Diversity of thought.

As I was growing up, I imagined that at some point, I would be part of a group of friends and colleagues who retained the things that made them unique, while embracing solidarity in the things that made them alike.

Let me tell you, that did not seem possible for a long, long time. In my twenties, a lot of it was my fault. I had exactly zero social skills in those days. It seems like for longer than I care to remember, I had the market cornered on saying the worst possible thing at the worst possible time. Possibly.

Toward the end of my twenties, I met two people who really taught me a lot about communicating with others, and a lot of what it means to show empathy for another human being. And they taught me the importance of listening. Not just listening because every article and blog post on connecting with others says that listening is important. But because others connect with you when you listen. I have learned so much from these people.
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In addition, I began to read a lot more than before, and my interest in history and challenges that people have overcome has helped me see that successful people are not successful 100 percent of the time. Once I realized this, I could begin to make sure that, as the song says “temporary setbacks / are part of what I’d planned”. I could be nicer to people because I wasn’t as worried about appearing to be the most successful person in the room every second of every day.

It’s not like I was a jerk or anything; at least not intentionally. It’s just that I started to be more open to considering other viewpoints, listening to what others had to say. Then one more important development happened:

The internet blew up.

Now I had access to viewpoints from around the globe, something I had been seeking for a long time. Granted, a lot of the viewpoints you read on the internet are completely whacked out, even in the diabetes community.
but many are not. In fact, some of the most insightful, most poignant nuggets I’ve found have been from quiet little corners of the web where, statistically, few ever go.

Has it helped my diabetes? Sure it has. I’ve certainly learned a lot. I’ve been saved from mistakes thanks to a couple of things I’ve read over the years. And I hope I’ve been able to help people learn, and find help, and find support, shouting through my own window onto the information superhighway.

I’ve also been lucky enough to connect in person with many I’ve encountered first via the web. I’ve been able to prove something that was told to me by someone long ago: that privately, most people are pretty much the same as they seem in public. Through this DOC, that means I’ve been able to meet many wonderful souls who continually teach me a lot about being a person who practices both perseverance and empathy in equal measures.

In the end, I’ve been lucky enough to find those special, unique people who share a lot of my goals and hopes for the future. Whether I’ve met them in person or not, I am invested in the things that are important to them. I am hopeful for their futures too, because what’s good for them, and good about them, is good for me too.

So remember to listen. Let your empathetic side show. Invest yourself in the success of others. You’ll find that you’ll learn a lot, care a lot more about people, and find more friends than you could ever imagine.

Diabetes By The Numbers: Mike Lawson talks Big Blue Test.

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Today begins one of my favorite times of the year. Every year, Diabetes Hands Foundation sponsors the Big Blue Test. Now until November 14 (World Diabetes Day), you and your loved ones, plus anyone else you know, are encouraged to get moving. And log the results. And help diabetes groups doing amazing work to build community and help others.

Here’s how it works: first, check your blood glucose. Not living with diabetes? Skip this step. Then get out and get moving for 14 to 20 minutes or more. You can walk, run, swim, bike, play badminton, ride a Big Wheel, whatever. Then do another BG check (or skip it if you don’t live with diabetes) and log the results at BigBlueTest.org. Or make it easy on yourself and download the Big Blue Test app on your iPhone or Android device, and do the same.

For the next month, every Big Blue Test logged will result in a $3.00(US) donation, split evenly among three wonderful diabetes non-profits:

Diabetes Sisters

We Are Diabetes

Riverside Community Diabetes Collaborative

Three fantastic organizations providing help, education, and support to those living with or at risk of living with diabetes.

Today, Mike Lawson, Senior Director of Programs and Marketing for Diabetes Hands Foundation, joins me to talk everything Big Blue Test, including a little about this year’s grantees, the goals for this year, and a new way for exercise groups to get involved in the Big Blue Test initiative. Have a listen, then click on the links below.
DBTN

Reference Material – Click below for more information on this topic

Mike Lawson is Senior Director of Programming and Marketing for Diabetes Hands Foundation:
diabeteshandsfoundation.org

You can log your Big Blue Test Results at:
BigBlueTest.org

You can also log your exercise after downloading the Big Blue Test app on your iPhone or Android device.

Groups can sign up and log their group exercise activity by going to:
BigBlueTest.org/groups

Don’t forget to share your Big Blue Test activity and follow others by using the hashtag:
#BigBlueTest

Markers of our time.

Back in July, when I was at the Children With Diabetes Friends for Life event in Orlando, I had an opportunity to meet a few people working with Eli Lilly & Company in Indianapolis. Eli Lilly, as you probably know, is one of the largest producers of insulin in America. They also have this nice program that awards medals to People living With Diabetes for 10, 25, and even 50 years.

When one of the Lilly execs asked me how long I had been living with diabetes, I mentioned that I had hit the 25 year mark earlier in the year, which prompted the question “Did you send in for your medal?”. I had not by then, but I had thought about it. A few weeks after that gathering, I went to the Lilly website and applied for my 25 year Journey medal. And that’s where I get to the point, the personal point, of this story.
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On the one hand, it’s incredibly selfish to fill out an online form and say “Please recognize me!”. Even now, a couple of months after receiving my medal, it feels selfish. Living with Type 1 diabetes for 25 years does not make me special, and more importantly, it doesn’t make me any more special than anyone who has lived with diabetes for 24 years or 26 years, or any other number of years. Like my A1c result, it’s just a number. A benchmark.

On the other hand, I spent a lot of the past 25 years enduring crappy A1c results. Various doctors and family members, some with the best of intentions, made me feel like it was entirely my fault. Seventeen or eighteen years after diagnosis, I was being told to manage my diabetes exactly the same way I had been told to manage it in the months after diagnosis. I had heard of insulin pumps, mostly that it meant that my diabetes was way out of control. I had no freaking idea what a continuous glucose monitor was. No one bothered to tell me anything about them, and if they had, I probably would have resisted because I wouldn’t have understood their usefulness.

Things in those days were either good or bad; there was extremely little middle ground, and my fear was that the more people knew about my diabetes, the worse I would look. Once I began to look beyond just good and bad, once I started to examine the gray areas and really consider possibilities rather than punishment, my life and my life with diabetes began to change.

So I get it… I’m not special. But I have certainly earned this medal. And I’m not going to feel bad about that. Part of not feeling bad about that meant actually wearing my 25 year medal at the Diabetes UnConference in Atlantic City in September. You can’t see it, but I’m wearing it in our group photo from the event. Most people probably didn’t know I had it on, but I wanted to wear it while with a group of people living with diabetes.

These were people who completely understand the uphill climb that diabetes can be. How diabetes can take your best efforts and kick them to the curb. The emotions of highs and lows and middle-of-the-night set changes and visits to endocrinologists and ophthalmologists. The concerns about how today’s diabetes may affect our lives years down the road, and how much of it is not good or bad, but simply a game of chance.

I’ll probably pull this medal out from its case and put it on now and then. Because you know what? I really did earn this. Having a medal doesn’t make me special. But it’s a terrific marker of time, and a way to focus on the fact that I have survived for 25 years. And it’s more than okay to be happy about that.

The MiniMed 670g

The 670g is here!

Now what?

To begin with, I’m not going to get hung up on how they name this system, because really, I care more about what it can do. At some point, I might or might not talk about JDRF’s decision to label this an artificial pancreas. But that’s another discussion for another day.

Okay… where was I? That’s right, the hybrid closed loop system that was approved by the U.S. Food and Drug Administration on Wednesday. There is a lot to cover. Here we go:

1. First, I’d like to offer this quote from Medtronic Diabetes CEO Hooman Hakami, who posted this on Wednesday:

”This approval is a significant milestone in the history of diabetes management, and a culmination of many years of dedicated work. With this approval, we are one step closer to delivering a fully automated closed loop system.”

All of this is true. They’ve been working on it for a while, using many resources, conducting many clinical trials. And true, it’s not quite yet a fully automated closed loop system (which would be many people’s definition of an artificial pancreas).

I should mention that during the Medtronic Diabetes Advocates Forum back in April, we talked about artificial pancreas terminology, and “hybrid closed loop system” was terminology that was mentioned. Kind of like, “what would you think if we used the term hybrid closed loop (I’m paraphrasing)? I remember thinking, “well, tell me what that means and I’ll tell you whether I like it”. I suspect others in attendance might have thought the same thing, and I understand now why Medtronic couldn’t reveal why they brought up that terminology. Now, before I get too far off topic…

2. It’s not fully automated? What’s not automated? The system has algorithms to help determine your insulin needs. If the system suggests a correction bolus, you have to accept that before it will deliver the insulin. When you eat, you still need to enter information through the bolus wizard and accept the results. A fully closed loop system would do all this for you, though most of the systems being worked on today will still require some sort of user entry to determine a mealtime bolus. By most measures, this is a marked move forward in insulin delivery systems.

3. About that algorithm… it’s a new algorithm, called SmartguardHCL, which is supposed to improve on what was used in the glucose suspend systems previously released.

4. There’s a new sensor. This is the Guardian sensor. It will work the same as the previous Medtronic CGM iterations, meaning it will insert at a 45 degree angle, the transmitter will have the seashell design we’re used to, and it will need to be taped down to be flat against your skin like the previous versions. But a new sensor should mean more accuracy, and we know users of this system will be counting on accuracy more than ever with a system that is giving you insulin dosing recommendations and the ability to commit to them.

5. The 670g is expected to ship in the Spring of 2017, which means if you’re considering this option, there will be plenty of time to anticipate and do more research.

6. If you started on the 630g recently, there is a an upgrade available. Called the Priority Pathway Program, this will allow those who ordered the 630g (current model) at any time since August 11, 2016 to upgrade to the 670g for $299.00(US). That’s a little more than upgrades have been for other products in the past… but I get it, new and exciting system, it’s not 2010 anymore, this is the price. And considering the rollout is in the Spring, letting people use their current system for six months will hopefully help the nearly three hundred dollar upgrade price go down a little smoother. Or not. Everyone is different, and I get that too.

Look, I’ve been critical of Medtronic in the previous months, and there’s nothing that has changed with regard to the United Health Care issue or other concerns that many people may have. With regard to the 670g, as I said on Twitter, I suspect this news will go down the way a lot of big news goes down. Some will love it, some will hate it, some will be wait and see. That’s okay. No one product will be perfect for every person living with diabetes.

But let’s look at this one development on its own merit, okay? Kudos to Medtronic for working to bring this to the approval stage, and for getting it approved by FDA so quickly. We now have what may be considered the final link in the chain that began with separate pumps, separate CGMs and no way for them to communicate with one another; and will end with a fully automated system that does all of its own thinking for the person with diabetes.

More people, more ideas.

We all know and understand that the cost of diabetes is getting cray-cray. Our Wednesday #DSMA Twitter Chat on September 21 got pretty deep into this discussion, and it wasn’t everything that was on the agenda to discuss that night, but it quickly became the single subject of the chat. Sometimes, important issues just take precedence.
dsma1
Our frustrations lie in a lot of places: drug companies, device makers, insurance companies, “pharmacy benefit managers” (I think I will always have quotes around that term—they don’t deserve to be taken seriously), and even our government, who, as I’ve heard so many times, seems to be just “checking our box”, but not really doing as much as they can to help us.

So there’s a lot of blame to go around. What are the solutions?

I’m not sure I have the perfect answer to that. I know what I would like to see happen. Will what I would like to see happen… actually happen? It hasn’t yet, although it has in small ways. But I don’t know if I have the ultimate solution. Or the Next Great Idea. I also know that often, there is more than one way to reach a goal. But…

There have to be certain elements involved in a successful campaign to “Take Back our Diabetes”, to paraphrase certain U.S. political commentators. To me, those elements seem to be, in no certain order:

– A clear Demand (let’s stop calling it an Ask, okay? It’s time to start demanding what we want)

– Enough people willing to demand what we want. Hint: it’s a hell of a lot more than we have now.

– Enough people willing to keep demanding, especially when we get stonewalled. Let’s remember the next diagnosis, the next family living with diabetes. Even if we’ll never see our success, we can keep demanding so future generations won’t have to work so hard. We want them to have it better than we do. I want to always remember this.

– Lots and lots of new ideas. As I mentioned in the Twitter chat, more ideas increases our chances of coming up with great new ideas.
dsma2
– Someone (hopefully, more than one someone) who is well connected and sympathetic to our cause. This could speed things up a lot.

That’s my list so far. I realize I’m not exactly the Einstein of social activism.

To be fair, there are companies providing assistance to people who need it… ALWAYS be sure to check the website for the drug or device you’re using (or interested in) to see if you might be able to qualify for a little help. Even insurance companies have resources to help deal with claims issues. Your state’s insurance commissioner can often be a great place to voice your concerns. All this can be hard sometimes (PWDs have enough to deal with already), but at least it’s something.

That said, it’s fairly clear that 1) We have major issues regarding diabetes affordability and access; and 2) Governments/Companies/Insurance/”PBMs” will need to be forced into action to help solve pricing and procurement problems. That will only happen when it becomes clear that this is a public health and safety issue for everyone living with diabetes and not living with diabetes, and it will only cease to be so when we get what we demand.

Feel free to fill in the blanks.
 
 
Hat tip to Meri at Our Diabetic Life for her inspiring posts last week.

And hat tip to Renza at Diabetogenic for her post too.

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