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.
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.
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.
“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