Things that Happened at the Medtronic Diabetes Advocate Forum

If I could solve the problems, what do you think I would be?

One stupid seagull picking styrofoam up out of the sea . . .

– Don’t Have Time, Liz Phair

Let me start this story by saying I’ve never thought of myself as a big joiner. I don’t generally get jazzed up about my ability to change the world. When I’m faced with challenges — no matter how important or widespread they might be — I’m tempted to curl up in a ball and hide and cry. Doing things can be scary.

I was kind of scared to even attend the Medtronic Diabetes Advocate forum, which took place January 9th – 11th at the Medtronic Diabetes Headquarters in Los Angeles. As I boarded my flight (which, along with food and accommodations and a nice water bottle, was paid for by Medtronic and Bayer), it occurred to me that I hadn’t really been keeping up with others’ blog posts and other happenings in the Diabetes Online Community. I’d seen a partial list of the DOC members who’d be in attendance, so I knew I’d be among people who made a habit of getting shit done, and done well. I wondered if a 4-hour flight was long enough for me to reinvent myself as a true advocate. Or at least someone who gets around to updating her diabetes blog more than once a month. Ahem.

But enough about me and my neuroses — that’s not what this forum was about. It was about all of us, together. And it was an open conversation from the very first moment.

After a warm welcome and a chance to meet some Medtronic executives on Thursday evening, Friday started bright and early. We heard from Katie Szyman, Senior Vice President and Group President of Medtronic Diabetes, as well as Mark O’Donnell, Vice President of Regulatory Affairs, who discussed the “Road to the Artificial Pancreas.” This was a brave idea, and a good one; I think all of us were chomping at the bit to discuss the mistake that Medtronic made when it labeled the 530G with Enlite an Artificial Pancreas. (More about that here.) 

“We heard you. We got it,” Mark O’Donnell reassured us at the outset, and there was a substantial discussion about FDA codes and semantics and approval processes and marketing. I am pretty much convinced that Medtronic recognizes that mistake, and that they’ll be careful with any new products that hit the market between now and the arrival of the real artificial pancreas. The key, as someone suggested, is making sure there’s no “but” or “except” in the explanation of the product. At one point, Katie Szyman flipped to a slide in her presentation that outlined a Closed Loop system. It was a Closed Loop, except the wearer of the system would still have to calculate carbohydrates and dose for meals. (Read: not really a Closed Loop.) It was a good example of how not to identify the next big thing, and we were sure to say so.

A comparison of the Enlite sensor and the Sof-sensor, up on the big screen.

A comparison of the Enlite sensor and the Sof-sensor, up on the big screen.

Improvements in sensor accuracy and insertion pain were addressed as well — both were major issues for me with the use of the Sof-Sensor, and I haven’t tried the Enlite sensor yet. Also, SO MUCH SCIENCE. Percentages and acronyms and graphs that showed little blobs of things floating around in other things with arrows pointing. It reminded me of how I used to want to brew my own beer and start a brewery, and then I saw how much chemistry was involved and realized I would probably be better off just drinking the stuff. I’m not kidding when I say it looks like it takes a PhD to work in Medtronic’s marketing department.

The rest of the morning and afternoon saw breakout discussions of Medtronic’s new StartRight program, which is a pretty cool initiative designed to help keep patients comfortable and confident with pump therapy. It’s something I definitely could have benefited from when I got my little blue 508 14 years ago.

We also had a lively discussion about social media as it applies to saving the world, especially when it comes to helping People with Diabetes.

Bennet and George and Scott, running the show.

Bennet and George and Scott, running the show.

It all kind of pales in comparison, though, to what we heard from Dr. Francine Kaufman on Saturday. Her talk came right after a discussion about reimbursement issues and the barriers to diabetes care that insurance coverage (or lack thereof) can present, so I was already all riled up about kids on Medicaid not getting the tools they need to stay healthy.

Dr. Kaufman is a damn genius, and is insanely passionate about diabetes care for children. Her presentation detailed her own (and Medtronic’s) efforts to improve the levels of care for people with diabetes in Haiti and Kazakhstan, among other countries. I don’t even know how to recount everything she told us, but there are a few parts of her story that I don’t think I’ll forget:

  • That Type 1 diabetes has an 80% mortality rate in Haiti, and that most children with the disease don’t even get diagnosed.
  • The story of a girl in India whose parents, upon her diagnosis, were told to “let her go.” She’d lost her worth. (Happy ending: her parents took great care of her and now she’s a kick-ass grown-up.)
  • Patients in developing countries who struggle to manage their disease with a different supply and type of insulin from day to day — and sometimes nothing to even inject it with.
  • A picture of a small, undernourished child on a hospital bed. “This is what diabetes looks like in Haiti,” Dr. Kaufman told us. “This child died.”

A box of tissues made the rounds, and I felt like a jerk for every time I’ve ever complained about itchy adhesive or how inconvenient it is to wear a dress with my pump.

The rest of the day (and the conference) was when things got real. Fueled by an unlimited supply of Diet Coke and free snacks, plus a few hours of coaching by David Lee Strasberg, my DOC cohorts went to town. Seriously: a plan took shape right there. The second iteration of the Spare a Rose, Save a Child campaign, which benefits Life for a Child, was the focus. How could we expand on last year’s success? Who could call whom? Can someone design a certificate? Can we get someone to match our donations? How do we go beyond talking about this and actually get it done — on and offline?

And that’s when I realized that I could be a real advocate, even if I haven’t read any blog posts in a few months. Because it wasn’t just me. It was all of us. We need each other’s encouragement to keep going with diabetes, but we also need it to help people we don’t even know to keep going with diabetes — even if that just means staying alive. It’s hard to curl up in a ball and cry in the corner when you’ve got 20-something people egging you on to do stuff, inspiring you with their humor and their kindness and conviction and resources. And it doesn’t hurt when you have the support of a company like Minimed behind you too — asking for the input of the whole DOC, and listening with open ears.

Here we all are!

“And now after some thinking, I’d say I’d rather be
A functioning cog in some great machinery serving something beyond me

I’m tongue-tied and dizzy and I can’t keep it to myself
What good is it to sing helplessness blues, why should I wait for anyone else?”

– Helplessness Blues, Fleet Foxes

27 comments on “Things that Happened at the Medtronic Diabetes Advocate Forum

  1. I love this, Jacquie.

    So great to see you again, and you rock at midnight ping-pong.

  2. Kathy says:

    What’s awesome is that even if my face isn’t there, at least I recognize nearly everyone else’s. Thanks for going and representing people like me who can’t get it together enough to blog lately in more than 140 characters!

  3. Scott E says:

    That top photo of the blobs and arrows was one of my favorites. I guess it’s just the engineer in me that was so interested in HOW they made it better (and the cynic in me that wanted to say “Why the f*** didn’t you do it that way in the first place??). I suppose having a diverse group from a varied background is what made this forum so successful.

    It was definitely great to meet you!

  4. Meri says:

    I love every word of this. Nailed it.

  5. Jess says:

    Love, love, love. All of this. And I’m SO HAPPY you were there. Your voice matters.

  6. Katie says:

    I love your new picture in top right corner! Cute haircut!

    I feel I should also say “nice summary of the conference” so as not to seem like all I notice is new pictures of people.

  7. […] secondly want to acknowledge that you are powerful, and that even if you haven’t participated or blogged, or tweeted in a while or even in years, you are needed and wanted. you are still a part of this community and you being alive makes it a […]

  8. Kerri. says:

    Happiness Blues is such a great song. (Great post, too, but had to comment on the excellent musical interludes.)

  9. Jonah says:

    A few thoughts:
    1. The enlite is MUCH more comfortable. than the sof sensor.
    2. I just started pumping and the Start Right program hasn’t exactly helped me. I’ve called my Start Right guy because I have had problems up the wazoo, and he just always transfers me over to the helpline. I coulda done that myself.
    3. Medtronic could afford to buy N and R for every single diabetic child in all of Haiti. A typical child in Haiti could be kept alive on less than $25 of insulin per month (the cost of one vial of walmart insulin). Haiti has roughly 3.5 million children. If we assume that 1 in 1000 is diabetic (which is probably a too high estimate) that’s 3,500 diabetic children. Times $300 per year, that’s roughly a million dollars. Medtronic makes literally billions in dollars off of us every year.
    4. Forget private aid, the US spends more than twenty times that in research on type 1 diabetes every year (and some of those research monies go to companies like medtronic). If instead of all that “Promise to Remember Me” research funding pleas to congress, we asked congress to send that money to Haiti… we could spend our money using the cures (treatments) we already have instead of looking for more cures that will be out of the financial reach of more than half the world’s population.

    • From what I know (and it’s not that much), it’s not an issue of just sending lots of R and NPH to Haiti. The problem isn’t just a lack of insulin. There’s no infrastructure, there’s no refrigeration, there are no doctors or nurses to help kids and parents manage the disease. And there’s tons of corruption, too, so you can’t just ship a bunch of money there. I didn’t mention it in the post, but Dr. Kaufman spoke about efforts to build clinics and educate caregivers in these areas, too.

      I’m glad to hear the new sensor is more comfortable!

    • Sara says:

      Touched a sore spot so I have to respond to your comment about Haiti.

      People are dying daily in Haiti from the cholera epidemic that continues to thrash the country. The government has a stockpile of medication to treat its citizens but they refuse to release it because they are “waiting for an emergency.” A country wide epidemic seems like an emergency to me.

      Several years ago, shortly after the earthquake, I was speaking to the founder of FRIO – the cooling packs that work based on water evaporation. He realized how helpful it would be to donate his product to a country that lacks access to refrigeration. He TRIED to donate the packs. The biggest struggle he found? That there was no one to use them. People are not getting diagnosed and living long enough to face the problem of insulin storage.

      Haiti is a VERY complex country and simply sending foreign aid will do little to nothing to solve its problems.

  10. StephenS says:

    Jacquie, I’m glad to read your write-up on this event, and I’m doubly glad that you were able to be there. I’m looking forward to hearing more!

  11. Kim says:

    Nailed it. Love this!

  12. Tom says:

    I tried to follow it in real time on Twitter. It was a tantalizing tease. Frustrating, exciting and maddening all at the same time. Medtronic invited twitter questions but the answers (when they came at all) made 140 characters seem like excess capacity. I tried to interact with some of the inperson participants, but I got the feeling that instead of truly being an ‘online event for the online community’ those of us outside the room or not ‘players’ in the #DOC were barely an afterthought.

    I hope at the next event of this type, the sponsor does the tweeting like a court reporter, that way folks in the room aren’t distracted and folks like me in the hinterlands can follow along. Live streaming? Drop boxing the slides. Hey – this is the internet age, let’s use it!

    • Live streaming was actually one of the suggestions we gave them! And I like your idea of a court reporter. A lot of us were trying to tweet everything, but it gets so hard to pay attention and tweet at the same time. Let’s get our hands on a diabetic stenographer!

  13. George says:

    This is awesome and I had lots of the same feelings you did at the beginning.

  14. […] Jacquie Wojcik – Typical Type 1 – Things That Happened at the Medtronic Diabetes Advocat… […]

  15. kelly2k says:

    BRAVA in all dimensions!

  16. I love Liz Phair, and I’m not a big joiner. At. All. And if you’re updating your blog once a month, you’re beating the shit out of me at the blog olympics. Um, I don’t really have anything to say that hasn’t already been said, so I’ll just say your’re a badass advocate, and even if I’m in the corner making pictures with crayons, it’s still in support of whatever you and the community are supporting.

  17. Misty says:

    Thanks for your recap and for being there advocating for the whole community. I liked seeing the picture of the sensor comparisons, especially since we are waiting for our new Enlites to arrive anyday.

  18. Heather says:

    I’m with Lee Ann except I’m often scared to even pick up the crayons.
    Thank you for this report and thanks to all who attended for riling me up now and then.

  19. […] work we are doing together I can also visit the excellent posts by Meri, Heather, Lee Ann, Kim 1, Jacquie, Kerri, Kim 2, Jess, and […]

  20. Karen says:

    Great post and I’m so happy you were there!

  21. […] saw a post last month about the plight of people with diabetes around the world, and one of the comments blamed the […]

  22. shannon says:

    since my blog reading/writing has fallen by the wayside in recent months/years, i really appreciated what you had to say about that. thanks for this post. so happy to see so many familiar faces in the pic.

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