Monday, November 7, 2011

Fighting for One

The JDRF ran an ad in the New York Times and Wall Street Post on November 1, marking the start of Diabetes Awareness month and the push for more general public awareness about the FDA regulatory delays impacting our D-Lives.

As many reading this probably know, the ad said that one in twenty people with Type 1 will die from a low blood sugar. (YIKES!!!)

The JDRF ad, featuring Piper, age 8.
That 1:20 stat caught many off guard and generated a mixed response from those in our Diabetes Community, some agreeing with the point of the ad and some questioning the accuracy and source of that information as well as the overall intent of it.

In response, the JDRF offered a Q&A that cited several studies ranging from recent years and dating back decades. A forum discussion began, and then another, with Mr. Artificial Pancreas Aaron Kowalski (a longtime Type 1 himself) responding about the evidence behind the stat - that it comes from the cited data and a ratio describing the chances Type 1s face of possibly dying from a Low during a lifetime.

Much of it made sense and at first blush the cited data seemed to justify the advertisement. But something about it troubled me... There's some concern the 1:20 ratio is based on outdated, pre-1993 data when D-Management was much different. That the stat isn't accurate, or it's exaggerated and more accurately an "apples to oranges" comparison of information. Some believe the number is conservative, because we really don't know how many death-causing-Lows occur and the number is probably very under-reported in just the U.S. alone.

Maybe I just don't get it, because I'm not a numbers guy or a scientist. UPDATE: I did some basic calculating one night recently based on the studies cited by the JDRF in using this stat, and thought I proved to myself that the number wasn't reflective of reality. As it turned out, some misplaced decimal points and bad math doomed my math... (told you I was mathematically-challenged.) 

Whatever. This isn't about the stat, really. It's about the reality that people die from these Lows way too often. That is a scary reality that those outside our Diabetes Community don't truly get.

THAT is why we need to do whatever we can to cut these blood sugar swings that lead to Highs and Lows. If we can't cure diabetes now, we need a way to curb these dangerous situations in the meantime.

No, this is not about the stat and it's accuracy, even though that's an issue connected to this and one that spawns a different discussion - about whether any statistical manipulation happens in these types of efforts and overall whether the end justifies the means. I don't pretend to know the answer to that, but do think there's legitimate arguments and concerns on both sides of the discussion.

To me, it's about doing what's necessary to play this game and get needed technology for our Diabetes Community. And to do what's needed, we need BOLD, STARTLING, and TO THE POINT:

Kids die. Adults die. All too often. And instead of bickering about the numbers reflecting the "actual" amount of deaths, we should be focusing on preventing any death that is preventable. Whether it's one, 20, or many hundreds and thousands of people. 

Right now, we as a United States are failing to do that. We're behind the eight-ball, when other countries are using a piece of technology to save lives - studies and personal stories prove that. Technology is technology and isn't perfect, just as we aren't, but it helps and can prove life-saving.

The FDA is one of the big road blocks to making this happen. Not the only one, but a hurdle we have the most ability to influence and guide through this process successfully.

Simply, we need this public awareness in order to motivate our lawmakers and FDA regulators that this is important. They need to listen to our patient voices, because we're telling them about what OUR real concerns are and what matters to us most. We are the ones saying that what the FDA is asking about, what they seem to expect before offering approval, isn't what we People With Diabetes are thinking is most important.

We need this type of technology in order to save lives NOW, but also because of the potential it has to help us learn more about the bigger puzzle of diabetes. That knowledge helps us move closer to a real cure. Everything fits together, and as of right now the U.S. is behind where it could and should be in getting this technology out there for our benefit.

Whatever the rate-of-death-from-Lows may actually be, I know it’s too high and even the possibility of this happening is enough to warrant this kind of bold advertising. In my honest opinion. I've been lucky enough in my lifetime to not become one of those who've succumbed to a Low. God knows I’ve been close, on the edge of slipping into that ravine many times. But I've been pulled back, thanks to my own actions or those of my Loving and Supporting Spouse, my parents, and paramedics. Fortunately, I'm one of those 19 who have not died from a Low - and while that makes me happy to some degree, it makes me even sadder because it's not fair to know that there's even one person who hasn't been so lucky.

While I don't see eye to eye with the JDRF in some areas and disagree with the recent marketing push for a new logo, I see this newspaper ad effort as a positive and important one. So, that makes me happy to support this organization on this front.

All of us, and everyone out there in the world, can learn more about the Artificial Pancreas Project and can take action by signing a petition to encourage the FDA to move on this and prevent even more delay. We can make a difference, and it's important we do so in order to stop these deaths-by-Low Blood Sugar from happening however often that they do.

7 comments:

Kelly Booth said...

I agree Mike, whether it is 1 in 20 or 2000 that is still too many. I read thru some of those discussions and was really surprised by some of the comments. One that particularly stood out to me was Eilish’s mother, who stated that her daughter’s death certificate said natural causes and she felt that the deaths from lows were being under-counted. She said another mother told her that is what their child’s death certificate also said. Are all the deaths even being counted?

Jess said...

preach on, brother, preach on!

Hallie Addington said...

I agree with Jess! And I agree with you! One is too many. It's not fair. We need this technology and we need it now. Enough with the waiting. It's time for bold.

Pearlsa said...

One is one too many. I totally agree with you.

Misty said...

Loved reading your perspective on this!

MommaKat said...

Mike - LOVE your blog post and completely agree. Thanks for putting these ideas and sharing your thoughts out in the public domain!!

Susie said...

I totally agree and because of this post I went to the petition, read it and signed it. Thanks!!