Tuesday, January 14, 2014

Moving Mountains: Medtronic Diabetes Advocates Forum

Over the weekend I was invited by Medtronic to their 3rd Diabetes Advocate Forum. It was my first year attending. And I hope I did my best when tweeting the event (#MedtronicDAF) and now, as I share my thoughts with you all about what happened over the weekend. Full disclosure: Medtronic and Bayer paid for all of my transportation, lodging and food. They did not ask me to write anything. All of my opinions are my own. Now that the uncomfortable part is over, onto the good stuff.  

It can be so easy for these things to become a marketing pitch. It’s understandable.  Medtronic is a company. They have a product to sell. More importantly they have the new MiniMed 530G with Enlite sensor (which has an automatic glucose suspend for lows). Accuracy is important to all of us. With so many variables in diabetes as it is, we need all the accuracy we can get. I was happy to hear that the accuracy of the new Enlite sensor is better than its predecessor. While I get decent results with what I have (the predecessor to the Enlite), better is ALWAYS better.

There was also a lot of discussion about the reach for the artificial pancreas. There was explanation, and I felt like there was some clarification on the part of Medtronic and the D-OC. My idea (and I think the one of most of the people) is that a true artificial pancreas would do everything for you. Adjust for lows and highs, give you more insulin when you eat, etc. I always thought it nearly impossible due to currently available insulins. It just simply doesn’t work fast enough to automatically adjust and still avoid a huge spike in blood sugars.

When those at Medtronic are looking at an artificial pancreas as a device that would do everything for you….except bolus when you eat. We would still be responsible for that. It was nice for me to understand what they mean when they say “artificial pancreas.” It clears up a lot, and helps ME to adjust my thought pattern when it comes to an artificial pancreas.  

Medtronic has also started a program called StartRight that helps new pumpers and CGMS users adjust to the devices and assigns them a person that they can always talk with for questions, tips, and anything else. The company has helped increase the rates of patients staying on pump therapy and CGMS, instead of tossing in the towel too quickly. I wish there had been a program around like this when I started pumping. It might have made things much easier (though my need to search for things about insulin pumping eventually led me to the D-OC, and for that I’m eternally grateful).

We also had a great session led by #DSMA/Social Media folks (Scott J, George & Bennett) that involved brain storming, group suggestions on things we can do a individuals and as a whole in the D-OC for advocacy. It felt wonderful and productive (which led to the REAL productivity on Saturday) and inspiring.

And all of this stuff happened on the FIRST DAY! Believe me when I say it was exhausting mentally and physically. And can I also say that after the first day, there was only mention of products as they pertained to what we were discussing when it came to the advocacy that we discussed.

On Saturday we covered some very heavy topics and had what I felt like was an experience that may be life changing. We started out talking about advocating for change in healthcare (specifically insurance). Terms like Medicaid, Medicare, CMS (Centers for Medicaid and Medicare) and “outsourcing” were thrown around like candy.

The biggest thing I came away from that session with how important it is for Medtronic that Medicare and Medicaid start covering pump and CGMS technology. In fact, it was said that it is one of the most important things that they are working on this year. My thoughts on that: GOOD. Let’s get behind them on this and advocate. It’s a huge mountain and I feel like it needs to be not only moved, but completely obliterated.   

We were also blessed to have Dr. Francine Kaufman come speak to us about her passion (and that of Medtronic) for helping those living with diabetes both here and in other countries. As many times as we complain about the technology, medications, etc that we have, others have it so much worse than we do. There are people who can’t even get insulin. And if they do, they may not get the same kind of insulin any month in a row. Care is so subpar that it can’t even be called “care.”

Some things that stuck out in my head from Dr. Kaufman’s presentation? In Haiti, the mortality rate for those diagnosed with T1 is 80% in the first two years. Most don’t even make it to diagnosis. The parents of a young girl in India were told to “let her go” when she was diagnosed. She wasn’t worth anything. And just so you know, she’s a healthy adult now. And another picture that had the tissue box being passed around the room. A young girl in Haiti laying in a bed. Dr. Kaufman said “this is the face of diabetes in Haiti. This girl died.”

I can’t stop the tears as I type these things. In fact I had trouble that day as well. Right before lunch, I stood in the “museum” of the building (where you can see the technology and how it has advanced through the years) and just cried. I couldn’t tell you why. I just couldn’t stop the tears. It was an emotional morning. One that I’m glad I experienced, but pulled emotions from me that I hadn’t felt in a while.

After lunch we met with David Lee Strasberg, method actorand son of the famous Lee Strasberg (yes, the theatre geek in me was FREAKING OUT). It turns out that David and his son both have T1 diabetes. And even more, he helped us out. We participated in a workshop that was all about connecting with people to get things done (a.k.a. making “the ask”). The four areas, Relationship, Vision, Opportunity, and Ask, are all things that we need to work on to organize ourselves as we advocate mightily for diabetes (or anything else).

The end of the afternoon is where the true magic happened. It was building all weekend. Little sparks of magic here and there. Electricity moving through the crowd
. All weekend the air had been thick with positivity, motivation, and inspiration. And then we got to channel it all.

We spent the last hour or so of the day working together as a group of advocates to create a plan and a goal. Our goal? Raise $10,000 for the Life For a Child program through the Spare a Rose/Save a Child initiative (to be rolled out in the coming weeks). The best part? This wasn’t just talk. This was plan making. This is where the rubber meets the road. People were tossing around ideas, taking notes, making concrete plans. “I’ll contact so and so.” “What if we did THIS as a group to get the word out?” “I’ll do THIS.” This was magic.

In the past year or so, I’ve felt detached from the D-OC. Not any fault of the D-OC, but more fault of myself. I’ve felt unmotivated and at one point even talked with a friend in the D-OC about deleting this blog altogether (she wisely advised me to keep it up, and I’m ever so glad I did).

I can say after my weekend at the Medtronic Diabetes Advocacy Forum that I feel renewed. I feel inspired. I feel like I can DO something. And I like that. Time to move mountains people, are you ready to join me?
Advocates & Dr. Kaufman

If you want to read other advocates’ view on the weekend, check out the following:


StephenS said...

Cara, I'm glad you're still writing, and I'm really glad you were at this event! I'm looking forward to reading about your renewed advocacy efforts.

Catherine said...

Thanks for the link and for the summary. It was great to meet you, and I look forward to moving mountains together!

Lee Ann Thill said...

I keep thinking about deleting my blog too. I don't know if I will. I'm all over the place right now. I'm glad you were talked out of it though. I've always appreciated your voice and perspective. As for the weekend, I know we didn't get many proper opportunities to talk - as much I like being invited to these events, the "big group thing" is difficult for me to navigate - but the time we did have was important for me, so thank you.

k2 said...

FTR: I'm so glad you didn't delete your blog - Your voice is from the heart and needed and appreciated!