to my clinic got the book translated into Spanish. To avoid conflict of interest no one made a penny, of course, but my publisher got to keep the rights. I think they have sold exactly one copy of the book in Spanish. Ever.

But what few copies were out in the world generated tremendous feedback. The little pocket book was really helping people through the diagnosis experience.

But not for enough people.

Finally, I had a light-bulb moment. If no one else will give it away, I will. Of course, as noted above, I have no money. But in this modern world of bits and bytes there is a way to give a book away without spending a penny.

An eBook can be a free book.

So that’s what I’ve done. I’ve created a low resolution PDF appropriate for reading on screen. Why low res? Well, because charity only goes so far. I put a lot of time into writing the book. Just because it is small does not mean it was fast or easy. In fact, writing concisely is often harder than going on, and on, and on.

Ummmmm…. Not quite sure what that says about my habit of writing very, very long blog posts…

But ignoring that for the time being (and probably forever), let us not forget that Red Blood Cell Books has put a lot of time and money into this too. To just let anyone print it doesn’t seem right. I also worry that various printed versions might be of low quality. That reflects on both my image and my publisher’s image.

So download it for fee. Read it for free. But if you want a physical copy, get out your damn wallet.

Which brings us back to the stray cat. The files are good to go. All the permissions are in place. Anyone can take them, download them, read them, post them. The rules of engagement are simple: make no money; charge no money.

There’s a link embedded in the black logo box at the top left of this column. It’ll take you to a page at the Red Blood Cell Books site that has the PDFs and the art work. Please help yourself. Or you can link to the page I just directed you to. It has been isolated from the rest of the Red Blood Cell Books web site to make it as un-commercial as possible.

Post it. Email it. Twitter and Tweet it. Facebook it. Please spread the word.

Because I need your help to get this little book to 4,000 people per day. Whether you are a patient, a medical professional, an advocate, a Writer like me, or if you are the other kind of writer (quoting now from another CafePress coffee cup):

“Writer. (ri-ter). Noun. Person who spends all day drinking coffee and posting on Facebook while pretending to write a novel.”

I need your help spreading the word. ‘Cause I hate marketing and I’m no good at it. Because:

PS: Special shout out to the following who are already helping spread the word: PS: Special shout out to the following who are already helping spread the word:

Ninjabetic
Diabetes Daily
tudiabetes
Hello Cupcake

Meters matter

2010-10-27T08:00:00.002-06:00

At a recent state-wide meeting on medical research in clinic settings I overheard a doctor, who ideally should be taken out back and shot (but at a minimum shouldn’t be allowed to see diabetic patients), say that she didn’t think Type-2 on orals should test their blood sugar at all.

She didn’t see any purpose.

She didn’t think it did any good, as a Type-2 on pills can’t do anything about their blood sugar anyway.

I’m sooooooooo sick and tired of hearing bullshit like this.

Meters matter. For all of us. For Type-1s and Type-2s. For insulin users and pill poppers.

And I’m going to tell you why, Letterman style, with the top ten reasons meters matter for Type-2s well controlled on pills. I’m focusing on this group because there are waaaaay to many people who think T-2s on pills don’t need to test, including some of the patients themselves.

Many of the reasons why meters matter have more to do with our brains than our blood, but this shouldn’t belittle them as valid reasons. To control diabetes successfully requires some brain power, to say the least, and we have a boat load of evidence showing how life can “get in the way” of good diabetes control. If we accept that psychological issues can impact a patient’s ability to keep his diabetes under good control; why are we denying that psychological tools can help her keep her blood sugar under good control? Any tool that can aid us in any way is valid and important.

Meters matter reason number ten: Don’t wait for it to rain to buy an umbrella. Type-2 Diabetes is both chronic and progressive. It never goes away and it always gets worse. Insulin resistance, the corner stone of T-2, increases every day that passes, every minute that passes, every second that passes. In some folks it comes on like a tsunami, in others it resembles the slowly rising sea levels of global warming. The increasing insulin resistance taxes the pancreas. It’ll work overtime to keep up. It’ll put on swing and night shifts. But eventually, the levy is topped. And on top of that fact, our bodies adapt to our medications. My message here is actually several fold. First, get into good habits now, before you need too. Keep in good habits, before you need too. This also sets the stage for...

Meters matter reason number nine: Meters are the night watchman on the tower; looking for the barbarians on the horizon. If you test now, when all is quiet and wonderful, you’ll get the earliest possible warning of change. And one thing we can count on with diabetes is change. Forewarned is forearmed. And speaking of the troops…

Meters matter reason number eight: If you won’t do it for yourself, do it for me. Do it for your Diabetes Educator and your Doctor. Testing is not only good for you in both the short and long runs, it’s good for us in the medical world. Everyone’s diabetes varies. Truly, it has 31 flavors. Meters reveal the personality of your very own personal diabetes to us. Testing lets us put your diabetes on the couch and psychoanalyze it. Is your diabetes the kind that dumps sugar into your blood stream at night? Is your diabetes the kind that can’t handle the carbs in your meals, leaving you high for hours after eating? Is your diabetes one of those that just runs on the high side all the time? The differences drive the therapy. Oh, and speaking of eating…

Meters matter reason number seven: Meters let you know what your diabetes likes to eat. And what it doesn’t like to eat. OK, so there isn’t a “diabetes diet.” Not anymore. We’ve kicked that to the curb ‘cause it didn’t work out so well. But no matter what flavor of diabetes you have, no matter how well or how poorly controlled it is, I guarantee this: there are foods that will give you trouble and foods that won’t. Does that mean you can’t have the ones that give you trouble? Of course not. This is a disease, not a religion. But you may have to look at how much of the problematic foods you eat, what else you eat with them, and when you eat them. The meter is the perfect tool for a very small-scale scientific study, that I like to call a One Rat Study. Yes, you are the rat in your One Rat Study. We know that carbs turn to glucose in your gut. That’s the job of the digestion system. Some carbs turn to sugar faster than others. The marathon sprinters tend to be stuff made with flour, stuff made with potatoes, and stuff made with rice. Oddly, most D-folk seem to be able to tolerate two of the three just fine, but I’ve never been able to establish a pattern as to which one will effect who. Sadly, I’m one of those who has trouble with stuff made with flour, so I have trouble with bread, crackers, cake, tortillas, and (most devastatingly for me) pasta. Anyway, I digress. If you test before you take your first bite, and two hours after that first bite, you can see how various foods effect your blood sugar. You must “test in pairs” as William Polonsky has so elegantly termed it. What you need to look at is not whether the after meal number is at a specific goal, but how much the rise is. Food your diabetes and diabetes medications like is a rise of less than 50 points. And if the rise is waaaaaaay more than that…

Meters matter reason number six: Meters are Myth Busters. Many T-2s on orals (including my esposa in the past) buy into the myth that there is nothing that they can do about high blood sugar anyway, so why depress yourself by testing? Well… Well, for starters, in the future you could avoid doing whatever it was that got you in to this mess in the first place. And there are some things you can do if your sugar is high and you are on orals. You can drink water, walk briskly, and avoid eating high carb foods until you are back down where you belong. And speaking of denial…

Meters matter reason number five: Meters remind you that you are diabetic. OK, I’ll be first to admit that on the surface this sounds craaaaaaazy. But it is true and important. I know several otherwise very smart people who were diagnosed with diabetes, put on pills, and thought the problem was solved. And why wouldn’t you think that? Your blood pressure is fixed with your hypertensive med, your cholesterol is fixed with your statin. Your thyroid is fixed by your thyroid pill. Your blues are fixed with your anti-depressant. Most of our illness require no more than taking the right pill and seeing your doctor again in six months. Not true with diabetes. You are an important part of the picture. You are in the drivers’ seat. This illness takes some work, and I think meters serve as important daily reminders that we need to stay on the ball. Which is really the next reason meters matter…

Meters matter reason number four: Meters remind you of your responsibility in your self-management. They help you keep your head in the game, even when you are waaaaaay ahead of the opposing team. Just this week I had a guy in my office who told me that he realized that when he didn’t test he started to eat more sloppily; but that he realized that when he did test it kept his eye on the ball. So in many ways, meters are the best medicine. And you must take your medicine because…

Meters matter reason number three: Because nothing is more dangerous that deciding you are not diabetic any more. You’d be surprised how often this happens. And it never ends well. At some point folks who are detached from their diabetes often decide that they don’t have it anymore or maybe never had it in the first place. Not only are they not testing, but they stop taking their pills. The meter, and testing, keeps you in touch with your diabetes. It reminds you who and what you are, and what that requires of you to keep yourself healthy for your loved ones. Don’t get depressed. But speaking of depression…

Meters matter reason number two: Meters are the best anti-depressant. Yeah, I know, some folks get depressed by having to “poke their finger,” but this is diabetes. No wimps allowed! Meters are a powerful reminder that you are in control, and that is heady stuff. It is your diabetes and you own it. In many places, especially in minority communities where it seems everyone has had diabetes for generations upon generations, a certain degree of fatalism takes over. Bad outcomes are accepted as destiny. Bull-fucking-shit. Yes, diabetes has wrapped it’s slimy little tentacles around your family’s DNA. Yes, Grandpa had it, Dad had it, Uncle had it. Yes, Grandma had it, Mom had it, Auntie had it. Your sibs have it. Yes you have it and probably so will your children. And so what? Just because everyone had diabetes doesn’t mean everyone needs to die from it. Look, diabetes treatment has come a long way. You don’t have the same diabetes your parents and grandparents had. You have New and Improved Diabetes. Yep, same killing action as the old product, but now more controllable than ever. Used right, used often, the meter should not depress you. You should rejoice in the power it grants you to change your family’s destiny. In some areas of the county, having a first generation go to college is cause for great celebration. I think we are on the verge of a new celebration. The first generation of some families dying at very old age with eyes, kidneys, and toes all original equipment in the coffin.

And the number one reason that meters matter: The fucking A1C test lies. So I need to lay the back ground here. The A1C test has for years been the gold standard the Docs use to determine diabetes control, or lack thereof. Actually, the A1C test is not a particularly good tool to do this, as you will soon see, but it was all we had. So what exactly is an A1C test, you ask? OK, here we go. Red blood cells are the FedEx trucks of your body, delivering little packages of oxygen from the lungs to every cell in the body. The freeway system the little trucks drive on is your circulatory system. But of course, they aren’t the only vehicles on the road. Sugar is on the road too. Let us pretend it is a very cold snowy day. The sugar is snow on the highway. The FedEx trucks need to make their deliveries, snow or not. But driving in all that snow, the trucks get splattered with ice and mud and muck. So too with the red blood cells. If there is a lot of sugar in the blood stream, the red blood cells get all splattered with it. The worse the snow, the dirtier the trucks get. The A1C test is simply a way of seeing how dirty the fleet of trucks is, on average. The score, ranging from 4.0 to 14.0+ is simply revealing the percentage of the red blood cell’s skin that is coated in sugar. As red blood cells live about three months, an A1C score reveals the overall sugar environment in the blood stream for the last three months. Opinions vary, but generally speaking, somewhere in the sixes is considered in good control. For perspective, an A1C of 6.5 would tell us that the average blood sugar for the past three months is 140 mg/dL.

But giving us an average is the first way the A1C test lies to us. You can get an average of 140 by adding 65, 140, and 215 and dividing by three. I think most of us would agree that if your blood sugar was rollercoastering between 65 mg/dL and 215 mg/dL that you are most certainly NOT in good control of your diabetes. But if you only looked at your diabetes through the lens of the A1C test, you might make the fatal mistake of assuming that you are in control. That is critical because for years we thought that it was simply high average blood sugars that cause microvascular damage (your eyes, kidneys, penis, and toes), but now we are learning that excursions, rapid changes in blood sugar levels, may play as large a role in kindling these diabetes complications as does the average sugar.

And the A1C cannot and does not reveal excursions. It is a blunt sword. It only gives us averages. So beyond the insidious nature of mathematics, the A1C tests are also subject to false readings from anemia, hemoglobinopathies, and plain old-fashioned human error. But proper and creative use of a meter, on the other hand, can reveal what the A1C test is blind to. Don’t get me wrong. The A1C test has an important role to fill, and I think the test and the meter together provide an excellent set of checks and balances against each other’s weaknesses.

Oh yeah, but one more thing for those physicians who want to rely on controlling diabetics with A1Cs alone. As the test covers a three month period, the standard is that every diabetic should be tested quarterly. But that does not happen. Many diabetics are tested twice a year, and a shocking number only get a test once per year.

Care to wager how much damage high sugar levels could do in a year?

Meters matter.

Period.

End of subject.

Now go test your blood sugar, all of you.

Looking for two good writers…

2010-10-22T14:01:00.001-06:00

Any readers out there members of the National Association of Science Writers (NASW)? Or married to members? Or children or parents of members? I was looking to join this organization, but need to be sponsored by two existing members and seem to be up a creek without a quill pen, as it were.

Me ‘n Rufus

2010-10-20T08:00:00.003-06:00

So recently a young lady from the JDRF visited me at my clinic. She had come to see what we might need to help our patients. Among other things, for those of you who feel this organization has ignored adult T-1s (both the little ones that have grown up and those of us diagnosed as adults) she left a few copies of a book titled the “JDRF Adult Type 1 Toolkit.”

Now, I confess, I’ve not made time to read it yet, but it sounds very promising.

Of course, their main focus remains on the kiddos. My visitor asked how I was set for “bags of hope,” of which the signature element is Rufus, the bear with diabetes. I hope you all have a Rufus of your own. Rufus is a teddy bear of the classic design, but he sports a diabetic alert bracelet and has red patches on his paws to show where he should do a paw-prick to check his blood sugar. Other colored patches on his body indicate where he should take his shots.

For a brief history, Rufus was the brain-child, or brain-bear, of Carol Cramer. She created the first one in the early 90’s when her small son was dx’d. She actually made and donated over a thousand of them out of her own pocked.

Then she turned to the JDRF, who along with support from Pharma (originally Bayer), Medic Alert, and a toy company, ramped up production of over 15,000 Rufi and his sister girl-bear Ruby.

Rufi vary, depending on the generation, but generally sport a pair of tan corduroy overalls and a T-shirt. The current model has a JDRF/ Roche T-shirt. Presumably, someone at Roche has been filling out purchase orders for massive numbers of teddy bears.

Oddly, Rufus has been down-sized. Originally he was about a foot-and-a-half tall or so, now he is more of a pocket bear. I guess even bears are affected by the crappy economy.

But I digress.

From personal experience I can tell you that, for a child, having a stuffed animal who has to go through all of the diabetes crap with you is invaluable. But for that story we need to turn not to a bear, but to a lamb.

One day, several years ago, one of my elderly T-2 ladies brought me a stuffed lamb. I have no frickin idea why. At least, not at the time. The universe functions in the oddest of ways. Lamb sat on my bookshelf for months. Somewhere along the way Lamb ended up wearing a medic alert around her neck.

Then, in the summer of last year, a young mother brought in a very sick two year old girl. She had been losing weight. There were behavior problems. She had started wetting the bed. I think you all know where this is going…

So my new little patient latched on to lamb at her first visit, and on the next visit I thought lamb looked a little pale. So I checked Lamb’s blood sugar. And sure enough, Lamb was above target. So we gave her a shot. Then I checked my blood sugar. And, damn those brownies, I needed a shot too. So, what the hell, we’re checking everyone’s blood sugar, we might as well check the little T-1s blood sugar too, huh?

And that became the office ritual. We’d check Lamb, then me, then the little girl. When we were able to get my little patient a CGM, Lamb came in the week before sporting a cardboard CGM on her belt.

Sometimes it does not matter what boat we are in, so long as we aren’t in it alone.

I was amazed at how much support the stuffed animal gave the little girl.

So I definitely wanted a Rufus or two on hand. You know, just for in case. But, only half joking, I told the JDFR rep, well, no one gave me a Rufus when I was diagnosed.

“Oh, I’m so sorry,” she said, looking genuinely bummed, “how old were you?”

Mumble, mumble, four mumble, dec-mumble.

“I’m sorry? I didn’t catch that.”

Four… decades. I was 40 when I was diagnosed.

And she laughed.

But two weeks later a box showed up at the clinic with my name on it.

And inside was…

Yep. Almost a decade late, but better late than never, a Rufus of my own.

So I wasn’t sure whether to keep Rufus in my office to help me with patients, or whether he should live at home with Debbie, Rio, the cats, and me. I took him home to show him off, and well, he never left. He’s the perfect size to cuddle. Kinda like holding a baby. Only without the slobber and the hole-fear-of-dropping-on-head thing. And his fur is softer than a cat’s.

And you know what I discovered? At the end of a crappy day, you are never too old to hug a teddy bear.

Rufus. The bear with diabetes. Good medicine for diabetics of all ages.

The four dollar death sentence

2010-10-13T08:00:00.004-06:00

Hospice is catch-all phase for end-of-life care, with a focus on easing suffering—physical, emotional, and spiritual. Hospice is actually covered by Medicare and most other insurance, the only requirement being the expectation that you’ll be dead in six months.

The official line is “clinical findings that support a patient’s life expectancy of six months or less if the terminal illness runs its normal course.” Of course, if you want to torture your insurance company by living longer (and eating into their profits) your doc can recertify you if you are still alive at the end of six months. That sometimes happens.

Recertifying more than once is rare.

My rules for diabetic patients on hospice are pretty simple: don’t check your damn blood sugar and eat whatever the fuck you want.

OK, I exaggerate, but that’s the essence of my feelings towards diabetes and end-of-life care. About two years ago I had a home health aide call me in a panic. “Mr. Gonzales (not his real name) is insisting I go buy him a candy bar, what should I do?”

Buy him the candy bar, I told her.

“But… but… he’s diabetic!”

Don’t worry, the cancer will kill him long before his blood sugar will get the chance. It’s OK. Go. Buy him the candy bar.

Modern medicine suffers from a lack of balance at times.

I recently got a new patient. She was on hospice for three fucking years. Three. That’s six recertifications while waiting to expire. She must really hate her insurance company.

She was dying, no shit, of diarrhea. Uh… OK, so that was a really bad choice of words on my part. She was suffering from severe, chronic, mystery diarrhea so horrendous that she was malnourished. Every test in the world had been run. Blood tests, MRI’s, CT scans. Numerous specialists were brought it. I think they even consulted an Ouija Board.

One of the docs involved told me the diarrhea was so severe it reminded her of chlorella. But the patient was negative for chlorella too.

Until my boss got on the case, no one could figure out what was causing it. It turns out the recipe for this woman’s near demise was four atoms of carbon, eleven atoms of hydrogen, and five atoms of nitrogen. More on that in a bit.

But first I want to take a detour into botany and history. Grab your keys, jump in your time machine and fire it up. Let us go to 1920.

What’s happening in diabetes in 1920?

Everyone is dying.

Yep. This is before insulin. Not only is there no cure for diabetes, there isn’t even any treatment. Of course, diabetes didn’t kill most diabetics. Starvation did. To pull every day of life out of their patients, the diabetes experts of the day literally starved their patients to death.

Remember what I said about lack balance in medicine?

Well, we all know about Best and Banting and insulin. But do you really think no one else was on the case? Ever heard of Werner and Bell? Or Slotta and Tschesche?

Me neither. They were barking up a different tree than Best and Banting. Well, not a tree so much as a plant. While Dr. Banting was operating on stray dogs, Werner and Bell were stopping to smell the flowers. The lilacs, to be precise.

Various scientists played with galega officinalis, a.k.a. the French lilac, a.k.a. Goat’s rue, from 1920 onwards. Folklore dating back to the Middle Ages had long held that the plant could lower blood sugar. The only problem is that it’s toxic as hell.

As a complete side note, it may or may not interest you to know that here in the States, galega officinalis is listed on the Federal Noxious Weed List (I didn’t even know there was such a list until I started researching this subject).

Anyway, as insulin improved, other approaches were over shadowed. Galega officinalis was shelved. Until Type-2 diabetes started expanding.

T-2s don’t like shots.

Actually we T-1s aren’t wild about them either, especially if you look back at those harpoon-sized needles we used to use:

The difference being, of course, if our kind doesn’t take the shots we die. Type-2 can die too, but it takes a looooooooong time and that leaves lots of wiggle room. And an opportunity for pills. Motivated by the prospect of easy money, pharma scientists started looking at past research. Not for drugs that would keep T-1s alive, there was insulin for that, but for something else. For something than could lower blood sugar just enough to keep the T-2s alive and kicking.

Among other things, the French lilac got a second look. It was turned into a pill and by 1957 the first clinical trial was conducted, ironically, in France.

It was first in a class of drugs that would become known as the biguanides. Ironically, this med was shelved a second time when a sister drug in the same class caused a handful of deaths after it hit the market.

The French lilac again collected garden dust until the mid 1970s when new studies showed it was more than 20-times safer than its killing cousin. France again took the lead, approving it in 1979. The FDA took longer. It hit the US market in 1994.

It’s trade name was Latin for sugar eater: Glucophage. It is now generic and is known more commonly by its technical name: Metformin. It is the de facto first line medication for T-2 diabetes, with over 42 million prescriptions written for it last year in the US alone.

Metformin had one recognized side effect. Rare but serious. So rare, in fact, I’ve never met a doc who’s seen it in the flesh. But so serious that it is debatable whether it makes more sense to call an ambulance or call a hearse. Especially in those with comprised kidney function, metformin can cause lactic acidosis. I won’t bore you with the details, but trust me when I tell you that you really don’t want a case of lactic acidosis.

On the opposite side of the coin from death is life, and metformin has the bad habit of making women more fertile. I was running an oral glucose tolerance test on a young woman just last week. She’d been put on metformin (not by us) for pre-diabetes. No one told her it would bump her fertility up. Oops!

Oh yeah. Metformin has one other side effect too. It can cause upset stomach, especially when you are just starting out. This is why we generally start people off with little baby “sub-therapeutic” doses and titrate them upwards.

Oh, yes. One other little thing. Sometimes metformin gives folks diarrhea. But it’s usually not serious and doesn’t last long.

Now, remember my woman on hospice? The one with three years of ultra severe diarrhea so bad it was killing her?

My boss, who does hospice work on the side, was looking at her med list. She’d been on metformin for over a decade. But, what the hell, he figured. Metformin sometimes causes diarrhea. He ordered it stopped.

And three days later she was fine.

After three years of hell, after dozens of tests and doctors visits and consults and specialists, it turns out her problem was caused by a humble, $4 generic diabetes medication.

She’s off hospice. We started insulin to keep her blood sugars at bay. She’s back from the dead, or at least from the expectation of dead soon. She certainly has her life back.

So now she can at long last relax and smell the flowers.

But just not the lilacs.

The Ames Eyetone Trophy for Writing Excellence

2010-10-06T08:00:00.008-06:00

I won a writing award for my CGM compendium, Beyond Fingersticks, the other day: the Ames Eyetone Trophy.

Now, I’ll forgive you for being unfamiliar with the Eyetone trophy, as it is not nearly as well known as the Pulitzer, Hoffer, or even the National Book awards. I’ll even forgive you if “Ames Eyetone” doesn’t ring a bell in your brain, either.

But it should.

I’d heard about the Eyetone, of course. I knew a little about it, but not much. I don’t think I ever even saw a picture of one. Until I won the Trophy.

The Ames Eyetone was the great-great-granddaddy of every blood glucose meter on the planet. It came on the market when all of our kind were still peeing on strips to see where our blood sugar was hours ago.

I Googled around to try and learn more about this pre-internet technological marvel, but there is an appalling lack of information out there about it. What I did learn is that it came out in 1978 and was the first device available to consumers for testing their own blood sugar. It tipped the scales at nearly four pounds, and had to plug into a wall outlet. It was fast. Why it gave you results in a minute!

Life was slower back then.

Except for that whole plugging into a wall thing, it is about the size and shape and look of Mr. Spock’s tricorder device in the original Star Trek TV show.

Who knew Spock was diabetic?

Back in the day, the Ames Eyetone would set you back $400. Of course, what’s really appalling, is that it would have set you back $1,390 in today’s money. Something to think about the next time you are whining about the cost of CGM systems.

It read the existing-for-a-decade Dextostix strip. The Dextostix was a strip that you put a drop of blood on, engaged in a ritual using a squirt bottle of water, a stopwatch, and a color chart. Dextostix strips apparently worked great, but the variation in color was so subtle that most users could only tell if they were high or low. The Eyetone read reflected light off of the Dextostix strip to give you a more accurate blood sugar reading.

My favorite part of the device is the readout. We are so used digital readouts where a machine gives us a number. The Ames Eyetone has a needle:

Actually, according to diabetes guru David Mendosa, the Eyetone was the second-generation of the Ames blood-sugar meter. Ames had been making the more pricy reflectance meter, the A.R. M. of Dr. Bernstein fame, for hospitals and doctor’s offices for a few years before that. You can read David’s fascinating history of meters here: http://www.mendosa.com/history.htm

But back to the Trophy. Beyond Fingersticks had only been out about two weeks when I received an email with the deceptively simple subject line: Trophy.

My first thought was that I was getting spam from some company that makes trophies and award plaques. I almost didn’t open it, as that whole thing with the hot Russian babes that were dying to meet me didn’t work out so well.

Instinct saved me. I opened the email and read:

“I just finished your CGM book and am reading it again. I’m impressed. You certainly deserve some kind of award for writing this book. It could only have been written by a seasoned and very honest diabetic, a world-class teacher, an experienced clinician, and a storyteller.

So what could be an appropriate gift, a trophy of sorts? Well, I have just the thing.

I'm sending you something with some serious sentimental value that I hope you can use in your office as a conversation piece: my 1979 Ames Eyetone Reflectance Meter. I was diagnosed in Dec 1979 and along with teaching me how to do urine tests and showing me how to inject 20 u of NPH every morning and hope for the best...the folks at Children's Hospital in Pittsburgh also recommend I try this other thing, this brand new thing that people had just started using to test their own blood at home, this big black box that could kind of...supplement your urine-test chart, said the nurses.

I've been hanging on to this little piece of diabetes history all these years thinking I'd sell it to the Joslin Clinic for a pretty penny for their museum after there was a cure. But since that hasn't happened, I want to send it to a fellow PWD that is seeing patients, teaching, writing and telling stories. (I surely wish I had known someone like you to give me a hand back in 1979.) Enjoy it for a while, then sell it to a museum if the time comes.”

The email was from “Laura,” one of my diabetic sisters. (That’s what I get for looking at the subject line instead of just looking to see who the email is from). We’ve corresponded on and off over the years. She’s an “undercover” T-1, as her job could be threatened if her employer knew of her condition. She’s not breaking any laws, it’s not like she’s flying an airliner for a living, she’s just being prudent and realistic about the prejudices where she is.

So yeah, the Ames Eyetone Trophy isn’t a “real” contest. I had no competition, no panel of judges. But it was awarded from the heart, by one of my own kind, and that makes it, by far, it is the greatest honor I’ve ever won.

And while I’m the first diabetes writer to ever win it the Ames Eyetone Trophy, I won’t be the last. I’m never selling it. But when I’m old and grayer and willing to part with it, I’ll award it to some other deserving writer.

Maybe to the guy or gal who writes the history of the cure.

Not sure how to take this . . .

2010-09-29T08:00:00.001-06:00

Dear Customer Service:

Today my CGM “mooned” me. Is it being an ass? Is it telling me that I’m an ass? Or does it just mean my blood sugar control is shitty?

Yours Truly,

Wil

New skills

2010-09-22T08:00:00.000-06:00

I untwist the paperclip, bending it carefully around the shiny silver bottle cap, making a handle. With a plastic spoon, I scoop a small amount of the white powder from the Ziploc bag, pouring it into the bottle cap, careful not to spill any.

It looks so harmless.

Next, I tear the tip off of a squeeze tube of sterile water. Squeezing at the middle I fill the bottle cap half full of water, add a wee tightly spun cotton ball, and I’m ready to go.

Holding the “works” in my right hand, I flip a Bic, and begin cooking, holding the tip of flame under the bottom of the cap. Its silver surface turns sooty. In half a minute, bubbles appear. The handle is getting hot in my fingers. The solution starts to boil. I’m supposed to cook it at least 45 seconds.

I always thought that if I did something like this, it would be under a dark bridge somewhere on a foggy night, not a brightly lit conference room on a work day.

Life is full of surprises.

The power dissolved, it’s time. I uncap an insulin syringe, harpoon the mini cotton ball with the tip of the needle, and draw up the warm fluid. The cotton ball is a low tech filter, keeping any un-dissolved crystals out of the syringe.

It’s full.

I roll the syringe between my fingers, feeling it’s warmth. The cold, sterile plastic has become a living thing. I marvel at the feel. How many cold syringes and room temperature syringes have I held in my hands in my life? Too many to count. But this one . . . wow. It’s special. Alluring. Magical. Wonderful.

Even the ritual is addictive.

I tap out the bubbles to the top of the syringe with an expert thump of my finger and gently advance the plunger to get them out without wasting too much of the clear fluid.

I swab the inside of my elbow with an alcohol pad, starting above the vein and swirling outwards. Quickly, I grip the end of the tourniquet in my teeth, wrapping the other end around my bicep, around, under, over. The baby-blue tourniquet is tight around my arm. The vein bulges. It’s ready. It’s time.

I hold the syringe in my left hand, bevel of the needle upwards, 45 degree angle to my arm, and then I slowly lower the needle. It gently kisses my skin above the swollen vein . . .

“Good!” shouts the instructor, “now if this was real, you’d slide the needle into the vein, pull back on the plunger until you see a flash of blood, release the tourniquet (I pull back on the tourniquet by pulling my head up and to the side—the tourniquet snaps off), and shoot up.”

Yep. The State of New Mexico is teaching me how to shoot heroin.

Say what?!

OK, remember how I told you the world is not black and white? But rather, it is a million shades of gray? Well, my world just got grayer.

My clinic is in the process of becoming a certified needle exchange center for intravenous drug abusers. Now hear me out before you freak out. I’ll be first to admit that this is a controversial subject, and it took my boss a full year to convince our community board to go along with it.

So what is needle exchange? Well, it’s what it sounds like. We give junkies brand new clean, sterile needles in exchange for used ones.

Why on earth would we do that?

Because junkies share needles. And sharing needles shares blood. And you should never, ever, ever share blood with anybody. Ever. All kinds of bad shit lives in blood. Hepatitis lives in blood. All three kinds. HIV lives in blood. Need I go on?

And like you can’t judge a book by its cover, you can’t judge a persons’ blood by their looks. There are skuzzy folks with clean blood and sweet little old ladies with AIDS.

Our state has done needle exchange since 1997. Of course we’re not idiots. We call it “Harm Reduction,” instead of “needle exchange.”

Last year we gave out 2.9 million BD insulin syringes to IV drug users. Yeah, that blew my mind too. We also give out pocket sharps holders. We used to give out tourniquets, cookers, cotton balls—everything a proper junkie needs. It’s almost as much paraphernalia as it takes to be diabetic. But State budget cuts have us reduced to the bare-bones basics right now.

So why was I being trained how to properly shoot up heroin? So I can teach others, of course. OK, here’s the thing. There is a right way and a wrong way to shoot heroin into your veins. Do it wrong and you trash your body more than just the heroin alone will do. You blow out your veins. You get ulcers. You cost the tax payers extra money at the ER.

One of my nurses was outraged. She felt we were encouraging drug use. A lot of people feel that way. But you know what? If people choose to use heroin, they are going to do it. With access to help or not.

Now, I used the word “junkie” for dramatic effect in this post. I don’t really feel that way about drug users. They’re just people. And people get addicted to all kinds of things that are bad for them. Tobacco, too much alcohol, excess food, sex with strangers. But they—we—are all still just people. I don’t care what color your skin is. I don’t care what your sex or age is. I don’t care how much or little school you’ve had. If you are a member of the human race, you deserve something as basic as health care.

So needle exchange actually is harm reduction. If we accept you as you are, and treat you to minimize the harm you are doing to yourself, we help us as much as we help you. We lower our society’s health care costs by keeping you as healthy as possible. We reduce the spread of pathogens that may someday spread to us if we ignore you. Or to our children. The availability of clean needles reduces the risk our children will play with dirty ones they find in our parks, our alleys, and our vacant lots.

Users can enroll in our program anonymously. They are literally just a number. They also get a “get out of jail free” card. Any one enrolled with the state’s Harm Reduction program can’t be arrested for carrying their gear. We also give out Narcan, a nasal mist that brings an overdose back from the other side. It’s the opiate addicts’ version of Glucagon.

The State’s program has also had an unexpected consequence. Every site that has been established sees a drop in drug use within 18 months.

Why?

Because junkies become people. They develop relationships and trust with the staff at the clinics. While we give needles we have the chance to bandage scraped knees, treat illnesses, and begin to mend broken hearts and minds. We have a chance, one little step at a time to bring those on our fringes back into the fold. And when they are ready, and not a second before, we will be there to help them beat their addictions.

LifeAfterDx: the movie

2010-09-15T08:00:00.000-06:00

So quite a while back (April of 2009) I think I mentioned that a camera crew followed me around at the clinic. “Just act natural,” I was told with five lights and a giant camera lens in my face.

Yeah, I’ll get right on that.

The film crew came twice, documenting the story of one patient’s odyssey through New Mexico diabetes treatment.

The film was being made for Project ECHO, a University of New Mexico sponsored program that (quoting their web page) uses technology to bridge “the gap between urban healthcare specialists and providers in rural settings,” to show how their program works.

So the movie isn’t about me. I’m just a bit player.

But at the same time, the movie is about more than just project ECHO. The movie is about teamwork. It’s about the diabetes epidemic. It’s about how one state which is short on resources and large on territory is overcoming the treatment challenges. And sadly, it’s also about the differences in outcomes for patients who have access to education and resources, and those that don’t.

You also get to hear and see Dr. Colleran, who wrote the foreword for The Born-Again Diabetic, in action. Actually, due to a typo, she wrote the “foreward,” and will never let me forget it.

And you get to see my clinic, my boss, and my previous office.

Oh, yeah, and you get to see me in action too. Somewhere towards the end of the show.

The film actually came out right after the first of the year this year, and is called Tackling Diabetes is a Team Sport: A Project ECHO Initiative. But it was just recently put online at the UNM School of Medicine web site at http://echo.unm.edu/videos.shtml so I wanted to share it all with you.

So pop some popcorn. Crack open a diet Dr. Pepper. And join me at the movies.

Update on soulless bastards

2010-09-12T13:07:00.001-06:00

Surgeon General’s Warning: Take your blood pressure pills before you read this.

We frequently hear in the press that the reason health insurance premiums keep going up, up, up, up is that the cost of health care keeps going up, up, up, up.

True, but not as true as the insurance companies would have us believe. Between patients last week I was thumbing through a recent copy of The New England Journal of Medicine. Well, actually, I was reading it on my Kindle, so I guess I wasn’t thumbing so much as clicking… but I digress.

This from an article by Ann Mills: “Over the past decade, the largest health insurance companies have seen a disproportionate increase in profits of 250%, or 10 times the rate of inflation. During the past year alone, there has been a double-digit increase in health insurance premiums.”

So even though health care costs are going up, up, up, up the insurance industry has found a way to not simply maintain their profits, but to more than double them.

Nice.

Black Beard the pirate would be proud.

The same day I read in Time magazine that a Kaiser Family Foundation report shows that over the last decade the average annual premium for family policies increased 114% each year. That means it doubles every year, folks. At the same time, the report shows the deductibles have increased to $1,000 for over a quarter of insured workers.

So that means:

1) Every year we pay twice as much.
2) Every year the insurance companies make more money.

And, from personal experience I can give you two more nuggets:

1) Every year less is covered (meds, gear, procedures).
2) Every year your doctor gets paid less.

Revolution in the street, anyone?

Basic Black

2010-09-08T14:17:00.009-06:00

Back in the day, about 1980 or so, cameras were silver. Wonderful, heavy, metal objects that combined art and function. Then came black cameras. Still metal, still heavy, but matte black. Before long no self-respecting professional photographer would be caught dead using a silver camera. That was for amateurs.

Of course, within a decade, all cameras were black. Then plastic made its way into cameras in a big way. Soon cameras were light-weight plasticy devices. Machined precision gave way to computerized controls. Dials gave way to buttons, then buttons gave way to menus.

And then, of course, film itself all but disappeared.

But just before film went on the endangered species list, a wave of retro cameras hit the market. Back to chrome and leather. Yum. A song to the eyes, the fingertips, the heart.

For a while.

But, you know, it’s hard to beat basic black. It’s serious. Elegantly functional. And it matches everything.

One of my T-1 patients, Rick, was in my office yesterday. We downloaded his Med-T pump and CGM. I spun my large square computer screen towards him (it’s mounted on a Lazy Susan for that purpose) and we started chatting about his numbers. Then his CGM squawked at him and he had to check his blood sugar.

He whipped out a dark metallic purple OneTouch UltraMini. This was a new color for me. I had seen silver, green, red, and black. But never the purple. A quick Google also shows metallic blue has joined the family.

Of course, not being an interior designer, I was mistaken on the colors. Green is actually “Limelight®,” and red is actually “Pink Glow™,” and silver isn’t silver, its “Silver Moon™,” black can’t be basic black (although clearly I’d better run out and ™ or ® “Basic Black” right away), for Minis it is “Jet Black™,” the new purple my patient is carrying turns out to be “Purple Twilight®,” and the new blue is, of course, “Blue Comet®.”

I feel like I’m at the paint department at Home Depot, planning a home makeover, rather than talking about diabetes. Don’t get me wrong. I’m thrilled that the consumer electronic craze of wild colors has made it to medical devices. Like computers came in Blah-Beige® for a decade or two, early meters seem to have gotten stuck in white until the FreeStyle Flash, then they were all silver for the next five years. Now we’re really getting some choice.

In addition to his purple mini he had a black lancing device I’d never seen before, and I fell in love with his “Basic Black®©™∑∞☻” colored lancing device the second I saw it. It reminded me of my first black Nikon camera. Actually, at first glance, I thought his lancing device was the new “Delica” that OneTouch (a.k.a. LifeScan, Inc., a Johnson & Johnson Company) has been pushing at trade shows recently. But no, it was the older one-handed nine-depth, short, slim, and sexy lancing device that I’ve been using since it was introduced. In my opinion, the best lancing device ever made. So far.

But now it was dressed for the opera.

In Basic Black.

I guess I started to drool, because Rick insisted I keep it. I frantically dug though my box of lancing devices to find him a fair trade: a traditional off-white and blue. Same model, but more dressed for a tennis match. Rick insisted he didn’t care about color (but I bet you’d have to pry his new Purple Twilight® UltraMini from his cold dead hands).

Yeah, sometimes it is the little things in life that make you happy.

As soon as I got home I velco’d my new Basic Black OneTouch lancing device on to my “Chrome Blood®©™” Presto meter.

Sharp combo. Very fitting for a professional blood sugar tester.

Infusion confusion in a box

2010-08-29T13:13:00.004-06:00

I got a box last week at the clinic. I love getting boxes.

Inside were a whole bunch of materials to promote Infusion Site Awareness Week, which I had never heard of before, and you probably haven’t either, as its brand new. Oh, yes, and it’s this week, all week long. But I gotta tell you, I hesitated to post about it at all.

Why?

Well, first off, the Week was created by Accu-Chek/Roche. So it struck me a little like Hallmark creating a Send Your Fiends a Card Week. Roche, after all, makes the Accu-Chek branded Tender, FlexLink, and Rapid-D infusion sets for insulin pumps. So it seems like there is an inherent conflict of interest here.

And I was also turned off by the ultra-slick media packet that came in the box. It has a disc with Word files that allows you to just drop in a few names from your organization to customize a pre-written press release. Most egregious, from an ex-journalist’s point of view, was the section where they have created a quote that you can attribute to someone in your clinic. Now, I understand that the media relations folks at Roche were trying to make it easy for non-media-savvy clinical folks to try and get some attention in the local press, which benefits everyone I suppose, but attributing a quote to someone who didn’t say it crosses the Rubicon for me. It’s too much. Too far from the truth. A lie with good intent is still a lie. I know the world is not black and white, but we have to have some standards, for God’s sake.

I also dislike jumping on band wagons, writing about what everyone else is writing about. Yeah, my hang up, I know. I just like marching to the beat of a different drummer. But sometimes, we do need to function as an organized movement. To flex the muscles of our collective power. So long as we all write about the same subject with our own styles, flare, and viewpoints—so long as we are not regurgitating press releases—then our voices can unite into a chorus.

But beyond all of that, I wasn’t convinced that we need a Infusion Site Awareness Week. I mean, is this really an issue at all? There are some other weeks I’d like to see first.

Like Insurance Won’t Pay for Enough Test Strips Week.

Like Insurance Won’t Pay for Insulin Pens Week.

Like We Need Better Access to Insulin Pumps Week.

Like We Need CGMs Week.

Anyway, here’s what brought me around: as to Roche being Hallmark; I would prefer that industry not create awareness weeks for their own products. But, as we’ve all been talking about recently, the organizations who are supposed to stand up for us, to create awareness weeks, are failing us miserably. Take the ADA and JDRF’s failures to recognize the hard work of the IDF in creating an international awareness DAY for diabetes. Here in the USA our heavy-hitter organizations seem to have abandoned any sense of mission towards the patient population, beyond milking our wallets.

So if our organizations won’t help us, should we turn our back on industry when they reach out to us? When they step in to try and fill the void? Obviously, I wrestled with this a great deal. It’s a delicate symbiotic balance. We are parasite and host to each other. We cannot survive without industry and the industry cannot survive without us. Literally, on both accounts.

So it sounds like we have a lot in common. And so what if industry gains from an awareness week, if it also helps patients? The world, I remind you, is not black and white.

So that’s what brought me around. Well, that, and the tattoos.

See, in addition to the press materials disc, an educational DVD that I have not bothered to watch, and bunch of happy orange buttons in the box, were the tattoos. These are very cool, numbered temporary tattoos in both bold tribal, and colored girly flowered styles. The concept is that after you pull a site, you slap on a temporary tat so you don’t reuse the site. They are big enough to not only protect the actual cannula injection spot, but also the surrounding skin landscape that has been suffering under adhesive for three days.

The tattoos come on a lightly branded card with the Roche and Accu-Chek logos, with instructions for putting on and removing the tattoos on one side, and infusion site rotation basics on the flip side. The info on the card is well-written, neither too medical nor too dumbed down.

I gotta say, this is bar none, the coolest out-of-the-box, fun, funky, different and inspired teaching aid I’ve seen in a long time. All last week I was handing out tattoo sheets to my T-1 pumper patients of all ages; and they loved them.

So I raise my wine glass (hey, it’s almost ten in the morning) in a toast to Roche. I toast them for taking the reins when our non-profits will not. I toast them for their creativity. I toast them for their generosity.

And I forgive them for crossing the line in their press release, and pray they never do so again.

Oh yeah, and happy Infusion Site Awareness Week.

An unexpected reimbursement

2010-08-22T14:05:00.004-06:00

The email header read “You’ve got money!”

Well, that’s nice.

But those hot Russian babes that were dying to meet me didn’t work out too well.

And not that I tried it, but some guy told me his penis is the same size.

And a lady I knew got burned in a shady deal with the ex-finance minister of a small African nation.

So you gotta be careful on the internet. Yep, your computer really needs a virtual condom.

But the sender was one of my D-kinfolk, so I went ahead and opened it, and this is what I saw:

Thanks, Bernard. I think this is the nicest, most unexpected, most wonderful gift I ever received.