#MasterLab: What I learned, and what I experienced.

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.

MasterLab– A one-day diabetes advocacy workshop– contained a full day’s worth of information, education, encouragement, and real world examples of how advocacy has been successful in both the diabetes world and in other areas.

The major takeaways for me on this day: Our advocacy needs to be bigger. In other words, more people need to be involved. And… I really believe this… All of us… This generation… can have a major impact on making lives better for people living with and affected by diabetes.

There was a lot to take in. Partly because of the content of the workshop, and partly because of the people I encountered during my 42 hours or so in Orlando. If you don’t mind, I’d like to break all this down into a week’s worth of blog posts. Okay?

Okay. The day began, as you might expect, with some opening remarks from Manny Hernandez, President of Diabetes Hands Foundation. Among the first things he shared with us was his dream. Stop me if you’ve heard this, but he shared his dream of thousands upon thousands, type 1s and type 2s, LADAs and others, young and old, parents and siblings, friends and spouses and partners, marching on Washington, advocating for the things that all of us living with diabetes need and deserve as human beings who just happen to have defective pancreases. If you’ve never met Manny, or heard him speak, I’ll just tell you this… he’s a dynamic, charismatic leader. When he speaks, you can feel the passion of his convictions. I’m glad he’s in our corner.

DSC01622

Then it was on to our keynote address, given by Paul Madden, a Senior Director at Project Hope. He helped set the tone for the rest of the day. I wish you could have heard him. Here’s a guy who’s been living with diabetes for forty years, and he’s still a D-advocate of the highest order. A couple of things that resonated with me:

“Everyone here is making a conscious decision to change the landscape of diabetes advocacy”

“We are a quiet, sleeping giant in advocacy”

“If you don’t stretch your limits, you set your limits”

And something I’ve been saying for a while now:
“When I’m healthy, I’m productive, I pay taxes, government doesn’t have to support me with tax revenues”

That last quote: Makes so much sense, doesn’t it? Keeping us healthy, as opposed to just keeping us paying customers, saves the government money.

Then we heard from Stacye Beck, Branch Chief for the Diagnostic Devices branch of the U.S. Food & Drug Administration. She spoke about the role of the FDA in regulating diabetes devices, and in advancing safe innovation in diabetes management. What that statement doesn’t say is that this is a person who actually writes some of the guidance that comes down from the federal agency responsible for assuring the accuracy and safety of our diabetes devices.

So what can she tell us about advocacy? She told us about the six hundred comments that were submitted in response to the open dockets on glucose meter and test strip accuracy. Remember Strip Safely? That.

She told us that those six hundred comments were about six or seven times the number of comments they usually receive on open dockets. Remember what I said earlier about more people needing to be involved? That’s what I mean. Sometimes advocacy doesn’t require getting out and raising a lot of money or doing something loudly public. Sometimes, we just need to see an opportunity and take advantage of the opportunity, right from the comfort of our own laptop or tablet. Simple as that. I learned a lot from this presentation.

Stacye also reminded us that there are three things that we can continue to do for people living with diabetes. You don’t even have to leave home to participate in this kind of advocacy:

– Report adverse events to the manufacturer and the FDA

– Comment on dockets for draft guidances (Strip Safely isn’t our one and only chance to make a positive impact)

– Become informed on the facts (from all perspectives)

After that, there was an interesting panel discussion on the topic “What I Wish Patient Advocacy Looked Like”. I loved this panel, because for the first time since I’ve been attending events like this, I saw a true variety of individuals weighing in on this topic.

From left:  Moderator Mike Swearingen, Stayce Beck (FDA), Christel Aprigliano, Andy Balo (Dexcom), John Agos (Sanofi), Melissa Schooley (Medtronic), Bruce Taylor (Roche)

From left: Moderator Mike Swearingen, Stayce Beck (FDA), Christel Aprigliano, Andy Balo (Dexcom), John Agos (Sanofi), Melissa Schooley (Medtronic), Bruce Taylor (Roche)

As you might expect, each panelist had their own opinion about what works and what doesn’t as far as advocacy is concerned. Each panelist seemed to have their own opinion of what constituted a “movement” in terms of D-advocacy. But all seemed to be saying the same thing: We do not yet have enough people involved in advocacy. I invite you to check out the videos that were recorded for each session once they’re posted. You’ll see what I mean. And you’ll see that people from all sides of diabetes are involved in what happens to us. Why shouldn’t you be involved too? You’re not any less important than they are.

The morning also included an inspiring talk from Michael Manganiello, a founding partner at HCM Strategists, a public policy and advocacy firm headquartered in Washington, D.C. Michael is an HIV survivor, which is inspiring in and of itself. He also was at the forefront of the advocacy movement for AIDS patients in the 80s and 90s. Listening to him speak for five minutes would be awesome. We got to hear him speak for about 25, and it was pure gold.

Michael was direct, to the point. He told us things that reassured us, and challenged us too:

“I feel like today, we’ve been talking too much about the status quo”

“If patients are not part of the solution, there is no solution”

“Leadership is built and grown and nurtured and taught”

Speaking about our relationship with lawmakers and federal policy makers:
“You don’t have a movement. They’re just checking your box”

Ouch. I’m embarrassed to admit that he’s right.

We rounded out the first half of the day with Manny and Bennet Dunlap telling us about how we can do it too. How can we, as patients living with diabetes, and friends, family members, spouses of patients living with diabetes ramp up our advocacy efforts?

One way to do it, right now, is to click right here:
http://diabetesadvocates.org/masterlab/

The Diabetes Action Hub has simple, easy instructions on what you can do right now to be a bigger diabetes advocate than you ever thought possible. You’ll learn about the National Diabetes Clinical Care Commission Act (House Resolution 1074 or the Senate bill 539). Both bills call for a commission of health professionals, agencies, and patients to coordinate disparate federal actions to help people living with diabetes.

I know I often refer to advocating for things like this by saying how important they are. Do you know why? Because they are important. They are all important. Is everything okay in your diabetes world? If not, they are all important.

This seems like a good place to stop for now. More to come on the rest of MasterLab throughout the week.
 
 
 

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Comments

  • Mike Hoskins (@MHoskins2179)  On July 7, 2014 at 9:44 am

    Thanks for the great post and initial recap, Stephen. Very much enjoyed following along, and hearing your thoughts here. While it’s hard to argue with Michael’s brilliance in this arena, I also feel it’s self-defeating in some ways. Example: Earlier that day, we heard from one of the panelists about only needing 5 people to change how a Congress-person responds to a particular issue on a given day. Michael followed by saying it’s not the 5 we need, but 500,000. Sure, you can see his point. But that’s really intimidating, and it’s too big. If everyone goes back saying “We need 500,000″ and that’s the big message about starting a movement, it’s intimidating and most won’t want to be involved because it’s not tangible. But 5 is doable, and ANYONE can do that. That’s what we need to get more people, and more people… and yes, you can enough, and maybe there will be a movement. We have succeeded on things like FDA commenting and other forms of advocacy and change. Maybe it’s not “movement caliber” to him, but it’s a huge success that we can build on.

  • scully  On July 7, 2014 at 2:23 pm

    thank you!
    this is the first and probably only post i’ll read about masterlab since this shit just overwhelms me. I chose your post because I knew you would write it in a way that I would gain all the info I needed.
    you’re awesome.

  • Kelley  On July 8, 2014 at 6:41 pm

    Thank you so much for sharing your recap with us! I was so curious about the day but unfortunately, wasn’t able to follow along too well with the tweets. It sounds like it was an amazing conference and hopefully I’ll be able to go next year!

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