I Am Asking…

You may know me personally; you may not.

It doesn’t matter.

I have never – and I mean never – asked for money from my friends or family – or strangers – for diabetes. I’ve donated plenty to walks and research institutes and organizations for better care and cures. But I’ve never asked from others.

This is my first time laying it all on the line for something I know will make a difference for every person with Type 1 diabetes, so I’m standing up boldly and asking you to read on.

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My Friend,

One hundred years ago, a diagnosis of diabetes was a death sentence.

Type 1 diabetes is an autoimmune disease in which the body attacks and destroys the beta cells in the pancreas that create insulin. The cause of the disease is not known and there are no preventative measures.

Unfortunately, despite research and advancements in technology, there is still no cure. I sadly know this all too well. I was diagnosed with Type 1 diabetes thirty-one years ago.

Daily living is a precarious challenge for the over 3 million people with Type 1 diabetes (and their families who love and care for them) in the United States.

InsulinHexamer

Insulin Hexamer

Insulin, the drug that keeps people with Type 1 diabetes alive, is dangerous due to the complex dosing calculations to keep blood sugars stable. We self-manage our disease, making decisions each day to the best of our ability.

We are human. We make mistakes.

Too much insulin may cause seizures and unconsciousness without the administration of glucagon, a counter regulatory hormone that raises glucose in the blood. Too little insulin can increase the chances of long-term complications such as blindness, kidney failure, heart attacks, strokes, and nerve damage – and cause comas quickly if no insulin at all is given.

In both extremes, death becomes a sobering and real possibility.

Despite my vigilance, diabetes has done irreparable damage to my body. I am unwilling to let this disease continue to ravage my body – or anyone else’s.

Imagine a medical device that calculates and administers the proper amount of insulin and glucagon without human intervention or guesswork, keeping a diabetic’s blood sugar in “normal” range and eliminating the fears of immediate and long-term complications.

 It exists now.

The Bionic Pancreas uses a complex algorithm for insulin and glucagon dosing based on glucose readings taken from a continuous glucose monitor every five minutes – 288 dosing decisions per day, 7 days per week, 365 days per year. The automatic dosing decision is delivered via insulin/glucagon (bihormonal) pump without the diabetic doing anything.

e4db5a9fc80e2ba2a7cd353ec2b59ef9Created by Dr. Edward Damiano of Boston University and a dedicated team of collaborators from Massachusetts General Hospital and Boston University, this revolutionary device has been undergoing successful clinical trials and is expected to receive final FDA approval by 2017. (Dr. Damiano has a personal stake in this: his son, David, has Type 1 diabetes.)

Not only will this device change my life and those with Type 1 diabetes, it will lessen the financial burden on the U.S. economy: in 2012, diabetes accounted for $176 billion in direct medical costs and $69 billion in reduced productivity.

While private and government support have accelerated the successful clinical trials, funding is needed to build the integrated bihormonal Bionic Pancreas platform that will be used in the final pivotal study of 2016. This new platform is intended for commercial production after FDA approval.

I’ve held the device in my hands. I’ve talked with the clinical participants. I’ve diligently read the research. (And this research, too.)

I know this works.

We need your help to finish the Bionic Pancreas and put it in the hands (and on the bodies) of people like me.

Unlike other requests for donations, your financial support for a medical device that is not in a nebulous research state, but a viable, tangible product will ease the emotional, financial, and physical burden for those living with Type 1 diabetes and their families, employers, and friends.

No. This is not a cure. There may be a cure someday, but until then… I want to have a life without daily high and low blood sugars and the threat of complications looming over me.

Drs. Damiano and Russell have discovered a way for people with diabetes to not just live, but thrive with the Bionic Pancreas.

Your support is needed.

Every dollar you give is tax-deductible and goes directly to The Bionic Pancreas project, not for “administrative fees” or extraneous knick-knacks.

Please. GOBIONIC_NBCKND

Skip a Starbucks run. Donate $5. Skip two, if you’re so inclined. $10..

Or $20… or $50… or more.

Every dollar means something. 

Here’s the link to donate.

You can change my life. You can prevent the heart attacks and kidney disease and complications caused by diabetes. You can allow us – and our families – to live – to thrive, without worry.

You can change our future right now.

Thank you for reading all the way to the end, because that’s what I want.

An end to the challenges of Type 1 diabetes. 

Much love and gratitude,

Christel

P.S. I won’t know if you donated. That’s not important to me to know how much I raised. It’s not about that. Even if you can’t donate, you can still help.  You can help by sharing this post far and wide. Tweet. Facebook. Pintrest. Tumbler. Skywrite.

Please feel free to make the story your own if you or someone you love has Type 1 diabetes and you believe in this project. This is the one time I won’t talk about copyright. This post is for all of us. Help in any way you can.)

AADE 2014: First Impressions

header_home_mar2013_2I’m going to spend this week talking about my experience at AADE (American Association of Diabetes Educators) 2014 Conference, which was held in Orlando.

The numbers varied from 2,500 to 4,500 AADE attendees, depending on who counted. (Think of it as a very inaccurate blood glucose meter.) The final number didn’t matter; my first impressions were one of gratitude and introspection.

Why? People with diabetes spend a lot of time winging it alone. For those fortunate enough to have a smart and trusted support network (the DOC, face-to-face meetings, etc.), it’s still a rough haul, but for those who don’t have anyone… my head and heart hurt thinking about those individuals.

Enter the diabetes educator.

They can be the ones who help you go from “can I do this?” to “what’s my next goal?” with the knowledge and tools everyone needs. Cool, right? Except there aren’t enough of them and many are reaching a point in their careers that retirement is not a far-away dream. We need these educators to bridge the gap between physicians who may not have all the answers (and some don’t!) and the patients who need those answers.

What diabetes educators do

If you don’t know what a diabetes educator is, here’s the definition, according to the AADE:

Diabetes educators have the knowledge and skills to teach people with diabetes how to manage their diabetes to live their healthiest life. For example, diabetes educators explain how foods affect blood sugar, give specific directions for taking medication correctly and offer guidance on how to lower the risk of diabetes-related complications. It can include advice on everything from getting through the excesses of holiday dinners and parties, to coping with the challenges of managing diabetes while traveling for work or fun.

Diabetes education is not a lecture on what not to do. It’s real-life guidance, coaching and support proven to help people understand exactly how to best manage their diabetes, and to feel less alone while doing it.

Diabetes education can take place in a group or one-on-one setting as part of a formal or informal format.

My diabetes educators have been more than that. Some have been a sounding board, others a shoulder to cry on, and one has been able to say “Me, too,” because she lives with Type 1. I believe in the power of diabetes educators to make a difference in our lives. We need more of them.

My First Impressions

From Wednesday to Saturday, I attended some thought-provoking sessions, talked with educators who cared tremendously (and some who were just there for the continuing education credits), and danced so much one night that I had problems getting out of bed the next morning. My legs are still sore.

The educators learned from us, too.

Two interviews with diabetes educators had me thanking them both for their dedication and willingness to do what it takes. I touched new technology that will help many. I saw an amazing display of showmanship one night with a pump and an iPhone.

I came home feeling recharged, hopeful, and grateful for these individuals who want to make life with diabetes suck less.

My car didn’t feel recharged.  I also came home with a new alternator and battery.

 

 

AADE 2014 – Fasten Your Seat Belts…

event_guide_icon_100x100.original.1389889617.ios-2x.1400474897I have arrived in Orlando for this year’s American Association of Diabetes Educators conference. How excited am I to be here?

These individuals help to make our lives… livable. My current CDE is amazing (shout out to Michele!) and without my favorite “teaching nurse” (which was what Joslin Center called them; they’re diabetes educators…) Cindy, I would have been a mess more of a mess in my teens and twenties.

If you have the honor of knowing a CDE, take a moment to thank them. I plan on doing a lot of that for the next few days.

How excited are my blood sugars?

Very. In the wrong way.

300?

Really?

I feel like I should yell “We Are Sparta!” as I rage bolus.

In between the DOC-centric presentations (Cherise of DSMA is speaking today and Bennet, Kerri, Jeff Hitchcock and Dr. Block are speaking on Friday), I’ll be talking with exhibitors about the latest products on the market and with diabetes educators doing some amazing things with… diabetes education.

So, this is just a quick post to say:

“Please buckle your seat belts and place your tray tables in the upright and locked position. We are ready for takeoff.”

 

When Customers Stand Together: An Advocacy Lesson For All

I grew up in New England and it’s true what they say. You can take a girl out of New England, but you can’t New England out of the girl. No matter where I go, I take it with me.

There’s something about New Englanders that makes us… hearty. Resilient. Fiesty. Perhaps it’s the cold winters, mercurial springs, mellow summers, and glorious autumns that harden our resolve. Perhaps it’s the lobster. Who knows?

What I do know is this: New Englanders are showing the country right now what the power of speaking up and banding together can do. 

“Mahhhhh-ket Basket”

DeMoulas was a grocery store chain that was ubiquitous in New Hampshire and Massachusetts when I was a kid. If you didn’t have a local IGA (Independent Grocers Association store, pronounced Eye-Gah by the cool kids in the know), your mom and dad probably went to DeMoulas. DeMoulas eventually became known as Market Basket. There are currently 71 stores in New England. When I lived in New England as an adult, I shopped at Market Basket.

Two brothers owned the chain for a long time, until George Demoulas died and all grocery hell broke loose with infighting between heirs and the remaining brother. Now, the ruling cousins (both named Arthur, which makes it terribly confusing at family reunions and in the boardroom) have escalated this fight, with Arthur T. Demoulas being ousted as president of the corporation by Arthur S. Demoulas.

Arthur T. Demoulas has a fan club. A very large fan club of employees and customers who reacted to the firing of their CEO with a fervor that makes me proud to be a New Englander. The employees have been picketing during their off-hours, demanding the return of Arthur T. Demoulas. Some of them have lost their jobs because of it. (The lawsuits for unlawful firing and refusal to pay are already piling up.)

Photo courtesy of mydemoulas.net

Photo courtesy of mydemoulas.net

But it’s the customers (inspired by the employees that they have grown to love as part of their grocery shopping ritual) that are showing us what other communities can do (and have done) to impact change – by boycotting the stores.

“So what? People boycott all the time.”

Sales are down 90% in some stores. Ninety percent. Wrap your noggin around that. That’s a lot of money.

With employees being fired or refusing to work, no one is stocking the shelves. Customers are joining the employees picketing. They are shopping at other stores, then taking their receipts and taping them to the windows of the Market Baskets that they previously frequented.

They are hitting them where it hurts. Even if this is resolved expeditiously, it will be weeks – months – before the supply chain will fill the stores back up. Arthur T. Demoulas is trying to buy the company outright, but the current board of directors isn’t biting.

What can we, the diabetes community, learn from this?

  • When we rally around something that we believe in, we upset the status quo. 
  • One person standing up is amazing; a community standing up together is unstoppable. 
  • Don’t think you can make a difference? You can. 

I’m going to be watching the unfolding of this campaign to see what happens and I’m taking notes. We, the diabetes community, will need to continue to learn from other communities (health or otherwise) to see what tactics they are using to make a difference.

Want to read the story of the Market Basket feud? Ta-da. Enjoy!

Here’s the Facebook page for the Save Market Basket movement. 

How do you feel about what the New England community is doing in their effort of right a wrong? Are there lessons you think we should take from this? 

Two Minute Diabetes Advocacy: CGM Medicare Coverage

708615_95129272It’s time to be a Two Minute Diabetes Advocate!

I’m keeping this short and sweet that you can understand the importance of this bill and take action on it in under two minutes.

Senate Bill: S.2689

‘Medicare CGM Access Act of 2014′

Even if you are a parent of a child with diabetes, this is an action you need to take. (This bill will eventually help with artificial pancreas systems, so it does matter to all of us.)

85% percent of Type 1s are adults. We’re living longer and with less complications. Many of us are headed for Medicare or are already there. It’s shocking to know that if you’re on Medicare, you are NOT covered for a continuous glucose monitor (CGM).

Imagine having a technology that helps you and having it covered by your insurance – and then you can’t get the device or sensors covered because you’re on Medicare.

That’s not a world I want to live in.

So, we’re rising up to support those who can help get CGMs covered by Medicare: U.S. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). Here’s the press release about the introduction of the bill from JDRF. Lots of good info. 

What can you do?

JDRF is leading the campaign. They’ve set up a click to email campaign for your senators. All you do is fill out your info and add a personal message and send it on its way. So…

1) Click here and fill out the email form. 

2) Add your personal message. You can even copy and paste this:

I have diabetes and I am worried about my future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

OR:

A loved one has diabetes and I am worried about their future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

(Skip over the ‘print this message to personalize’ if you want.)

3) That’s it. Go back to your day.

If you’re feeling extra ambitious, share this post with your friends and family and help show the Senate that while this is NOT a cure, it will help those with diabetes live well until there is one. (Click on the email link below this post or share it on FB or Twitter…)

You can also sign this petition from JDRF to Medicare.

Bookmark CGMSafely.com – it’s the latest grassroots advocacy movement begun by the amazing Bennet. You’ll get the latest info and actions on CGM here.