Category Archives: Advocacy

Reminders, reminders. And more reminders.

October 29, 2014 – 9:31 am

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.

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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!

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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.
 
 
 

By StephenS | Tagged , , , , | Comments (1)

It’s Big Blue Test Time!

October 20, 2014 – 9:06 am

Big-Blue-Test
 
 
Today marks the start of one of my favorite parts of the year. It’s Big Blue Test time!

For the next month, 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.

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.

Hashtag-Big-Blue-Test

Tell everyone you know, whether they’re living with diabetes or not. Log those moments of activity throughout your day.
Share this with everyone you know (use the hashtag #bigbluetest).

Have you been looking for a way to help move the needle toward better outcomes for People With Diabetes, but you’re not sure how? This is how.

I’ve already logged my first one! I took the long way walking from the train station to work, and my BG dropped 53 points. I’m going to try to do this every working day (twice per day, of course) for the next month. I’ll bet there’s something similar you can do where you live and work.

Sometimes, diabetes advocacy is both fun and easy. Go to bigbluetest.org to find out more.

By StephenS | Tagged , , , | Comments (2)

Talking with the FDA.

September 19, 2014 – 6:17 pm

This post is also published on the Diabetes Advocates website.
Take the Diabetes Advocacy Survey, join us, and become a Diabetes Advocate right now. This post will wait until you come back.

When I first discovered the group of bloggers, reporters, healthcare professionals, and patient advocates that make up the Diabetes Online Community, I remember feeling really good about the support and encouragement I was suddenly finding through the internet.

I did not know much about the U.S. Food and Drug Administration, other than knowing that they had to approve every new drug or device used to help me survive with diabetes. Then I started reading a lot from people who felt that the FDA was holding back progress on these things. How the FDA never took the patient point of view into consideration. How they were a bottleneck, holding back advancement toward better outcomes for us.

Well, I’m not sure if that was entirely true then. But I do know now that it is not true today.

Last year, Strip Safely helped lead a campaign to get more people to comment on FDA draft guidance for glucose meters. We were all encouraged to post comments letting the FDA know how important greater accuracy and post-market inspection is when considering the trustworthiness of new glucose meters and test strips.

We were able to post those comments directly to the FDA because they made it possible to do so, easily, online. As a result of just that one push to comment, the FDA received six hundred comments on this one issue. That’s about six or seven times the number of comments they generally receive on draft guidance. Collectively, and as individuals, the diabetes community spoke and the FDA listened. But that’s not all.

A few weeks ago, I received an e-mail from the Food and Drug Administration about comments I left regarding glucose meters in a point-of-care setting (hospitals, doctor’s offices, etc.). They wanted to speak to me about what I had written them. So we scheduled a time, and I spoke by telephone with Katherine Serrano, Deputy Director of the FDA’s Division of Chemistry and Toxicology Devices.

We talked about some of the things I had written, and she had a few questions for me. The thought of that seems a little intimidating at first. But rather than just a talk between a Deputy Director at FDA and a guy from Baltimore, it was really a conversation between two people discussing an important topic. I tried to give her my passionate best on the subject, and she remained engaged, asking follow-up questions and allowing me to consider her questions carefully before answering, and even letting me e-mail her later with additional feedback. This does not seem like the actions of a group that does not care what we think.

I don’t know how seriously Ms. Serrano or the FDA considers my views on the subject. But there’s no denying the fact that I was given not one, but two chances to deliver a personal plea for the best possible device guidance on point-of-care glucose monitoring. And I was not going to pass on either one of those opportunities.

Because new innovations often take years to get into the hands of the people who need them most, it’s easy to feel like your voice would get lost among the masses, even when you do take the time to respond to something. But what’s the alternative? You, or people you love, are the patients, the ones most affected by any changes to the status quo. The one way to be sure your concerns are part of the public record is to make them public. The one way to help all people with diabetes get the better outcomes they deserve is to insert your voice into the conversation. And if you’re asked for additional perspective, be sure to speak with the passionate desire for the absolute best results that comes with the perspective that only you possess.

We’re counting on you. Allow yourself to be the voice that makes the difference.
 
 
 

By StephenS | Tagged , , , | Comments (5)

Hitting the benchmark.

August 29, 2014 – 9:14 am

I was thinking the other day about some things I’ve written over the last couple of years. Things that said, essentially, “I’m going to do something”. I started listing those things in my head, then started assessing whether I had met each goal, and whether I had met the goal within the spirit that was intended when I wrote about it.

What I’m finding is that I am completing most of the things I’m starting. Almost all of them. I’m completing them, and as a result I’m able to feel good that I did something I felt was important enough to write about in the first place. What’s disturbing is the feeling that I’m often not as successful as I think I could have been when I first started out on these goals. This kind of thing is really gnawing at me right now.

Did I run that 5K? Sure. Cross it off the list. In a quiet moment of reflection, however, I lament the fact that I didn’t really train to run it hard; I just trained to be able to finish it in the first place. Big difference. It leads to the feeling that I’m not doing things big enough, or with big enough success.

You might think it’s good that I completed the 5K in the first place. Not completing it is the alternative, and that’s definitely not good. And hey, we’re all busy, and blah blah blah. I so appreciate the sentiment, but there are times when hearing that sounds more like a reminder that I didn’t do well enough, rather than what it should sound like, which is support, which I so desperately need. I want to hold myself to a higher standard. And it’s not about trying to be as great as [fill in the blank]. I don’t generally compare myself to others, because I find I feel better if I celebrate what others accomplish instead of comparing my accomplishments against theirs. Plus, I know there’s a good chance I’ll feel like I don’t measure up anyway, and feeling like I’m not measuring up is enough to make me hesitate to try anything new. Insert recipe for inertia.

Yet I have to root myself in the knowledge that much of our success in life comes from trying, not necessarily succeeding, in every new venture. And I must admit to giving in to the feeling that if I write about it, I’d damn well better do it. More than once, that’s kept me from giving up on something entirely. Maybe you think that’s a poor way to go about achieving things. But I don’t feel this way about everything. And if the end result is positive, who cares?
 
 
As in all things, I think there has to be a balance.

I need to hold myself accountable. I need to give myself a break once in a while.

I need to keep trying new things. I need to not be disappointed if it doesn’t always go perfectly the first time.

I need to try for the best possible result every time. I need to be happy that there is a result of any kind, even if it doesn’t always meet my expectations, which are generally pretty lofty anyway.

Side Note: I need to learn from every experience, and be open to learning from everyone else’s experiences.
 
 
What I most want to remember is:

1. Celebrate the success of others
2. Look for opportunities to make a positive difference, even if the difference only affects one person
3. Take advantage of those opportunities and actually make a positive difference
4. Never stop learning
5. Never stop trying

I might also add: Keep some perspective. In reality, it’s been a good year so far, and the future looks brighter all the time. I could have done more, or done what I’ve already done better perhaps, but it’s only okay to feel that way if I stop short of regret, self-pity, and future inaction. I’m not perfect. I will keep trying to be helpful, in as big a way as I can muster.
 
 
 

By StephenS | Tagged , , | Comments (3)

#MasterLab: Advocacy and Movement.

July 10, 2014 – 9:34 am

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This MasterLab thing… it was great, it really fired me up to do more with my advocacy, and it even boosted my morale.

Now what? And by extension, you may be thinking, “What do you want me to do?”.

For me, advocacy is a very personal thing. I think it should be for you too.

My only advice: Don’t let the word handcuff you.

I try to think of advocacy with a little a, rather than a big A. I don’t give the word too much influence over me. Earlier in my life, I was intimidated by the word. That intimidation caused me to do nothing at all, which doesn’t help anyone.

But not any longer. Not because I suddenly got braver. No… now I try to concentrate on the things I’m capable of focusing on. If my efforts need to start small, then grow later, okay. I simply try to do what I can, when the need arises. If that eventually turns into full-fledged Advocacy with a capital A, then great. If not, I’ll find something else to get involved in. Not everything is a roaring success.

But… some things are. I not only want to be a part of those successes. I want to help make them happen sooner.

Here’s how you can take a tangible step toward joining a movement, all from the comfort of your own electronic device:

Go to the Diabetes Action Hub now. Take the Diabetes Advocacy Survey (you’ll complete it in less than 5 minutes). Add your information to the database. Help build a strong group of supporters that will be part of a movement, allowing us all to help make our cause bigger and stronger. Then check out the rest of the Diabetes Action Hub to find out how you can help right now. And don’t forget to visit often for updates and calls to action on issues that mean the most to us.

Do you know what has happened to me over the past two and a half years? I’ve gotten involved from time to time in efforts designed to help people. I haven’t always had the time to throw myself fully into whatever need arose, but often I was able to do at least something. What that means is that unlike two and a half years ago, I am actually doing something.

There is a difference between advocacy and a movement. Advocacy is being in someone’s corner… I’ve got your back. I’ll stand up for you, whether or not you can stand up for yourself.

A movement is when many people take tangible steps that have a positive impact for others. Those tangible steps are often small steps. But in big enough numbers, they can move mountains. One big effort by one person is significant. Many small efforts toward the same goal create a movement that no one can ignore.

We need more advocates. No question about it. We need more agitators and litigators and innovators. If that’s you, please step forward. I’ll stand with you and support you.

But I think what we’re missing is a movement. A movement that comes from an army of people that numbers in the hundreds of millions worldwide, who are living with and affected by diabetes. An army of people who are willing to say “I can’t do everything, but I can do something, just let me know”. An army of people who are just trying to do what they can, when the need arises. Because life, and the quality of life, hangs in the balance.

Things have improved tremendously for People With Diabetes in the past few decades. But we’re still an underfunded, misunderstood, red-headed stepchild of a condition. Whether you think five people calling your congressperson is a movement, or whether you think 500,000 people marching on the capitol is the correct definition of a movement, the fact is we need both you and me to be able to reach those numbers. We need you and we need me and we need your family and we need the people at your local coffee house and we need the Congress and the Senate and the President of the United States and if need be, the Supreme Court to get on the steamroller that’s just starting up right now. I look forward to the day when we’re no longer talking about starting a movement, but rather talking about the movement we started.

Are you with me? Take the Diabetes Advocacy Survey now.
 
 
 

By StephenS | Also posted in Events | Tagged , , , , | Comments (3)