August 29, 2013

FDA / Sponsor a Patient Meeting on Diabetes

The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes.

That is unacceptable.

Four “slots” remain open (view the current list), and we want the FDA to add diabetes to its meeting docket for 2013.

According to the American Diabetes Association, nearly 26 million Americans have either type 1 or type 2 diabetes, and an additional 79 million have prediabetes. Those numbers are also increasing each year – the CDC estimates that if current trends continue, one in three US adults will have diabetes by 2050.

No one disputes that diabetes is one of America’s – and the world’s – most serious health epidemics. In 2012, more than one in five total US healthcare dollars was spent on diabetes, totaling $245 billion, and the government covered 62% of those costs, meaning everyone is paying for this epidemic. Despite growing needs, research dollars have also leveled off.

New therapies need to be investigated, tested, and brought to market, and as part of that process, the FDA must understand the daily challenges that patients face.

We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.

Our voices need to be heard.

Please sign this petition to urge the FDA to sponsor a patient meeting focused on diabetes – and the sooner, the better.

Thank you very much.

You can sign the petition here:

August 21, 2013

Come Play!

My friend Scott Johnson won’s Athletic Achievement award and I think that says a lot. Scott is into athletics for all the right reasons; joy, sportsmanship, camaraderie, and health. Scott wants everyone he meets to join the basketball game and play for the simple fun of playing. I hadn’t played basketball since the 70s, Scott made me feel welcome on the court. Same with a young kid who was standing there watching the game, Scott handed him the ball and invited the kid onto the game. That is why, for me, he is a role model. Athletics isn’t about self aggrandizement, it isn’t about winning, to Scott it is about joining with others and playing.
play |plā| verb
1 engage in activity for enjoyment and recreation rather than a serious or practical purpose:
2 take part in (a sport):
I am proud of Scott. 
( I am proud of Kerri the Dancing Check too.)

This is not to say I have anything against serious sports. I was screaming like the lunatic I am, when Charlie Kimball’s team won the Indycar race at Mid Ohio. Team. Racing is a team sport with all kinds of different skills contributing to a common effort to make the team's car get there first.

Today, I would love you to join me in some play. I want you to be part of a team, one that needs a lot of players who are willing to do something a little outside their individual and collective “box.” Join the StripSafely Tweet In.
  1. Go to the StripSafely Twitter Page, 
  2. Find your Elected officials, Listed by State. (Maybe include the Congressional leadership too)
  3. Click the Tweet about Meeting Link.
That will send a Tweet asking the representative asking them to send a staffer to the September 9 Diabetes Technology Society meeting. That is easy and it isn’t asking a lot from Congress, just being aware of our need for accuracy.

Some feel that politics is a dirty partisan game, I know others have felt that way. They found that speaking up from principal was not only empowering but could be fun too. Maybe our voice can help reduce  partisanship by not playing that game. Just be real.

Let's make this fun! Tweet the 'stock' message then improvise some of your own tweets, share why accurate diabetes testing matters to you. Be nice, be a good sport, no trash talking, join with others and play. Maybe as a team we can all win the race to more accurate glucose testing.

Lets make this a team effort about joy, sportsmanship, camaraderie, and health. 

August 16, 2013

New Kind of Mail - With Stamps!

I just put stamps on letter to my Senators, Congresswoman and the President.

Real snail mail letters based on this Sample Letter at 

I am asking my policy leaders to send a staffer to the 9.9.13 Diabetes Technology Society meeting. That aide can help my elected officials understand that there is an issue with test strip accuracy.

You can help. You can write too (Hint: Use the sample!) BUT can you find cooler stamps than these Pixar gems?

August 15, 2013

One Question, One Community, One Voice

Yesterday I had the pleasure of chatting with Bill Woods at Glu about test strip accuracy. MyGlu has been kind enough to write both this article and dedicate the next two Question of the Day at to gathering information about how we, the PWD community, feel about meter accuracy.

Please, answer the questions.

I know this will help.

I have been asked by the Diabetes Technology Society to represent patients on a panel at the September 9th meeting on meter accuracy. I am honored to do so. Our replies to these MyGlu questions of the day will give me the chance use the data they gather to speak for us all. One voice from one community answering the one question -  Yes! Accurate Diabetes Testing Matters.

August 13, 2013

The grip strength these little buggers have...

This article by Bill is simply brilliant. I love this in so many ways but maybe this best, "until you severally underestimate the grip strength these little buggers have!"

Bill talks about the fear of testing and discovering one of the kids may be likely to get T1D. This is real honest stuff, done very well.

Bill - Nothing wrong with having a kid who may get D. Love your reasons for testing.  In the worst case - one gets diabetes, you have a kid with diabetes. So do your folks, me, lots of friends Glu. We're OK. (Well they all are, I am a little iffy.)

Worth the risk 'cause how else can you experience just exactly how much grip strength they actually have?

August 6, 2013

Good FDA Blog on Data Interoperability

Great FDA blog post on data interoperability with devices in the hospital setting. Let move this into the patient world as well as clinical settings.

I like this part:

  • An infusion pump that administers medication to a patient also connects to the hospital’s electronic health record system where the physician inputs orders for specific amounts of medication to be delivered at specific times. If the infusion pump and the electronic health record are not interoperable, with clocks that are synchronized, medication errors could occur. 
Ok what about insulin pumps, cgms, meters and life outside the hospital with diabetes? 

My YDMV post on the topic

- Posted using BlogPress from my iPad

August 2, 2013

FDA Blog on Gluten Free Labeling

From the FDA:

Gluten-Free Labeling Consumers Can Count On

Posted on  by By: Virginia A. Cox
Celiac disease is a serious health issue that can lead to critical complications if not treated.  
While there is no cure for celiac disease (CD), there is one way to manage it – following a gluten-free diet. The only choice for the up to three million Americans living with CD is to adhere strictly to a gluten-free diet, avoiding proteins that occur naturally in wheat, rye, barley and cross-bred hybrids of these grains. To do otherwise is to risk gradually damaging the intestines, preventing the absorption of vitamins and minerals and leading to a host of other health problems, including nutritional deficiencies, osteoporosis, miscarriages, and cancer. 
Without a standard definition of “gluten-free,” people with gluten-related health problems can never be certain if a food is likely to be tolerated by them. So as a person living with CD for over a decade, I’m delighted to say that today, FDA is mandating a new rule on food labeling that will help people with CD – people just like me –be able to trust what the words “gluten-free” mean on their food purchases. Not only will this help those with CD manage their disease more carefully, but it will also improve life for many others who are gluten intolerant or gluten sensitive. 

More at: