Dave Diabetes

It’s a great time (or soon to be a great time) to be a Type 1 Diabetic. Insulin Pump and Continuos Glucose Monitor (CGM) makers are starting FDA clinical trials with the promise of releasing a commercial artificial pancreas in the next one to three years. Medtronic has filed for Pre-Market Approval for their MiniMed 670g  with the expectation of receiving a decision from the FDA in a year. Bigfoot Biomedical has announced the beginning of a closed loop clinical trial (Closed Loop?). The Bigfoot system will use an iPhone connected to their pump device, in addition to using a Dexcom G5 for CGM. And then there is my personal favorite (mostly because of the name) from Boston University based Beta Bionics and their iLet "fully integrated bionic pancreas". They hope to be able to offer a bi-hormonal insulin & glucagon system that will not adjust insulin delivery for high and low blood sugar, but infuse glucagon, which would raise blood sugar back to a safe level. There are even still more, but those are some of my favorites. Like I said, it is going to (soon) be a great time to be a diabetic.

I, however, am not waiting. #WeAreNotWaiting

I have joined the now 100 diabetics (or parents/loved ones of) who have built/assembled their own open source artificial pancreas. Through the community found on Gitter and Twitter we help each other go through the process of making our own DIY artificial pancreas. It's not easy, but with the help of others, anyone motivated enough can do it.

I started off building an OpenAPS "rig" that used a Raspberry Pi 3 computer, my Dexcom CGM receiver, a Medtronic CareLink USB stick (for radio communication to my insulin pump) plus a 9000mAh external battery to power the Raspberry Pi. Here's what a rig like this looks like.

(photo credit Dana Lewis)

All of these electronic bits fit snuggly inside a small digital camera bag. This is what my rig looks like. (Imgur album)

(leg model David Cintron)

I started using this system June 3, 2016, and according to the HbA1c estimate from my Dexcom reports I am down .6 points to 6.0 from my last lab tested result of 6.6 from May 2016. As of 7/25/2016 it is showing an estimated 5.8 A1C, and that is with 74% in range 75-160 mg/dL and only 8% hypoglycemia. I used to think 50% in range was doing pretty good! Instead of only making decisions when I tell my pump to do something (e.g. give insulin), my OpenAPS rig adjusts my insulin delivery in coordination with the readings from my CGM. I spent the first couple weeks using this system just amazed at what a difference it was already making in my therapy. I can easily say it's life changing.

Wanting to reduce the physical size of my rig, I started exploring and learning about the tiny versions people were using including replacing the Raspberry Pi with a much smaller Intel Edison microcomputer. The doers and makers in the OpenAPS community have built rigs with the Intel Edison, the smaller Raspberry Pi Zero, and replaced the CareLink USB radio stick with a more powerful range found in the Texas Instruments CC1111 (TI Stick).

(Pictured: Intel Edison rig with TI stick in front of MiniMed pump for scale)

(photo credit Toby Canning)

Expanding on that, there are makers like Pete Schwamb who designed a tiny printed circuit board (PCB) that has a Bluetooth Low Energy (BLE) chip that then can communicate with Sub 1GHz devices, which include the Medtronic MiniMed pumps being used for OpenAPS. His device is called the RileyLink. The next logical step, of course, was for someone to write an iOS framework and app to allow you to use your iPhone to run your artificial pancreas algorithm instead of having to carry around either of the above microcomputer/battery/radio combos seen above.

Being the lover of Apple and iOS devices that I am, this to me seemed like a great option. Especially because it allowed me to use my Dexcom G5 transmitter that already communicated with my iPhone via BLE. This also meant I wouldn't need my Dexcom receiver that I was using with my Raspberry Pi rig, or the huge battery for power.

(RileyLink PCB & Li-Po battery hotness next to giant in comparison Raspberry Pi rig)

That next logical step is found in the LoopKit framework and Loop app written by Nathan Racklyeft. All I had to do was fork (copy) his Github repository (Github is a social coding website), clone it to my Mac (boop beep), change a few lines of text and Build/Run the iOS app on my iPhone using Xcode (sounds easy, right?). I choose to call my app Skadoosh, complete with a Po app icon

(All copyright reserved by Dreamworks)

My iPhone now helps decide to add more basal insulin if my blood sugar is high, and will reduce or suspend insulin delivery if I'm going to be or am low. How cool is that? I wonder if the folks at Apple ever envisioned their devices helping people this way.

The algorithms in Skadoosh or OpenAPS (oref0) are not perfect, and I still have to give insulin before eating or to correct high blood sugar (although not as often as I used to), but some of the burdens of managing my disease are lessened and that to me is pretty amazing.

My wife or I can also remotely monitor the status of my loop by viewing my instance of Nightscout.

(My pump reservoir, battery and status are in the box outlined in red and the arrows point to the blue boxes which are the automatic changes in my basal insulin rate)

I am so excited about the future of Diabetes tech and am encouraged by what seems like the variety of companies (large and small) who are pushing towards the first commercial artificial pancreas. While I wait, however, I'll be using my own version.

I have been an observer of the #Nightscout for a while now. Nightscout, if you are not familiar is a way to put the data from your Dexcom Continuous Glucose Monitor on a web app. From there you can view this data in a web browser on your computer anywhere over the Internet, or perhaps more interestingly over your Smartwatch, like the Pebble.

The problem I had with Nightscout is that in required the diabetic to have

A Dexcom G4 Receiver

A special USB cable

An Android Phone

with them whenever they wanted to upload data to their Nightscout web app. For me personally, this is a lot to carry, and my pockets are already pretty full with my iPhone 6, Dexcom receiver and my Leatherman I carry every day.

for Type1 families, by Type1 families

Really cool and actually quite helpful videos about Diabetes. I may have to send folk who want to get a better understanding of Diabetes to this site. The short videos make it easy for one to view and comprehend.

OP:

submitted by Glenathon [+1] T1 2007 Omnipod

I was excited to see a package at my door containing my upgraded UST400 PDM. Unfortunately, I just received my last shipment of 'pods a short while ago, so I have to wait another 2 or 3 months until I receive my updated 'pods.

Has anyone else received the upgrade?

Is there anything I can do to set up my new PDM while I wait to transition...or is it best to just wait until I'm ready to use it?

What's the best part of the new PDM?

What was the biggest change, for better or worse, that you needed to get used to?

What do you like / dislike about the new system as compared to the older model?

I'd love to hear other users thoughts...specifically upgraders, but open to anyone...of the new device.

Thanks!

And my comment:

loudestnoise T1 1998, OmniPod 

I got the new upgrade (after some work on my part)

You cannot use the new PDM w/ the old pods. You could I guess power it on and play with it

The best part of the new PDM is…uh…err…it's black? I do like the Name Screen & Color feature

The biggest change is how freaking annoying the confirmation screens are. You basically have to push Confirm when you turn the PDM on, when you insert a strip. Annoying

I like the new pods with the blue canula tube and the little red deployed indicator. I do find it annoying some of the extra ARE YOU SURE? screens they added

It seems like Insulet (from my perspective) botched this whole transition thing up a little bit. I get my pods from a authorized distributor (a company my Insurance prefers me to use) and they called me saying that they couldn't ship my order I had placed of old pods as they were completely out of them and that the list they had of OmniPod customers who were to be soon converted did not include my name. They suggested I contact Insulet for help. ಠ_ಠ

(The only reason I had tried to order the old pods was because according to everything I had read and heard from talking to my local Insulet rep was that Insulet would contact me via email or phone to let me know I was getting the new PDM UST400)

When I called Insulet they told me they could overnight me a new PDM UST400 if and only if I could provide them with a LOT number of the new pods I was receiving from the distributor. I then called back the distributor back and told them this news and they were luckily able to provide me that info. I then called Insulet back w/ the LOT number and they overnighted me the PDM.

As of 1/1/13 I am on a new health insurance plan with United Health Care. My wife's employer made the change from Humana to United Health Care, which brings along with it a whole new adventure in getting my *betes stuff covered. 

I've discovered that 

My Novolog insulin is now a Tier 3 drug (Humana covered it Tier 1)

My FreeStyle Test Strips, which are the only kind that work in my OmniPod are also only covered at Tier 3, and only available via Select Designated Pharmacy or as I like to call it a giant pain in the mail order butt. (not to mention test strips aren't supposed to be exposed to heat, like the kind of heat found in beautiful Houston, TX)

Their phone support told me they couldn't even find Freestyle in their drug list and that a Pharmacy Specialist would have to call me back. (I had a physical copy in front of me that listed it and I found the PDF on their own website)

And I haven't even asked if they'll give me any grief when I place my first OmniPod supply order. Also I was hoping to get a CGMS in 2013, which I'm sure will only lead to more denials and wasted hours on the phone.

So I am a Type 1 Diabetic and have been on an insulin pump of one kind or another since the early 2000s. I moved from TN to TX in 2011 and went from one insurance (Blue Cross) to COBRA to Humana when I got married and joined my wife's company's medical group policy. My new insurance (Humana) has been covering my insulin, test strips and other Rxes without an issue. In March of this year I switched from a Medtronic pump to the OmniPod. I love the OmniPod and have had a pretty great experience with it. That is until I tried to get Humana to pay for the pump supplies. Note I say pump supplies, not an insulin pump. I outright bought the Personal Diabetes Manager (PDM) through a special program Insulet (the maker of the OmniPod) had going on. Insulet then billed my insurance for the supplies (the pods) and through that first order I would have met my Humana personal deductible for the year, then giving me 100% coverage of supplies for the remainder of the calendar year. Or so I thought. Turns out Humana thinks otherwise and has denied my claim based on lack of medical necessity.

Really Humana? I'm a diabetic. It is medically necessary. Yes, insulin pump supplies do cost more than straight up needles, but you are going to claim there is no medical necessity for the life sustaining support provided by an insulin pump? I had Insulet reach out on my behalf to Humana and they reviewed the claim and "maintained their decision". And here's the best part. In June of this year Insulet processed my first supply re-order and billed it to Humana. Humana approved the claim and paid a portion of it to Insulet (if they had approved the first claim the order would have not cost me anything because I would have met my deductible). Now because of Insulet and me trying to get them to approve the first claim not only have they maintained their NO answer to the first claim, but they're now claiming the second order was processed in error and are retroactively denying the second claim in June. Yeah, I'm none too pleased.

I've now filed a written appeal that I had to mail to their P.O. Box (thus not allowing me to overnight it via UPS/Fedex) and will wait the ~ 60 days for them to review the decision again and potentially approve it. There in lies my problem since I only have ~ 15 days left of supplies. My plan is to call Humana until they are tired of me and ask them to expedite the process on medical grounds. I thought I would even post my appeal letter (minus the sensitive info) here too in case someone ever needs a template of how to write it. [1] Although, I wouldn't say it works as obviously I haven't got a decision in the affirmative yet.

Hopefully Humana will see the error of their ways and use some common sense and approve the claims. I mean they could have at least come up with a creative denial reason besides "lack of medical necessity". Geez

My Humana Appeal Letter - http://file.davediabet.es/humana_appeal_redacted.pdf

Test strips are a very important part of a person with diabetes' (PWD) life. Personally I have used test strips from many of the major manufacturers of blood glucose meters and test strips like Lifescan's OneTouch, Bayer's Contour, Roche Accu-check's Compact Plus strip drums, and now I use Abbott Diabetes Care FreeStyle test strips. However, according to Insulet, the maker of the OmniPod, I am supposed to only use FreeStyle strips, but not FreeStyle Lite. Despite the fact that the strips look exactly the same. Confused? I sure was. I have been told by someone who knows about OmniPod and the different test strips that Abbott makes, that the FreeStyle Lite strips that have a code number on the vials are OK to use inside my OmniPod Personal Diabetes Manager (PDM). This is my experience, and it would be nice if Insulet and Abbott would officially announce the fact that the FreeStyle Lite strips work in the PDM. It would certainly make me feel better. I'm still going to use my FreeStyle Lite strips and until someone who I know and trust with my Diabetes care tells me otherwise, I'll continue to do so.

I do hope that the rumor that Insulet is going to release a new version of their PDM that will use Lifescan's OneTouch strips will come true as I do get the best co-pay price from my insurance provider on their test strips.

Today marks a week of using the OmniPod insulin pump. I came from using a Medtronic Paradigm pump for close to 10 years. The OmniPod has given me a new interest in my better controlling my diabetes (which I think is a good thing), and satisfies my desire for using cool and unique technology. READ: I'm a gadget enthusiast and a wireless insulin pump/pod system is just plain cool.

I find the process for switching my site and setting up a new pod is much simpler than with the Medtronic pump and requires less tools. I don't have to worry about forgetting my infusion site quick-serter (here's a link and video for those who are unfamiliar) that pushes the needle and cannula into my body. Losing that thing is a pain and at $25 it is a pain in my wallet too. With the OmniPod all I need is the pod with included needle and insulin along with my personal diabetes manager (PDM). Here's a link that includes a video of the steps for filling and starting a new pod.

While I wish the PDM was smaller or something I could control from my iPhone, it is much more user friendly and colorful than my Medtronic pump could have ever hoped to be. I have been loving the FreeStyle strips and the amount of blood they require compared to the OneTouch strips I had been used to. Now I just have to finish up my reserve of OneTouch strips so I can fill a new Rx of those.

My BG readings have been far from perfect, and I'm going to need to work with my diabetes team to adjust my bolus and basal settings, but I'm on my way to better control and hopefully a better HbA1c number (my last was 8.2 in February!). For posterity and openness I've included a summary of my glucose readings from the last week.

My name is David Cintron (Dave), and I have had Type 1 Diabetes since being diagnosed in 1998. I am starting this blog for two reasons. First, I want a record of my journey to control my diabetes better and hope that maybe by writing about it others can be encouraged and learn from my experiences and mistakes. Second, I am a huge fan of the amazing technology that is starting to become available to people with diabetes. With new insulin pumps, continuous glucose monitors and data management tools that connect to things like an iPhone and Android phones being announced all the time, I would like to feature and review when applicable my use of these exciting new products.