December 30, 2011

Nothing is Easy

Some of my T1D friends in the DOC (Diabetes Online Community) have said that they think it is more difficult to be the parent of a T1D child than to be diabetic. Maybe. I doubt it but I do think being a parent bring with it a different set of stresses.

As a parent our kid's lives are more dear to us than our own. I have yet to meet a parent who wouldn’t trade places and take the diabetes to free their kid of it if they could. That just the way parenting works. No news there.

I think one of the bigger stresses that parents face is in due course letting the diabetes be their kid’s. That in part means separating our worry about diabetes from our love of our kids and letting them get on with figuring out how to manage it, in their lives, as their diabetes.

A big part of this is trying, and we all will fail at this trying, to appreciate that nobody is a perfect diabetic and so when our kids diabetes varies our job is to not freak out or worse project judgment.

That ain’t as easy to do as it is to write. Here is one way to help, find other parents and commiserate. Vent your diabetes frustration with them not at your kids and when you do that venting no blaming the kids just vent your emotions.

Nothing about diabetes is easy. Not having it. Not being a parent. The truth is the medical professionals who teach diabetes care, teach us management techniques and processes. Few teach the emotional side of living with diabetes, that is tough on everyone. So find an outlet.

This is part of what what the Diabetes Online Community community is here for. It is part of why CDW or TuDiabetes are great online destinations. I hope it is part of why you read YDMV.

Consider Jonah’s comment on this post.

If you're going to ask about blood sugar readings and the kid's a teenager, be really careful about how you ask. From my parents, I'd probably hear that as a judgment part of the time, especially if it's a high or low that they ask about, and especially because they don't do my diabetes care.

Nothing is Easy.

December 26, 2011

#TwoBits - Sorry @CharlieKimball, Thanks @MrMikeLawson

Here's two quick bits. I spoke at a parents support group last week. There were two boys playing quietly in the back. I gave them each a Charlie Kimball car and showed them this:

Needless to say they enthusiastically reenacted the event. The moms and dads were concerned about the noise. I couldn't have been happier. Sorry Charlie, your die cast effigies  got trashed in the service of making small boys happy.

How to eat dinner with a diabetic:

Good stuff. My advice; Play with your toys and eat with enthusiasm. 

December 15, 2011

Prom King!

So I'm sitting here heavily marinated in caffein studying for a bio exam in my masters program. I am particularly focused improving my knowledge of the endocrine system of all things. You would think that a guy involved with the diabetes online community would do at least OK in the endo section.

You would be wrong. It seems my interest in the field and what is on the test diverge. Significantly.

So, I'm sitting here sucking back coffee trying to memorize what gland, makes what hormone, to do what, to some fictitious patent named Sam, when I get a Facebook notification: I was appointed Prom King by one of my classmates. Here is the proof:

I found it hysterical. You may ask how is that possible? Simple. Bribery. I make printable documents of our online lectures to study and I share them with who ever may want a copy.  Now if I can only bribe my way into King of DProm....

... and remember all this non D endo. stuff for tomorrows exam. 

Schooling to Think Like a Pancreas - Free

Gary Scheiner, CDE, author of Think Like a Pancreas and all around good guy is offering his Type 1 University online classes FREE in January. I think this is a GREAT deal for anyone who is looking to kick their diabetes management up a notch, particularly if doing so is part of resolution making for the New Year.

Classes on the schedule for January are:
- Mastering Pump Therapy
- Blood Glucose Control During Sports & Exercise
- Advanced Carb Counting
- Getting the Most from Your Continuous Glucose Monitor
- Weight Loss for Insulin Users
- Hypoglycemia Prevention & Management
- Strike the Spike: After-Meal Glucose Control
- Managing Pregnancy with Type-1 Diabetes
Practical Pramlintide – Making Effective Use of Symlin

Curious but not ready to commit to a full one hour class?

Think Pizza.

Gary has a short class on pizza with type 1. It runs about 10 minutes. Maybe start there and if that seems effective take another class or two in January for free.

Here is a little promo for the Pizza class:

For more visit

Full disclosure: I shot and edited these, and another, short ads for Gary. There were no fees involved but Gary did buy lunch.

December 13, 2011

@JDRF New Research #TwoBits

JDRF announced two research initiatives today. The first is a study of seeking to Reduce Cardiovascular Risk in Adults with Type 1 Diabetes. From the release:

New York, NY, December  13, 2011-JDRF-funded researchers have begun enrolling adult patients with type 1 diabetes (T1D) in the REMOVAL study, to test whether metformin-a drug commonly used to treat type 2 diabetes-could help prevent or reduce the risk of cardiovascular complications in people with T1D. 
The REMOVAL study (Reducing with MetfOrmin Vascular Adverse Lesions in T1D) is a multi-center, international trial that will study 500 patients with T1D aged 40 or older, a patient group known to be at higher risk for cardiovascular disease, one of the leading causes of death associated with diabetes. A study from the United Kingdom has shown that people with T1D aged over 40 are at much higher risk for cardiovascular disease, including heart attack and stroke.
The second is in conjunction with the firm ViaCyte and looks at Encapsulated Beta Cell Replacement Therapy for Diabetes. (This look like an IDDP but my reading of the release is not clear. I will see if I can get confirmation.) Yes it is in fact an IDDP* From the Release:
Existing cell therapies such as islet and pancreas transplantation have the potential to cure T1D by restoring normal islet function and normalizing blood glucose levels in people with T1D. Because the number of cadaveric human donors for pancreatic islets is limited, ViaCyte’s program will provide a replenishable supply of functional insulin-producing cells. Furthermore, packaging the cells in a device (“encapsulation”) creates a physical barrier around the cells and has the potential to protect the transplanted cells from immune rejection, and may eliminate the need for chronic immunosuppressive drugs. The ultimate goal of this partnership is to help patients with T1D restore their ability to regulate blood glucose, thereby reducing or eliminating the need for constant self-management and administration of insulin.
The three-year series of preclinical studies being co-funded by JDRF will help ViaCyte prepare the information necessary to apply for regulatory approvals to study the system for safety and efficacy in people with T1D.
For more see JDRF's New Room online.

Why these matter:

Most folks living with type 1 are adults. Our first goal as parents of T1D kids is to have the grow to be T1D adults pursuing their lives interest. I have heard the figure tossed around that 85% of T1Ds are adults, seems about right. So it only makes sense to study how to keep T1D adults health.

Cure can mean a lot of different things to different people. To me, in the broadest sense it is to return the biological production of insulin. That may or may not include turing off the autoimmune response that killed off the beta cells in the first place and from the little (very little) I know of how immunity works that is no small think. Encapsulation get around that problem with magic star tech like shields that protect the Starship Insulin-producing-cell from attack by evil T cells. ... or something like that. Getting beta cells is no easy matter either. This project addresses both the shield and production of beta cells form stem cells. May the Force be with you, wait wrong sci-fi flick but you get the point and the point is Live Long and Prosper.

*For some background on IDDP you can see earlier post in YDMV.

iBGStar Blood Glucose Meter for iPhone Now Approved in U.S.

From the News Wire:
iBGStar blood glucometer attachment for the iPhone, developed by AgaMatrix and commercialized by Sanofi, has received FDA approval.  The iBGStar uses the iPhone as a beautiful visualization tool to keep track of glucose readings, food and insulin intake, and exercise.
Sanofi Press Release

Prior YDMV posts on iBGStar:

December 12, 2011

YDMV Nominated at WEGO

Award: Advocate for Another (  
Reason: Bennet is a father of two type 1 diabetics and has been an exceptionally active member of the DOC since he started blogging back in 2007. He's got advocacy credentials - fundraising for the ADA and JDRF, attending social media summits for Roche and Medtronic, meeting with politicians on a state and federal level - but more than that he offers the perspective of a dad trying to help his kids become well rounded people for whom diabetes is only a small part of their lives. Despite all his work, he consistently flies under the radar - which I'm sure is by design. He never conflates his experience as a caregiver with that of his Type 1 children. His humor, passion and intelligence as - for both his family and the DOC at large - part of the invisible support structure that provides individuals with a safe space to learn and grow.

Congrats! We hope you’ll join in the excitement and take a moment to nominate your own favorite Health Activists for any of the 10 Awards and share the program with your online community.

Learn more:
Check out all the awards (and nominate others!)
Download our quick sharing templates:
Want to help pick the winners? Apply to be part of our Judging Panel:

December 9, 2011

Merry Christmas and Happy Campers in the New Year

Delaney loves Setebaid. Setebaid, diabetes spelled backwards, is her diabetes camp. There is no longer Abby Normal. She is loud, crazy, loud happy, loud, one of the crowd, loud, normal.
Held in the farm country of central Pennsylvania it is about a two hour drive from home. On the way out she is excited and has been know to make “are we there yet?” comments.  On the trip home the first thirty minutes is crazy excited and happily recounts camp adventures, typically involving much riotous and loud carrying ons. She then falls asleep, exhausted from the week of being a normal kid with other normal kids, all of whom just happen to also be type 1.
Part of camp stays with her year around. More than just texting other campers, it pop up in conversations as a touch stone. "At camp my friends and I ...." Some of those conversations now are about wanting to be a counselor in the not too distant future when she is old enough to be one. Because their influence lasts, diabetes camps matters.
Camp has been a Christmas present from the grandparents some years. If you know a grandparent of type 1 who is looking for an outside the box holiday gift maybe a week at camp fits the bill. If not and money is tight many camps also have financial assistance. 
Camps fill up. Now is the time to think about next summer. 
If diabetes camp isn’t right for the type 1 child in your life, maybe Children With Diabetes Friends for Life convention is. Either way, or both, finding a place to be the normal one is a wonderful experiance for a kid with diabetes. 
I would love to hear about your diabetes camp and why it matters. Post a comment here, link your camp blog post or share the URL of your camp. Diabetes camps are wonderful. Now as the air gets cold, it is a great time start thinking about camp next summer and to share their glory.
Need some help finding a camp near you? Here’s a few links. I welcome more such links as comments. 

The Diabetes Education and Camping Association
Or on Facebook at 
Children With Diabetes Camp Page

December 6, 2011

Love Ya / Mean It Robin

Joy is a wonderful thing. Mostly it is a choice. First to choose to be joyful and second then, maybe, to choose to share it. 
It may even be more than choosing, perhaps joy is something one creates. I love joyful creative people. Nobody embodies that more than the woman who coined a phrase I have joyfully cribbed - Love Ya / Mean It.
We are not talking blind love here, Love Ya / Mean It means something far more significant. LY/MI is loving past foibles and idiosyncrasies. Loving not in spite of them. It is more that the things that our loved ones do to make us crazy are the very things that make them the unique individuals we love. 
It is a spectacular thing to simply love people for who they are. I try to open my heart that way. For me it is a process that requires a conscious effort. For years I would watch Robin and marvel that she was able to do it with an inborn grace. 
I got to know Robin through Disney fan sites on the internet. She wrote loving, hysterical stories of trips to Disney, warts and all. I love those stories and I love Robin.

I made some pins once with LY/MI on them. The plan was to sell them and raise a few bucks to help her have another Disney vacation, so she would write stories and we could all share in the joy laugh. At the time Robin was delivering Pizzas in frozen Maine to make ends meet and maybe save a little for a trip. When I told her the plan she simply said that she wanted them money to go to diabetes care. Delaney had just been diagnosed and she felt that was more important. So Robin.
Robin left this world yesterday. I am confident that she left it a better place for her care, her humor, and her ability to find and share joy. I pray for comfort to all the hearts she touched that will be broken by her passing, her magically blended family, her friends, maybe even the odd grasshopper that terrified her. We are all better for how Robin touched our lives.
If you would like a look into the joy Robin found and shared and maybe get a real feel for LY/MI some of her stories are on BadShoe. (Some of the links out and photos no longer work but Robin's Magic is still just as strong as ever.) In the beginning of one of her 2004 collection of stories she wrote, “Because that is all life really is, a series of great adventures.”
Thanks again for sharing your adventures Robin, 

December 4, 2011

Wonka with Type 1

Connor played Willy Wonka this weekend in the school fall play. We are still trying to figure out how many carbs are in a chocolate river. One of the first consumes where I didn't see the pump cording. What really matters is that he is focused on what he loves, performing. 

Of the ER, the Web and Perfection

A very dear friend is embroiled is some online nastiness over her blog, diabetes and a trip to the ER. It illustrates one of the sad things about reaching out and sharing as an e-patient, some folks thrive on being superior, and thrive on negativity.
I don’t know what it is that motivates them. I don’t much care. I do know that there is a difference between pettiness and being constructive. I know that an am fiercely loyal to my friends and I make no claim of being un-biased in my regard for them. 
I have twice been to the ER with a child experiencing serious abdominal pain. The kid in question being type 1. As a result of that insulin production inability, there was extensive conversation between the physician and us about diabetes care. This included, at the doctor’s request, detailed information about A1C. I don’t know how it was relevant but apparently it was. I therefor presume that if I had not had those number handy they would have drawn blood to calculate them since they ran a bunch of other far more costly, timely and intrusive test.   
One of the very many mind tricks diabetes does is inventing new variations on the game of This is Your Fault. Diabetes is diabolically adept at this. I haven’t met a person or parent living with type 1 who hasn’t been sucked into the vortex of this game. 
When you are in the ER and someone in scrubs asks about control, diabetes takes the game to a whole other level. It makes a great NFL two minute drill look lethargic. Diabetes covers the whole field in two second. 
So when the Doc asked about A1C, and even though I knew the numbers were good, had been good for a long time and I know diabetes rat bastard mind games, I went straight to the guilt over not being a better parent, as measured by A1C. I felt my shortcomings with diabetes, particularly my willingness to the let the teen self manage put him in the ER. 
In those seconds, diabetes covered all 100 yards, scored a touch down, two point conversion, took a penalty for excessive celebration and even while winning big, kicked onside, recovered for another TD before the clock ran out. It brought game and crushed. The game was simple, it was my failure to be a perfect diabetes parent that put my kid in the ER in excruciating pain. 
On the second trip, when they did take out his appendix, we refused to let the hospital manage his diabetes. Specifically: no change in insulin, no change in delivery method, no steroids, no kidding. The folks in the pressed lab coats with embroidered names were not happy and I had to sign a bunch of papers as a result of their displeasure. 
I am leaving out details but feel free to post comments and criticize based on your assumptions and partial knowledge of the situation. I will read them and may respond just don’t expect me to care too much about your presumptions. 
The point here is diabetes plays the Perfect Number Drill as part of the This is Your Fault game. It defines perfect quantifiably and is often supported by a medical industrial process that behaves as if it believes in a numeric definition of perfection is actually and perfunctorily obtainable. 
It isn’t and it isn’t what the goal is anyway.
The goal of being diabetic is to do what one can, to be someone who finds and shares motivation to keep doing what they can. They know that perfect numbers are not possible even while they get sucked into the Two Second Drill. Sure diabetics may get sucked into diabetes mind games. Hopefully they know how to come out of it with only a few dozen points run up in the process. The are human, they feel the emotions but they bounce back and in part they do that by sharing. They know that others are there for them and that in turn they will be there for others. 
The perfect diabetic would be one who shares imperfections as the reality of diabetes while being focused on the joy of life outside the diabetes game. Perfect doesn’t exist but there are some who play the game very admirably. 
Then there are arm chair quarterbacks. They have no skin in the game but they think they have something to say, that's fine, but why the {obscenities deleted} listen to them? 

PS: to the DOC and Kerri in particular. Love Ya / Mean It

December 1, 2011

FDA Guidelines on AP

Thanks Scott Strumello for the email tip that the FDA has issued Guideline for Artificial Pancreas. I will be giving them a good reading and if you are so inclined here are some links:

Reuters: FDA: Diabetes device plan may help patients faster

FDA: Draft Guidance for Industry and Food and Drug Administration Staff - The Content of Investigational Device Exemption (IDE) and Premarket Applications for Artificial Pancreas Device Systems

FDA: Press Release

Three great Guys in #Two Bits

Time for two bits I liked from around the DOC. Both are about great guys and one is written by a great guy making three great guys in two bits.

First up Scott Johnson tells the story of Medtronic's Lane Desborough. Like Scott I met Lane at the Medtronic Diabetes Advocates Forum and like Scott I was very impressed. Scott does a spectacular job of explaining why.

Today's second bit is me being a few days late: Novo Nordisk has extended sponsorship of Charlie Kimball's ride in Indy Car No.83. I am looking forward to seeing Charlie in the New 2012 Indy Car. Hopefully he will share a little about as he get some time in it.

Here is to Lane, Scott & Charlie. 

November 23, 2011

Medtronic iPro®2 CGM Approved by FDA

From the News Wire: 

MINNEAPOLIS – November 22, 2011 – Medtronic, Inc. (NYSE:MDT) today announced the Food and Drug Administration (FDA) approval of iPro®2, a next generation Professional continuous glucose monitoring (CGM) system and the latest in a series of recent diabetes technology approvals and innovations from the company. iPro2 simplifies Professional CGM and enables healthcare providers to obtain a more complete picture of glucose control for the patients they treat.  Professional CGM is used by healthcare providers to reveal low (hypoglycemia) and high (hyperglycemia) glucose excursions that can lead to the dangerous health complications of diabetes.  These excursions often go unnoticed with traditional A1C tests and standard glucose meter measurements.

November 22, 2011

Glooko, the Grail and Audrey Hepburn

Glooko was kind enough to give me a cable to review, no string attached as it were. I’lI get to that review in the upcoming weeks because this is more an editorial Grail Quest than review.
I have been been on this search for the diabetes management version of the Holy Grail for a while.  Back in 2007 I wrote “my quests is for a diabetes management software application that is worth using. I would like the cure and the Holy Grail while I am at it too - they seem just about as likely.”
The thing about Grails is that your definition of it tends to grow while you are looking for it. Data standards became part of my Grail Quest because I want all the data, that comes from different machines, to play nice together in the diabetes sandbox. I wrote about this back a then too but what I have forgotten in my quest is that a UN translator is almost as good as data standards. If you don’t think a UN translator can be sexy, go watch Audrey Hepburn in Charade. (I am sure it will be more interesting than the rest of this post.) 
Glooko may be such a UN translator, if not as classically lovely as Ms. Hepbrun. It looks like a step in the direction from a different nations of the diabetes globe talking together perspective 
It is also a shift in the center of the diabetes data management universe. Glooko is a cable that connects a meter to an iPhone. I think data in your smart phone instead of your computer is a move closer to where folks with diabetes live their lives. 
You maybe thinking, where have I seen this before? Probably the presentation of introducing the iPhone 3 back in 2009.  Apple had J&J dummy up an cable and and app for the big unveiling. It never saw the light of day - well maybe until now.

Glooko is a cable that can connect meters, from a variety of manufacturers, to an iPhone, iPod, or iPad. The application does the translation of the data from Bayer, Abbott or OneTouch’s data format and fill in the log book. That mix of brands is part of the path to the grail. To me it is significant that Glooko plays the roll of Audrey Hepburn and translates data from different meters into one log. You can email that log right out of the device. 
That is not the only step towards the chalice. I see shifting from computer based applications to a mobile device as moving data collection, and hopefully use, closer to people with diabetes' lives. A more mobile logbook and translations of data are steps towards the grail even if they are not the goblet itself. 
Back in my UN inspired post I suggested that the makers of meters would come out ahead if they joined in a common app and data development effort. I wrote, some what flippantly,Just think, all the manufacturers could all reduce the cost of R&D spent on the machine that listens to the Machine that goes PING if they didn’t each have to invent a new language in the process. Hey guys in expensive suits! Lower expenses means more profits and bigger bonuses for the guys in expensive suits or they could then invest that saved R&D money into better design, clearer user interfaces and compete on usability! Yeah I think it would go to bonuses too.”
The logbook is Glooko first step. They say they want to make better tools for diabetes management. Time will tell what that means. More meters and more mobile devices showing up at the UN, probably. More functionality than a basic log book, maybe - but that is an FDA regulation issue and why we all should care about mobile apps. I would love to see devices other than meters talk to the app, not that I am directly lobbying Glooko or anything. OK maybe I am. 
I still define the grail like I did back in 2007 as software that would help families adapt to varying diabetes by:
  • Tracking for reporting all the data users create in their daily diabetes care without creating a lot more sets of family tasks. We have diabetes – that has enough tasks as it is.
  • All the BG data, including CGM info. All the basal data. All the carbs entered into the pump to calculate all the bolus data. Any user defined flags on those carbs like pizza. User defined variables that could be things like heavy exercise, set pulled off, ketones, freaky weather, stress, menstrual cycle, weekday, weekend and what ever else people dream up. The key here is being user definable.
  • Then we need reporting ability and the ability to include or exclude data based on those use defined fields. Build reports that average the midnight to 6 am BD data from meters or CGM for nights following a day with hard exercise. There you have info for tailoring basals for a post activity dip in BG.
  • How about sorting the data for a school girl’s weekdays, excluding days with PE class to build a normal school day profile and one only for PE days?
To that I would add that grail should ultimately connect to devices wirelessly and store information in a cloud accessible with any modern browser. Which is fairly sophisticated and outside the mindset of the FDA. -  All of which is what makes it a Grail. 

November 17, 2011

Tandem t:slim™ FDA Approval

From the News Wire:

Tandem Diabetes Care Announces FDA Clearance of the t:slim™ Insulin Delivery System
Smallest Insulin Pump System and First-Ever with a Touch ScreenSummary:    Tandem Diabetes Care, Inc. today announced that the U.S. Food and Drug Administration has granted the Company clearance to market the t:slim™ Insulin Delivery System.

SAN DIEGO,  November 16, 2011TandemDiabetes Care, Inc. today announced that the U.S. Food and Drug Administration (FDA) has granted the Company clearance to market the t:slim™ Insulin Delivery System (t:slim).  This new full-featured pump is the first-ever with a color touch screen, and is the smallest insulin pump system currently available. The t:slim is one of the first insulin pumps to be cleared under the FDA’s new Infusion Pump Improvement Initiative.
“With the clearance of t:slim, Tandem Diabetes Care has an opportunity to set a new standard in insulin infusion therapy,” said Kim Blickenstaff, president and CEO, Tandem Diabetes Care. “In creating t:slim, we spoke with more than 4,000 healthcare professionals and people with diabetes, and the clear message we heard was, ‘make it cool and make it uncomplicated to use.  Give us access to the most advanced features without extra effort.’  The t:slim’s touch screen interface has been proven in extensive user studies to be easy to learn and to use by new and experienced pump users alike.” More

November 16, 2011

Of Stem Cell and Cures:

Diabetes and the stem cell promise 
The search for a cure, or even a less-complicated treatment, is still on a long road to its goal. 
By Eryn Brown, Los Angeles Times
November 7, 2011 
Ever since scientists started talking about the medical potential of embryonic stem cells, curing Type 1 diabetes has been one of the dearest dreams.
When researchers announced in 1998 that they had derived stem cells from human embryos, their landmark report flagged juvenile-onset diabetes as a disease that might be treated by stem cell transplants. 
In the run-up to the 2004 vote on California's Proposition 71, diabetes was repeatedly mentioned as a target by scientists campaigning to form a state-backed stem cell agency. 
Years later, the promise remains. But success has been elusive. MORE
Spoiler alert: The last line of this article is the the most telling and why better treatments matter as well as cure research: "Next century, when you look back at it, two decades won't seem like much. But for those affected right now, every month is too long.",0,5759144.story

November 10, 2011

Legislators push for faster FDA device review

MASSDEVICE ON CALL — Minnesota legislators penned a letter to FDA head Margaret Hamburg pushing for a faster and simpler review process for medical devices.Sens. Amy Klobuchar (D) and Al Franken (D) were joined by Reps. Erik Paulsen (R), Betty McCollumn (D), John Kline (R) and Michelle Bachman (R) in raising concerns over "increased review times, inconsistent expectations, and poor communication from the FDA."

November 9, 2011

CGM Sensor Trials

Most folks in the diabetes online community recognize a need for better CGM sensors. Part of getting them to market is testing them in clinical trials. Medtronic has news today about a CGM trial:
MINNEAPOLIS – Nov. 9, 2011 – Medtronic, Inc. (NYSE: MDT) today announced a new United States investigational device exemption study to evaluate the accuracy of six-day use in adults with diabetes of its Enlite™ Sensor, the company’s latest innovation in continuous glucose monitoring (CGM) technology for people with diabetes. The study will evaluate Enlite, a glucose sensor for CGM designed to offer improved hypoglycemic detection and comfort compared to current CGM sensors. CGM provides a more complete picture of glucose control because it can reveal high and low glucose levels that periodic fingerstick testing might miss.
The first two patients in the study were enrolled at Rainier Clinical Research Center in Seattle, Wash., and at AMCR Institute in San Diego, Calif., by the sites’ principal investigators (PI), Ronald Brazg, M.D., and Timothy Bailey, M.D., respectively. 
Full press release info here 
Trials may or may not be your thing. Full consideration is needed for joining any study, but if you are interested in participating see: 

This is not the only CGM trial of interest.  For more on other CGM studies is also available at

November 7, 2011

One in Twenty / Twenty to One

Another diabetes dad sent an email asking about the JDRF New York Times Ad. Specifically if anyone knew the source of the 1:20 number it cites. I replied that I had traded emails with Aaron Kowalski and Jeffery Brewer at JDRF about the ad. 

Of the people I know in the diabetes community, and I know a lot of y'all there is nobody among us who is more passionate about with people with T1D living long, happy, well managed lives than Aaron and Jeffery, certainly including my craziness. 
Hypoglycemia can kill. Should we be less motivated to address hypos if the life time mortality risk is 1:40, 1:60 1:100? Shouldn't be just be motivated to make less of a risk, until it is not a factor at all?

The data for the ad is the based on various articles by Philip E. Cryer, MD. Significant in that is a piece in the American Journal of Medicine, Death during Intensive Glycemic Therapy of Diabetes: Mechanisms and Implications. 
That article in turn references:
The Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications Study Research Group. Long-term effect of diabetes and its treatment on cognitive function. N Engl J Med. 2007;356:1842–1852
Feltbower RG, Bodansky HJ, Patterson CC, et al. Acute complications and drug misuse are important causes of death for children and young adults with type 1 diabetes. Diabetes Care. 2008;31:922–926 -
Skrivarhaug T, Bangstad H-J, Stene LC, Sandvik L, Hanssen KF, Joner G. Long-term mortality in a nationwide cohort of childhood-onset type 1 diabetic patients in Norway. Diabetologia. 2006;49:298–305  -
All of which I have printed and am in the process of re-re-reading and formulating thoughts on. Here is a readers digest of where I am so far.

The ad is not for the diabetes community. Period.

In the diabetes community we know that insulin has risk and that those risk involve the possibility of death from excessive insulin. I often hear those who live with diabetes and "Get It" wish that the general population understood type 1 better. The non-diabetes world doesn't have a frame of reference for diabetes management risks and this ad puts that into stark terms. 
Mark Twain has a famous comments on numbers, "Figures often beguile me," he wrote, "particularly when I have the arranging of them myself; in which case the remark attributed to Disraeli would often apply with justice and force: 'There are three kinds of lies: lies, damned lies, and statistics.'" There is little reason to think Disraeli actually said that, but there is history, humor and Mark Twain. Think: The Daily Show. 
The effect of the ad statistic on some people with, and more significantly maybe some parents of T1D kids, is an increase in fear. I am not sure that is productive. (Please see ad is not for the diabetes community above.) I know a young woman who was so scared by dead in bed she disconnected her pump every night. Her parents were at a total loss as to why her night time BGs were so bad. It may not be a surprise folks who "Get It" that her A1C were through the roof. This was before blue candles and 1:20 ads in the paper. Fear is real. 

Hunter S Thompson wites of "The Fear" in Fear and Loathing in Las Vegas. "The Fear" in my mind is a character in the book. A book I found hysterical. I don't find diabetes fear so amusing. It can lead to actions, as was the case with the young woman who was disconnecting, that are dangerous. 
Many in the Diabetes On-line Community write about the phycological aspects of diabetes care.  Many say the mind game is as difficult as physiological management effort. In that context feeding the fear is a bad thing. Also turning those people (PWDs) to thinking about the statistics and motivating them into discussions about the numbers instead of discussions about doing stuff to move the ball forward on solutions is contrary to the goal of better living with T1D. 
All that said I have issues with simplifying the underlying papers to 1 in 20. Dr. Cryer writes about T2D as much or more than about T1D in Death during Intensive Glycemic Therapy of Diabetes: Mechanisms and Implications. He cites ACCORD, ADVANCE and VADT studies all of which appear to be T2D studies. In T2D there may be means of managing health other than insulin. In ACCORD the goal was A1C under 6% and the trial was stopped due to harm to T2D patients of that aggressive goal.

It also appears that the good Dr. Cryer's article was a response to another in the same journal issue that seemed to say that hypoglycemia was a comorbidity of other causes of death, seemingly downplaying hypos. So maybe he was saying, Hey you idiots hypos are dangerous in and of themselves... well he probably wouldn't say idiots, in fact I don't see that word used anyplace in his article. Maybe Mark Twain or Disraeli who used the "I" word. 
Cryer writes "Older estimates were that 2%-4% of patients with type 1 diabetes die from hypoglycemia. [16], [17] and [18] More recent estimates are that 6%,[19] 7%,[20] or 10%[21] of those with type 1 diabetes die from hypoglycemia.
Notes 19, 20 and 21 are the ones I shared above. 20 and 21 are studies form the UK and Norway, started in 1978 and 1973 respectively. Both are T1D studies. I have concerns that studies starting then will have significant data from pre DCCT, pre Lantus and pre Pump care regimes. Who is on NPH?
One can argue that pre DCCT was typically less aggressive care and that means less hypos so these may understate the risk. - Or -  One can argue that the lack of stable basal insulin, pumps modern meters ect. made hypos more frequent due more peaky nature of the tools available. I don't know. I suggest there is grounds to wonder if the fruits of the studies is all apples. Maybe there are some oranges involved. 
We hold these truths to be self evident: the risk of fatal hypos is a lot higher if one takes insulin than if one does not. Even so that is not the only source of stress in a T1D household. 
1:20 is not an annual rate but a life time projection. Looking at the reciprocal, when they die, 19 of 20 people with T1D will not die of hypos related issues. That is a lot better than the 100% that died of DKA in pre insulin days. 

Diabetes care is about balance.

That and I hope that in my kids lives they each have 20 non-diabeteic people people in their 'get' fottaly tine.

To me that 20 to 1 is more important than 1 in 20.

I maybe wrong, I often am.

A Request from Spain

My friend Mike from sent this request and I am happy join in and to pass it on.

I appreciate their are many things taking place regards to Diabetes this month, but I hope that this project will capture your imagination.

On November 11th (11.11.11), across the planet, documentary filmmakers, students, and other inspired citizens will record the human experience over a 24-hour period and contribute their voice to the second annual global day of media creation called One Day on Earth. Together, we will create a shared archive and a film.

Imagine being able to capture the world on the same day, each giving their unique perspective on Diabetes around the globe!  Anything goes! It just has to have something related to Diabetes. Please share and pass on to friends, family and anyone else you may know.

I would like to invite everyone from the DOC both online and offline to take part if possible by taking a Diabetes related image on 11.11.11 and submit them either via a Flickr group, via twitter with the #diabetes111111 hashtag or directly on my website site.

1.  Grab your camera – take your Photo/Video – 11.11.11
2.  Submit Photo via Flickr, Twitter or this website.
3.  Enjoy the photos as they appear on this site, twitter and flickr from Friday the 11th November.

Please join me and share! -




November 3, 2011

Mice Again

Molecule That Prevents Type 1 Diabetes in Mice Discovered; Has Similar Effect On Human Cells
ScienceDaily (Nov. 1, 2011) — Researchers at the University of Colorado School of Medicine have found a specific molecule that can prevent the development of type 1 diabetes in mice and has a similar effect on human cells from diabetic patients.


November 2, 2011

JDRF & Helmsley Trust Collaboration

From the News Wire:
JDRF and the Helmsley Charitable Trust Form a Collaboration to Accelerate Innovative Type 1 Diabetes Research and Development:
NEW YORKNov. 2, 2011 /PRNewswire-USNewswire/ -- JDRF and The Leona M. and Harry B. Helmsley Charitable Trust, two of the largest non-government funders of type 1 diabetes (T1D) programs, announced today that they have formalized a collaboration that will foster a new level of cooperation between the organizations. The goal of the collaboration is to accelerate the pace of research and development to deliver better treatments, devices, and diagnostics for improving the lives of people with T1D. The first two co-funded grants as part of the collaboration were also announced today. More

This is good news. I know some great dads of kids with diabetes at both places. They share the passion for better lives for all kids living with diabetes that maybe unique to parents. Both organizations are substantial investors in researches to create better lives. By comparing notes and goals is more than great way to avoid re-inventing the wheel, it is a powerful way align interests.

Thanks to all the dads, moms, people with diabetes, their friends and families that are doing what they can to help innovate type 1 diabetes (T1D) care.