March 27, 2013

Pontificating about Downloading, Oh Yeah and t:connect

At the Diabetes Mine Summit last November Dr. Sidhu of U.C. Berkeley estimated that only one in ten diabetes patients download "stuff". By stuff I mean meters, pumps, cgms, etc. So 90% can't be bothered. 

My feelings about why not are fairly simple. Downloading typically hasn’t worth the extra effort. Some may exclaim ‘but it is your kids’ health!’ Exactly. Diabetes already takes a lot of effort. So extra effort on top of that better come with some serious marginal utility.
Remember marginal utility? They talked about it and widgets way back in economics 101. For the record widgets in economic 101 had no marginal utility for me. Get it? Ha ha ha! I made an economics joke. - Holy crap, am I a nerd or what?
My download experiences with the kids' stuff is it was a PITA to connect it all and that was made worse by the requirements to use a PC not my Mac. (I am not enough of a nerd to think that running a Windows partition on my Mac is Mac compatible.) Some devices needed to be disconnected bla bla bla. In return the data from the pump, meter and CGM all went into different programs and making connections between events was less than easy. 

I wrote this in 2007:
Type 1 isn’t all about the numbers. It is about kids living their lives. That said there are one hell of a lot of numbers. We gotta deal with the numbers, so we can love the kids as kids. Nobody need love the numbers. 
There are a ton of little electronic machines that produce billions and billions of numbers (and about as many strips on the floor.) At times it seems we are floundering in a sea of data points (and strips on the floor.) Unfortunately each machine speaks its own language. What we need is the UN. United Numbers.

We still need United Numbers.

Our friends at Tandem have entered the market with their take on data download. It is called t:connect and is said to available as of yesterday. They were nice enough to let me sit in on web thing about it Monday,  particularly given we don’t use Tandem’s t:slim (I expect the kids will look at it when the next pump renewal comes around.)  My experience with t:slim and t:connect it is limited. Still they seem to have a few things right. 

Their program can connect to PCs and Macs. he t:slim pump is rechargeable and that can happen via the USB cable connected to a computer. While the pump is charging it can sync data. I would love to see it be wireless connectivity but while your are charging is at least a step towards less extra effort. Some meters can also be downloaded by t:connect with the afore mentioned extra effort of finding the meter and cableand hooking them up.  On the plus side the pump remembers the BG numbers you gave it when doing a bolus calculation so some meter data is gonna get there even if you, like me, can’t be bothered to bring the meter to meet the computer. All the information floats off your computer and up into the cloud. You can see it on web enabled devices including mobile. Your device may vary. (See how I did that - YDMV)

Yay team, that seems a little less extra effort. 

The other side of the coin is, does it provide useful data? I poked around a little with a friends account. (Thanks that was very generous. Now change the password so I can't get in anymore, it is your data.)

I liked the reports and when and if t:slim and Dexcom get together there is a lot more potential. I specifically like the combination of the IOB (and it even showed stacked IOB), BG and basals. That seems like a tool that could be useful to help manage a kid tough the ongoing basal rate changes of adolescence. (Consult your physician, I am not suggesting any off label use, YDMV, etc.) So some marginal utility with lower user effort. That is the right direction. Here is a peak at a t:connect report, (this if from a t:connect demo not my friend's data.) 

t:connect looks like real if incremental improvement. That is how diabetes care works right? I look forward to seeing Tandem users' blog posts with more detail. In fact Wil has a piece on Diabetes Mine so have a look, 

The shaded IOB running off reminds me of this

Seems like today was talking about technology day over at SixUntilMe too, Kerri wrote Don’t be an Apphole. Brilliant bit that also manages to talk about diabetes management programs without using economics 101 geek speak. 

For more information on t:connect:

Will on t:connect at Diabetes Mine:

My prior musings on downloading, parenting, devices and more are here:

March 25, 2013

Verio Recall

LifeScan has announced a voluntary removal and replacement of the OneTouch® Verio®IQ blood glucose meter, effective immediately.

The reason:

We have recently determined that at extremely high blood glucose levels of 1024 mg/dL and above, the OneTouch® Verio®IQ Meter will turn off instead of displaying the message “EXTREME HIGH GLUCOSE above 600 mg/dL” as intended. 
I think that there might be other issues at 1,024 but YDMV. At any rate see the details and act accordingly. Maybe most important of acting accordingly,  is to stay out of the extremely high range.

March 21, 2013

Live in PA - Little Help?

Pennsylvanians, it is that time again.

Time to let our elected officials know that among the things we expect them to do is to keep kids with diabetes safe at school.

Find your representatives and feel free to copy and adapt what I sent my Rep, the Honorable Mr. Thomas Murt:

The Honorable Thomas Murt
19 South York Rd.
Hatboro, PA 19040
Dear Representative Murt,

As a parent of two children with type 1 diabetes, I want to thank you for your sponsorship of safe at school legislation in previous sessions.  I know you have supported this since at least 2008 and I have proudly shared my appreciation on my blog. I hope you will continue that support of kids by co-sponsoring the house version of Senator Browne’s upcoming bill that allows local school officials and parents to cooperate to provide safe school environments for children with diabetes. 

I know there are many issues in the Commonwealth. I appreciate that you have show nuanced appreciation for this approach to facilitating parents and schools to work together to keep children safe, in class without a de facto mandate from the capital to micromanage and inflate local school board budgets. I appreciate that you have shown leadership on this issue as a sponsor in the past.

It is time to get this bill out of committee and passed. 

Your renewed sponsorship is an important step in the process. Type 1 diabetes requires ongoing vigilance. Diabetes management does not wait for legislative sessions. Unfortunately not all school budgets can expand to provide full time nursing. Local officials and parents should have the flexibility to agree to train a responsible adult to provide the needed diabetes support to help kids stay safe in schools.

Safe includes medically safe. Most of the daily tasks for children with diabetes care now are provided or supervised by parents and other adults who have be trained by diabetes educators. This standard of care can work in schools where there is not full time nursing coverage. Senator Browne’s bill anticipates that and is supported by the Pennsylvania Medical Society. This clearly demonstrated the processes this bill proposes are medically sound.  

It bill is exactly this kind of considered approach to unique issues that can combine to provide the needed diabetes support in schools.

Thank you for your efforts to keep children safe in school.

Bennet Dunlap

March 14, 2013

FDA warning on T2D meds

Editors Note

From the FDA
FDA Drug Safety Communication: FDA investigating reports of possible increased risk of pancreatitis and pre-cancerous findings of the pancreas from incretin mimetic drugs for type 2 diabetes 
Today FDA announced it is evaluating unpublished new findings by a group of academic researchers that suggest an increased risk of pancreatitis, or inflammation of the pancreas, and pre-cancerous cellular changes called pancreatic duct metaplasia in patients with type 2 diabetes treated with a class of drugs called incretin mimetics. These findings were based on examination of a small number of pancreatic tissue specimens taken from patients after they died from unspecified causes. FDA has asked the researchers to provide the methodology used to collect and study these specimens and to provide the tissue samples so the Agency can further investigate potential pancreatic toxicity associated with the incretin mimetics.

Drugs in the incretin mimetic class include exenatide (Byetta, Bydureon), liraglutide (Victoza), sitagliptin (Januvia, Janumet, Janumet XR, Juvisync), saxagliptin (Onglyza, Kombiglyze XR), alogliptin (Nesina, Kazano, Oseni), and linagliptin (Tradjenta, Jentadueto). These drugs work by mimicking the incretin hormones that the body usually produces naturally to stimulate the release of insulin in response to a meal. They are used along with diet and exercise to lower blood sugar in adults with type 2 diabetes.
For additional information, go to:
Edited 3/18/13 to include: 
Some caveats and balance is provided here by the The Endocrine Society response here: 

March 13, 2013

Good Diabetes Education and Crossing Language Lines

Diabetes doesn't care what language you or I speak. It doesn't wait around for people to chose it. It chooses people around the world.

Yesterday the President of Argentina suggested, that Diabetes is a disease of the rich, because of their sedentary lifestyle. See this post at Diabetes Advocates.

Diabetes is hard enough without silly, pointless and false preconceived opinions. Late night comedian are bad enough but it is their job is to stay dumb ass stuff. A presumably responsible head of state is completely different. Their job is to lead from the facts.

Diabetes is many things, many of which are bad. It doesn't need help to be awful. Diabetes doesn't care about income or language. It makes all walks of life harder. So do ignorant comments. Health is not grounds to separate, classify or stigmatize individuals.

One thing people with diabetes can do is to us honor other's struggles without offering trite solutions. I have learned about the diabetes in my home from friends from Venezuela, Korean and the United Arab Emigrates, Canada, the UK, South Africa, Australia, Germany and more nations. I am supported by African Americans, Asian American, Hispanic American, Caucasian Americans rich, poor, female, male and every race creed and mixture I have met. I choose to try to give that back in kind to everyone I can.

We can empathize with people around the world who have diabetes, not by their choice, but by their biology. Maybe we can realize we are closer to each other than our nationality, language and culture imply to those look for such superficial implications.

We are simply humans. A lot of us get 'the sugar.'

Each of us can choose and what we choose matters. We can choose stigma and lessen ourselves by thinking less of others.  Or we can choose to draw strength from supporting each other and in doing so be humane as well as human.

I choose stand with my friend good friend Manny and many others who choose to cares about people.

March 12, 2013

Help New York Decide to Invest in Diabetes Education

Edited to add the video can be seen here if the NYC site is down, sadly this project didn't get to the next round. Still the idea and video are fantastic:

New York City is challenging, designers, and engineers to develop new products with potential.  Part of the process is a "Popular Choice Finalist" aka social media voting. Here is why this contest matters to people living with diabetes.

Here all this time we thought it looked like a number with a one place decimal like 7.6, 6.4 or 9.7. Often the number is accompanied by a look of disappointment from the person reading the lab sheet. So of course we thought it was a number that is all anyone ever said about it.

But look at the picture. It is a model of a hemoglobin protein. The red bits are the protein's HEME Groups, the part of the protein that move oxygen around the body. They give blood its red color. The spiky blue parts are glucose molecules attached to the hemoglobin. The more of them the higher the A1C. If the little blue bastard are sticking to every hemoglobin cell in our bodies, they are sticking to everything else too.

This model is one of a kind. Wouldn't it be kick ass if every educator had one of these so that patients could see, touch and and feel to understand that A1C in more than a arbitrary number?

We can help get these to educators by voting in New York City's Next Top Makers contest. The winner moves on to a round of professional advice and possible funding. I think better diabetes education tools is a fantastic idea. If you do too, vote. Vote early and often if you can figure out how.

Then, please, spread the word on you blog, Twitter feed, Facebook... where ever. Together we can help NYC think beyond commercial potential to public health value.

Voting is open to March 27 at 5:00pm EDT.

March 7, 2013

ThePerfectD aka @ThePerfectDBlog

I wrote this a few years ago. I still feel the same way, maybe more so. 
I try to learn from my feelings around type 1 how to honor others without a response that minimizes their struggles.  
When I was at the low point of my deluge of diabetes related emotions I looked forward to a weekly podcast. It was my link to a world that shared similar lives. The news on science was a glimmer of hope for the future. The advice on care provided strength to do better day to day. Mostly the voice of the presenter was a connection to an individual who honored my struggles.  
I got to meet her. She is far more dynamic and caring than I could have guessed and I had ridiculously high expectations. I got to see her again the next year. She introduced her mom. I considered that to be a privilege. Her mom is a hero to me. I want my daughters as well raised this mom's.

The ODC has grown in amazing ways. Still there is room for more, particularly when it is making space for the return of woman I wrote that for. New blog, but all that and more. 

Welcome back Christel, ThePerfectD 

March 6, 2013

Empathy. Honoring struggle without trite solutions.

I wrote this as a response to my good friend Scott Benner's post Our Community at Arden's Day. It is also a response to Sara, Jess, a classic by Boba new blog by Christela host of Facebook messages, Tweets, texts, phone calls and more.  I originally posted it at Arden's Day and have copied it here.  

In my view empathy is what hold the diabetes community together. By empathy. I mean to honor another’s struggle without offering them a trite formula. I have written about empathy a lot. I think the DOC does it well, most of the time. Lots of folks do that. Scott, you do. So so Sara, Jess, Bob and countless others. I hope I do, I hope Tom gets back to it. 

From my perspective both the lines of honoring and trite were crossed, and crossed with forethought, by DRI. That is unfortunate, to the point that I agree with your assessment of both cruel and unthinkable. 

Here is why I say DRI forthought. 

This came days before Tom's Facebook post. It is a DRI email teasing "The Next Quantum Leap: The Biological Cure" in the subject line. Clearly the "The Biological Cure" hype was DRI's communication plan. So in addition to Tom's rationalization laced, "I'm sorry," DRI need to be accountable for the hype they apparently hoped to manipulate. They need to return to honoring the struggle and apologize for trite formula hyping "The Biological Cure" to serve their immediate ends. That should happen without the ‘but we didn’t mean it they way we clearly said it’ we have seen. 

Let me be clear I am NOT saying encapsulation is a trite path to treatments. Hyping it as "The Biological Cure" is. "The Biological Cure" is not the same as saying it a very promising path to a possible cure that is soon to enter human trials. As they say on sesame Street, "One of these things is not like the other." One is cruel, the other is honest.

Living and breathing the science of type 1 isn't same as the emotions of living with or parenting a child with Type 1. DRI has shown the clear appreciation of the relationship the two. In an 2010 story, Rive Greenburg quotes DRI’s Dr. Ricordi saying, "I hate to over-promise because so many people have been disillusioned." So it is even more disheartening to see DRI choose hype and discredit Dr. Ricordi’s prior empathy for the community. 

Calling it "The Biological Cure" now completely discounts what that they have achieved buy putting it on the same footing as every other claim of a cure in 5 or 10 years. 

Hyping a cure in 5 years as is not honoring the struggle. A cure in five years is THE standing joke of false hope. We all know it and know why.  I suggest that by definition anything 5 years out is NOT a cure.  Five years is a lifetime with type 1. 

The idea becomes trite when put into the context of the tragic cases where 5 years is more than a person lifetime with type 1. Lets all hope those are few. Sadly we know none is not realistic. 

Am I encouraged by encapsulation? Sure. Have been for years and years. I expect encouraged by progress for years to come. I am encouraged by lots of stuff: better basal insulins, faster bolus insulin, better sets, glucose responsive insulins, innovation in CGM, better data management and mostly the peer to peer community. 

Am I very discouraged by the premeditated choice of hype over empathy by DRI? Absolutely. 

I suggest that tuning out their communications, specifically this campaign is not a trite response.  If this becomes a successful communication / funding campaign, who will be next to play the hyped cure card? When will we see copy cats? What will that serve? How does that honor the struggle for the next few years?

I decided to unsubscribe to DRI email as a step in turning down their choice of hype. I encourage other to do so too. I did so to send a small message that choosing hype over empathy is self selection out the community that honor other’s struggle without offering a trite formula.

I welcome an honest conversation about advancing encapsulation. This wasn’t it. Rewarding it as such only invites more hype. 

March 1, 2013

An AP by Any Other Name: Animas HHM

Artificial Pancreas is in the news again. This time the press release is from Animas. Yesterday the news was of an article in the New England Journal of Medicine.

Everyone's favorite bard said, "A Rose by any other name would smell as sweet." Sorry Bill,  I am beginning to think you were wrong.  I think the first steps of AP smell sweeter with different names.

My experience talking with other parents is that the term Artificial Pancreas is all wrapped up expectations of it doing what they really, really want. That is magically managing diabetes so well they don't need to worry about it. Being reasonably smart people, who are regularly frustrated by their child's diabetes varying in inexplicable ways, the discrepancies of life, liberty to eat and CGMs, they conclude that the present technology can't deliver that magic.

No kidding. It can't.

There is a whole bit on this in Forbes by David Kliff, Stretching The Truth About An Artificial Pancreas to which others and I replied.

Here is what matters to me as a dad of T1D kids - the NEJM article says the first steps of AP can lessen the number of hypos and keep kids in range longer. This is where the Animas release kicks in, remember the Animas press release? This is a story about the Animas press release.

In the Animas release they don't call it AP. Go ahead go read it. Search it for the word Artificial. It ain't there.

The story is about, "a first-generation closed loop insulin delivery system." I will give you that AFGCLIDS is no rose. They got that.  They call it HHM for Hypoglycemia-Hyperglycemia Minimizer. I would call it Hypblurglycimic Minimizing System. Then I would go for a whole Gilbert and Sullivan operetta - HMS Pancreas.  But I digress.

Like LGS (Low Glucose Suspend) the idea isn't to manage precisely to target. The goal is to help minimize bad sh*t from happening. Preventing bad sh*t, is a good thing.

Progress happens incrementally. Regulators are gonna be more comfortable regulating incrementally and payers will probably be more likely to pay if academia (see NEJM above) can show incrementally better outcomes and hopefully incremental savings in the reduction of expensive hospital visits.

Staying in range more means better long term outcomes. That may not be actually magic but it is a nice parlor trick.

Oh and my apologizes to centuries of British culture.