Monthly Archives: April 2018

Windy City, here I come.

I’m off to Chicago, Illinois for HealtheVoices18.

HealtheVoices is a gathering of patient advocates. Not just advocates living with diabetes, but advocates living with all kinds of conditions, from cancer to IBD to MS to everything in between.

I attended the first HealtheVoices three years ago, and for various reasons, haven’t been back. This time, I’m going back to a conference that seems much bigger than it was in 2015.

That gathering back in 2015 gave me the inspiration for starting my podcast, and I’m hoping I make the same kind of connections and get the same kind of inspiration that I did then.

Here’s where I tell you that Janssen is paying the cost of travel and hotel for this weekend, and as always, opinions are entirely my own and can never be bought. See previous conference posts to see more about that.

And I promise to share my opinions on HealtheVoices 2018, hopefully some time next week. Until then, have a super weekend, follow the hashtag #HealtheVoices18, and feel free to reach out if you have any questions.

Here’s to the Heroes.

At the Diabetes UnConference, there’s a term we use for the people who share our lives with diabetes, but who don’t actually live with diabetes themselves. We call them People who Love Us, or PLUs.

Where would we be without them?

Diabetes, at its best moments, requires us to perform a number of tasks and stay on top of a number of factors throughout the day, every single day. It can seem overwhelming at times. How wonderful it is to know that someone has the patience to allow us to handle things despite the moments where things don’t turn out so well.

Diabetes forces us to confront realities that others never have to deal with. Hypoglycemia, diabetic ketoacidosis, and words associated with complications and co-morbidities are constantly in the back of our minds. It means more than I can tell you to have someone to talk to about it.

There are parents and spouses and siblings who help fundraise for cures and research toward better technology and treatment for everyone living with diabetes. They give of their time and treasure to support us. It’s hard to find a way to define love in stronger terms.

Heck, what about the parents who took care their kids every night while they grew up and never stopped caring for them after they’d moved away? And the brothers and sisters who’ve also shown patience, who’ve shared, and treated their siblings like they’re worth every extra effort?

And our friends who’ve hung with us through the best of times and the worst of times. Those friends who don’t abandon you when you’re down and are proud to be your rock when everything around you turns to sand.

There are a number of places where the impact of those who love us weaves through our lives with diabetes. It’s impossible to overstate our gratitude for everything you’ve provided, every adjustment you’ve had to make, and every fight you’ve fought on behalf of all of us. So…

Here’s to the Heroes.

Part cheerleader, part confidant, part warrior. If it weren’t for you, we might still be here. But probably not as well as we are today, even if we’re not so well anyway. Probably not so happy, though we may already know some happiness. Probably not so strong, because in many ways, you’ve allowed us to draw our strength from you.

Thank you.

Like these links: More of the DOC’s greatness.

It seems to me that I haven’t shared much of the Diabetes Online Community’s greatness with you lately. So let me try and rectify that. Here’s what I’ve been reading lately:
“That is where the silence comes in. When things are good, we have nothing to talk about. When things are bad, we are ashamed to talk about it. Why? Because the world is full of assholes.”
That’s from Brian at (Buzz, Buzz) Not my Cell. He’s talking about perspective, how the world could use a little more of it, and how sometimes, he recognizes his life is easier than others who have to contend with diabetes every day. I see a lot of truth in this:
Easier Said Than Done
Kate Cornell has an update on her experience as an insulin user. If you’re living with Type 2 Diabetes and thinking about talking to your doctor about insulin as part of your diabetes management, you just might want to hear what Kate has to say:
Insulin: An Update
Diabetes Dominator Daniele Hargenrader has a super diabetes life hack to share with you, and it’s a good one, especially if you use an Omnipod:
Diabetes Adulting Hack
This Diabetes Mine post about alcohol and diabetes is worth a look. It’s a good starting point if you’re looking for more information on mixing alcohol and insulin. And there are helpful links to additional resources included:
Yes, You Can: Safely Drink Alcohol with Diabetes
And Laddie Lindahl is about one year in on her experience with Medicare. Here, she talks about how it’s going. I’m taking notes from her Medicare posts so I have a roadmap for my own Medicare experience in about ten years:
One Year on Medicare: Advocacy Versus Acceptance
Renza used her 20th anniversary of living with diabetes to come up with a list of things she wishes she’d known when she was diagnosed. I don’t know if I could come up with twenty, let alone twenty seven:
Twenty things I wish I knew about diabetes
Finally, a reminder from Kelly Kunik via an experience at a local coffee shop. We could use a little more of this too:
Kindness Counts
One more thing… you may have noticed that my blogroll to the left has been updated. I took out the ones that are gone or where nothing has been posted in the past year. I also added a couple of new Blogs Worth Your Attention. If you have any others you’d like me to add, let me know. Thanks!

Lists and Agendas and Diabetes.

This is the list of tasks I wanted to accomplish last weekend. I know, taxes. I’m not usually a last-minute filer, but after getting them nearly completed a week ago, I needed to get some additional information together before I could send them out.

The good thing about lists is that you can keep track of everything you want to do, or that you want to pick up at the grocery store. Plus, if you’re me, lists are valuable for not forgetting things. I am an unabashed list maker.

That’s where diabetes is different. You can’t make a list for diabetes.

You can make a list of prescriptions or supplies you need to refill. You can list the doctors you need to see this month. But when it comes to the everyday highs, lows, and in betweens of living with this thing on a never ending basis, there is simply no way to plan it out.

I’ve seen the internet memes where people draw schematics to map out their decision processes when their BG is high or low. For many, doing a design like this is cathartic, and for people who don’t live with diabetes, it’s even enlightening.

Speaking only for myself though, it’s neither. That’s not to say I think it’s useless. It’s a great tool. But it’s already been done, and I don’t think I could add much more to it, though it might be fun to try someday.

Also, I remember that there are no schematics, no lists, that can’t get blown away at a moment’s notice, just because diabetes wants to screw with you that day. So while it’s funny to imagine all the twists and turns of our decision-making that happens, the truth is, we often don’t know what’s going to happen during the course of a day with diabetes.

Remember when we read about the costs of diabetes beyond doctor visits and prescriptions? This is part of what they’re talking about. It’s where lives are changed and appointments are missed and meals are adjusted and where we all pay, all of us, everyone living with and not living with diabetes… it’s where all of us pay the cost of a condition that doesn’t care about lists and agendas.

I accomplished everything on my weekend list. That’s the product of a plan, a focused effort, and a diabetes that actually cooperated for once. What galls me is that I have to rely on more than a plan and focused effort to get the job done.

Not exactly Spielberg, but A.I. has arrived.

It is kinda cool, at least for starters.

Wednesday, the U.S. Food and Drug Administration (FDA) approved marketing of a device designed to use artificial intelligence to detect retinopathy in people living with diabetes.

There are several things to cover here. First of all, the FDA announcement is that it “permits marketing” of the device. In other words, it can be sold to practices as an artificial intelligence diagnostic tool. There was a fair amount of testing and back-and-forth in the development and rollout of this device, and I’ll get to that in a minute.

Simply put, this is a way for non-eye doctors to use a tool (actually, two tools) to take a photo, upload the photo, and get a retinopathy or not retinopathy diagnosis. It’s not designed to avoid the more detailed examination an ophthalmologist can perform. But it’s a way to perhaps get an early diagnosis of a potential issue with your eyes.

The tools used by the doctor (presumably, a primary care physician, or GP) are 1) The Topcon NW400 retinal camera. The doctor will take a photo with the retinal camera, then upload it to the cloud, where it will be analyzed by 2) The newly-marketing-permitted IDx-DR software to determine one of two outcomes (from the FDA press release… see link below):
(1) “more than mild diabetic retinopathy detected: refer to an eye care professional” or
(2) “negative for more than mild diabetic retinopathy; rescreen in 12 months.”

So, where’s the “artificial intelligence” angle here? I’m glad you asked.

This is the first device (the software is considered a device in FDA parlance) allowed to be marketed to provide a decision without getting a clinician involved in interpreting the results. In other words, the software, not a human, tells you whether there’s an issue or not.

How did the FDA arrive at the level of confidence needed to arrive at this decision? There were 900 diabetes patients in the clinical study, in ten different locations. The study revealed that the software made the right decision on “more than mild diabetic retinopathy” 87.4 percent of the time, and “not more than mild diabetic retinopathy” 89.5 percent of the time. That may not seem like a lot, but to this observer, that sounds pretty good for first generation software.

One of the other things I’m encouraged by is the way this rollout was handled through FDA’s De Novo premarket review pathway, designed to help new devices that are seen as being low to moderate risk get marketing approval. Through this, FDA granted the software Breakthrough Device designation, which provided a framework for greater interaction between developers and the FDA on guidance, testing, and documentation, so the developers could work more efficiently on FDA’s concerns, and the FDA could more effectively work on review.

Hey, look… I don’t know if this software and the retinal camera needed to make it work are going anywhere. But I think this story is important to pay attention to for the way it was handled by the developers and the FDA, particularly FDA’s Center for Devices and Radiological Health; and the fact that this is software that removes the human element from at least the initial diagnosis process.

How you feel about such a development is your choice.

Read the full FDA press release HERE.

Find out about the De Novo premarket submission process HERE.

Find out about the Expedited Access Pathway Program for Breakthrough Devices HERE.

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