Monthly Archives: November 2014

#DOCasksFDA: Excitement, disappointment, perspective.

Like so many others, I looked/listened/Tweeted in on the #DOCasksFDA presentations on Monday afternoon (or morning, depending on where you live). A conversation between the diabetes community and the U.S. Food and Drug Administration, it promised to open a window to the FDA’s role in our diabetes lives.

I was quite interested in what was going to be said, and how it would be presented. There were numerous presentations by FDA staff and government policy makers, and diabetes community movers and shakers.

Let me just say this, for people who haven’t been at a gathering of this type, and especially for those catching it via the webcast: I do understand that seeing everything via a webcast is not the same as being in the room. But only a few were going to actually be in the room, and that doesn’t mean the rest of us were going to be left totally in the dark. For people who have complained for so long about being left out of the process (define your process here), this was an important step, even if it meant registering for the webcast as a participant, then having to log in as a guest, which probably meant the same thing anyway.

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If you don’t know this already, the response was tremendous. In fact, so many people were logged into the webcast that it overwhelmed the web servers at the FDA.

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Honestly, I thought it was possible that we just overwhelmed the meeting capacity of the Adobe® Connect session that was set up for this event. Regardless, it was almost certainly a case of a huge amount of people trying to look through a tiny keyhole all at the same time.

In a way, that’s a good thing, right? We showed the FDA how big a group we are, and how seriously we take the FDA’s role in reviewing and approving drugs and devices. This is proof positive that we have serious questions and concerns, and a big desire to know more.

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On the other hand, it was disappointing to have a large slice of the meeting completely lost. I mean, I started work at 7:00 a.m, worked straight through without a break until the webcast began at 1:00, then worked another two hours after, just so I could take it all in live. So when the webcast went down, then just the audio came back for me, then even that went down again, I felt a real sense of loss.

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Still, I think a sense of perspective needs to prevail here.

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This is the first time a forum like this has been live streamed between the FDA and the diabetes community. If events like this were reccurring, I would feel good knowing the worst technical problems occurred the first time around, and things got better after that. I’m bummed about missing so much, but I’m willing to forgive a little more the first time around.

Also, we did have the Twitter feed (hashtag: #DOCasksFDA) to rely on when things went awry. It’s not the same as being there, but it is something.

And the best part is that the presentations will be available soon online. I’m hoping that includes recordings of the parts of the webcast those of us not in the room missed.

Most of all, it’s important to note two important things about that afternoon:

1. The FDA is engaging with us.

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2. The diabetes community showed an amazing amount of interest, concern, and advocacy during those three hours, webcast or not. This was Tweeted by Manny Hernandez in the first half hour, and the conversation only accelerated from there:

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Considering the technical difficulties, I hope something like this can be done again very soon. The need exists. The desire is certainly there. I am very grateful to the FDA for agreeing to do this, and for trying to solve technical problems when they happened. I’m grateful to Kelly Close, Adam Brown, and the DiaTribe team for facilitating this event. And I couldn’t be prouder of the rest of the diabetes community, who turned out in oversized numbers to voice our interest in interacting with this government agency. It can only get better from here, yes?
 
 
 

One year later.

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One year ago, I used the beginning of Diabetes Awareness Month to springboard the start of our Champion Athletes With Diabetes initiative. Yes, it’s my blog, but I think of this as our initiative, in the sense that a) I had this idea, and b) The Great Spousal Unit has enthusiatically supported it, and c) Countless people and places on the internet have been very supportive too. We’re all to blame, and we’re all to be congratulated (but you guys, more than me… really).

As I’ve mentioned before, I got the idea for this whole thing after I saw a video from Kerri Sparling. I started to look at what it would actually cost to have medals made, make certificates (even The Tin Man received a testimonial!), and send a personal note to each athlete who would write for a medal. The cost seemed reasonable, and in retrospect, the monetary cost plus the cost in time and effort has been miniscule compared to the warmth and kindness I’ve received from our Champion Athletes With Diabetes. And it’s even more miniscule compared to the happiness and pride I’ve felt for my fellow brothers and sisters with broken pancreases each time they achieve athletic goals that seemed nearly impossible when they began.

To date, we’ve delivered fifteen medals to Champion Athletes With Diabetes.

We’ve sent medals to 40 and 50-plus year veterans of living with diabetes. We sent one to a race car driver. We sent one to Scott Johnson and Mike Hoskins. We sent a medal to Mary Beth Wyss, a T1D with two adult children… and we sent one to Kelley Kent, a T1D who will become a Mom for the first time any day now (that’s worthy of its own medal, both before and after the baby is grown). Sprinkled in there are medals for kids and serious runners (hello Cecilia and Corey). And I can’t forget about the amazing Merle Gleeson and the inspirational Bob Parant.

If there’s one thing I hear more than anything else when I talk to people about earning a medal, it’s the notion that they are not a good enough athlete, or they haven’t done enough to earn a medal (yet). This medal is not about achieving a certain level of greatness. It’s about what goes into getting there: The hours of training, the high and (mostly) low blood sugars, the frustrations, and more than anything, the perseverance that is an important and necessary part of any athlete’s equipment.

I’ve been inspired and humbled by what these special athletes have achieved, even before they ever ran a race, or biked in a charity event, or signed up to play volleyball or soccer. I am so grateful you’ve let me share your remarkable stories.

Among the fifteen medals we’ve given away, there are two stories still waiting to be told. So look for more athletes before the end of this month. In the meantime…
 
 
If you are living with diabetes, and you’re active; or if someone close to you is living with D and is active, we would love to send a medal recognizing the athlete’s achievement.

There are only four simple things to do to get yours:

1. The athlete receiving the award must be living with diabetes.

2.
The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. It takes a tremendous amount of planning, effort, and bravery to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to walk around the block. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
Happy Anniversary Athletes!