Diabetes Blog – Happy-Medium.net

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.
 
 
This MasterLab thing… it was great, it really fired me up to do more with my advocacy, and it even boosted my morale.

Now what? And by extension, you may be thinking, “What do you want me to do?”.

For me, advocacy is a very personal thing. I think it should be for you too.

My only advice: Don’t let the word handcuff you.

I try to think of advocacy with a little a, rather than a big A. I don’t give the word too much influence over me. Earlier in my life, I was intimidated by the word. That intimidation caused me to do nothing at all, which doesn’t help anyone.

But not any longer. Not because I suddenly got braver. No… now I try to concentrate on the things I’m capable of focusing on. If my efforts need to start small, then grow later, okay. I simply try to do what I can, when the need arises. If that eventually turns into full-fledged Advocacy with a capital A, then great. If not, I’ll find something else to get involved in. Not everything is a roaring success.

But… some things are. I not only want to be a part of those successes. I want to help make them happen sooner.

Here’s how you can take a tangible step toward joining a movement, all from the comfort of your own electronic device:

Go to the Diabetes Action Hub now. Take the Diabetes Advocacy Survey (you’ll complete it in less than 5 minutes). Add your information to the database. Help build a strong group of supporters that will be part of a movement, allowing us all to help make our cause bigger and stronger. Then check out the rest of the Diabetes Action Hub to find out how you can help right now. And don’t forget to visit often for updates and calls to action on issues that mean the most to us.

Do you know what has happened to me over the past two and a half years? I’ve gotten involved from time to time in efforts designed to help people. I haven’t always had the time to throw myself fully into whatever need arose, but often I was able to do at least something. What that means is that unlike two and a half years ago, I am actually doing something.

There is a difference between advocacy and a movement. Advocacy is being in someone’s corner… I’ve got your back. I’ll stand up for you, whether or not you can stand up for yourself.

A movement is when many people take tangible steps that have a positive impact for others. Those tangible steps are often small steps. But in big enough numbers, they can move mountains. One big effort by one person is significant. Many small efforts toward the same goal create a movement that no one can ignore.

We need more advocates. No question about it. We need more agitators and litigators and innovators. If that’s you, please step forward. I’ll stand with you and support you.

But I think what we’re missing is a movement. A movement that comes from an army of people that numbers in the hundreds of millions worldwide, who are living with and affected by diabetes. An army of people who are willing to say “I can’t do everything, but I can do something, just let me know”. An army of people who are just trying to do what they can, when the need arises. Because life, and the quality of life, hangs in the balance.

Things have improved tremendously for People With Diabetes in the past few decades. But we’re still an underfunded, misunderstood, red-headed stepchild of a condition. Whether you think five people calling your congressperson is a movement, or whether you think 500,000 people marching on the capitol is the correct definition of a movement, the fact is we need both you and me to be able to reach those numbers. We need you and we need me and we need your family and we need the people at your local coffee house and we need the Congress and the Senate and the President of the United States and if need be, the Supreme Court to get on the steamroller that’s just starting up right now. I look forward to the day when we’re no longer talking about starting a movement, but rather talking about the movement we started.

Are you with me? Take the Diabetes Advocacy Survey now.
 
 
 

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.

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”

“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)

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”

“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.