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!).

Thursday, July 14, 2011

The times they are a-changin’

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.


Blogger George said...

I felt that feeling in the air at Roche also. I think realizing our potential was a powerful moment. We can make a difference.

3:36 PM  
Blogger Meri said...

Once you decide, I'll be marching behind you! I always pick the smartest ones to take the lead. :)

The possibilities are exciting! It seems new ones are flying towards us every day. But where do we put our weight? I imagine when we find our direction, nothing will stop us. We are an army for sure!

Thanks for the update!

5:57 PM  
Blogger Bob Fenton said...

Thanks for a well thought out description of what happened. Wish I could have been there, but I felt needed for something else this year.

10:15 PM  
Blogger Penny said...

Thank you for your perspective Wil. I do think, indeed, the DOC can do anything it puts its mind to, there is power in numbers and I suspect Roche knows that too. I want good things to come out of all these meetings, I want the TO DO to happen. Once the DOC decides what TO DO then I am right behind them all the way. Hard decisions - IDF, FDA and the like. Where to throw the power and the clout, hmmm...

12:07 PM  
Blogger Scott K. Johnson said...

Great post Wil. I felt it too. Like George said, realizing a little bit of our potential was a powerful moment.

My biggest internal conflict is wanting to help ALL of the causes.

4:34 PM  
Blogger Scott S said...

I think one element we as a community really need to push is the forthcoming guidance the FDA has on the so-called "artificial pancreas", and more specifically the first phase of that which is low blood glucose suspend which sounds only logical except to the Fatal Drug Ass-ministration, who remain fixated on the idea that anything which might cause HbA1c to increase by a few basis points could somehow be detrimental to patient outcomes (this is using "surrogate" endpoints to a new level of stupidity IMHO). The draft guidance from the FDA has not specified or defined anywhere in
this guidance what the agency would consider and "unacceptable"
worsening of HbA1c. Without clarity from the FDA on this measure, how can any company realistically expect to meet it?

The FDA usually gets 99.98% of comments from companies that work for the drug, biotech or medical device manufactures, or from doctors and other healthcare professionals including insurance companies who either pay for the devices, or prescribe them (often with overt conflicts-of-interest). However, patients can indeed influence the agency and we should go full-force on this effort.

Comments on this guidance are due on September 20, 2011. I'm hoping to compile my comments for circulation among a few of us in a few weeks, then for broader distribution in late August to early September. To find the docket, visit and search under "FDA-2011-D-0464" for details.

9:19 AM  
Anonymous EMR said...

Good to know you are doing so much and trying to be innovative.We sure have to know the intrinsic intentions of the medications by the big companies who make money on the human bodies.

8:38 PM  
Blogger Mike Hoskins said...

Thanks for this great journalistic recap, Wil! My instincts started me out with the pen and paper, too, but ultimately I turned to the laptop and Blackberry (it was a social media summit, after all!). It's been amazing to watch this evolve through the years, from the new blogging experience to where we are now, and where we're going. Think we do have some critical choices to make as a bigger community, and one of the great things is how diverse we all are - with different specific interests that we can go after various things, but collect our bigger voice too in deciding how to move forward. I'm interested to see how more industry and companies are stepping up to be a part of the two-way discussion.

10:04 PM  

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