Monthly Archives: May 2015

Summer is the time for Champion Athletes With Diabetes.

May 28, 2015 – 9:00 am

Hello Athlete… Competitor… Iron Person… Runner… Biker… Swimmer… Game-Changer… and also, Person With Diabetes.

It has not slipped past me that we are entering the height of activity season in North America and Europe. Many of you are out there working hard every day to get ready for a big event: A 5k run, a long ride, a triathlon, or something else you’ve been wanting to participate in since there was frost on the ground.

Maybe the most inspirational athlete you know is the one close to you who is living with diabetes, and their story is worth celebration and reward.

That’s where this medal comes in:
Champion-Athletes-With-Diabetes-Medal
We’ve given away 27 of these babies to Champion Athletes With Diabetes who reach their athletic goals while dragging along diabetes at the same time. D-Athletes are special, from Ryan Reed, winner of the XFinity series NASCAR race at Daytona this year, to Bob Parant, who made it 65 miles after losing part of his leg, to Janie in Ohio, who completed her first 5k last year after more than 40 years with Type 1.

And trust me when I say, all of our Champion Athletes With Diabetes have stories that are just as inspirational.

Are you next? Is your loved one or family member next? Don’t forget about us when you or that special one reaches the finish line. There are four things that will get you the medal:
 
 
1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said. I’m also semi-flexible on the dates. In other words, don’t stress over this part.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life.
Click here to find out more.
 
 
 

By StephenS | Posted in Athletes With Diabetes | Tagged , | Comments (1)

The DOC as an information source.

May 26, 2015 – 9:20 am

It’s easy for me to think of the Diabetes Online Community as this lovely group of people who advocate, support one another, and help others live better lives with diabetes.

What I sometimes forget, but can never underestimate, is the power of the DOC to inform and educate. Let me give you an example:

After working for my company for 15 or 16 years, I still hadn’t met one other person there living with diabetes. Now, after almost 17 and a half years, I know four.

One of those people contacted me last week to ask about the Animas Vibe system, the pump integrated with the Dexcom G4 continuous glucose monitor. They asked me if I had tried it, and if so, what I thought of the product.

I said that I had not, but had used an Animas Ping pump during a couple of clinical trials at the University of Virginia. This person was really looking to get first-hand knowledge of how the Vibe works and whether it was worth the hype. I then digressed into how awful it is that no insulin pump maker will let patients trial pumps anymore (lamenting the demise of the Snap), and how this would all be easier if we could just decide for ourselves, instead of deciding based on what a company rep or a doctor tells us. Digression is my strong suit.

But you know what? I knew that many people have used the Vibe system, and they’ve written about it, and it wouldn’t take too long at all to find a thorough piece on the subject.

In no time, I found this insightful review of the Animas Vibe by Melissa Lee at A Sweet Life. Sure, I knew that Melissa is knowledgeable and trustworthy, but even if I didn’t know that, her review was a very good one, and I think it’s just what this person needed.

I don’t know if this will help my friend decide on whether the Vibe is the right choice for them. What I do know is that I am often guilty of thinking about how I connect to the DOC, rather than how the DOC connects with me.

This is a good reminder of the vast treasure trove of information that we are all contributing to our community. People don’t have to always go blindly about the healthcare universe, not knowing about a product they and their insurance provider are purchasing until after they purchase it. Just knowing this information is out there already helps people make informed choices, rather than guesses.

Your story, your experiences matter. Sharing the stories of others and their experiences matter just as much. That’s been true since the earliest civilizations graced our planet so many years ago.

So today, let’s remember the power of the Diabetes Online Community as an information source. And let’s keep adding to the wealth of knowledge.
 
 
 

By StephenS | Posted in Social Media, Support | Tagged , , , , , | Comments (3)

Market forces in the insulin pump space.

May 21, 2015 – 10:31 am

It’s no secret that the number of people diagnosed with diabetes is growing, here in the United States and elsewhere. Yet, with the end of the Snap insulin pump last Friday, insulin pump options just got smaller. Does that mean we’ll start to see less innovation in pumping? Less options to upgrade? Possibly a higher cost?

I fear the answer may be Yes.

It’s all tied to a little thing I don’t like to call supply and demand. But I guess I have to.

There are roughly 300,000 insulin pumpers in the USA, give or take 50,000, depending on who you get your data from. As of this time last week, there were six insulin pump options available. That’s about 50,000 pumpers per maker, though obviously, some companies have more market share than others. Today, there are five pumps available to People With Diabetes in this country. If we divide the math evenly, that’s immediately 10,000 more users per pump.

Of course, if you’re a maker of one of these (still available) pumps, you might want to make a deal with previous Snap users to get them under your umbrella before another company does. That’s also supply and demand. So Insulet, makers of the OmniPod, and Animas, makers of the Vibe, are offering deals for Snap pumpers to move to their respective offerings.

Once this transition is complete (I’m guessing in about four months or so), the offers will probably end. At that point, who knows? Well, we do know this: With fewer competitors, pump makers will be less inclined to compete for our business. They will all see a spike in their revenue as a result of Asante’s demise, and they will all believe they have the best pump on the market. So if they don’t want to offer an upgrade pathway for existing users (as Tandem’s t:slim has declined to do recently), they won’t. Especially if you’ve still got some time under warranty left.

And what about price? The retail cost of an insulin pump has been right around $5,000 to $6,500 per unit for some years now. We know that the cost of everything goes up at some point, but that’s especially troubling when it comes to our diabetes, which costs a great deal of my disposable income already, even though I have good insurance coverage. The thought of having to pay even more for something I rely on so heavily is scary indeed. If I finally decide on a new pump in six months, will I have to pay a higher price?

Will I be paying a higher price for what is essentially the same pump? I’m thrilled that Medtronic has their threshold suspend technology, and I’ve seen and heard lots of positive news about the Vibe, but… the pumps themselves, on the outside, appear to be pretty much the same pumps as the previous generation from these companies. At this point, manufacturing these for a number of years (remember, only the software is different) should make the cost to the manufacturer far less than it was at the beginning of their run. But will it still be the same cost? Without any significant innovation other than software, which should also get less expensive over time?

I wish I had we had the chance to try out every pump on the market. Then I’d we’d be able to decide for ourselves if there is something special about a pump that is worth paying the same, or an extra, price for. Or something about a pump that makes it not worth paying the same, or an extra, price for.

Not that we’d be allowed to do that.

More choice, at least steady improvement, and a chance to upgrade for a fair price. Is that all we get, if we’re lucky? How about more innovation, more choices, and less cost as a product gets older? They even do that with mobile phones, for heaven’s sake. Is someone saying we’re not as worthy of innovation, choice, and affordability as the average cell phone user?

That’s the message I’m hearing, and I fear we may not be at the end of this cycle yet.
 
 
 

By StephenS | Posted in Diabetes | Tagged , , | Comments (1)

And then there’s the real world.

May 19, 2015 – 10:50 am

With the excitement over Diabetes Blog Week, I was brought right back down to earth again with two important pieces of news.

One of these stories you probably know already, and one you may not know about at all:

Asante Solutions, makers of the Snap insulin pump (I did the 30 day trial of the Snap last summer), has closed up shop. They left a message on their website Friday saying that they were no longer in business.

This comes as a shock to many, including me. I was so happy with my trial of the Snap last year that I was ready to sign up with Asante the very minute they were approved to use Novolog cartridges (their product only used cartridges filled with Humalog). It was an easy pump to use, it had all of the regular features you’d expect on a pump, plus a couple of extras including its own flashlight, and those glass-filled cartridges filled with Humalog. No more filling reservoirs doesn’t seem like that big of a deal until you actually don’t have to do it anymore. Now, with such a unique feature, Snap users can only use the pump as long as the insulin they have on hand lasts. Unless someone figures out how to refill the used cartridges, which, I don’t even want to think about right now.

It was a big deal last August when Asante announced a partnership of sorts with Dexcom to integrate the Dex mobile app into the Snap architecture. Now that is all for naught, many previously happy pump users have to go searching again, and through the insurance paperwork gauntlet again, and over 100 employees are out of a job.

If you’re a Snap user, you do have an option to transition to the Animas Vibe system. According to Asante’s going out of business announcement, “Animas is graciously offering a limited time offer to all existing Snap users to transition to the Animas Vibe pump.”

No word yet on what that offer might be. To get on your local rep’s call sheet with Animas, call 877-937-7867, extension 1562.

————————————————————————————————

Let’s talk about something better: The U.S. Food and Drug Administration is seeking our input again!

The FDA has prepared draft guidance on collecting and submitting patient preference information, so FDA can consider the benefit-risk thinking of patients using medical devices like insulin pumps and CGMs.

From the introduction of this document, in FDA’s own words:
 
 
”FDA believes that patients can and should bring their own experiences to bear in helping the Agency to evaluate the risk-benefit profile of certain devices.”
 
 
I’m all for that. Once the draft is finalized, it will become the new standard for how FDA thinks about patient preferences when reviewing the devices we use to help us live better lives.

One thing the draft guidance won’t do: It won’t change review standards for safety and effectiveness, and it won’t create extra burden on sponsors of premarket submissions of devices to FDA.

Still, pretty exciting that we’re being asked for our feedback, that our input will result in edits to existing benefit-risk guidance already in place, and that FDA plans to take it seriously during reviews.

We have until August 17 to leave comments on this guidance, and I, along with some others, are still going over this to try and better understand it (it’s 35 pages long). Hopefully, more information will be forthcoming (he said all officially-sounding).

To get a look at the draft guidance and leave a comment, CLICK HERE.

When was the last time anyone ever asked you to talk about what you like or don’t like about your devices? Asked you what you can live with, and what you can’t? Here’s your chance.

Expect to hear more about this soon.
 
 
 

By StephenS | Posted in Advocacy | Tagged , , , , | Comments (1)

#DBlogWeek Day 7: Continuing Connections.

May 17, 2015 – 9:59 am

DBW2015
This is the sixth year of Diabetes Blog Week, started by Karen over at Bitter~Sweet Diabetes. All of us diabetes bloggers are given a subject to write about each day during this week, and after we publish each day’s installment, we’ll go back and link our posts on her site. Want to know more? CLICK HERE.
 
 
Here we are.. the final day of Diabetes Blog Week 2015. Thank you Karen for this fantastic idea, and for all of the hard work you put in every year to make this a really great week.

This is the conclusion of my fourth year of participation in #DBlogWeek, and it’s the first year that I’ve written on all of the topics. I usually use one or two of the wildcard topics, but this year, all of the topics just spoke to me.

Including today’s topic: Continuing Connections.

“The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year. So let’s help foster and continue those connections as we wrap up another Dblog Week. Share a link to a new blog you’ve found or a new friend you’ve made. Or pick a random blog off of the Participant’s List, check it out and share it with us. Let’s take some time today to make new friends.”
 
 
This is a reaaalllly difficult topic. Please understand that when I give you links to two of the posts that I really liked this week, they are not the only posts I found interesting or inspiring. They are two among the many, many blog posts I read, commented on, got misty over, and thought about during this time. I love reading new and old blogs, and finding out about how people go through their daily lives with diabetes along for the ride.

Okay, with that disclaimer out of the way, here we go:
 
 
First, a blog that’s been around for a while. Alanna Swartz writes Life on T1, about her experiences in Nova Scotia, working for JDRF, and getting ready to get married. Oh, and about diabetes too. She is a super-duper advocate.

On Day 3 of Diabetes Blog Week (Clean it Out), she opened up to talk about body image issues, how people perceive them, how hard she works every day, and why she just is so done with worrying about it anymore. It was an incredibly brave post, and it made me want to hug her and tell her that I am in her corner no matter what. Check this out.
 
 
This next blog is one that has been around a while, but one that I have just found this week. Steve writes at a blog called Without Envy, where he writes about life as a parent of a girl with Type 1 Diabetes. On Day 4 (Changes), he talked about Empathy and Effort, in a well-written post entitled A New Utopia. Seriously, this guy is a good writer.
 
 
Bonus: I know I said I had two links to share, but I have a bonus for you too. Molly Schreiber lives in Baltimore like me, and on her blog called And Then You’re At Jax she had a rant on Day 4 that says exactly how we all feel sometimes when it comes to people who think they know what to tell us about our diabetes. It’s definitely worth a bonus read.
 
 
I have so enjoyed reading new and existing blogs this week! I hope you’ve enjoyed Diabetes Blog Week as much as I have. But check back again soon. There are some new things coming to this space very soon. In the meantime, enjoy your Sunday.
 
 
 

By StephenS | Posted in Diabetes Blog Week | Tagged , , , , , , | Comments (1)