The $32.50 hypo and other adventures at the Roche Summit

First, an apology. I don’t want you to think my pen has fallen silent. Quite the contrary. Just look right to your left (so to speak) and you’ll see what’s been consuming every waking moment of my life for the last month and a half. “Finishing touches” can finish a man off.

But I don’t want to talk about that today. If you want to know more about the CGM book, just click on the link and read all about it. Today I want to talk about the ’10 Roche Social Media Summit in Florida.

As a reminder, last year the pharma giant Roche knocked the diabetes social media space on its ear by inviting 29 high profile D-bloggers to their mid-West HQ. Everyone (both invitees and non-invitees) were excited, suspicious, and confused.

After years of whining about how the industry won’t engage with us, we were all instantly paranoid of alterative motives when the industry finally did reach out.

I don’t think that anyone invited turned down the invitation, but most were highly guarded. I tried to keep myself open minded and assume good intent until proven otherwise.

But even though Roche seemed to keep their promises to us I knew I’d have to wait a full year to satisfy myself that this is the real deal. And by real deal, I mean this: Roche told us their motive was to understand the D-world from the patient perspective better. And they wanted to know how (while still making a buck, or two, or ten billion) they could help better educate, inform, and assist diabetics. They admitted they could see the power of the social media space, and could see that it was a logical vehicle to work with. We are the ambassadors for our kind to the outside world, and to some extent help form opinions within our world as well. They wanted to tap into our power, but, they said, not to control or manipulate it.

They had watched Novo step on their own dicks with the Charlie Kimball fiasco (excuse me while I take my Levemir-registered-trademark-insulin-detemir-rDNA-orgin injection). They were in awe of us, but maybe a little afraid of us too. For a multinational corporation to work with the social media is kinda like a power company building a nuclear reactor next to a kindergarten. Yeah, it’s all good and fine as long as electricity powers the school, but if there is an accident…

And the DOC isn’t your average social media space either. We are better organized and better coordinated than most social media. We are a movement.

On the surface, it sure looked like Roche stuck their necks out. And a few members of our tribe were…ummm… hostile. Some very hostile to our hosts. I believe in trying to be polite within limits. But hey, if you really want to know what diabetes is all about, anger is part of the package.

So to me, I decided to judge Roche on how they would deal with the loud, angry voices. I told myself that if the bloggers who were most vocal, most angry, most hostile to our hosts weren’t invited back, I’d know that Roche wasn’t serious.

As you might imagine, when I saw Chris “Rock Star” Thomas in Orlando I gave him a huge bear hug. Both because I was happy to see him, and because his presence was proof that Roche was on the level.

Roche is genuine. Roche really does want to engage with us. Complete with all of our baggage.

It’s the real deal folks.

So to me, that was the big news from the summit, not anything that actually took place there.

Nonetheless, a few other interesting things did occur. Now understand that the venue this year was Orlando, Florida. And before you get jealous on me, please remember that an all-expense-paid trip to Orlando in mid-summer is a mixed blessing at best. Roche chose this humid, steaming, hell-hole for this year’s summit as they were able to shoehorn us in between the ADA Scientific Sessions and the Friends for Life conventions.

The density of D-folk at the hotel was amazing. Kids with pumps and diabetes T-shirts everywhere. People doing the Diabetes Macarena to beeping devices. Is it me? Is it you? That guy over there?

But getting to Florida in the summer also entails flying through some thunder storms from almost any point in the country. My arrival odyssey wasn’t the worst by far, (that honor goes to George “Ninjabetic” Simmons, who spent a night in Dallas sleeping on a folding cot, no shit) but it did leave me significantly sleep deprived. Totally off subject, you always knows when George enters a room because every female present will suddenly run towards him. Some sort of Elvis Presley heard-instinct thing. Naturally, I’m insanely jealous.

But back to the story, having missed so much work lately with the ummm… work place issues… and my back troubles, I decided not to attend either of the other conferences that flanked ours. My chronic poverty also played a role in the decision too. Roche flew me out and put me up for two nights, but anything else would be on my dime (as it should be).

So I worked a half-day at the clinic before heading to the airport. On the surface this made sense. Or it would have if I were still 17 years old, instead of three decades north of that point. My muddled thinking went like this: well, it’s two hours from my home to the airport in Albuquerque. And my clinic is about half way in between. I might as well drop by and do some work on my way. Yeah, OK, that gets me to Florida at midnight-thirty, but I can sleep when I’m dead…

Forgetting of course, that thunderstorms tend to be worse in the afternoon.

So I packed the night before and drove to work, worked half a day, drove to the airport, then stripped naked in the parking garage.

No, silly, not my clothes.

My metal. I took everything off except my CGM transmitter and my infusion set. Into my carry-on went my pump, my CGM, my TENS unit, my medic alert, my wedding ring, my earring, my belt, my wallet, my keys. Everything but my cell phone, which I accidently left on the dash board of my car. More on that later.

Oh yeah. I’m going to waltz right through the frickin’ metal detector this time.

But I got in the wrong line. It wasn’t a metal detector. It was of those new scanners. Yeah. Those things that look through your clothes and see bomb-like CGM transmitters taped to your body, hiding under your shirt.

Eventually, I was deemed not to be a threat to national security and allowed to head for my plane (after hijacking the family restroom to place new electrode pads on my back, hook up my pump, re-route all my wires and hoses, straighten my tie and tuck my shirt in. And, oops! My shoes are still untied. Damn, I hate flying nowadays).

The economy sucking, all the planes are full to the gills nowadays. I assume because airlines have fewer flights. Given the cost of fuel, crews, and maintenance; if the plane isn’t pretty damn full they’ll lose a bucketful of money.

Packed in like sardines, we disengaged from the gate and begin to back away from the terminal. Then the plane stopped.

The Captain came on the loudspeaker. Apparently lightning is striking the end of the runway and the Tower has asked us to hang out on the ground for a bit. As being hit by lighting sucks in general, and isn’t really too good for airplanes either, we’re all OK with a delay.

Then the wind and hail hit. I’m actually experiencing turbulence on the ground. Our plane is rocking back and forth while a symphony of pings, smacks, thuds and thunks delight our ears. The woman next to me quickly crosses herself and squeezes her husband’s hand so tightly that he winces. As our plane violently rocks back and forth I turn to her and say Nothing to worry about, it’s just the elephants in the cargo hold shifting back and forth. She manages a brief laugh and a smile.

Once the storm passes the Captain tells us that they have to send some guys out to inspect the plane and make sure it’s still flyable.

Prudent.

But it takes so long we run out of gas. On the ground. After the gas trucks fill us up again, the Captain comes back on to tells us we could leave but the storm has moved on and now Dallas isn’t letting anyone land anyway, so we might as well sit her rather than circle Dallas in heavy turbulence. We pull back up to the gate so we can de-plane for coffee and scones.

I’m flying Southwest, which to their credit, go to extremes to keep track of who is switching planes where. They even held flights at other airports for a few folks on our plane. My flight is a direct flight, but not a non-stop. I sit in the very back so folks who need to get off here or there are closer to the door. Also, the flight recorders are in the tail of the plane, as it’s the portion most likely to survive in a crash. Hey, I’m just saying….

Arriving in Orlando at nearly three in the morning, my biggest fear is that there will be no driver to take me to the hotel. The airport is eerie. It is a giant shopping mall. But the metal gates are down and the lights are dimmed in all the stores. My fellow passengers and I troop though the dark and silent terminal like the lost tribe of Israel.

A tram ride from our hub to the main terminal now reveals some other signs of life. At the baggage claim is a relaxed gentleman in a chauffeur’s uniform holding a sign with my name on it.

Am I ever glad to see you, I tell him.

We walk out of the cool airport into a steaming jungle. Crap. How do people live here? (We Southwestern folks aren’t used to humidity.) He fetches the car and I unnerve him by calling shotgun. I’m not much for sitting in a back seat while someone drives me. It feels a little to elitist for my taste.

Besides, drivers are interesting people. Pretty much no one goes into limo driving as a career. Like shipwrecked castaways, it is a transient condition. This driver’s goal in life is to cure cancer. He was a highly educated guy from Central America. He’d actually been working for a bio-tech firm that went on the rocks when the economy went south and he was laid off. He remained upbeat and optimistic about the future.

You know what? I think he might just cure cancer one day.

Now remember the cell phone? Sitting on my dash board back in Albuquerque? Right. So I have no way to call my wife and let her know I arrived safely. I had tried to email her from the plane in Albuquerque, but the airport’s free wireless is too weak to reach the tail of a plane outside the terminal. All of our other stops did not have free wireless.

When I checked into the hotel I asked about the internet connection. There was supposed to be free wireless in the lobby, and I had internet in my room. Too tired to dig out my netbook in the lobby I trudged the mile and a half from the lobby to the tower I was in (the hotel was made up of several towers), unpacked my bags and got out my little Sony Vaio Netbook. Where upon I discovered that my room had one of those data plugs and my super-thin little computer did not have a receptacle.

Shit.

I took the netbook and trudged back to the lobby. I couldn’t get a signal on the north side. Or on the west side. Or in the center.

I talk to the night clerk. Is there a business center I can use to fire off a quick email? Yes, but it costs $18 to use.

I hate Marriotts. Even Motel 6 has a free computer for email in the lobby.

The night clerk told me the reception was best in the bar. I sat in the darken, closed bar, now four in the morning, but in the end the only signal I got was from my CGM.

Oh crap. A low blood sugar. In my muddled, sleep deprived state, I had left my room with only my netbook. I had no emergency glucose on me. By the time I made it back to my room I was really, really low. I slammed a Dex 4 fluid then made the mistake of noticing the sliding draw of food under the TV. What the Orlando World Center Marriott Resort calls the “refreshment center.”

Now you need to recall that my blood sugar is low, so my IQ is too. You also need to remember that I have not eaten anything in 15 hours, having been stuck on low-budget airplanes all day. And also bear in mind that refreshment centers are not renowned for healthy food choices. I ate a mini-can of Pringles Potato Chips, a small sack of cashews, a Kit Kat bar, and drank a bottle of Fiji water. And it cost me $32.50.

As a service to me this was electronically charged to my credit card along with an 18% service charge and a 6.5% sales tax.

I think I mentioned that I hate Marriotts.

A hint of light on the eastern horizon, I collapse for a nap.

At least my wakeup call was free.

Ironically, the first person I bumped into in the morning was Chris Bishop. Ironic, because he was the first person I bumped into the previous year too. I like the way the universe works in that way. Anyway, I told him I’d left my cell phone in Albuquerque. “Oh my God, I’m so sorry,” said Chris (with the same expression people use when they give you condolences over your dog being run over by a FedEx truck.) To me, being phoneless is no big deal. Hey, it’s just a phone. But to my younger colleagues, of course, a phone is more than a phone. It is a life support system. For the rest of the morning I got the sorry-about-your-dog look from everyone who found out my phone was all alone in the Albuquerque airport’s parking garage.

I asked Chris if he’d text my wife and let her know I got here OK and was having some communication issues. Chris offered me his phone and I had to confess I don’t know how to text. He stared at me in stunned silence.

My son doesn’t know how to read yet, I said, so I haven’t had to learn how to text.

“Ah,” said Chris, and with a magical blur of his fingers fired off a modern-day telegraph to my spouse. Also totally unrelated, but throughout my journey I had many opportunities to “people watch” and I was taken by the hand movements of the tribe of i-Pad owners, it’s like watching an orchestra conductor as they move their hands in smooth, fluid, musical patterns over the flat shiny surface of their devices.

I honestly don’t remember much about the hotel. I’m sure it was fabulous. But the combination of sleep deprivation, excitement, and physiology issues (i.e.: chronic fucking back pain, blood sugar issues, etc.) took all the energy I had. None left for observing my environment.

Before the start of the conference, we all gathered at chairs and tables simulating an outdoor café in the lobby. It was beyond wonderful to see my T-1 brothers and sisters, as well as my T-2 cousins, again. Plus we had some new faces to meet. In hindsight, I hope that none of the new folks felt left out. We “vets” had so much catching up to do on each other’s lives that we might have been too busy talking with each other to engage with the new folks. I hope that’s not the case.

Once we gathered in the conference room (which had no internet service, as the Marriott would not provide it to Roche without, like, a thousand more bucks—Did I mention that I hate Marriott?—on top of what Roche had paid for all our rooms, the conference room, food, etc.) we started off the day with intro tweets. What the fuck is a tweet? I frantically whispered to my table mates. My younger, hipper colleagues are already used to the fact that unless it involves diabetes, I’m a techno stick in the mud. Each of them tried to explain it to me. Finally it clicked. Oh, a Cliff Notes introduction? They all nodded enthusiastically.

After intros, Roche furthered their recently established credentials for honest intent by kicking the day off with a brief presentation on what they did with the feedback we gave them last year. One of the biggest fusses out of RSMS ’09 wasn’t even on the agenda. We just happened to be in one of their training rooms at their cooperate HQ, and it just happened to be decorated with huge prints of Aviva ads. The ads just happened to really piss all of us off with their meters at 100 or 102 and smiling, happy, obviously non-diabetic models.

Roche got some unexpected ire directed at them.

Low and behold, over the last 12 months they rolled out a new ad campaign staring real d-folks, with real numbers. Not always good numbers, either. But like I always say, a bad number is just good information. Bear in mind that for a company the size of Roche to do anything in 12 months is a bit like turning a supertanker on a dime. It’s nearly a miracle.

We next had an activity that dealt with meter accuracy. The goal, I think, was that Roche wanted to know if meter accuracy is more important on the low end or the high end. Of course the unexpected (to them) answer they got was: both.

I found this all a bit confusing, and in general I don’t think I’m easily confused. Is it true you have to choose? I mean, isn’t accuracy something you have or you don’t? Why would improving high-end accuracy sacrifice low-end accuracy?

We broke into smaller groups to look at various options, varying in the degree to which a meter might be accurate on the high and low ends. So some samples were very accurate on the low and not too good on the high. Others were very accurate on the high, but not too good on the low. And then there were various flavors in between.

To me, at least, the way the data was presented left my head swimming. The pairs of numbers were BGL points in mg/dL on the bottom and percentages on the top. Sorry. I’m not that mathematically nimble. I prefer to think about either apples or oranges, but not both at the same time. By the time I tried to crunch the mental conversions in my head on the second card, I’d forgotten the results of the first.

I’m bad at poker too. I can never remember which hand is better.

It was interesting though, when the various groups started discussing low vs. high accuracy. Those of us hypo unaware really want the thing dead-on when low. Other T-1s wanted it dead-on when high, as that number helps you decide how much insulin to take to correct. An inaccurate high would leave you needed a super-accurate low in about three hours. Our T-2 cousins seemed to want more middle of the road, as any of them on orals really can’t do much to change their blood sugar picture in real time anyway.

We T-1s co-exist with our meters in a very symbiotic relationship. The meter (or meter/CGM) is the GPS system that guides us through the rough terrain of our diabetes every day and every night. For T-2s it’s different. They use their meters more as checks and balances on their therapy, diet, and exercise. It is less of a GPS and more of a map. Hmmm… that strikes me as a lame and crappy analogy. I’ll work on something better later.

But in this light, highly precise meters are required for T-1s and more-or-less accurate ones are required for T-2s. I hesitated to put that on paper for fear that the insurance industry would get wind of it and create two classes of test-strips; paying for good ones for T-1s and paying for only OK ones for T-2s.

Now, I seem to have lost my copy of the agenda, so I can’t refresh my memory on the order of things, but we also had visitors, guests, or ambassadors (your choice) from two organizations in the diabetes world: the American Diabetes Association and the American Association of Diabetes Educators.

The ADA has received raves from many of my co-bloggers for their heavy turnout at our summit. I’m not going to be so kind. The ADA Scientific Sessions were just wrapping up in Orlando as we all arrived. Every ADA staffer except the janitor and the night watchman were already in Orlando. Sending an impressive-looking contingent was a simple matter.

Let us not forget that the reason we have a JDRF is that the ADA were so rude and dismissive to the parents of D-kids that they felt the need to start a new organization.

The ADA has always been an organization by, for, and about doctors who treat diabetes. I’m fine with that. They also fund research projects for diabetes. Fine with that too. Those two functions are valuable and necessary. But for some reason the ADA chose to position itself as THE organization for ALL things diabetes.

I’m not fine with that.

They are not now, and have never been, patient-centric. Their only interest in you as a patient is in your wallet. The main activity of state ADA chapters is fund raising, which as noted above, flows to doctors.

In all fairness, I should make one exception to the rule, sort of. The ADA are the go-to guys for money, guns, and lawyers when it comes to discrimination, stupid laws, and ignorant school officials. This benefits us all in a general way, and the rare individual in a specific way.

Oh, yeah. Second exception. Diabetes Camp. Invaluable service. However, I learned at the RSMS that it is only for younger kids. As T-1 kiddos enter their teen years they are cut off and feel abandoned after years of companionship.

Kinda like kicking a kitten out of your house on the cusp of cathood, don’t you think?

I’m an ex-ADA member, and a harsh critic of the organization, but I sit on their state advisory board here in New Mexico. Yeah, it surprised me too when they invited me to join. But I’ve never had anything good to say about you people.

“That’s exactly why we need your voice,” was the reply.

I thought at that point maybe the ADA was serious about change. But that was several years ago and I don’t sense that much is different, either on the state or national level.

All of that said the ADA folks put on a good show. They were respectful, appeared open minded and honest about the organization’s history of shortcomings. They shared, listened, bounced ideas off of us.

It might have been history in the making. Or it might have been more of the same bullshit.

Time will tell.

Also present were reps from the AADE, an organization I can’t say too many bad things about. The two CDEs they sent were absolutely what I’ve come to expect from this despicable group. They were openly hostile, even their body language resembled what you might expect from Marie Antoinette had she been sent to the market to talk to her subjects.

I wonder why they bothered to come at all.

The biggest lie they fed our crowd dealt with community health workers. OK, some quick background here. CHWs are non-license medical personnel. Their legal scope of practice varies a lot from state to state. They’ve been part of progressive medical organizations for decades. There is a ton of studies showing how effective they are.

CHWs are generally members of the population being served. They receive specific specialized training, and become part of the medical team; frequently serving as cultural, economic, or linguistic ambassadors between the docs and the patients. In a country already short on doctors and nurses that is poised to add 16 million uninsured people to the population of folks seeking medical care (by forcing all of them to buy commercial insurance by 2014, great reform—sarcastic roll of eyes) the CHWs may be the group who keeps the ship from sinking.

As uncertified diabetes educator, who is also not a nurse, many people would consider me a CHW. (I’m not sure what to consider myself, I seem to be somewhat unique.) But I also have several traditional CHWs working for me. And I’m involved (as a faculty member) in a University of New Mexico project for training CHWs in various specialties and figuring out how to integrate them into the health care team.

Our AADE guests made a big deal out of the fact they’ve studied the CHW role. They’ve even issued a white paper. True. But their white paper is a bunch of crap. I’ve read it. It is a three page literature review summed up with the brief mention that CHWs need more study.

But it gets worse. The AADE recently created a program whereby a doctor’s office who does not have a CDE can get the practice itself certified. Essentially, the entire organization becomes a CDE, which would allow them to bill for diabetes education. Prior to that, ironically, the ADA was the only organization who offered program certification. To get ADA certified takes half a dozen folks working non-stop on the project for nearly a year. It also costs thousands of dollars.

The AADE was offering, according to the full page add in a medical journal my boss reads, a simple, cheep, online process.

Hah!

Anyway, after months of mucking around trying to get our clinic certified I came across the AADE’s real position on CHWs. To get certified you have to limit your CHWs to “non-technical,” “non-clinical,” and “non-instructional” roles.

Huh?

Ummmmm…. OK, help me out here. If we are doing diabetes education, what role is non-instructional? Holding the lobby door open? Getting the patient a cup of water?

Once again, the AADE has shown it’s true colors, and the main color is green. The soul of the organization is dedicated to keeping their numbers low, and thus their salaries high.

They were honest enough to point out that the AADE existed to serve its members, not to serve us. But I wondered why they bothered to come at all? They also made a big deal out of the fact that they are not the certifying organization for CDEs.

We all need to dig into that claim further. I think there are more connections that meet the eye. But even if totally true, the AADE, if it chose to, could exert influence to lighten up on certification requirements, rather than tightening them. The AADE, if it chose to, could strongly lobby to create categories of CDEs; like old-fashioned trade guilds in medieval Europe. We could have certified apprentice CDEs, certified journeyman CDEs, and certified master CDEs. It could be a career path. Easy to enter, long and hard to complete. But they won’t.

Because their color is green. Like money. If there is a cheaper category of diabetes educator, the insurance companies won’t see the merit of paying for the more expensive ones.

I’m renewing my call for some powerful and respected organization to help us create an alternative to the CDE and the AADE. I want to see DDEs and FMDEs. I’ve written about this in the past, but I’ll review here.

I believe no one is better equipped to help us than our own kind. DDE stands for Diabetic Diabetes Educator and FMDE stands for Family Member Diabetes Educator. I’d like to see a certification based on both life experience and a rigorous test of knowledge. I’d bet an awful lot of us D-folk could pass the CDE exam without studying. But we will never be given the chance.

If I continued to work at my clinic for 30 more years then magically became an RN, not one single minute of the decades of diabetes education work I would have racked up would count. See, you must first be a nurse (or doc or pharmacist or RD), then you have to find someone to pay you to do diabetes education for a year or two, then you can pay your money and take the test.

I’ve actually been working in the field as a paid diabetes educator for going on six years. I’ve got the hours three times over. But I can’t take the test. And again, those hours would not count if I became a licensed person who is “qualified” to take the test.

I have no qualms with a test as part of a certification. In fact, I think it should be a highly rigorous test. But I also think the door should be open for almost anyone to take that test.

As I believe that those touched by diabetes are most qualified and inspired to help others with diabetes I’d like to see this alternate certification be simple. Do you have diabetes? Have you had it ____ years? (We could debate this detail all day.) Have you passed our test? You got ten bucks on you? OK, here is your certification. And of course something similar for the family members.

Those Type-3 Moms of T-1 kiddos know diabetes inside-out and upside-down. They are smart, smart, smart. And who better to spend some time with a woman whose child was just dx’d?

But I seriously digress. I’ll get off my soap box and get back to the conference. There was a big difference in atmosphere this year. Last year had the tension of a job interview. Everyone on their best behavior (with notable exceptions already noted). This year is was more like a family reunion. I was genuinely happy to see our Roche counterparts again, and I sensed they took joy in seeing our motley crew again as well.

At some point mixed in with all of this we had two great meals, diabetic friendly, celiac friendly, tasty, and pre-carb counted for us. We also had a run-down on what many of our crew were doing in their communities.

After dinner, there was an evening activity that had a fun and games room with video bowling and a charity ping-pong tourney, a photo booth, and a cash bar. All of which I missed.

As dinner broke up David Mendosa grabbed me, “I want to bounce a couple of ideas off of you.” We chatted for an hour or so, and then every time I got ready to join the fun, someone else would come along. The whole evening, instead of video bowling, I engaged in one-on-one and small group chats with my fellow D-bloggers.

It was great.

When the evening formally ended, we moved to the bar. This year we didn’t get thrown out. I stayed up to all hours of the night, just soaking in the company of my fellow D-folk. A decision I’d pay a price for the next day, but one I do not regret.

Last year, I could “see” what Roche got out of the conference. This year, not so much so. I worry that in a effort to clearly signal their good intent, they got very little for the money they spent to get us all out to Florida, feed us, and put us up. I hope I’m wrong, because I’m already looking forward to the ’11 Roche Social Media Summit. In fact, I remember telling Scott Johnson that I was worried that, as I’m not blogging as much as I used to, that I might not be invited back in the future.

Scott was very philosophical about it, going on about how it’s the nature of things that younger, newer voices replace the older ones. He fully expected that in time neither one of us would be considered important enough to be invited.

When he finished I said simply, I think I’d cry if I weren’t invited back.

Scott was silent for a moment. “Yeah, me too,” he said finally.