People with Diabetes are Awesome

People with Diabetes are Awesome by Ginger Vieira:

Check Up and Check In

We did the diabetes equivalent of the 3,000 mile oil change this week - you know check the A1C level and rotate the infusion sites. Being real diabetics as opposed to some sprinkle sharing unicorn like mythological perfect diabetics there were ideas on things to do better and a recognition of the things that being done well.

Before the meeting with the CDE started she introduced a women I didn’t recognize. I wondered if it was the the dietician we had scared away a year or two ago with our dedication to the SWAG method of carb counting. Nope. It turns out she was with the research team. Here name was Tammy and she wanted to know if we would participate in a database study...

I cut her off. Sure. We are in.


When I was at the JDRF Capital Chapter event a few weeks ago one of the geniuses (I don’t use that term lightly, these scientist were sharp as a fresh lancet, if anyone remembers what a fresh lancet is like. I mean daylight saving time is a way off... But I digress.) One of the geniuses presenting was talking about the lack of a database type 1. There is no registry of folks with type 1 diabetes in these United States so it is a little hard to say with accuracy if is it increasing and if so where and why.

So there we were at the next endo visit and they want to know if we will participate in a database project. Hell yes. The geniuses need it. It is in our interest. If you are reading this it probably in your interest too.

The data exchange called T1D Exchange is a project sponsored by the  Helmsley Charitable Trust.  These folks are making some wonderful commitments to make lives touched by type 1 better. Cool stuff is coming and I look forward to hearing and sharing more about their efforts. That’s later.

Right now we have a roll to play. Sixty clinical sites are working to help build the data exchange. If at your next endo visit there is a visitor looking to get you to participate - step up  ...err... make that sit down at a computer fill out a few screens of data. The sharp as a lancet dudes need a registry and we all should be in it.

 We are in. Are You? 

FTNW: IV PREP Recall

http://www.fda.gov/Safety/Recalls/ucm239219.htm

http://www.pharmabiz.com/NewsDetails.aspx?aid=61752&sid=2

I don't see any instructions about what to do other than toss the stuff out. Smith didn't have any alternative other than wait. I was told to contact our supplier for a refund.

Smith & Nephew recalls selected lots of IV PREP Antiseptic Wipes from US markets

St. Petersburg, Florida
Tuesday, March 08, 2011, 14:00 Hrs [IST]

Smith & Nephew's Advanced Wound Management division announced a US voluntary nationwide recall of selected lots of IV PREP Antiseptic Wipes (product number 59421200) manufactured for Smith & Nephew by The Triad Group.

This Smith & Nephew recall follows an earlier nationwide recall initiated by The Triad Group for alcohol prep products, pads, wipes and swabs due to concerns about potential microbial contamination with Bacillus cereus. Use of contaminated alcohol prep pads, wipes and swabs could lead to life-threatening infections, especially in at risk populations, including immune suppressed and surgical patients.

Smith & Nephew has halted all shipments of IV PREP Antiseptic Wipes manufactured for Smith & Nephew by The Triad Group. All customers and patients are advised to discontinue use of IV PREP Antiseptic Wipes immediately, as their use could result in localized or systemic infection. All customers should dispose of or return IV PREP Antiseptic Wipes to Smith & Nephew.

Smith & Nephew is advising all distributors and kit packers who utilize IV PREP Antiseptic Wipes as a part of their kit components to discontinue use of IV PREP Antiseptic Wipes immediately, and issue a sub-recall to their customers.

The specific lot numbers involved in the recall are: 9K141, 9K142, 9K143; 0F131; 0F140; 0G249; 0G255, 0G256; 0G259; 0K139, 0K140, 0K141; 0K193; 0M180; 0M216; 1A212, 1A213. IV PREP Antiseptic Wipes represent a small part of Smith & Nephew's overall advanced wound management business.

As a precautionary measure, and out of concern for patient safety, Smith & Nephew contracted an independent laboratory to test all lots of IV PREP Antiseptic Wipes manufactured for Smith & Nephew by The Triad Group. The results showed there is no data to suggest that Smith & Nephew's IV PREP Antiseptic Wipes have been compromised. To date, there have been no reported adverse events related to this voluntary recall.

Smith & Nephew is committed to providing customers with high quality, reliable product and has issued this voluntarily recall as a prudent, cautionary and conservative measure to assure patient safety and product performance. Smith & Nephew is working closely with the US Food and Drug Administration (FDA) on this recall.

For preparation of the skin prior to injection or venipuncture. It is flammable, keep away from fire or flame. Do not use with electrocautery procedures. For external use only. Do not use in or near the eyes. Discontinue use if irritation or redness develop. If condition persists for more than 72 hours, consult a physician.

Smith & Nephew is a global medical technology business with global leadership positions in Orthopaedics; including Reconstruction, Trauma and Clinical Therapies; Endoscopy; including Sports Medicine; and Advanced Wound Management. Smith & Nephew is a global leader in arthroscopy and advanced wound management and is one of the leading global orthopaedics companies.

Editorializing Conjecture on CGM Pump Intergration

Europe is going to see Dexcom integration into insulin pumps before those of us on the left side of the pond, or so it seems from Dexcom’s earning call. We have to deal with Zombies first. Oh and it is going to named after a Pontiac.

Dexcom’s earrings call is online. You are welcome to go give it a click. I did. It's here: http://biz.yahoo.com/cc/0/121120.html

I listened for news on the integration of CGM into insulin pumps. Dexcom is working on that with both the Pod People and Animas. (I wish I had as good a nick name for Animas as Pod People is for Insulet with visions of the classic 1956 movie Invasion of the Body Snatchers, if you think of one post it as a comment - must be a 50s B movie.)

Where was I other than Zombie Invasions?

Oh Yeah! Earnings calls, the bit on the next generation of Dexcom sensor and combination Dexcom/pump products starts at about 11 minutes into the call. The good news: Dexcom received a CE mark for the 4th generation sensor. That is the one that will be integrated into the pumps. Dexcom expects it to launch in Europe with a Animas pump in the first half of 2011. The call even mentioned the combo pump thing has a name, “The Vibe.” Well, if you are going to name something after a Pontiac, Vibe is better than Aztec but it is no GTO.

Meanwhile the zombie invasion continues within the FDA or at least as far as getting pump/sensor approvals is concerned. Oops, that was a forward looking editorial statement based on conjecture. What I mean to say is that Dexcom publicly reported actual “constructive discussions” with the FDA on what it may take to get a gen. 4 sensor approved here in these United States.

The bit that confused the heck out of me (not that it is all that difficult to confuse me) is apparently in trials the FDA now considers glucose level manipulation a significant risk.

Really?

Hello FDA - Those living with type 1 kinda hav’ta to manipulate glucose levels 24/7. The manipulating blood glucose up is called eating. Bringing, sorry, manipulating blood sugar down is the whole insulin thing. What you are calling significant risk is what families living with type 1 diabetes call daily living. While I appreciate all the carefulness, I kinda, hav’ta, wanta call BS on the FDA for acting like a bunch of zombies pretending they don’t know there is a lot of glucose manipulation going on already.  Better tools would minimize the whole diabetes varies thing and therefor risk in actual daily lives. Doh! that was editorializing conjecture too.

So it seems commercialization of Dexcom / Pump combo is 6 moths off for Europe.  For us, just like it has been for the last few years, best case is a year here. Seems like the same time system as the cure - you know the one that has been ten years down the road for decades.

disclosure

I have two T1 teens, own a few shares of Dexcom and like movies more than earnings calls.

/disclosure

Find Balance Through Experiments

(Hint: Read the Book, Get the Coach)

   Ginger Vieira’s path from a 13 year taking her first insulin shot to a champion athlete surprises even herself. “Ten years ago, if you told me I could set 15 powerlifting records as a person with diabetes, I would’ve laughed!” Yet she did it. Ginger set fifteen records in drug-tested powerlifting. While proud of the records it is the joy of learning and practice that leaded to her achievements that she loves. In her new book, “Your Diabetes Science Experiment,” Ms. Vieira shares her process of setting and achieving goals to live successfully with diabetes.

   Ginger draws parallels between her athletic training and managing diabetes. One key similarity is setting goals.  She break up challenges into steps then starts to take those steps. In this way a record isn’t one championship lift, it is the art of refining technique and enjoying the how each phase of training feels. Diabetes isn’t a life of shots, it is learning to experiment with management to, as she says in the subtitles of her book, “Live your life with diabetes, instead of letting diabetes live your life.”

    Type 1 diabetes is disease in which the cells that make insulin are destroyed by the body’s immune system. Insulin is needed to get energy from the food a person eats into the cells of their body. Without the ability to make their own insulin a person with type will require insulin injections everyday for the rest of their lives.

    Some of  what Ginger learned about diabetes came from a classmate, ‘I diagnosed myself at my 7th grade heath fair,” she explained. “A boy in my class did a poster on diabetes. I read it and said, ‘I’m everything listed on his board.’ My mom didn’t believe it. A week later I was in the hospital.”

   Those first days Ginger was overwhelmed by diabetes and self care. She remember crying in the hospital and still recalls the feeling of intimidation when her doctor first asked her to give herself an insulin shot.  “She just told me, ‘You’re gonna do it.’ I thought she was crazy but I did it,” Ginger said.

   That shot was an early accomplishment but she, like many with diabetes dealt with misconceptions from others. As a youth she enjoyed activities but her participation in organized sports stopped not long after her diabetes diagnosis. Ginger recalls her basketball coach would make off hand comments about her condition. “I noticed that if the coach saw me test my blood I would be kept out of the games.”

   Her experience with coaching changed. Following the feelings of successfully taking control of her heath in college Ginger became more serious about lifting. In the summer before her senior year of college she challenged herself to get healthier. “I cleaned up my diet, stopped drinking and started working out.” After a a few weeks at the gym. She loved the way she felt and felt empowered by those feeling. She also found the amount of insulin she required decreasing. She still needed insulin but less of it.

   Ginger hired a personal trainer and fell in love with weight lifting. Through lifting she found a new feeling of control of her health. Her trainer was familiar with diabetes form his physiology background. He challenged her to understand how her blood glucose levels impacted training. She began to discover relationships blood sugars and desired results. Ginger began tracking these relationships and how different types of exercise led to different outcomes.

   She learned high blood sugars prevented recovery and building muscle. Aerobic and anaerobic activity, which describe different exercises in terms of oxygen use, effected sugar levels different. This has implications for successful training. Ginger explains these differences and more in her book. She also provides guidance to improve both athletic and diabetes control outcomes.

   The Diabetes Online Community's favorite Diet Coke addict, Scott Johnson had lived with type 1 diabetes for three decades before finding motivation working with Ginger as a coach.  “It’s easy to think that her coaching is all about exercise and fitness,” he said. Yet only one of the three goals he set working with her was about exercise. The other two were about balance in diet and insulin use.  Scott says that as he broke down steps around his diet and insulin balance goals he uncovered anger about the amount of effort he faced, as a diabetic, around food. His appreciation of these deep emotions helped Johnson progress toward his exercise, eating and insulin goals. Ginger’s coaching of Scott follows the lessons she learned on her own journey.   Through her book Vieira coaches diabetics to systematically experiment their way to success.



   Learn more at Living In Progress, ginger web site. While you are there check out her video series.

"Not Justin Bieber."

Tim's post, "Ask a Diabetic Rock Star." from across the puddle at Shoot Up or Put Up  is about Brett Ryan Stewart who Tim calls, "is a gifted young, up and coming American musician who writes and plays some good music described as “indie/pop peppered with a southern influence”." Now I am not one to give Tim all that much respect but when I read this exchange I had to go check Brett Ryan out.


Tim: Describe your music in 3 words.
Brett: Not Justin Bieber.

Tim was right. (I know who would have thought it?) Good stuff. There is an album coming out Feb 28. So now is a good time to check out some new music.

Turns out young Mr Steward grew up in the Philly area. Small world when you hear about your neighbors from a crazy Britt.


Thanks Tim - You're OK even with the sideburn envy.

Cutting Cords

Phone cords.

I managed to cut the cord and keep the number - the land line phone cord while keeping the number we have shared for years. It took a few steps but the savings are worth it.

I know it worked because CVS just called to tell me Connor’s prescriptions were due to renew. They only know one number - our land line. Figures diabetes would be the first message through the crazy gyrations it took and at the same time it makes it clear the value in keeping that old number.

While it is kind of archaic in a mobile world we want a land line. If for nothing else to send faxes and getting calls from places that have the number - having a land line in the house has value. It should be the number everyone from family to CVS knows. The key is to do it both inexpensively and in a way that protects that number if the new service provider were to disappear in the changing telecom world.

While you can keep you number with them, the name brand land line and voice over internet services from MaBell, Comcast and Vonnage cost $25 to $30. That is more per month than I want to pay. Magic Jack is cheap but requires a commuter running all the time. CNET clued me into a device called NetTALK. Like Magic Jack is provides real cheap voice over internet and it connect directly to the home network - no computer required. I bought one. A year of phone service is about what Comcast was charging for a month. It comes with a new phone number and doesn’t support porting the old. So how to keep the number?

Google Voice is a brilliant service that creates a virtual phone number that can do all kinds of stupid phone tricks, like forward calls to multiple lines and morphing voice messages into text and sending them as an email. Just last moth they started porting cell numbers into Google Voice.

There in lies the magic.

I ported our land line to an ATT Go phone, minimum plan $15 bucks for 30 days. We had a old cell phone that worked with the line. It took a few days to port the number over to ATT from Comcast. Then I ported the Go Phone to Google Voice for $20. There is a little art to that as the ATT account number and line number are not the same thing and Google needs both. I found a post on Google Voice support forums that said just call ATT they will give you the actual account number. Sure enough. It takes a day to post the number out of ATT and into Google Voice.

So a few few bucks invested and my good old land line is now a virtual number at Google Voice ringing the house phone running on NetTALK. I can point the number to ring any phone number or numbers I want.



With the NetTalk device and fees for the porting tricks we will break even in about three months. Next year the land line cost what we were paying every month. I like that but then I can be cheap.

Now if there were just a Google Pancreas service I could cut the pump cords too.

New Study - Context Matters.

Who Would Have Guessed It?

Roche offered an opportunity to hear the results of a new research study on T2 and self monitoring. Dr. Andreas Stuhr was going to be presenting and being a fan of Andreas, I joining the conference call this afternoon.

This was a study of type 2 diabetics who do not use insulin. There were two groups studied. Both groups had similar access to testing equipment, doctors and heath care visits. The difference was one group used a paper based tool to put the data from blood test into context. Both groups lowered their A1C. So being in a study and having access to a meter and doctors lowers A1C. The group with a structure tool to collect data and talk about it with their health care team had a more significant drop in A1c than the control.

The tool is simply a paper form. It is available free here.  You don’t need a Roche meter to use it but you need a meter. The tool itself is not the conversations with a health care provider.  It may be a place to start.

So while it sounds a lot like "we hold there truths to be self evident" putting context around the data you collect can provide better results.

Context Matters.

/begin disclosureI have been to Roche’s diabetes social media summits. They pay my way. I speak my mind. I suspect there are still photos of my sign from last summer's conference floating around with circles and arrows and a paragraph on the back to be used as evidence against me. (Feel free to link the photo in a comment if you have it, or Alice's Restaurant for the circles and arrows.  As a hint the sign was two words and the words had the same first letters as Blood Sugar.)  Roche invited me back - go figure. They doesn’t push product info at us. So much so that as a group we expressed and interest in hearing news from them. This call to the social media summit group was part of the sharing we asked for. 
/end disclosure

DC Type 1 Diabetes Research Summit

The Capital Chapter of the JDRF brought together a collection of professionals who shared the research they are doing.  In most cases they also shared a personal connection that drive them to try to improve the lives of people living with type 1 diabetes.

In addition to the speakers there were a number of tables where advocates, pharma and researches could present there work in a trade show like environment. The organizers had a full kids program to allow families to participate without kids becoming overwhelmed by the scholar’s presentations.

For those with the experience, it was like a day at Friends For Life where you do all the research track presentation while the kids hung out (with supervision.) There was even a similar buffet lunch experience - the kids ate chicken fingers.

There were maybe three to four hundred people there. Pretty impressive for a cold Saturday in January.

I was happy to join with a number of other bloggers and made my first feeble attempt at tweeting in real time. Here the thing, I don’t quite know how to condense complex ideas into 140 character synopsis and both convey meaning and still pay attention. I don’t think I did either well - fortunately that wasn’t the point of the day.

I was very happy to see a JDRF local chapter take on such a significant roll in supporting the families who walk for JDRF. I was some what gladly drove three hours to attend and was impressed by the researches both in their work an in their passion driven by personal connections to type 1.  I think that connection gets lost. I find it compelling to know the guy running the study at BU on the bionic pancreas is motivated to make his child life better.

It was also enlightening if not encouraging to hear about the process of working with the FDA. The FDA is cautious. They are slow. They are careful. That caution can be seen as slowing down the process of getting advances in care to the market. However I think it is important to know about how the FDA approaches risk. It is good to know the JDRF is in regular contact working with the FDA to keep the risks of simply living with diabetes on the table.

I think it is appropriate and useful for the JDRF to work in conjunction with industry to help promising advancements get through that review process. Particularly those products that focus more on the smaller part of the diabetes market, those living with type 1.  In that context events such as this help clarify why JDRF should be working with the for profit side of the industry. Advances need to come to market.

I think that understanding the process of research, commercialization and approval is important. I think good communication helps both develop support for innovation over the long term and inspiration to do better with what we have in the short term.

I was very pleasantly surprised by the scope and quality of the Capital Chapter’s Research Summit. I am thankful for their hard work. I am appreciative of the sponsors support. I think the Capital Chapter of JDRF offers a model for other chapters looking to engage with those living with type 1.

FTNW: Artificial Pancreas and Pregnancy

A report on a small AP study with pregnant T1 diabetic women.

Not many people in the study and it doesn't compare results to manually managing blood glucose but it is still an interesting read.

From: http://www.nhs.uk/news/2011/01January/Pages/artificial-pancreas-pregnant-diabetes.aspx