LifeAfterDx--Diabetes Uncensored

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

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Location: New Mexico, United States

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

Wednesday, October 05, 2011

Mr. Wil goes to Washington

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.

5 Comments:

Blogger Bernard said...

Wil, sounds like a worthwhile trip. I traveled to DC twice in years gone by. I don't think I ever got to meet a senator or congressman/woman. Though I did walk past Ted Kennedy who was heading back to his huge office on the way back from the bathroom!

Thanks for sounding the alarm about broadband. That sounds like something the DOC should also think about when considering the spread of social media and the need from remote connections to faraway endos.

3:57 PM  
Anonymous mesa ob gyn said...

Awesome information! It help me a lot being a citizen.

11:11 PM  
Blogger DAVID HAAS said...

Hello,
I have a question about your blog. Please email me!
Thanks,
David

8:34 AM  
Blogger Scott K. Johnson said...

Isn't it an interesting experience? I'm glad you went and I agree that it probably helped you learn more about how things works and just how hard it is to make change happen.

I also agree with Bernard that this is an issue the DOC should pay attention to and get involved in.

8:21 AM  
Anonymous Anonymous said...

Wil,
In your comments about shots vs. pump.....I'm 55year old and a 47+year Type one Diabetic. Been taking multiple shots a day since 1965 and have no complications, till I changed over to the Medtronic Pump in 2007. Yes, I too have utilized both methods to "measure and inject insulin into my body" First two years on the pump = beautiful results. Then suddenly out of contol unexpected hypos and for no reason at all????
In 2009, MD and I were watching close and still no rhyme or reason for unexplained high/lows, job performance suffered, went to boss and stated I having trouble-- then two weeks later FIRED! Still looking for a job equal or better than I had then. Root cause found to be my Medtronic Pump! Pumps are Mechanical. A rule of the world is all mechanincal things do break down. Medtronic a couple of months later came out with a recall of defective infusion sets in 2009. Oddly all I had been suppled with in the last couple of orders, and was using at the time of termination verified, that defective infusion set recall lot!!!!!!!!! Thier customer service supported with Big Phama. legal language treated me like pig poo in a slatted confinement house, and kept trying to wash the issue down into the pits below.
I have been back on multiple shots- the pen,since 2009 and still in contol.
Your absolutly correct it is the Diabetic Mind that is the best of all the tools to control your blood sugar levels. But I can inexpensively quick fix my syringe and the the likes of BD and other syringe makers stand behind thier product; the pump makers WELL..........it's not a perfect world and a pump is a mechanical tool. The PUMPS they are quite more Expensive and it will break down. I can go out on a three day trip with Scout Troop and not worry about my pump getting caught on something or getting dunked in water and quit working. This is less hassel & results in more mental and physical freedom. I keep in contol and at a less cost-less worry about mechanical failure--so be my vote for MDS. Shots win! Please add this fact to your blog comparison.
Thanks
Stan the Man - KC MO.

2:41 PM  

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