Tag Archives: diabetes

Interoperability Awareness.

November 12, 2014 – 10:21 am

I’ve been living with Type 1 Diabetes for 23 years.

Like everyone else who was diagnosed with Type 1 around the time I was (1991), there were just a few options. Those options included, thankfully by then, glucose meters that gave us a reading from a drop of blood we provided. We used the data from those meters as a base for our dietary decisions and our insulin dosing. Also, as a basis for the imagined success or failure of our diabetes management.

Today, with little exception, we’re using the same system. The tools are better, probably more accurate, but we’re using the same system. Whether we’re using a continuous glucose monitor, an insulin pump, a Low Glucose Suspend system, or something else, we’re still using the same drop of blood to guide our decision-making process and the decision-making process of the systems we use.

And that’s okay, except it’s not, because we still can’t get what that drop of blood, or that CGM, or that insulin pump, or that LGS system is doing to work all on the same platform, informing the same data sources. That holds us up from sharing our data with our families (I’m familiar with Nightscout—I’m talking about all of our data). It keeps me from informing healthcare professionals on a real-time basis, at regular appointment times and if, God forbid, I wind up in the emergency room unable to speak for myself. It keeps researchers from being able to use my data to inform and support their discoveries. It keeps the diabetes devices that I wear from working efficiently, keeping me from achieving better outcomes with less effort. I’m talking big picture here: Not just “Can my CGM talk to my pump?”. I mean “Can my meter readings and CGM graphs and pump settings and prescription dosage and anything else health-related reside in one space?”.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, our diabetes devices are still dependent on years-old technology that is mostly confined within the length, breadth, and depth of the device itself.

If my data is all available via one source, where I control who can see it, but once I make it available, it’s easily accessible? That’s the jackpot in this discussion. And guess what? If that ever happens, I’m still going to want an insulin pump. I’m still going to want a CGM. I’m not going away as a customer.

To talk about the proprietary nature of software that a company has developed just doesn’t hold water anymore. The software that comes with your device doesn’t have a separate line item on the invoice. It’s baked into the price. Protecting “intellectual property rights”, in this case, is a 20th Century complaint for a 21st Century world. And it’s an 18th Century argument when it comes to what is best for the patient. I’ve said it before, and I mean it: Patient trumps Proprietary.

People With Diabetes need and are deserving of 21st Century technology that will not only help us reach better outcomes, but will help everyone who helps us reach better outcomes. Please join me in speaking out for greater awareness, and improved access to our data.
 
 
Tomorrow I’ll be attending the U.S. Food and Drug Administration’s Public Workshop – Regulatory Science Considerations for Software Used in Diabetes Management.

This is the message I’m taking with me.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (5)

8 Things I think I think.

November 10, 2014 – 10:04 am

With an affectionate nod to Peter King at Sports Illustrated, who in his Monday Morning Quarterback blog has a feature called Ten Things I think I think, I’m doing the same thing minus two. Hey man, I don’t do this for a living. If you want two more, you’re gonna have to pay me.
 
8
 
1. If all insulin pump warranties are for four years, and Medicare is a little over 12 years away for me (2027), do I want to get a new pump now— so I don’t have to get one until 2030, late in my third year on Medicare (2014, 2018, 2022, 2026, 2030); or do I wait until after my next birthday, which means I would have to go to a new pump on my first year on Medicare (2015, 2019, 2023, 2027)?
 
 
2. I’m wondering why, when I already have my brainpower sapped by managing my diabetes every day, I’ll have to decide from a complicated system of 4(+) Medicare options to make sure I’m covered for whatever comes up. Who designed this and thought this was a way to reward seniors for contributing to society for 65-plus years?
 
 
3. I’m worried that as a result, once I become Medicare eligible, I’ll probably just choose the first plan that covers my pump and ignore everything else.
 
 
4. I really don’t have to worry about all of this, because if the “experts” are correct, diabetes will be cured by then and I won’t even need a pump in five years (or less).
 
 
5. If only.
 
 
6. I’m pretty sure that first thing is the longest sentence, like, ev-er.
 
 
7. That fifth thing is the shortest.
 
 
8. Damn, that’s a lot of pumps.
 
 
 

By StephenS | Posted in Out Of the Box | Also tagged , | Comments (4)

Endo visit: 20 Follow-Ups.

November 7, 2014 – 9:46 am

It was 90-day endo visit time this week, and things went pretty much according to plan.

Stethiscope

My hemoglobin A1c is still in a very good range. But the really good news is that I seem to be getting there with fewer crazy blood sugar swings over the last three months. The data she downloaded showed only a few morning lows, and nothing super-duper low. I had a few other lows sprinkled in there, but not too many. We made a change to my overnight basal rate, dialing it back just a tiny bit to see if it gets me up enough that I don’t risk nighttime hypos. Other than that, I seem to be doing just fine with my settings where they are.

We also spent a little time talking about insulin pumps. I’m still thinking about which pump to go with. Which secretly means I’m hoping for newer versions or different offerings to be announced for the pumps I’m considering. Of course, that’s crazy talk. Nothing’s perfect. I just need to pick the one that works best for me and just go with it.

I’m a little worried about the startup cost too. It’s hard to get me to spend money, even if it is for a good cause… me. But we just had to have some work done on the house, and it was very expensive. Although it looks like I will get an exercise room out of the deal. So I’m at a different level, but I still have to decide right now between doing something to make me healthier, like getting a spin bike for my exercise room, or doing something to keep me healthy, like spending $500-$600 to get started on a new insulin pump (my cost after insurance). I’ll spend money like this sometimes, but almost never without seriously thinking about it. That’s part of what’s kept me from incurring huge amounts of additional debt. I’ve said “No” to myself more times than I can count.

I also got a good check on my blood pressure, my lungs, and my feet… all of which appear to be okay right now(!). When it was all over, I wound up with a couple of backup insulin pens (because my previous ones had expired), new prescriptions for test strips and other meds, and a new appointment in February.

I did notice something in my paperwork before I went in to see her. It noted that this was my 20th follow-up visit with this endocrinologist. That’s over five years with one doctor… I’m pretty sure that’s a record for me. Otherwise, not much to tell this time around. But isn’t that a good thing anyway? I mean, if I ain’t broke, don’t fix me!

But feel free to take care of that malfunctioning pancreas thing as soon as possible…
 
 
 

By StephenS | Posted in Healthcare | Also tagged | Comments (0)

#DOCasksFDA: Excitement, disappointment, perspective.

November 5, 2014 – 11:00 am

Like so many others, I looked/listened/Tweeted in on the #DOCasksFDA presentations on Monday afternoon (or morning, depending on where you live). A conversation between the diabetes community and the U.S. Food and Drug Administration, it promised to open a window to the FDA’s role in our diabetes lives.

I was quite interested in what was going to be said, and how it would be presented. There were numerous presentations by FDA staff and government policy makers, and diabetes community movers and shakers.

Let me just say this, for people who haven’t been at a gathering of this type, and especially for those catching it via the webcast: I do understand that seeing everything via a webcast is not the same as being in the room. But only a few were going to actually be in the room, and that doesn’t mean the rest of us were going to be left totally in the dark. For people who have complained for so long about being left out of the process (define your process here), this was an important step, even if it meant registering for the webcast as a participant, then having to log in as a guest, which probably meant the same thing anyway.

Twitter-KarenBittrSweet

If you don’t know this already, the response was tremendous. In fact, so many people were logged into the webcast that it overwhelmed the web servers at the FDA.

Twitter-DiabetesMine

Honestly, I thought it was possible that we just overwhelmed the meeting capacity of the Adobe® Connect session that was set up for this event. Regardless, it was almost certainly a case of a huge amount of people trying to look through a tiny keyhole all at the same time.

In a way, that’s a good thing, right? We showed the FDA how big a group we are, and how seriously we take the FDA’s role in reviewing and approving drugs and devices. This is proof positive that we have serious questions and concerns, and a big desire to know more.

Twitter-gborkman

On the other hand, it was disappointing to have a large slice of the meeting completely lost. I mean, I started work at 7:00 a.m, worked straight through without a break until the webcast began at 1:00, then worked another two hours after, just so I could take it all in live. So when the webcast went down, then just the audio came back for me, then even that went down again, I felt a real sense of loss.

Twitter-StephenSType1
 
 
Still, I think a sense of perspective needs to prevail here.

Twitter-StripSafely

This is the first time a forum like this has been live streamed between the FDA and the diabetes community. If events like this were reccurring, I would feel good knowing the worst technical problems occurred the first time around, and things got better after that. I’m bummed about missing so much, but I’m willing to forgive a little more the first time around.

Also, we did have the Twitter feed (hashtag: #DOCasksFDA) to rely on when things went awry. It’s not the same as being there, but it is something.

And the best part is that the presentations will be available soon online. I’m hoping that includes recordings of the parts of the webcast those of us not in the room missed.

Most of all, it’s important to note two important things about that afternoon:

1. The FDA is engaging with us.

Twitter-FDA-Patients

2. The diabetes community showed an amazing amount of interest, concern, and advocacy during those three hours, webcast or not. This was Tweeted by Manny Hernandez in the first half hour, and the conversation only accelerated from there:

Twitter-askmanny

Considering the technical difficulties, I hope something like this can be done again very soon. The need exists. The desire is certainly there. I am very grateful to the FDA for agreeing to do this, and for trying to solve technical problems when they happened. I’m grateful to Kelly Close, Adam Brown, and the DiaTribe team for facilitating this event. And I couldn’t be prouder of the rest of the diabetes community, who turned out in oversized numbers to voice our interest in interacting with this government agency. It can only get better from here, yes?
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (5)

One year later.

November 3, 2014 – 9:24 am

Champion-Athletes-With-Diabetes-Medal

One year ago, I used the beginning of Diabetes Awareness Month to springboard the start of our Champion Athletes With Diabetes initiative. Yes, it’s my blog, but I think of this as our initiative, in the sense that a) I had this idea, and b) The Great Spousal Unit has enthusiatically supported it, and c) Countless people and places on the internet have been very supportive too. We’re all to blame, and we’re all to be congratulated (but you guys, more than me… really).

As I’ve mentioned before, I got the idea for this whole thing after I saw a video from Kerri Sparling. I started to look at what it would actually cost to have medals made, make certificates (even The Tin Man received a testimonial!), and send a personal note to each athlete who would write for a medal. The cost seemed reasonable, and in retrospect, the monetary cost plus the cost in time and effort has been miniscule compared to the warmth and kindness I’ve received from our Champion Athletes With Diabetes. And it’s even more miniscule compared to the happiness and pride I’ve felt for my fellow brothers and sisters with broken pancreases each time they achieve athletic goals that seemed nearly impossible when they began.

To date, we’ve delivered fifteen medals to Champion Athletes With Diabetes.

We’ve sent medals to 40 and 50-plus year veterans of living with diabetes. We sent one to a race car driver. We sent one to Scott Johnson and Mike Hoskins. We sent a medal to Mary Beth Wyss, a T1D with two adult children… and we sent one to Kelley Kent, a T1D who will become a Mom for the first time any day now (that’s worthy of its own medal, both before and after the baby is grown). Sprinkled in there are medals for kids and serious runners (hello Cecilia and Corey). And I can’t forget about the amazing Merle Gleeson and the inspirational Bob Parant.

If there’s one thing I hear more than anything else when I talk to people about earning a medal, it’s the notion that they are not a good enough athlete, or they haven’t done enough to earn a medal (yet). This medal is not about achieving a certain level of greatness. It’s about what goes into getting there: The hours of training, the high and (mostly) low blood sugars, the frustrations, and more than anything, the perseverance that is an important and necessary part of any athlete’s equipment.

I’ve been inspired and humbled by what these special athletes have achieved, even before they ever ran a race, or biked in a charity event, or signed up to play volleyball or soccer. I am so grateful you’ve let me share your remarkable stories.

Among the fifteen medals we’ve given away, there are two stories still waiting to be told. So look for more athletes before the end of this month. In the meantime…
 
 
If you are living with diabetes, and you’re active; or if someone close to you is living with D and is active, we would love to send a medal recognizing the athlete’s achievement.

There are only four simple things to do to get yours:

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.

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. It takes a tremendous amount of planning, effort, and bravery to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to walk around the block. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

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. Send an e-mail for your award today.
 
 
Happy Anniversary Athletes!
 
 
 

By StephenS | Posted in Athletes With Diabetes | Also tagged , | Comments (4)