#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.

Twitter-KarenBittrSweet

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.

Twitter-DiabetesMine

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.

Twitter-gborkman

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.

Twitter-StephenSType1
 
 
Still, I think a sense of perspective needs to prevail here.

Twitter-StripSafely

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.

Twitter-FDA-Patients

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:

Twitter-askmanny

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.

Champion-Athletes-With-Diabetes-Medal

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!
 
 
 

Why Diabetes Awareness Month Matters.

Saturday, November 1st marks the beginning of Diabetes Awareness Month 2014.

I saw this video the other day, and part of it keeps coming back to me. It was when Kim Vlasnik said “My disease is not a punch line”. I’ve seen the video a few times now, and every time I hear that part I shift uncomfortably in my chair, thinking of a couple of moments in my recent past. I had shoved these memories deep inside, I thought, to the point where I didn’t think I’d be reminded of them (I’m good at sweeping these kind of things under the rug and moving on with my life). But watching that part of the video brought them to the surface again, and I’m having trouble shaking them.

One was during my workday, while I was walking outside, on my way to have lunch by the harbor. The other happened on the subway, on my way home. In both cases, a sudden low hit me hard. I wound up on the ground on Baltimore’s beautiful harbor promenade, and on the disgustingly dirty floor of a subway car, struggling to maintain consciousness, mere moments from potentially losing my life.

In both cases, no one helped or asked if I needed help. No one called 911. However, in both cases, at least two people got out their phones and started shooting video of the entire episode. People with good jobs, good clothes, and disposable income stopped what they were doing in order to commit my trauma to digital media before it was over. My medical emergency became fodder for their Facebook post or their Tweet or their ha-ha YouTube video.

In my country, about ten times more people will be diagnosed with diabetes this year than will be diagnosed with breast cancer. In October, countless media outlets help promote marathons designed to help raise money for an organization that has, according to some reports (like this one), contributed as little as 15 percent of of its donations on research awards that fund studies on everything from hard-core molecular biology to the quality of breast-cancer care for Medicaid patients. In October, the White House was lit up in pink. In October, the National Football League sells pink accessories and pink jerseys and pink who-knows-what-else and donates a portion of sales to breast cancer research. The same thing happens in May as Major League Baseball tries to get in on the action.
 
 
Meanwhile, people are using the near-death experiences of people living with diabetes as social media entertainment. I wonder how much this might change if diabetes received even one tenth of the awareness of breast cancer.
 
 
Awareness.
 
 
This is only one reason why we need Diabetes Awareness Month.
 
 
This is only one reason why we—why I—need the Diabetes Online Community.
 
 
Ignorance does not look good in pink, or blue, or any other color.
 
 
If you can’t do it for any other reason: As you take the Big Blue Test, form a human Blue Circle, or even think about performing some other measure of outreach or advocacy this November, please remember the importance of awareness.
 
 
I know I’ll get over these brief moments in my life.
But don’t allow anyone else to experience anything like this ever again.
 
 
Awareness.
 
 
This is only one reason why we need Diabetes Awareness Month.
 
 
 

Reminders, reminders. And more reminders.

Here are a few reminders of things happening right now where you can make a difference:
 
 
Tweet your elected officials! Tell them to #Vote4DM!

VOTE4DIABETESM

Maybe you were getting ready for last week’s DSMA Twitter chat and you started noticing all of the tweets going out from the Diabetes Community to House members and Senators here in the USA. Do you know where that started? It started at Strip Safely, who started the campaign and even provided this nifty web page that made it super easy for people to Tweet their elected officials about coordinating the federal response to diabetes, covering CGMs for senior citizens on Medicare, and permitting Certified Diabetes Educators to provide already approved education benefits to their patients.

Guess what? There will be a brand new Tweet-In again tonight (October 29) beginning at 8:00 p.m. eastern time. Once again the Diabetes Community will be showing strength in numbers by massively tweeting the lawmakers we elected and letting them know how important it is (less than a week before election day) to make diabetes an integral part of the legislative landscape. And soon.

It will take less than five minutes for you to be an advocate.

At 8:00 eastern time tonight (US)– You can help by going to this page, finding your congressperson and senators, and clicking on the specific links listed to either encourage the people (that we elected) to take up the cause, or to thank them for already doing so.

————————————————————————————–

Five days until #DOCAsksFDA

I’m very much looking forward to the conversation (via webcast) that will be taking place on Monday, November 3 beginning at 1:00 p.m. eastern time (US). This is a chance for you to learn more about the U.S. Food and Drug Administration, how and why they review devices and drugs, and how we, as a community, can work with the FDA toward better outcomes in all areas.

To RSVP for the webcast, go to this Diatribe link or this FDA link, get all the information, and register. Once you’ve done that, you’ll get a look at the agenda and a link to join the webcast on Monday. I hope you’ll be there!

————————————————————————————–

Don’t forget about the Big Blue Test

Hashtag-Big-Blue-Test

The Big Blue Test is going strong. As of this writing, there were over 1600 Big Blue Tests recorded so far. But that’s a far cry from the goal of 35,000 set for this year’s event.

Don’t forget… Now until November 19, every Big Blue Test that is logged will result in a $1.00 (US) donation to non-profit diabetes groups that are working tirelessly to provide education, support, and supplies to people who need them. My guess is maybe you’ve forgotten to log all of your activity. Well what are you waiting for?

Here’s how it works:

1. Test your blood glucose. If you do not have diabetes, you can skip this step.

2. Get active. For 14 to 20 minutes, get up and get moving. You can , walk, run, clean the house, swim, tap dance…whatever!

3. Test again. On average, Big Blue Testers seen their blood glucose level drop 20% after 14-20 minutes of exercise.

4. Share your results. Answer the questions in the right column of the page at bigbluetest.org. And don’t forget to talk about your experience on social media using the hashtag #bigbluetest.
 
 
 
So there you have it. Three great ways to learn, stay active, and hold congressional feet to the fire for People With Diabetes. It’s not always about big projects with huge budgets and lots of manpower. Sometimes it’s as simple as saying, “Yeah, I can do that” and making a small effort.

And while I’m at it, let me say: Thank You for your advocacy. Your efforts continue to make a difference.
 
 
 

What hapens to your blood sugar when you give blood?

Note: This is only my experience while donating blood. Your experience, like your diabetes, may vary.

I got up early the Saturday before last, had breakfast, and made my way to the American Red Cross Mt. Hope Donor Center in Baltimore. I had intended to write about the blood donation process; being transparent about what transpires is a good thing.

But… sometimes, your blood sugar numbers just get in the way of your best-laid plans.

Donor-Parking

I arrived at the center about ten minutes early Saturday. I figure, early in, early out. Prior to going in, I checked my BG and it was 156 mg/dL (8.6 mmol/L). I did carry my meter in with me, which you should do too if you decide to donate blood.

Red-Cross

I was not concerned about this number, but I knew my BG would probably come down during the donation process, so as I entered the center I suspended my pump. What if I wound up high later? I didn’t care. In this case, better to be high than to go too low during the donation process.

I went through the initial reading of information, being tested for anemia, and answering questions to make sure I didn’t have any conditions and that I’m not taking any medications that would preclude me from giving blood. Then it was on to the donation.

I went through the donation process (see photos), and during this entire time I thought I was okay, but in fact, I was dropping. When the donation process was complete, we’re encouraged to take a moment and have a snack and a little juice, so our blood sugar can recover from the process. I was sure that since my pump had been suspended for about an hour after my BG was 156, I wouldn’t have a problem with that.

DSC01823

DSC01827

I sat down, and the first thing I did was pull my meter out of my pocket and check. Which, if you decide to donate blood, you should do too. What was the result? 50 mg/dL (2.8 mmol/L).

Wow. I had a little juice and a bag of pretzels. Twenty minutes go by, and I’m sure I must be higher. Don’t forget, I haven’t restarted my pump yet. My next check revealed: 59 mg/dL (3.2 mmol/L).

What? I was sure I was going to be okay after this, so I made the huge mistake of driving home. In retrospect, I feel horrible about driving at that point, but I should be honest, and that’s what I did. I drove home. It was about a ten minute drive, and I checked again once I got there: 56 mg/dL (3.1 mmol/L).

I’m now at the “I can’t believe this” stage. I downed a glass of juice and had a slice of bread with peanut butter. I waited another twenty-five minutes to check this time. Finally… at 11:20… 169 mg/dL (9.4 mmol/L). After nearly two hours, I finally started up my pump again.

I guess I always knew that my blood sugar could be affected by donating blood. But this experience was something I did not count on. So next time (and there will be a next time), I’ll be more prepared than ever.

There is currently a desparate need for whole blood and blood platelets for patients of all kinds. If you’re living with diabetes in the USA, you may still be able to donate blood– and save a life. Find all the info at redcrossblood.org, or send me an e-mail using the link in the upper-left corner of this page and I’ll tell you what I know.
 
 
 

Follow

Get every new post delivered to your Inbox.

Join 1,233 other followers