Thought for the Day

Tuesday, March 30, 2010

What's Wrong with Team Type 1?

This post has been rumbling around in my head for a long time. I've been reluctant to write it.
I know that it's easier to criticize than to actually do amazing things, and I give Team Type 1 credit for doing amazing things. I know I am just sitting on the sidelines pointing out little problems. You might even call it nit-picking.
But the fact is, Team Type 1 isn't perfect. It could be better. It could be more encouraging to more people. This post will deal with one of the two main problems I have with Team Type 1.
Here's a quote from the recent Weekly Update from Team Type 1:
In terms of diabetes, 74% of Team Type 1 has either type 1 or type 2 diabetes. 56% of us have type 1 diabetes, 18% have type 2 diabetes and 26% of us do not have diabetes. This fact makes Team Type 1 unique in that it is an organization comprised primarily of individuals with diabetes inspiring others to better manage their diabetes.
My problem with this quote is the fact that Team Type 1 is not at all unique in being an "organization comprised primarily of individuals with diabetes inspiring others to better manage their diabetes." It is not even unique amongst athletic organizations of diabetics inspiring other diabetics.
Although Team Type 1 has rightfully gotten a lot of press, although they act as if they are the only people doing what they do, they are actually a small organization in terms of membership, diabetic or otherwise.
That's all right. There is room for inclusive clubs like Triabetes and Glucomotive, open to every diabetic who wants to become a member, and exclusive, elite clubs, like the Team Type 1 RAAM team that has repeat wins cycling across the United States.
But Team Type 1 should not be promoting the idea that they are the only "organization comprised primarily of individuals with diabetes inspiring others to better manage their diabetes." That tends to reinforce the idea that there are only a few athletic diabetics.
Team Type 1 should acknowledge that there are many, many diabetics out there living active, healthy, athletic lives. They should promote awareness of the existence of Team WILD, Triabetes, Glucomotive, MAD (Mountains for Active Diabetics), HypoActive, Type 1 Rider, and other organizations "comprised primarily of individuals with diabetes inspiring others to better manage their diabetes."
I apologize to the organizations not mentioned. I know there are more, but these were the ones that leapt to mind for me.
I know that members of Team Type 1 are aware of the existence of these other organizations because there is a lot of cross-over. Many athletes are members of Team Type 1 and other diabetic athletic organizations. Matt Vogel of the Team Type 1 Triathlon team is the founder of Insulin Factor, another organization of this type.
Personally, I would like to see Team Type 1 do more to use their prominence and public attention to promote membership in DESA and other organizations like those I've mentioned.
I know that they do make occasional appearances that help to promote other diabetic causes, and that's a good thing. Tom Kingery of the Team Type 1 Triathlon Team has visited the Phoenix area twice in the past few months, once for the Team Diabetes marathon training program, and once for the Tour de Cure.
I know his help was greatly appreciated by the ADA, and local diabetic athletes were very happy to meet him and talk to him.
The current Team Type 1 web site is a work in progress. There are a lot of links there that say, "Coming soon..." I hope that as the web site comes together, it becomes a place where people with diabetes who want to become athletes, and not just fans of elite athletes, can find links to resources that can help them.
If Team Type 1 is reluctant acknowledge that these resources exist, that doesn't seem likely to happen.

Saturday, March 27, 2010

I Blame Oprah and Oz

I thought that I developed type 1 diabetes as a teenager, I was diagnosed at the age of 15. Imagine my surprise to find out I was born with it. Or maybe not. Was I born 35 years ago?
Let me start over. A while back, I was asked, in order to help promote the Phoenix Tour de Cure, to submit a brief bio to Sweat Magazine, which serves the local amateur athletics and fitness community. In a couple of paragraphs, I would explain who I was and why I was riding in the TdC.
So I gave my bio to the TdC coordinator, who made slight changes to a couple of lines to clarify and promote the Tour, then sent it into the magazine.
When it came out in the March issue online, this was in there:
In spite of being born with type-1, Nairn strives to live an active and healthy lifestyle. Combating the life-threatening nuisance for over 35-years, he decided to join the Red Riders for the Phoenix Tour de Cure come March 13.
So you can understand my confusion. I kind of like the description of diabetes as a "life-threatening nuisance," but this other stuff that was not in the original bio isn't right. I am not 35 years old. I have not been a type 1 diabetic since birth.
Where did that come from?
I blame Dr. Oz and Oprah.
Dr. Oz has said at least once on television and twice in print that type 1 diabetics are born with it. This simply is not true. Although it happens sometimes, it is rare for someone to be born a type 1 diabetic.
Another blogger has said that Dr. Oz will never answer a question by saying, "I don't know." Instead, he will just make stuff up.
This is true.
Sadly, he doesn't even have to be asked a question before he will start just making stuff up. If he is pontificating in front of an audience, and he gets into an area where he doesn't know very much, he will just make stuff up.
Sadder still, the things he makes up enter the public consciousness as facts. He's a doctor. He went to Harvard. He's on TV. He's wearing hospital scrubs. It must be true.
I don't care if you're a plumber or a mechanic or a gardener or a software engineer like me, you know people in your field who won't say they don't know. They just make stuff up. Dr. Oz is that kind of physician.
He discredits his profession and the schools he attended and Oprah Winfrey. He spreads ignorance and misinformation. I could speculate on why he does that. I was about to speculate, but I will refrain. I will just reiterate that it is a fact, he just makes stuff up.
So someone writing for Sweat saw in my bio that I was a type 1 diabetic and, knowing that type 1 diabetics are born with it, added that I was born with it.
I wrote to the editor, and she says this story will probably be fixed in the print edition, but it's still wrong on the web site.
Oh, well. I blame Dr. Oz and Oprah.

PS: There is a twisted way of looking at this issue which might permit one to say that "Type 1 diabetics are born with it."
There appears to be a genetic predisposition to type 1 diabetes in many of those who eventually develop it.
However, the same is true for type 2 diabetics, so following that logic, type 2 diabetics are born with it.

Friday, March 26, 2010

Diabetic, or Person with Diabetes?

This question comes up all the time. Is it wrong for people who happen to have diabetes to be called diabetics? Does that imply that diabetes is the most important thing about them?
Should I tell people that I am not a diabetic, I am a person with diabetes?
This post on I Run On Insulin prompted me to reply with a succinct description of my feelings on this topic.

Words like "diabetic" are not really that rare. I have heard celiac, hemophiliac, asthmatic, arthritic, etc.
Think of alcoholic, and all of the derived "holic" terms, workaholic, shopaholic, chocoholic, ...
Really, whenever we say someone is an addict, instead of saying they are a "person with an addiction" or "addicted person" aren't we doing the same thing we do with "diabetic" and diabetes?
Even "maniac" is a word derived in this way to describe someone with mania.
Think nymphomaniac, satyromaniac, egomaniac, etc.
Hardly rare.
I don't find "diabetic" offensive when used in the correct context, when it's appropriate. In a situation where it would be inappropriate to call me a diabetic, it would also be inappropriate to describe me as a PWD.

I hope that explains my position. Feel free to comment.

Saturday, March 20, 2010

Glucose Meter Accuracy and the FDA

A topic that many diabetic bloggers have weighed in on recently is the fact that the FDA is planning a public discussion of "the clinical accuracy requirements of blood glucose meters...." The hope among many diabetics is that the FDA will decide to require greater accuracy from these devices. Currently, they are allowed to be within plus or minus 20 percent of a clinical blood test.

If you have an opinion, you have until April 10 to tell the FDA here.

Here are some of my thoughts on the issue.
The FDA, in its notice of this public meeting, explains:

Blood glucose meters are being used in clinical settings and at home in ways that are not within the intended use of the devices as evaluated by FDA. For example, glucose meters are increasingly being used to achieve tight glycemic control despite the fact that these devices have not been cleared for this use.

Excuse me, but that just doesn't cut it. The American Association of Clinical Endocrinologists (AACE) recommends that diabetics have a target A1c of 6.5, with a target blood glucose level of less than 110.
If the FDA rationalization above is relevant, then we can ignore the target blood glucose, because we don't have anything to test blood glucose with, not if we're trying to adhere to these guidelines. According to the FDA, it is not the intended use of our blood glucose meters to keep our blood sugars that tightly controlled.
Of course, if these meters aren't intended for this purpose, then we are missing a key piece in the diabetes management system.
Reading any reference on diabetes management, consulting with any manual on how to use an insulin pump, an insulin pen, or a CGM will show repeatedly that we require accurate meters to do what doctors, CDEs, and medical device manufacturers are telling us to do.
Whether or not the FDA and the meter industry want to concede the point, these meters are for "tight glycemic control."

To determine how accurate the meters should be, I suggest they look at how accurate the dosing of insulin is.
Look at the lines on the side of a 1/3 cc insulin syringe, or the increments on an insulin pen. Consider the insulin pumps with increments of 0.025 units of insulin.
Blood glucose meters should approach this level of accuracy, or something is out of whack.
If it's OK for my blood sugar reading to be 30 points off, why should my pump be able to deliver increments of less than half a unit?

Indeed, why am I not still just peeing on a color-changing strip and taking one shot of long-acting insulin a day?

To see some other blogs on this topic:

Scott's Blog - Tell the FDA +/- 20% Is Not "Good Enough" Today

Diabetesaliciousness(tm) - Meters = Diabetes GPS System!

Six Until Me - Accuracy in Glucose Meters

Your Diabetes May Vary - What is Accuracy?

Friday, March 19, 2010

Phoenix Tour de Cure 2010


Here I am at the Phoenix Tour de Cure last Saturday. I know how badly the outfit clashes, but I wanted to represent both the Red Riders (with the jersey) and Triabetes (with the shorts).
It was a beautiful, sunny day on a course on the outskirts of Phoenix running up past Anthem and New River. I took it easy and stopped at all five aid stations and one Burger King on the 64 mile course. No I didn't go in for a burger, I just figured it would be quicker to make a pit stop there than to wait in line for a port-a-john at an aid station, and I was right.
My new 2009 Kestrel Evoke performed great. I had never ridden it before, never used the integrated brakes/shifters before, but it all worked fine. I figured out the shifters within the first thirty miles, none the worse for the wear.
I had worried that my Kestrel Evoke would seem tediously slow compared to the Kestrel Airfoil I had been riding last year. (This was my first ride since November 2009.) The Airfoil costs about four times as much as the Evoke. But it seemed great to me. I was surprised how easy it was to crank it up over 20 mph on a flat stretch.
I look forward to riding it again tomorrow.

Tuesday, March 9, 2010

My New Ride

As you probably know, I'll be riding in the Phoenix Tour de Cure on March 13. (That's my birthday. It's not too late to donate if you're wondering what to get me.) The big question leading up to this ride has been what bike I would be on. The Kestrel Airfoil I rode last year went back to Triabetes, where you can buy it now if you want a bargain on a fantastic bike. Since I gave that one up, I have not been on another bike.
But on Saturday, I went to TriFest with my brother, Jon, and met up with Peter Nerothin and Kevin Burgess, Triabetes Teammates who had set up the Triabetes tent there. I wanted to help out Triabetes a little, but mostly, I wanted to see what was shaking at TriFest, and possibly get a deal on a bike.
Well, I got a great deal on a 2009 Kestrel Evoke. It felt good during the fitting, but I haven't had a chance to ride it outside yet. The metric century Tour de Cure may be my first ride on that bike. I know that's not the wisest thing to do, but it's about par for me. That just seems to be the way I do things.
It should be a blast, riding with hundreds of Red Riders and people concerned about diabetes. This is actually a great time and place for a shakedown cruise. There will be all kinds of support for me and my bike out there, and the forecast is for beautiful weather.

Tuesday, March 2, 2010

2000 Miles to Chicago

So it's about 2000 miles from Chandler, AZ to Harpo Studios in Chicago, IL, where Oprah and Dr. Oz film their TV shows. If I were to bike the distance, I suppose I could do around 50 miles per day for 40 days. It would be possible to do it faster.
Running, I wouldn't want to schedule myself for more than 20 miles per day, which would mean it would take at least 100 days.
I'm trying to think about how I could fit it into my life to do an epic ride or run out there to tell O&O they are full of crap.
At this point, this is just a crazy idea that I haven't really thought through. Don't count on it happening. It's just what I would like to do, if I didn't have any responsibilities. It's a dream.
In my dream, I would set out for Chicago and get more and more publicity on the way until Dr. Oz started to think, "Gee, maybe I should set the record straight on some of the absolute hooey I have been repeating over and over in print and on television."
And of course, Oprah might ask herself if Dr. Oz is really as smart as she thought he was.
Then by the time I got there, we would have nothing left we disagreed about, and I would just go home.