December 16, 2010

Insulin Pumps/Medical Devices and Airport Security

Passing this on for travelers with pumps:

From :

Insulin Pumps/Medical Devices and Airport Security

We have conducted official testing on the effects of the new full body scanners at airports with Medtronic medical devices. Since the new scanners include X-ray, remove your insulin pump, Guardian monitor, sensor, transmitter, meter and remote (refer to the User Safety section of your device user guide) before going through the scanner.

If you do not wish to remove your Medtronic devices, ask TSA personnel that your medical devices cannot go through the scanner and alternative (pat-down) screening is needed.

As a reminder, it is safe to go through the airport metal detectors with your Medtronic devices.
Taking of CGM Transmitter sounds a lot easier than I think it will be in practice. Good luck travelers.

Editors note:
Sara - Thanks for the comment. I called Dexcom. They don't have a similar press release / statement. They have not done testing. They have not had negative comments from users or staff that have traveled wearing a Dexcom sensor. They pointed out that taking the transmitter off sensor has a fairly good chance of dislodging the sensor wire - YDMV.

Dear Kerri - We used a pumpkin

 Kerri asks,  "Who learned injections with an orange?" We did and we also used a pumpkin. Here's our first dx story written ages ago for the Thank Shoe Section of

Connor was just starting to learn the saxophone. His first public performance was in a school talent show.  I think he played Peter Gun. We went out to dinner, something Connor typically enjoys. 

He had a soda or two, used the rest room and felt crummy. He didn't eat. We figured it was stage fright. The next day he moped around drinking OJ and complaining he didn't feel very well.  So Mrs BadShoe took him to the doctor. They called for some blood work so the next day I took him to Quest for a blood letting first thing. 

They tried and tried to get blood and it took both arm to get what they needed. It was early on a school day but Connor didn't feel up to school. So we put on the Star Wars trilogy (the real originals with Harrison Ford not the stupid prequel movies.) Connor was semi conscious, drinking juice and going to the bathroom. 

I figured that if the doc sent us to Quest it was no big deal and we could wait for the results. Mrs. BadShoe and the doctor's office started feeling otherwise. Finally that afternoon she decided to take Connor to the local hospital ER. His blood sugar was off the chart. He was borderline conscious in DKA. He was shipped out to Children's Hospital of Philadelphia as soon as they could get transport.

So not a whole lot of hours after his first ever saxophone performance Connor was diagnosed diabetic. So it turns out it wasn't nerves about performing that had him feeling funny before hand.

Connor (Mom & Dad) needed some help learning what to do. Melissa was our nurse / trainer when Connor was at CHOP. She was very cool teaching us how to get started with Connor's treatment. She was more than happy to turn over the needle to Kim & I so we could stick it to Connor. She also was very good about helping him learn about what was going on. 
As you can see below, Melissa is the type who enjoys her work. 

Particularly when it is sticking needles into loud children like Connor.

It was a rough time at first. Connor was hooked up to this machine as they put fluids and insulin into him. He later came to mock it, and if you look, you'll see he stuck the pumpkin.

Melissa was very good about helping us not only the mechanics of what we needed to do but also how to go about it with a smile. As Connor picked up his louder than life sense of humor returned and found a happy audience in her. She was serious but not solemn and that was a big help.

Connor awarded her a BadShoe Pin and she went straight to looking at her shoes. Lots of laughs Melissa that is another part of the family web empire and your shoes seemed like you could walk on them all day - you pass.

Thanks Melissa. Melissa is part of the Children's Hospital of Philadelphia Empire. The scope of this operation would put Darth Vader and Emperor Zurg both to same. It is everywhere it is everywhere. I also seems that every where CHOP is it is an outstanding operation.

December 13, 2010

Robin Hood and Diabetes Meter Accuracy

WARRING:  This may be boring. In fact it may only be the first a series of boring posts. Sorry about that. I’ll do what I can to keep it moving hence all the Robin hood references. I am going to try put it into a larger context of care quality... aka happiness in Sherwood. 

That said parts of this are gonna be as dry as the deserts of the crusades from which Robin returns. Feel free to skip over and see what Kerri is writing about I’m sure it will be more interesting. Come to think of it - I may join you.

Accuracy in the context of quality care to me means the measurements needed to obtain great glucose control - kinda wordy - happiness in Sherwood sounds better. It means testing enough to manage blood sugar levels. It means those test are a good measure of the actual blood glucose. It means there has been education on effectively using the blood data. It means actually acting from that data and education. It means there is good food nutrition information, regular activity and insulin and insulin delivery that is predictable, stable and reliable even if your diabetes is unpredictable, unstable and unreliable.

In short happiness in Sherwood is a myth.

Diabetes care is complex as this bit points out:

The first step in accuracy is to test often enough to get actionable numbers and then to (and this is the really sophisticated part) act on them.  Lee Dubois speaks to the challenges of getting enough strips via medicaid. Even more drastic Jeff Hitchcock points to a Washington State study that suggests that type 1 kids don't need more than one strip a day. 

WilI and Jeff draw attention to the simple fact that access to strips is a critical part of accurately managing blood glucose.  I don’t care if those strips are as spot on as a lab reference Yellow Springs Instrument if there isn’t sufficient number to do the testing needed manage diabetes there can’t be quality care. Robin Hood needs arrows for happiness in Sherwood.

Once a patient has enough strips they need to get results from the meter that contribute to quality care. Many of us in the diabetes world talk about meter accuracy. Those conversations are frequently based on often repeated assertions that amount to whipper down the lane lack instead of being based on a solid underpinning. Accuracy is enough of an issue that the meter companies produce white papers to clarify their accuracy positions. I have read a lot of these. Typically 2 - 4 pages with a few charts and graphs and a bunch of footnotes. Sadly they are typically not the solid underpinning we can base informed conversation on. My view is the papers exist to make users feel comfortable that a given meter is accurate without any actual context. I may not go as far as to say they are Prince John’s minstrels singing his praise but it is a very tempting bit of thematic puffery to toss in - so there it is.

I have however found some good pieces. Thanks Google Scholar. One of the best that I have read is by Barry H. Ginsberg, M.D., Ph.D. (M.D. and Ph.D - that is like Doctor Squared!) Factors Affecting Blood Glucose Monitoring: Sources of Errors in Measurement is a nice little ten page run through the forest of meter accuracy issues. If you are interested in the topic this is a great place to start - unless you are looking for some kind of a score card of which meter is best. It is a great primmer on meter accuracy, it is not a betting form for the big archery competition Prince John is sponsoring. (Hint: Double down on Mysterious Stranger!)

Think of your meter as an archer at that competition. If it shoots a bunch of arrows at the target that are evenly distributed up down left and right, on average it is on mark but not precise.  Said archer it isn’t getting any attention from Maid Marion.

If all the arrows hit a spot all clumped together in the lower right side of the target - well it is precise but not accurate and still not getting any love from yonder fair noble woman.

When Robin Hood... err.. Mysterious Stranger, steps up, his arrows are all smack in the bulls eye, accurate, precise and for show, this is Marion's favor we were talking about - showing off matters, splitting the prior arrow right down the middle.

We want our meters to be Robin Hood. Barry (can I call you Barry? No! Ok... Sorry.) Dr. Ginsburg writes of four specific sources of influence that can throw off our archer’s aim. These source of meter inaccuracy are: variances with the strips, physical factors, patient issues and pharmacological problems. I strongly encourage you to read the good doctor’s paper and not solely trust the woefully inadequate analogies I am about to draw for these four horsemen of error. Here goes and remember these are the Saturday MatinĂ©e version:

Strips: Just as Robin Hood needs some serious quality control in his arrows to shoot straight, strips need to have their component parts straight and true. Strips need the right amount of the magic enzymes, in the right size little lollypop pool for blood and enzymes to react in and the tiny electrodes in the pool need to be the right size too. Olde Robin’s arrows may warp as they get schlepped around the forest so temperature, humidity, altitude, exposure and well you know the drill just about everything can effect the conditions inside that little strip.

Physical Factors: Just as the strip can be influenced physical factors aka temperature, altitude oxygen etc so can the test process itself. Mr. R. Hood has to shoot through the air and that air influences the arrow’s trajectory. Yes altitude and temperature have an effect. Alternative site test when it is cold can see even more of a lag to actual BG than normal condition.

We the Patient: We play a roll in accuracy. The good Doctor squared has a nice little chart that includes the impact of Chips Ahoy residue on BG. That is one of the more humorous thing I have seen in a scholarly discussion of meter accuracy and yes  washing hands has an impact. You think Robin Hood could shoot straight when he had grease from a slab of mutton on his fingers? There is more too, patients can miscode just as the outlaw may mistakenly use a duck feather arrow when he thought he was aiming with a goose feather arrow.  In addition to patient/archer technique a blood check may have variations due to the cellular composition of the victim’s blood. For example the red blood cell count aka hematocrit may be off. That can mess up tests. I am struggling for an analogy to the band of merry men in Sherwood forest for that one - how about: If they haven't poached one of the King’s steers recently they feel a little anemic and can't shoot. I do now I am struggling to understand why my kid’s meter doesn’t read when her hematocrit is off but I know it doesn’t. The honorable Dr suggests a GDH-PQQ or WaveSense meter and we have switched to the former as the later is the one that wasn’t working. 

Pharmacological: In short if Robin is on drugs it may impact his arrow accuracy. Various medications can influence how our meters work.

Strips, physical factors, patients and pharmacology - YDMV.

In summary, and I will be personally shocked if anyone reads this far, accuracy is about facilitating quality care. That means first and foremost sufficient checking done and acting on those checks to inform care.  So checks need to be sufficiently precise to make for quality care. Robin Hood is a myth but a serviceable metaphor for the many things that can make our meters vary. After watching the MatinĂ©e here at YMDV it is a good idea to read something more substantial.

December 8, 2010

Little Help - Can Anemia Mess Up Diabetes Blood Glucose Readings?

Doh! I feel like Homer Simpson asking that.

Someone out there should probably hit me with dope slap upside the head.  Of course {fill in the blank - including anemia} has an impact on blood sugar. What is the name of this blog again?

How does it mess with meters?

Diabetes plays games and one is to make me feel powerless. This is one of those times and I need a little help.  I am curious does anemia mess up glucose meters? I would love some experianced feed back.

It is more than just the readings - does anemia stop the frogging meter from working at all? Does it make the meter throw off used strips like beads from a Mardi Gras float with nothing to show but error messages?

We use WaveSense Jazz meters at school. Over the past few weeks our school nurse reports increasing instances of meter errors. As in it takes 2-4-6 up to 10 strips to get a reading. This is an experienced nurse and kid with 6+ years since type 1 diagnosis. They have literally thousands of blood test between them. They know the ropes of finger pokes.

The kid had lingering cold. That with exposure to whopping cough led to a doctor visit.  The visit in turn called for a blood draw that showed nothing but low iron. Which in turn led to a more detailed blood test that isn’t back yet.

Meanwhile the nurse is getting a more and more checks that just fail to give a reading. 2-4-6-8-what don't we appreciate? Using boat loads of strips to get a single Meter Readings! Yeah BG!!

Oh and some consistency between readings would be cool too. Three days ago after a bunch of errors the nurse got a BG reading of 22. That seemed suspicious given the circumstances (a word that hear means: a lack of hypo symptoms factored in with prior tests that day, the amount of insulin on board and time since eating.) So being familiar with such circumstances, they tested again. Three minutes and another bunch of strip later the low transformed into a 308. I don’t think anyone wants to confuse a 22 and a 308. Certainly not our nurse. She is tip top.

She called and sensibly but timidly asked for another meter. I love her. No worries I could swap out one from home with fresh strips in minutes. Guess what? - That replacement had the same issues and more the next day.

Could this explains some of the resistance to checking we are seeing at home? Gee I don't know - finger pokes are not that much fun to begin with so yeah maybe having them not work could be frustrating.

So I dragged a Tru2Go ninja meter up to school today when they called (3rd day in a row!). Would a different blood electrochemical process make any difference? Yes - No problems giving a reading, we'll see what tomorrow brings.

Now I for one don’t think a kid should have to poke her finger 5-10 times to get a reading. Also all in all I would prefer not to burn through strips at a rate of 2 to 8 errors for each reading. And lastly and I know this is being really picky of me I would prefer not to see 280 point swings between hypo and hyper in three minutes.

I asked the 800 number if they were aware of any issues. The operator at the call center was sure it is temperature. I know the environment well so I know it isn't about temperature. I called WaveSense directly, they said they 'wanted to support' me in the use of their product but little else.  Nothing about low iron and strip issues. 

I can find academic articles on the subject: Error Rates Resulting From Anemia can be Corrected in Multiple Commonly Used Point-of-Care Glucometers and Anemia causes hypoglycemia in intensive care unit patients due to error in single-channel glucometers: Methods of reducing patient risk.  I guess is a very scholarly, Yes - anemia can mess up numbers. But it isn’t much more helpful than my opening Doh!  

How about any of you out there in the big wild blue yonder of the DOC? Does anyone have experience with low iron and meter errors? If so what did you do about it? (Other than cursing - Kerri says we can’t curse. I may have forgotten that.)

December 3, 2010

Views of Diabetes Online

Those of use living with diabetes and who connect online see ourselves as a community. Heck we casually toss about the term DOC like anyone has a clue what it means other than the few of us in the club. 

I had the privilege of listening to one of my heroes, Christel Marchand Aprigliano, challenge a few of us in the diabetes blogging community to think about the 95% of the people who could benefit from the Diabetes Online Community who do not even know that community exists. I have been thinking about that challenge ever since.

Today, I saw a Facebook ad that is trying to attract the attention of some part of that 95%.  A part that is a very clearly defined segment of a marketing machine that sees the people looking for diabetes information online as a target. A group to track, refine and package as it “offers pharmaceutical companies an opportunity to develop relationships with individual consumers using sophisticated data-mining tools.” []

You know what? It is OK with me if pharma wants an individual relationship. That is fine. They have an important roll in health care.  I want pharma to be part of the community if they take a seat, join the conversation, listen and participate openly, honestly and with respect.

It is just that I don’t see this ad as open, honest or respectful.

What do you think?

Zen and the Connected Type 1 Diabetes Devices Don’t Exist

I wish they did. I have a radically different view of the technological future of diabetes care. It isn’t as much a Artificial Pancreas as it is a peace treaty between armies of robotic healthcare devices fighting over our data for their proprietary sales gain.

This treaty would make diabetes data available to, and this is the really radical part here, patients. The data will be presented in ways that would facilitate using all the information to help individuals understand how each little bit represents one of the variables that makes any type of diabetes vary.

The treaty would also facilitate patients picking the equipment and using the every day devices they already use to manage their diabetes. Now that may not sound radical but it is the opposite of what happens now. Our every day devices don’t help manage the whole of life with diabetes as our tools don’t share the little bit of information on our lives that they know. In fact they tend to guard our data as a hostage to the continued use of a given device.

I should talk about what prompted this version of my ongoing diabetes information rant. I have a RSS feed for Continua Health. Continua is, in theory, a means of connecting medical devices. Diabetes has been part of the Continua marketing line from its earliest days. Big diabetes firms are part of the Continua Alliance. Diabetes care keeps popping up in the press stories about Continua. Recently Med Gadget had a post about about a health data router for home heath care devices that said “One can imagine this device as being a central control unit for continuous glucose monitors.”

Not if one has ever used a CGM they can’t. Getting past the hurdle that no CGM is bluetooth enabled or Continua certified why would a CGM user want device with less functionality than the CGM’s own receiver? By less I mean less ability to interact like calibrating the CGM. Why would they want to carry Yet Another Device Already. (YADA)

Insulin users carry something to deliver insulin, a pump YADA, a pen YADA , a syringe YADA. They carry a meter YADA. Increasingly folks wear a CGMs YADA. Being normal every day folks they probably carry a cell phone YADA. It sound like a Seinfeld bit - Yada Yada Yada.

In case anyone is wondering those things for the most part don’t talk to each other very well. The solution isn’t Yet Another Device Already. Sadly the trend is to make for more devices and or less choice. Some may say, ‘Our pump displays meter and even CGM readings.” OK but only if we use the proprietary combination of strip meter, CGM and pump. Notice that the marginally usable food database left the pump and went into the meter with one pump so if you want the food data you gotta now carry YADA. Oh and for fun, to get the data out of any device requires proprietary software, running though a special cable, to a desk top PC, running a old operation system you probably don't use anymore.

The solution is that all the devices need to talk a common language. Continua is right about that part. Then the data can be combined to make something that resembles sense. Meter data by itself only has value in as point in time. CGMs are good at stringing those points in time together and making trends. Knowing the amounts of insulin taken would help make sense of those trends as would what was eaten (and a lot of folks enter that into a bolus wizard on their pump.) The data exist it just needs to play nice. Set the information free! Common language is the start of a treaty.

In a glorious world somehow activity, stress, hormone cycles and a partridge in a pear tree. Oh and a button to just reject freak events would be handy too.

The Continua model is data is collected sent to an electronic health record and via some mysterious process (using YADA above) doctors will have the time and be compensated for looking it over and making recommendations. If that happens, and that is one big ass if, I am sure the doctor will be using some kind of data collection device with logic tools that sift out relevant data and trends.

Why not keep that local? People living with diabetes are there own primary diabetes care giver. Cut the loop short. Get the logic into the users' smart phones. The phone they choose to use not some goofy medial phone.

Artificial pancreas fans are saying OK - why not just make the whole thing automatic? Make it all just work without any patient input. My answer is that there is value in knowing. There is value in being cognizant of the implications of what specific choice and events do to the individual. As in, wow that really work well maybe I should try to do that more often or opps that wasn’t so great how can I avoid doing the same thing again or wholly crap six hours after a really physical work out I crash and burn like the Hindenburg.

More awareness of how one live life is better than less. I think that is true on the purely physiological level and that the physical has a big impaction the emotional and spiritual levels too.

November 22, 2010

Crock of ...

Soup. Crock pots of soup. What were you thinking?

We had a soup and snack sale over the weekend to support theBetesNOW. It was a great success. Thanks to everyone who donated a soup, chili or stew. How many you ask? Well here is my crock drying table after I hand washed them all. (hello dish pan hands.)

- Posted using BlogPress from my iPhone

More Cake

While I was testing cupcakes Blair made this for a pre-movie party.

- Posted using BlogPress from my iPhone

November 17, 2010

YDMV Writes Stuffy

I'm in a grad school class and this week the task was in part a discussion of social media and Roch's social media guidelines.  Awesome - I get to write stuffy prose and to stick friend in footnotes. That's just strange. Here's a draft.

“Like a 7th grade dance.”

Individuals comparing the aches and pains of health experiences surely goes back prior to recorded history. In that sense the use of social media for health care dialogs is an extension of long common conversations into new technology. As Boulos et al more formally state, “Web 2.0 and its conceptual underpinnings do not indicate a sharp break with the old but, rather, the gradual emergence of a new type of practice that is evolution rather than revolution.”1 Roche’s guidelines for social media reflect this stating that social media’s, “basic aspect remains constant and is similar to traditional ways of communication: to engage in dialogue, provide and exchange information, and build understanding.”

Roche published their guidelines in August 2010. By that time Roche had sponsored two summits directly engaging health care social media writers. I was a participant at both events. Todd Siesky, Roche Public Relations Manager presented a case study on those summits at the Healthcare Social Communication Leadership Forum September 23, 2010. On a presentation slide titled “Your gonna need a bigger boat,” he states that the June 2010 event generated 50,000 Impressions with a reach of 1.25 million readers.2

To achieve those results Roche practiced some of the key behaviors they later codified in their guidelines. Among this was a long term approach. Their guidelines state, “Engaging in social media is not a one-off activity.”3 and “commit to follow-up over a longer period of time.” At the first event the initial interaction of social media and Roche was described by Dan Kane, Roche VP Marketing as being, “Like a 7th grade dance with the boys and girls awkwardly sitting on opposite sides of the room.”4 Before Roche could earn the impressions and readers that Siesky wrote of they needed to earn the trust of social media participants. In part this has been accomplished by investing time to stay engaged. For example Roche host quarterly phone calls with the summit participants.

Siesky’s presentation at the Healthcare Social Communication Leadership Forum lists the lesson Roche learned at the first summit including:
• Enter with valuable information
• Don’t only talk about yourself
• Be transparent and honest
• Keep it real
• Actively advocate for the patient community
• Help the community amplify its voice

A weekly Twitter chat for people living with diabetes takes place under the hash tag #dsma for Diabetes Social Media. The chat averages 100 participant weekly, a few of who were attendees of the Roche Summits. A recent chat focused on pharma participation in social media. Participants stressed that pharma needs to approach social media as a two way process, to listen and and respond not simply push product. Roche was repeatedly cited as a company who was participating in social media the right way. Said one post, “I've learned from Roche, and I know they've learned from us. I respect their efforts.”5

Beyond the the summits Roche has stayed engaged with social media. In doing so they found opportunities to work with the patient community. A specific case in point is the Big Blue Test video at It was produced by Manny Hernandez of the Diabetes Hands Foundation, David Edelman of and Riva Greenberg, from and Huffington Post. All attendees at the Roche summits.

Greenburg wrote, “For every view the video receives Roche is making a donation to assist the Life for a Child program and Insulin for Life. With 100,000 views, Roche will give the Foundation its largest donation - $75,000.”6 The video received over 100,000 views by the deadline adding to the impressions and reach Siesky cited above. 

In “The ROI of Social Media Is Still Zero,” Augustine Fou says,”Social media is not media - people’s conversations cannot be purchases, nor should they be purchases.”7 That is a issue for participant at the Roche summits who are deeply concerned about being seen as selling out. Most feel that being transparent is a key part of maintaining credibility. A Google search of Roche Social Media Summit returns 75,000 pages. The first dozen pages of the google search are dominated with blog entries about the summit in part to provide that transparency and in doing so providing reach and credibility to Roche’s efforts.

I suspect that as the dance between social media writers and pharma continues Fou will be proven wrong about the ROI of Social Media. It is not zero.

Full disclosure: I participate in Roche’s Social Media Summits. I join their quarterly Social Media calls. I actively supporte the Big Blue Video campaign with twitter messages and Blog post at and here

1 Kamel Boulos, M. N. and Wheeler, S. (2007), The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. Health Information & Libraries Journal, 24: 2–23. doi: 10.1111/j.1471-1842.2007.00701.x
2 Siesky, Todd A. "Healthcare Social Communications Leadership Forum." Web. 17 Nov. 2010.
3 "Roche and Social Media." Roche - We Innovate Healthcare. Aug. 2010. Web. 17 Nov. 2010.
4 Mendosa, David. "Roche’s Social Media Summit." Diabetes Developments. 24 July 2009. Web. 17 Nov. 2010.
5 Thill, Lee Ann, “#DSAM Chat November 4” Twitter Web.
6 Greenburg, Riva. “Save a Child in Less Than Two Minutes.” the Huffington Post. 3 November 2010. Web. 3 November 2010.
7 Fou, Augustine. “The ROI of Social Media Is Still Zero.” ClikZ 14 October 2010, Web. 14 November 2010

November 16, 2010

FTNW: JDRF IDDP with Amylin Pharmaceuticals

Good friend of the Blog Scott Strumello brought this to my attention. I think it is worthy of a From The New Wire post so thanks Scott for the heads up:

From Amylin's site:  

Clinical proof-of-concept study will also evaluate whether metreleptin can reduce the amount of insulin needed by patients with type 1 diabetes

NEW YORK and SAN DIEGO, Nov. 16, 2010 /PRNewswire-USNewswire/ -- The Juvenile Diabetes Research Foundation (JDRF) and Amylin Pharmaceuticals, Inc. (Nasdaq: AMLN) announced today that they entered into a research collaboration agreement to provide financial support for a clinical proof-of-concept study to investigate the effects of metreleptin, an analog of the human hormone leptin, in patients with type 1 diabetes. Researchers at The University of Texas (UT) Southwestern Medical Center will conduct the study.

I wish JDRF were a little more forth coming in these releases like what level of funding is involved in the IDDP from Both the JDRF and Amylin. What are the milestones envisioned. Stuff like that. I would think that JDRF has a transparency responsibility to all those who support it and that Amylin would have similar a fiduciary information reporting roll. Well at least in the next 10K/Q presuming the matter is material and given it is worthy of a press release I assume it is material.

November 15, 2010

World Diabetes Day Detour

We spent World Diabetes Day packing meals at a event sponsored by New Church Live and the boys high school, the Academy of the New Church. A great time was had by all as the little clip shows. It was all about food and there is a glancing view of a pump. That counts as diabetes related right?

Of course one of the points I try to make here at YDMV is to make the diabetes management second so doing stuff like this can be first once and a while.

Thanks to the folks at NCL and ANC who organized this. I wonder how many carbs are in 30,000 meals? I don't.

November 12, 2010

Remote Reply

I received a reply to my letter about One Touch Ping remotes and the possibility of confusion when two are used in close proximity.

What is important is this: Yes there is a way to put a legible name into the pump that appears on the remote that controls it. 

It is a very nice reply. They didn't call me any of the nasty names I probably deserve.

The instructions make it clear that, “Note: The custom Name appears on the Meter. It does not appear on the pump.” and it can only be 7 characters long, less than good old fashioned pre Windows 95 DOS but hey it is something.

The instructions are here:

Sorry for the ugly ads and stuff. When I work out a better host location I'll move the link. I think it should be on an Animas / OneTouch site. It isn't, at least yet. 

Y’all can feel free to stop reading now because the rest is my very wordy commentary on customer service. YDMV errr.. YCSMV.

I don’t know if it is significant or not but the letter I sent was to One Touch but the reply came on Animas Corporation stationary. I also had the pleasure of speaking with Animas folks on the phone. Over the years I have found that I genuinely like the people I have met from Animas.  So it isn't surprising that the people I have met over the phone in this case are genuinely likable.

The letter said (I apologize for any typos and or egregious spelling, I am sure they are far more literate than I and such mistakes are my responsibility):

Thank you for contacting us about your recent experience with your children's One Touch Ping glucose management systems.

We appreciate the confidence in our company that prompted you to bring this matter to our attention. We at Animas Corporation have worked hard to meet the needs of our customers with innovative and high quality products. We believe that every letter from a customer offers useful insight into our business.

For that reason, we take every complaint and concern seriously. Your specific concerns regarding the One Touch Ping Glucose Management system have been reviewed thoroughly by the customer Support Department and escalated to the Complaint Management team. Complaints (the actual complaint numbers have been redacted because I don’t see value in putting them in the public domain.) entered (on) your children’s behalf are currently under review.

Additionally, you requested instructions to personalize your children’s meter. Those instructions have been included with this letter.

Again, we appreciate the time you have taken to contact us. It’s only through feedback like yours that we can continue to improve our products.

Manager of Customer Support.

I have some experience in the craft of writing these kind of replies. I did it for a big bank for a few years. From that background I can make some semi informed comments on the letter (and realistically regular YDMV readers know that ‘semi informed’ is a significantly higher intellectual quality than most of the comments I make here.)

The response is both professionally and nicely written. For the most part it doesn’t say very much at all other than “Thanks. We got your letter. We’ll think about it.” That is actually just fine with me other than that part shouldn’t take a month.

It should be out the door the next day. In fact I’m willing to bet cash money that whole sections of the letter are boiler plate and if they aren’t the should be. Specifically the first three and last paragraphs. That fourth paragraph was the hard part.

My two cents is it would be better customer service to send the the other four paragraphs right away and a comment that the instructions will be sent as soon as they can be written and tested, with an expectation of how long that will take. But hey that is me.

I was on a time clock to reply to executive level letters within fixed time frames and those time frames were at the longest three business days, unless the letter was from a regulatory or political office holder in which case a response had to go out the day was received in kind (call for call, letter for letter etc.) and followed up by a letter in the mail the next day if the original was not a letter.

As for the instructions on how to customize the pump/meter. I haven't tried them yet they are four pages long and I need the pump and old PC running a legacy operating system like XP to do it*. I have up loaded scans of the instructions for the benefit of others who may wish to take advantage of theses instructions. I understand if nobody else is into four pages of crappy scans of instructions. I will comment on the actual experience after I try it.

I reached out to Animas and asked if they would like to provide a clean pdf file. They being a highly regulated business need to go back to the chain of command, a.k.a. Compliance, to see if that is OK.
To be precise they provided me personalized clearer instructions on cusyomizing a pump name because I pushed for them. Knowing I intend to share them with other parents, they will not provide a clean electronic copy, at least yet.  They put it in the context of wanting further review, like the sidelines tossing a red flag at an NFL game.  I have no idea how long that will take, but while the ref is under the hood,  kids still have diabetes to manage.

I am from Philly. Eagles fans boo bad calls, we even boo good calls we don't like. I'm not sure which one this is.

If, upon further review, I get a better pdf, I’ll post it.

* Insert my typical rant about diabetes devices not keeping up with computer operating systems technology aka current Windows & and Snow Leopard. I have a few readers who are even more rabid about it than I. I bow to their expertise and acknowledge their contributions through comments here at YDMV. Which is my boiler plate for “Way to keep me honest dudes.”

For Anonymous - ANC Sigma Telegrams.

Some anonymous soul (and this is YDMV, I can understand the desire NOT to associate one's name with it) commented on the Mark Fox clip about another of my videos on Vimeo. A clip of kids singing. Here's more and the back-story.

For those of my YDMV friends that aren't alumni of the Academy of the New Church and I expect that is most YDMV readers, it is a private, church (no kidding it is in the name) school in Bryn Athyn PA. It is at times a very impressive place and no time more than when the kid's clubs send each other singing telegrams. There are four clubs, two boys, two girls, one dorm kids one local kids of each. Twice a year the clubs have banquets and send each other telegrams.

That a school of maybe 200-ish kids can find four groups of kids with the ambition and talent like this year in and year out in impressive. No it is not a dedicated preforming arts school. These telegrams have been going on since way back when dinosaurs roamed the earth (and I was in high school) and even earlier. I that think speaks a lot about a culture that the creates opportunities for kids to diversify and explore interest.

Connor joined his club's (Sigma!) telegram troupe this year. I shot some video so Kelley up at NYU could see him. Well some alert YDMV reader (and yes I consider that an oxymoron) somehow spotted that clip on theBetesNOW's Vimeo channel. I was very embarrassed, the quick post edit work was beyond pitiful but I found this and at least the kids heads aren't cut out of frame.

Reece is the Sigma President, a fine football player and sings the opening solo. Behind him is a guy with a triangle, Greg. He is the song leader and worked out the arrangements. Greg can do things with a fiddle that brings a tear to the eye. The soloist in the second song has committed to serve our nation in the military. Great kids, mine's  OK too. So there are some very diverse interest pooling their talents.

As an ANC alumni, Sigma member and dad I'm proud of these kids for a lot more reasons than you can see but all the ones you can see on the clip too.


Big Blue Backstory

Manny has some of the back story on people in the Big Blue video. Good read, particularly if you have a girl interested in dance.

Oh and just under 10k views left to go. Don't stop playing again and again.

November 9, 2010

Ya Oughta Know This

 If you live with diabetes you are the primary care giver. If you are a parent your job is to pass that  on and that is harder than taking the responsibility on the the first place.

Here is my good friend Mark, who was the hero of one of my earliest YDMV posts, with 24/7 on the matter:

The plan for d-blog day is six things I want people to know. Six is a lot. I find most folks don't have that much of an attention span. So if y'all get this Primary Care idea - I'm good with that.

November 8, 2010

Counting CGMS Before they Hatch

For OmniPod and Animas users looking for CGMs integration the news is more FDA reviews. Dexcom’s Earnings call of Nov 4 was released on Seeking Alpha on Sunday Nov 7. It is a long and nuanced call. I am sure a fair amount of that nuance sailed over my head. I recommend folks have a look for themselves if only to get a glimpse at the magnitude of the complexity of the regulatory process.

Here is a way over simplified overview of what I get: The FDA came back to Dexcom and is requesting more data. There is quite a bit of candid conversation in that call. About CGM pump integration and about the FDA looking at insulin pumps with a more heightened scrutiny.

Attempting to translate the call into the simple what does it mean for my pumper language for families living diabetes it comes down to this; CGM integration into OminPod and Animas pumping systems is at pushed back. Taking a SWAG maybe a half year, probably more. This looks to be in part about CGMs and part about tighter regulation of insulin pumps.
Insulin pump companies today are faced with the likely prospect of having their pump products regulated under a new subset of class two devices where approval standards are in a state of flux and human clinical data requirements are unclear.
the FDA is undergoing sweeping changes to its review and approval policies and procedures, and has set forth as a priority an effort to improve the level of regulatory science the agency applies to all medical devices to better assess, evaluate, and review products.
With regard to Generation 4 of the Dexcom system which is what Animas is looking to work with:
we (Dexcom) expect to complete a small additional clinical trial with the Gen4 sensor paired with our next-generation receiver and transmitter, and file an amendment to our Gen4 PMA supplement during the first half of next year. Although we cannot predict the ultimate decision or timing for a decision by the FDA, we believe this amended Gen4 submission will be incorporated into the current Gen4 180-day review cycle, give or take a few months.
OmniPod has some decisions to make about how to proceed. They were expected to launch before Animas based on using the current generation 3 Dexcom product. However the FDA seeking more information means OmniPod may want to look to Gen 4
Insulet, as you'll recall, is paired with the SEVEN Plus. The Animas product, when complete and filed, will be paired the Gen4 sensor.
The Insulet situation's a bit more difficult to describe, only from the standpoint that Insulet's got to make some decisions as to what they want to do going forward, either to move forward with the SEVEN Plus, or if they make the decision to go to Gen4
While there is additional scrutiny in the USA the EU combined Animas/Dexcom system continues to be expected in the first half of 2011.
we remain committed to filing for CE mark approval before the end of this year and expect to be in a position to launch the combination product in Europe during the first half of next year.

In closing my post, I thought this was a particularly telling comment in that I think every patient, parent and partner of a pumper is accurately aware of the seriousness of this statement:
I've long said it amazed me that the pumps were 510(k) products that carry around anywhere from 180 to 300 units of insulin, which is a potentially lethal amount of insulin.
As a parent of type 1 kids I don't take that lightly at all. We accept that as a means to a living more normal, better manages lives. The point of all this technology is to make diabetes secondary to living pseudo normal lifes and pursuing dreams.

Full disclosure: I own shares in Dexcom. I think CGM is a good idea. Dexom is a pure CGM play. Your Investments May Vary, mine sure do.

Dear Vendor

Your living depends on quality delivery of diabetes products. Our kids lives depend on them. It almost sounds the same but lest there be any confusion the difference is a quantum leap. Y'all would do well to project an understanding of that.

I was in the lobby of one of our vendors a few weeks ago and read a poster on the wall extorting the employees to achieve the 2009 goals. It being the tenth month of 2010, I wonder if they made the 2009 goals, or if the staff even sees the sign as they walk past since the poster, having been up for deep into the next year, had become invisible. In part the sign read, "deliver the highest quality diabetes products and services to our customers while ensuring compliance and profitable growth." It also talked about putting the "customer at the center." of quality and delivery.

Wouldn't it be great to be at the center of quality delivery? I would be a huge cheer leader for your profits if I felt my kids were at the center of your business behaviors.

I would think that would putting the customer at the center would include responding to or even acknowledging customer contact in a way that is useful and in kind with how customer the contact the company.

A month ago I wrote this particular vendor a letter. Neither of the executives who were recipients have made any reply. A third party support person called my cell about a week later with instructions on how to use my computer to manage the meter and pump in a work around. I was at my daughter's field hockey game. I did not have access to a computer or the meter. Getting the pump would require actually stopping the game. So I asked for an email. I like written instructions - I know it is old school, but I'm old. I was assured I would have that email the next day. It was a little late to get it out that afternoon and I didn't expect the caller to get home to his family dinner late so I figured one day was fine.

Never got'm.

I called a week or more later and after some fairly aggressive insistence about escalating on the line rather than waiting for another call back or email, I was told I that write instructions would require approval. Really? I can expect a call back in two business days that will update the status of getting a written reply. (There is a weekend in there so it four days with diabetes because diabetes doesn't take weekends off, I think weekend off would be a big improvement in diabetes care by the way.) I got that call and they said they were still 'working on it.'

I spoke to one of the recipients of my letter today. I was assured they had seen the written reply to my letter and the instruction for a work around. That nice. I haven't.

At the center of it all is we still have manage diabetes. Unlike a vendor the kids don't get to wait a month to think over how to respond to it.

So One Touch, that 2009 goal about customer at the center of quality delivery - care to grade yourself on this issue?

October 6, 2010

One Touch Ping - Compliance
200 Lawrence Drive
West Chester PA 19380

Ms X and Mr Y,
I am the parent two teenage minor children who use One Touch Ping pumps. The Ping meter remote and the insulin pump are designed to work together as a system by patients. In our cases by pediatric patients. With two Ping users in the house we have two OneTouch Ping Meter Remotes. The meters remotes are the same color, design and do not appear from the documentation to support user identification by name the remote screens via software customization. Short of the serial numbers these remotes are indistinguishable.

In a multi pump household, the indistinguishable remotes and lack of in device personalization presents a strong possibility of confusion and the very real possibility of one child entering an insulin dose that is delivered to the other’s pump. This would require that both the confused pumps and remotes be in common transmission and reception range. That happens at regular times, such as at a family meal. In fact insulin pumps are designed for use in conjunction with meals. The use of pumps (is common) at every family meal in type 1 households.
Lables, stickers and skins can be used to identify remotes but can all wear off or be removed. Customization of the home screen of the remote / meter with the user name would allow clear positive identification of who’s pump each identical remote controls.

OneTouch suggest that users check the serial number of the pump that can be displayed on the meter. Those numbers are long, not intuitive and potentially difficult for a pediatric patient to remember. The process of calculating and administering an insulin bolus involves an array of number; blood glucose, carb count, insulin to carb ratio and insulin on board to name a few. These numbers have the potential confusing the recall of the serial number.

Hyperglycemia may exacerbate the risk. Linda Gonder-Frederick, PhD et al demonstrates in the article Cognitive Function Is Disrupted by Both Hypo- and Hyperglycemia in School-AgedChildren With Type 1 Diabetes: A Field Study, Diabetes Care, June 2009, that hyperglycemia effects the cognitive function of school age children. Hyperglycemia require more insulin than would otherwise be infused as a correction bolus. However at the time more insulin is needed ability may be impaired and the potential confusing the recall of the serial number increases.

Were this confusion of remotes used to operate pumps to happen there is a very real possibility of excessive insulin delivery. Animas is aware of the risks of excessive insulin delivery. The phrase that is used repeatedly in the Ping Owner’s booklet, bolded and highlighted, is “... can result in serious injury or death.”

Section II, of the Owner’s booklet titled OneTouchPing Meter Remote, pages 107 - 126 details setting up the OneTouch Ping Meter Remote. Page 109 specifically speaks to the device home screen. Pages 114-118 address customization. In repeated readings I was unable to identify any customization of the OneTouch Ping Meter Remote that would facilitate naming or other easily understood personal identification of the user on the home screen or via customization settings.

Use of remotes for different pumping patients in the same household represents a potential serious risk as designed.

Sincerely yours,

cc: FDA

My post with a reply is here:

Editors note: I removed the names of the contacts at One Touch. It seemed more fair to focus on the organizational behavior and less on individuals. - YDMV

November 5, 2010

Tame a Tiger

 Get Brilliance - Free!

The diabetes community asks for and gets a lot of support.

We walk to get support. Ask our friends to watch videos again and again to get support and we put our fool names and faces on the CURE for support.

It nice to join with the diabetes online community to help one of our own do some offering and giving. I’m here to help a friend give away his book. He wrote it to help people new to diabetes cope. Not explain it all, just cope. Coping is a brilliant first step.

He set out to sell the book but being one of the better angels on this planet he wants it to help more people than just those who have a few bucks to buy it. So he made an electronic copy and put it on line.


The book is called Taming the Tiger or Domar al Tigre if you prefer your tiger taming in spanish. You can get either or both here, free.

My friend’s name is William, Will, Liam, Lee or all of the above. He is an author.  I consider him an expert. I think if the rest of the world knew him, they would too.

Maybe they will.

Just this week Lee became an expert contributor to Dr. Oz’s new health Q&A website Check him out there. Of the answers I have seen there, in my expert opinion, his are the best. 

Free book and free expert advice. Lee, like all Super Heroes, only uses his powers for good and works cheap.

FTNW: FDA seeks more data from Dexcom

From the News Wire: Dexcom Share Down as FDA seeks Data:

Nov 5 (Reuters) - Shares of DexCom Inc (DXCM.O) fell as much as 29 percent on Friday, a day after the company said the U.S. health regulator had asked for additional data related to four of its products awaiting approval.
"The regulatory delays will impact the timing of milestone payments from the company's strategic partners, which may result in DexCom needing to raise additional capital to fund the business," Wiliam Blair & Co analyst Ben Andrew said.

Be In Good Company, Join Us

 Be Part of the CURE.

We are on the 'E.' Lower Left side. Right next to our good friend Kerri!
Come to think of it, everyone on there is a good friend.
Thanks for being part of the CURE!
Join us. We're good company.

November 3, 2010

Watch This Again and Again and...

I have been ask what comes of the Social Media Summit Roche has put on the last two years. I always say, the most significant thing is that everyone who has attended have become better friends. Friends try to work together. Then people look at me like I am nuts to think those connections matter.

They do.

A lot.

A case in point is this video. It was produced by Manny Hernandez of the Diabetes Hands Foundation, David Edelman of and Riva Greenberg, from and Huffington Post fame. I have come to love all three of them from the Summits.

They worked with our host from Roche to support for two very worthwhile efforts with this video. I think it is fair to say that the people at Roche are friends too. While social media and pharma are on different sides of the commercial diabetes space we can all care  about those in need and work together. I mean it is not like we are Congress, in the real world outside DC people can find commonality. This video is one such place.

I will let Riva explain:
For every view the video receives - between now and November 14th, Diabetes Day - Roche is making a donation to the Diabetes Hands Foundation the entirety of which will be used to assist the Life for a Child program and Insulin for Life. These two global, humanitarian assistance programs provide ongoing care and diabetes education to children in the world's poorest countries - care essential to stay alive. 

Donations provide children with life-sustaining insulin, syringes and blood sugar monitoring equipment, teach parents how to care for their child's diabetes, cover transportation costs for supplies, ensure continuous infrastructure improvements and help to develop new programs. Currently more than 25 such programs keep children alive around the world.

With 100,000 views, Roche will give the Foundation its largest donation - $75,000.

"The "Big Blue Test" video was created by Manny Hernandez, David Edelman and Riva Greenberg, directed and edited by Sean Ross and underwritten by Roche Diabetes Care, makers of Accu-chek. All persons in the video have diabetes including Bill Carlson, the first Ironman triathlon athlete with diabetes and Zippora Karz, former soloist ballerina with the New York City Ballet."- Riva

October 31, 2010

Reasonably Assemble

We went to the big rally for Sanity and or Fear on the Mall in DC 10/30/10. We were there for the fun and showing up for reasonableness seemed like a good idea.

We stayed over night at Mrs. YDMV’s uncle’s planning to take the Metro in early. There were six of us, Mrs YDMV & I, two of our kids and two friends of our kids’. One of those was technically a boyfriend. When ever I, as a dad mention a daughters boy friend, people ask, 'How do you like him," as if it makes a difference. Well I like him very much. He is great company when ever he is around, not that my opinion makes any difference. 

Oh yeah and just because the rest of us were going that rat bastard diabetes rallied for a little fear. Connor woke up slow, and buy woke up I mean could almost stand up but was totally incoherent. 33. His sister held the juice glass to his mouth and two cups of OJ and a Crispy Cream donut later he was 30. Yippie. More juice more donuts, a half a coke and more time and he started coming up.

A little note of advice: Connor was too incoherent to tell us where his meter was. This is why I always have a redundant one someplace where I can find it. At home and when we travel. Redundancy is a reasonable diabetes precaution.

We headed to the Metro. We got on face outside the city, in fact the second stop in from its distant suburban terminus. It was a little past 9:00. The rally was at noon on a fall wekend . The train was standing room only. I could comfortably step on but was just at the door.

By the time we reached downtown I had squeezed into the center of the car sharing a little flesh to flesh contact with strangers. The train ride was a interesting sociology study. Those on the train, sharing a little contact with strangers, were fairly convinced there wasn’t any more room as we pulled into each successive station full of people wanting to join us. There was a general murmur of discontent as the new folks crammed in convinced that more room for contact was fine. At the next stop the former newbies were openly resentful of the new newbies. Rinse lather repeat.

We were happy to get out of the Metro and up into a cool sunny autumn morning in DC. Few cars, lots of people on foot. Near the mall Yahoo was handing out little plastic megaphones, but using them seemed a little unreasonable, others were handing out stickers and rally towels.

There was a sizable number of folks already there. We set up some chairs because sitting on the ground was a completely unreasonable expectation for an old guy like me.

The group kept building over the next few hours and by the time the thing started we we probably about at the back of the first third of the crowd. There were people on the Mall. People on the steps of the museums along the Mall, people in trees and people on top of the port-a-potties between the Mall and the museums.

Much like the sociology experiment in the trains the lines of personal space were tested and later arrivals were convinced there was space between those who has arrived earlier. We have a fair amount of experience with this phenomenon at Disney World Parades. Our initial territorial stake was made with folding chairs and blankets and was probably an over estimation of our real needs for space. We made reasonable concessions and were were perfectly comfortable.

Another interesting social media experiment played out on the Mall. That many people with mobile devices overwhelm the networks. Nobody’s phone worked. Tweets became the signs those who felt compelled to communicate shared. The rest of us lurked and occasionally actually talked with each other without a handset.

The day was a total joy.

Outstanding music and humor conveyed two main themes. First were perfectly reasonable points about media fear mongering that creates virtual crisis out of political minutia. The second and possible more prevalent punch line promoted religious tolerance for all, and specifically for Islam.

It was a nice day on the mall to peacefully assemble at the seat of our government, poke fun at those who seek to limit the free exercise of religion, expect more discerning from the media, speak freely and for some climb port-a-potties. In short it was a first amendment fest.

The trains were packed on the way out too.

Oh and Connor cut back his overnight basal rates and put on a CGM to get some better overnight data. That seemed like a reasonable response to some a scary low.

October 25, 2010

It is the T1 Community of Course the Monkey is Conducting

My son was invited to walk with friends from Friends for Life. So was my daughter. They were asked to different walk locations. That's what happens when you have lots of friends. That is a good thing, NO it is a Great Thing.

So I took the boy well know for his parking prowess in the City downtown and Mrs. YDMV took the girl to the Bucks County Walk.

I got this clip of the team my son walked with reaching the finish and breaking out into song. As you can see kids do that in real life not just on Glee. In real life they don't have auto tune but they do have a monkey conducting.

I may have to add break out in song conducted by a guy in a monkey suit to this bit in the disclaimer: If you or anyone you know is a member of a Type 1 family you know they are amiable but stressed out folks who are happy share their experiences with others who "get it," a phrase that here means poke, pee, inject, inspect, infuse to insanity.

I swear I didn't even see the guy in the monkey suit until I showed it to Delaney back home. I did get to see Kelly, Grace, Lucy and Penny and a lot of other wonderful folks too.

So for all the seriousness of living with type 1 I think it is clear we are not all that solemn.

Just look at all those people! To all of y'all who walked somewhere, anywhere Love Ya / Mean It.

October 19, 2010

Read Riva

Great minds think alike. OK, in my case great is probably over reaching so how about, 'Aspiring minds read the same stuff for inspiration.' That is my way of saying, “Yeah me too!” to Scott Strumello’s words of praise for Rive Greenburg’s pieces on the DRI.

Riva has two wonderful pieces up at the Huffington Post on the DRI and research to find a cure. Like Scott I encourage you to go read them and will tempt you with little bits that I found wonderful:

From Part 1 a frank and honest the answer to how long will it take to find a cure:
Q ... 38 years ago I was told we'd have a cure in five to 10 years back then. Are we any closer?

CR: We are much closer, there's been more progress in the last five years than the preceding five decades. It won't happen tomorrow, though, and I hate to over-promise because so many people have been disillusioned. But I'm still working with the same enthusiasm and determination as if the cure will be within the next three years.
From Part 2 a touching look into the feelings of a researcher

Q: What's your biggest challenge?

CR: Besides funding, it's the blocking of a physician or scientist when he has the ability to cure one individual. The soldier in Afghanistan is a perfect example; If I were following existing rules to the letter, I really shouldn't have done the transplant because I didn't have the needed approvals in place at the time.

In the current regulatory environment, if you have a patient with diabetes or cancer you can only treat using randomized, evidence-based medicine, or findings from a major trial.

I went into medicine to be able to help one person at a time while concentrating my efforts on developing a cure for millions.

Scott and I found different parts of Riva's articles quote worthy. I hope you will go read them both and share the parts that you find quote worthy. I look forward to seeing a lot of links back to Riva around the DOC as we are all inspired by her articles on DRI's work.

As a parent of two type 1 kids my thanks go out to Dr. Ricordi and the DRI. As one of the many who hope to benefit from his work I just want the guy to know it is OK if he takes a little time to go fishing and de-stress a little (A reference to part 2. You'll have to read it yourself.)

LY/MI Doc.

October 18, 2010

October 13, 2010

Unfortunate Events

When the kids were medium sized we loved reading Lemony Snicket’s Series of Unfortunate Events. They are delightfully unpleasant. So much so that on one trip to Disney World the boys were excited to take a midday break from the parks to have a chapter or two read to them in the hotel while their little sister napped.

One of the catch phrases a bully in those books uses is “Cake Sniffer.” The series of unfortunate post lifting events that I wrote about yesterday took an amusing Lemony Snicket like turn shortly after that post went up. The Cake Sniffing sight I wrote about in Yo Ho yesterday lifted Yo Ho in its full glory and re-posted it. Now that is just moronic.

However their encroachment upon one of Kerri’s post about her child is more than copyright infringement. It is an obscene intrusion upon the innocence of a child I hold as dear as a niece. Copying that post was a lot more than moronic.  Following Kerri’s lead of more polite public discourse I will refrain from the short descriptive words that communicate the intense guttural repulsion I feel for that intrusion.

I have been asked in emails about this site. I don’t link it because beyond giving it any sense of dignity links to a site are a component of search engine ranking. These unfortunate Cake Sniffers don’t warrant that cyber recognition.

I did however send a fax and letter of notice of copyright infringement to the Cake Sniffing site’s host. I also forwarded a copy of the pertinent information needed to file a similar letter to the copyright holder of A recipe for filling a complaint as it were, in case she didn’t have time to look it all up. (Hey Web crawler! See that link there? One more in the thousands that reference

If anyone else needs said recipe to whip up an infringement notice to these diabetic cake sniffers drop me an email bennet (at) YDMV (dot) net.

YDMV Note:
As I was typing this bit up, my fax spawned the following email: 


This message is to acknowledge receipt of your DMCA complaint.

We may respond to your notice by removing or disabling access to material claimed to infringe, and/or terminating users of our services. If we remove or disable access in response to such a notice, we will make a good-faith attempt to contact the owner or administrator of the affected site or content so that the owner or administrator may make a counter notification. We may also document notices of alleged infringement on which we act. As with all legal notices, a copy of the notice may be made available to the public and sent to one or more third parties who may make it available to the public.

In order to ensure that copyright owners do not wrongly insist on the removal of materials that actually do not infringe their copyrights, the safe harbor provisions require service providers to notify the subscribers if their materials have been removed and to provide them with an opportunity to send a written notice to the service provider stating that the material has been wrongly removed. [512(g)]. If a subscriber provides a proper "counter-notice" claiming that the material does not infringe copyrights, the service provider must then promptly notify the claiming party of the individual's objection. [512(g)(2)] If the copyright owner does not bring a lawsuit in district court within 14 days, the service provider is then required to restore the material to its location on its network. [512(g)(2)(C)]

If it is determined that the copyright holder misrepresented its claim regarding the infringing material, the copyright holder then becomes liable to the OSP for any damages that resulted from the improper removal of the material. [512(f)]


Network Security Administrator

October 12, 2010

Yo Ho

One of my blog post was highlighted on a site with a number from Kerri’s, Caroline and Cherise at Diabetes Daily, and some other fine DOC folks. It would be an honor to be in such outstanding company if it were not for the whole walk the plank nature of the thing.

Highlight is a more than kind, is little deal is more like a wholesale pirate job. From what I can tell the site has content that is noting but posts lifted from other, smashed onto a blog that exist to serve up ads from DoubleClick oh and some links to books at Amazon. The site takes privacy fairly seriously in that whoever set the thing up keeps their identity well hidden.

They say imitation is the sincerest form of flattery. I am not so sure. Not so sure this is imitation but that aside I feel more flattered by the friendship and welcome that the DOC gives in abundance than anything imitation could offer. I would be easy to focus on feeling taken by this experience but that would miss the point. The real point is my life has been greatly enriched by our community. In no small part by all the people who like Kerri lead lives that are not defined by diabetes but in part explained by it.

That explanation is that through our shared experiences we have learned to honor others struggles with and beyond diabetes without simplistic formulas. We have learned to be more human. The serious crime here would be if parasitic sites discourage people from participating in the online community.

Our community is important so important that it attracts charlatans. Perversely that is high praise.

October 11, 2010

The Circle of Life is a Small World

As a parent, I have tried to find roll models. People who exhibit the attitudes, behaviors and character I hope my kids well grow to share. As often as not it is for my benefit. I like to know what influences parents used to helped these folks get where they are so I can shamelessly copy those practices.

I started when the kids were really little by ask the parents of those of my peers who I respected how they brought up families they way they did. Side note here, if you really want to flatter someone ask’m something like, “So your kids are what I want mine to grow up like, how did you pull that off.” I completely tongue tied a friend’s mom asking that. It was awesome. Surprisingly or maybe not the responses were very similar. Practice faith, put the family first, eat meals together at the table, do stuff together.

Not being particularly original I employ the same strategy as the kids grew. When the kids showed interest in studying the film industry or criminal justice - one stop shopping with a friend who has a masters on the later and a movie in wide release this weekend. Curious about growing up with type 1. There are a lot of you out their who’s brains I have picked.

I didn’t stop seeking roll models when the kids were little. A few years back, at FFL, Delaney and I had a very nice conversation with professional bike racer from Australia. She was a glorious roll model for a ‘tween girl, outgoing, confident, a professional athlete, type 1, personable etc. Her name was Monique Hanley.

Fast forward a few years. The kids are getting bigger, so I start looking for people I can who can I learn from as motivation for my soon to be young adult type 1 kids. I met a local woman who runs marathons with type 1. She spoke highly of a group in Canada who do all kinds of great stuff. The leader of that band of crazy Canadians was interviews over at DiabetesMine, one of her roll models in starting the crazyness, Monique Hanley.

So I don’t know which Disney song to sing here. Is it “It a Small World” when a woman from Australia has as a trans-continental influence or is that Just the “Circle of Life” with diabetes?

Either way here’s to Monique.

October 6, 2010

Change Just One Thing.

Kerri is an inspiration. She has a lovely bit about changing just one thing about diabetes. Go Read it.

I'm curious - what kind of marketing wiz asks a question like that? It is as if they may, if they get an extra latte, find the energy to make just one little change in the diabetes universe but don’t know what that should be.

How about the medical-industrial complex making continuous change.

They could start by staying current. Yes this would mean the FDA approval process would have to keep up too.  But every time some industry dude points a finger at the FDA for being too slow the other four are pointing back saying. "Hey industry! How slow were you in bringing the application to the FDA?"

I have heard industry people say they were waiting for clarity from the FDA. Great business plan, if you would be so kind as to tell the diabetes to wait too that would be just peachy. In the mean time we are still living with it and tools stuck in a prior time.

For example, the desktop software that supports our pumps is at best a warmed over set of macros built in a Microsoft Office application. It shows that it was originally developed in Access even if it now runs in something else. To my mind it lacks any real sense of being a useful tool for managing diabetes.

As if to demonstrate its marginality the pump manufacturer no longer includes the software in a new pump start kit. They tell me that too many were being thrown out so they figured they wouldn’t go to the expense of including it with the pump. They will support patients with a free copy if they fill out a form. Call me crazy but wouldn’t it be a more effective means of supporting clients to make the software so good it was helping them sell pumps?

It would be awesome if patients could choose tools that work together to support their lives with diabetes from what ever vendor provides the best tool to support the patient's particular life style. If the meters and pumps and CGM all spoke a common language we could. Instead data formats are used to separate devices by brand. This tower of technological babble hinders looking at the various components of care as interrelated parts of the balance of life with diabetes.

Let me be clear. That data is ours. We use it to manage lives with diabetes. It isn’t your marketing tool. It is patients' health.

It would be great if the software and devices stayed current with the technology in our homes. If it worked on the PC or Mac of our choice with the current operating system. For the record compatibility isn’t running and old copy of Windows XP booted on an Intel Mac. Lots of us use mobile devices too - catch up.

All that is indicative of the just one thing I would like to see changed.

It isn’t technology.

It is how industry sees patient lives. Patients live dynamic lives. We don’t stay in one place. Kids with diabetes grow. Children become adults. Women with diabetes have babies. Lives change. One size doesn’t fit all. One change isn’t enough.

Keep up.

September 29, 2010

More Crazy Cool Canucks

I just found out the awesome Connected In Motion gang has a new video up. Enjoy.

Parking - $62.50 an Hour

Yesterday I wrote about the type 1 meet up over the weekend. It was a good event. I was happy with everything but the stolen car. Well sort of stolen.

When I posted the event a while ago on Facebook my good friend Nick asked if there would be free parking. Sure Nick, drive on up from Texas, free parking for all.

Almost all.

To have time to get thing ready and to fret that I would screw up horrifically we sent my son on his first solo driving mission to center city. He has an acting class there. His is a good actor and beginner driver. For the last few weeks I had gone with him as a passenger, to teach him the way literally. Those missions were not entirely smooth but worked out OK. Well when I say OK, I made him miss the exit off I95 the first time. We did a U turn in the empty parking lot of a sketchy "gentleman's" club and book adult literature store parking lot at the next exit down.

The city can be a little tricky but with the practice runs I figured he was ready to solo. Maybe even better off without my navigation errors.

He got lost.

I talked him back on course over the phone and without the dance club u-turn. Parking was hard to find. The window motor broke and wouldn't go up. No worries, I said, its a clunker go to class.

At noon he came out to get the meter had left in the car and check on things. It was gone. The car that is, and with the meter with it. He thought it had been stolen. We tried to calm him down. Staying in touch with his acting training he analyzed his feelings and sent this text message, “If I were to describe this situation with one word, it would be a swear word.”

I just about cried I was laughing so hard.

A few calls, while I fretted all the more over blowing the meeting, Kimball discovered the car had been towed by the infamous Philadelphia Parking Authority. The ones with the reality TV show.

We wanted the kid back more pressingly than the car so Kim drove down to pick Connor up with little more than just enough time to get back for the event.

Meanwhile Ginger, the guest speaker and star of the soon to happen and fretted over diabetes event, and I had crossed signals. I didn’t get that she needed to be picked up at the train station in Philly. Time was short and just for fun the Mini Cooper battery died and it wouldn't start without a hill to coast start on.

But Karma was on my side as Kimball was already downtown picking up Connor! Did I mention his meter and iPod were in the car and the window broke and couldn’t be put up and the car was in the impound lot? He was stressing about that part. Guess what happens to blood sugar when he stresses out? Right Hypos.

I am not making any of this up.

The lot was open to 3:00 am or something convenient like that for people who stay to last call before finding out their car was towed. That is full service impoundment. The lot is off the same exit of I95 where Connor and I made the U turn when I missed the exit for old city.

Being overly ambitious we were planning on going to go down that night. But after theBetesNOW meet we had tickets to a spectacularly good New Church Live Band benefit for Habitat for Humanity. Saturday night we were too tired to get the car before the 3:00 am closing time. It turns out that was also good Karma as the tow truck driver wars turned violent and there was a shooting that night.

We got to the impound lot a half hour before it opened at 4:00pm the next day. I looked up the history of the cruise ship the United States to pass time. It is a rusting mess right next to the parking authority now but it was probably way cool in its day. The internet says it cost $800,000 a year to keep it there. That works out to something like $91.32 an hour. Yeah I was that bored. Seemed high for the location to me and it made me worry a little about getting the car back.

We were second in line. So when the parking authority did open we had only 37 minutes of standing in two different lines for three different windows and a sliding gate in south Philly to get the car back. Mostly the was due to Kimball quick thinking and her getting in the second and third lines while I was still in the first and second.

The car window was still open. It had only rained a little and the meter and iPod were still in it. And it worked out to only $62.50 an hour for parking for Connor's 4 hour class. Cheaper than parking the ship.

I think maybe I'll drive with him to class next week. I have had enough fretting.