Celebrating Diabetes? A Look At The Diaversary

I’m a big fan of diaversaries. I’ve celebrated each one of mine for the past 20 years and have even gone so far as to create a line of greeting cards dedicated to them. But not everyone has the same thoughts and feelings towards the day our lives all changed. Nebraskan-turned-Oklahoman Kristin, who was also diagnosed at age 8, offered to write her thoughts about her 24th diaversary, which is happening this month. Take it away, Kristin!

A Guest Post by Kristin Ewing

aTNeOmwSCelebrations!

Is it just me or does our society go crazy for any sort of celebration? Granted, the degree of intensity of celebrations varies but there is always a segment of the general population celebrating something. The majority celebrate things such as birthdays, anniversaries, graduations, etc.

In one of my circles of friends, there is a significant milestone a large majority of us celebrate – the dia-versary – the anniversary of our diagnosis of diabetes. Myself? I’ve celebrated it a few times – maybe twice? I feel conflicted on celebrating. Let me explain.

First, start with the name this milestone of our lives has been given. Say it out loud. Dia-vers-ary. That first syllable, dia, it throws me. It just makes the entire phrase sound sad. If we’re celebrating, shouldn’t it be something with a more joyful sound. Something that elicits a squeal of excitement when you hear someone talking about how the day is fast approaching?

I’m also conflicted on celebrating because, honestly, I’m not very thrilled to have diabetes. I’d much rather not have it than have it. I’m confident in saying all diabetics share that thought. Now, the eternal optimist within me has absolutely no hesitations and looks forward to celebrating how many years I’ve been diabetes free once that cure is found.

What conflicts me the most is by celebrating my dia-versary is it forces me to remember the struggles as a small town kid being diagnosed with an uncommon disease in that area. Remembering those days, my struggles, the loss of my school friends, my rebellious streaks and so much more makes me cringe. Thinking about that time period as I write this blog post makes me cringe and has me wanting to run home to curl up with my puppy. So, yes, I’d really not celebrate something with so many negative memories.

But then I think about how far I’ve come. Seriously. Leaps and bounds galore. Instead of “I don’t give a damn” attitude towards my diabetes, I am slowly forming a “I don’t give a damn” attitude towards what others think of my diabetes. I’ve gone from crazy, scary, out of control to shockingly great control (although not perfect yet) with the help of a pump.

At the end of March, it will be 24 years since I was diagnosed with diabetes. I’m not sure if I will celebrate my dia-versary or not. Since I can’t even remember the exact date I was diagnosed – I just remember getting out of the hospital on April Fool’s Day – I’m just not sure. As I think about this, perhaps it makes more sense to celebrate my “pump-ersary” because has been the key in my positive changes.

However, if I do celebrate, I’m celebrating with style – I’ll be making s’mores on my outdoor fire pit. In the meantime, it doesn’t matter if I do or don’t celebrate it, what matters is a) dia-versary really needs a more positive name and b) it isn’t all glitter, sunshine and unicorns to have diabetes but I can certainly celebrate that I’m successfully conquering it by staying alive.

 

Question: Do you celebrate your diaversary? Why or why not?

JDRF Government Day

A couple of years ago, I was lucky enough to be invited to attend JDRF’s Government Day in Washington D.C. as a panelist for their session on social media. Not only did I get to speak to dozens of committed JDRF volunteers about the power of social media, but I also attended meetings with Members of Congress on the Hill. It was the first time participating in political advocacy since I was a JDRF Children’s Congress delegate and it was awesome! 

JDRF recently hosted their annual Government Day and blogger Meghann Tinker offered to write about her experience as a first-timer there representing her homestate of Ohio. Meghann, a fellow 20something, has had type 1 diabetes for almost 25 years, but this was her first time interacting with politicians, which can be very nerve-wracking! Let’s see how things went on the Hill…

A Guest Post by Meghann Tinker 

Back in January of this year, I received an invitation to attend the JDRF Government Day event. My best friend (and type 1 diabetic) friend, Jenna, had nominated me to attend the event with her, through our local chapter. Jenna helped me with hotel and flight reservations. I don’t travel often, and I wasn’t sure which direction I needed to go in to make sure that my reservations were secure.

While waiting for the first weekend of March, I’ll have to admit to you—I wasn’t completely understanding the vast importance of the event. I mean, I knew that the “newbies” would be briefed on how to conduct a meeting, and what exactly the Special Diabetes Program (SDP) entailed, but I really had no idea.

Saturday, March 8 had finally arrived.meghann3

I had packed my suitcase a few days before, so the morning before our flight departed from Columbus (CMH), I ran to the bank, and Target to pick up a few miscellaneous items (including Level Foods protein bars). My little brother took me to the airport. Our flight was delayed, and I was early, so I checked my suitcase, and picked a spot at the cafe, to sit down and Google.

I learned that the SDP was a program, designed to advance T1D research at the National Institutes of Health (NIH). The SDP also funds treatment, education, and prevention programs (for specific populations of T2D). Jenna arrived, and checked her suitcase. The next part that we had to endure terrified me: the TSA.

The pat down, was in short, a breeze. I’m not even sure what I was so terrified about. The agents were professional, and asked Jenna and I sincere, curious questions about T1D and our devices.

We stopped at the airport Starbucks and charged our phones, while we waited for our airliner to arrive. The flight was about an hour and ten minutes long. Once we arrived, I was in awe of being in a different city. My eyes were wide with excitement.

The JDRF Government Day dinner began at 6:30 PM, and we arrived at our hotel to check in around 6:45 PM. Jenna’s room was on the 6th floor; Mine was on the 10th. We decided to keep my luggage in her room to save time. Shoes, shirts, and pants were changed, and we raced up to the 16th floor to join the other advocates (roughly 160 people). Our Midwest table was at occupancy, so we chose to sit with some great advocates from the Chicago, IL area (including Lisa Callaway)!

Everyone had to stand up and introduce themselves and explain their connection to type 1 diabetes. Some of the stories were unreal. One woman had 2 out of her 3 children diagnosed with T1D, and the third child had the antibodies and potential to develop T1D. Grandchildren, children, friends, colleagues—T1D is more prevalent than you think. These stories brought tears to my eyes; they were so moving.

By the time the microphone got to me, I was shaking. I stood up, and told my story. My voice ended up breaking. Lisa Callaway rubbed my arm and told me everything would be OK. I appreciated having that comfort from a complete stranger-turned friend.

meghann2It was after the dinner, I finally got to meet Karen Bittersweet (Graffeo)! It was surreal to embrace someone you had met and become friends with over the internet!

Sunday morning came fast, and with the time change, we were all yawning over breakfast. We had a presentation on a progress report of the SDP, which was fascinating. I learned so much during this session (you can view my live tweets on Twitter). After lunch, we had small group sessions, which included a social media presentation (a “How To” with advocacy, if you will). The session I learned the most at, was “What To Expect When You’re Expecting…To Meet With Your Legislator!” which was officiated by Niels Knutson. I walked out of there after the 45 minutes feeling better about the meetings. I was terrified of what I didn’t know! Later that evening, we went out to the Hamilton DC downtown for dinner with our district attendees.

Monday morning came fast. I woke up before my alarm, ready to take on the day. Jenna and I took the hotel shuttle to Capital Hill, with about 20 other advocates. Our first meeting was with the staff of Bill Johnson (OH-6). I was so nervous. I had no idea what to expect, being that I was officially in the real-time situation. Our meeting with David Rardin was sweet and brief. I walked out of the office, alongside Jenna, all smiles.

We stopped and had some lunch in the Senate Cafe with our Midwest D-Mom’s, and then headed into our meeting with the staff of Senator Rob Portman. All five of us were so nervous, because we had to convince this member to support the SDP.

After the meeting, Jenna and I had to rush to meet with the staff of Joyce Beatty (OH-3), and then with the staff of Pat Tiberi (OH-12). All of our meetings for the day were complete. We stopped at the National Air & Space Museum, and headed back to the hotel shortly after.

My feet were killing me. I had worn a pair of black ballet flats, that I had wrongly assumed would be fine to be in for the day. Ouch. I’m pretty sure the skin of my pinky toes was torn clean off! Thank goodness for the D-Mom’s—Brandy Kohut gave me bandages to place over the horrendous blisters that my Target shoes inflicted.

meghann1Our JDRF CEO dinner began at 6:30 that evening. I couldn’t believe that I would have an opportunity to meet the leader of our foundation! Mr. Brewer and his VP of research and advocacy, Dr. David Wheadon, provided an excellent presentation in regard to making Type 1 become Type “None.” Dr. Wheadon actually pulled out a preliminary model of an islet sheet! I got to hold it and take a picture with it! The islet sheet smelled like fresh tape.. So new and innovative!

Tuesday morning was awake at 6:30 AM to greet me with sunshine through my hotel window. I took my time to get ready, and pack my suitcase. Our first meeting on the hill wasn’t until 1:30 PM that day (with Senator Sherrod Brown’s staff). Jenna and I did some sightseeing, and stopped at the National Museum of American History.

We met with Senator Brown’s staff member, Val Molaison right on time, to discuss the renewal of the SDP. After our meeting, we rushed to meet with the staff of Steve Stivers (OH-15). Taryn was great! Jenna and I enjoyed meeting with her very much. We had some extra time to do some more sightseeing and eat a late lunch before we picked up our luggage at the Capital Hotel to get to the metro. We ate at this pizza joint called We, The Pizza. Jenna and I pondered over how many carbohydrates was in a New York-sized slice of pizza (25 grams, probably).

After we picked up our luggage, we walked a couple of blocks to get to the metro (my first time using it). Once at the airport, we checked our luggage and sat at our gate to charge our phones and scarf some dinner. Our flight was delayed, again (surprise), but we finally landed back home in Columbus, Ohio after 9:30 PM.

Overall, I was honored to have been a part of JDRF Government Day. I would be thrilled to accept a nominated invitation next year!

 

We’re so happy to have you advocating on our behalf, Meghann!

Recall Q&A With Abbott Diabetes Care

About a week and a half ago, news came out that there was a recall on Freestyle test strips, one for the strips Omnipod users use and one for users of older Freestyle meters. A lot of patients took to Facebook and Twitter to rant about the various ways Abbott mismanaged the recall announcement.

On Friday, I had the opportunity to speak with Jessica Sachariason, the Public Affairs Manager for Abbott Diabetes Care. I relayed to her the different complaints and concerns that I had heard, and I also asked her a series of questions that I felt Abbott had not yet addressed. However, she had to go back and get the “proper” answers to meet Abbott’s legal department’s requirements, so the answers are somewhat formal and stilted. That being said, I feel a bit better knowing that Abbott has now heard at least some of the complaints and issues that arose from this recall.

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What was the issue that caused the erroneous low blood sugars? Was this a technical defect or was it a quality control issue? Why does the Freedom meter work but not the PDM or the older meters?

The root cause has been determined to be a strip manufacturing process error, which only expresses when a strip is used with a non-applied voltage meter (FreeStyle, FreeStyle Flash, and the FreeStyle meter built into the Omnipod system).   The manufacturing error causes a decreased response in the system glucose readings. Meters, such as the FreeStyle Freedom, with applied voltage are not impacted and do not express a decreased response in the system glucose readings.

What has been done to resolve this issue?

Abbott has implemented additional quality control processes. At Abbott, the health and safety of patients is our highest priority. The replacement test strips provided to OmniPod users have undergone additional quality testing to ensure they produce accurate results.  Going forward, all test strips will receive this testing.

How long had Abbott known about the defect? Does this stem from the November 2013 recall of your test strips?

Following the conclusion of the investigation linked to the November recall, Abbott expanded the recall.  Abbott contacted the FDA and promptly initiated a product recall in affected markets and has communicated with all affected parties.

How will customers know they are getting accurate test strips moving forward?

Strip vials with expiration dates of August 2015 or after are strips that are safe for you to use with your OmniPod.  Strips with expiration dates before August 2015 should not be used with your OmniPod, but can be used safely with a FreeStyle Freedom meter.

Are you working with pharmacies to prevent old test strips from going to customers who don’t have the Freedom meter? Are pharmacy stocks being replaced with the new test strips? When is it safe to reorder test strips?

Approximately 99 percent of the U.S. customer base who use Abbott’s FreeStyle family of meters are not impacted as they do not use FreeStyle Flash or FreeStyle Blood Glucose Meter systems.

In regards to the question about the replacement strips for OmniPod users, the 400 replacement test strips will be about a 2 – 3 month supply of strips. This amount should cover the customer until the customer’s next visit to the pharmacy to replenish their next test strip supply.

Due to these factors, there is no action required by doctors, pharmacies, and suppliers. If an HCP, pharmacy or supplier has a question, they should contact Abbott’s diabetes care customer service and a representative will provide support.

As mentioned above, strip vials with expiration dates of August 2015 or after are strips that are safe for you to use with your OmniPod.  Strips with expiration dates before August 2015 should not be used with your OmniPod, but can be used safely with a FreeStyle Freedom meter.

How are you handling international customers?

Abbott is working with the appropriate Regulatory authorities

Some customers are still complaining about inaccurate readings with the new test strips. Who can customers contact with any concerns they may have?

If a customer is an OmniPod user they should contact Abbott Diabetes Care Customer Service at If a customer is a user of the FreeStyle Flash or FreeStyle Blood Glucose Meter they should contact Abbott’s Diabetes Care Customer Service at

Why did the letter require a signature? Many users received the letter even later because of this.

The letter required a signature to ensure proof of delivery to  the customer affected, and ensure privacy.

Why did so many users find out about the recall via letter four days after the recall was announced on your website? Why did they not come out the same day?

Abbott and Insulet worked to notify OmniPod users as soon possible. We posted the letter to the website as soon as we could and then started the process of sending out the letters to affected customers.

Why have customer service reps been asking for insurance and doctor information? What is the purpose behind that?

Customers are being asked to provide doctor/insurance information in order to determine the most appropriate route for future strip replacements.

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It does appear that it will on the onus of the customer to make sure the test strips we receive moving forward are going to be the newest ones, and not older ones that the Freedom meter users can still use. This is disappointing, but I also suppose realistic if Abbott views those test strips as not being completely invalid. Test strips do cost thousands (possibly millions) to manufacture, and if we really are such a small portion of the population, I suppose I can understand. But I wish Abbott put a little more thought into how educating pharmacies about the issue to prevent the older strips from getting into our supplies.

And of course, the logic behind Abbott’s announcement of the recall was severely misguided and mishandled, but that’s hardly something they are going to address. The only thing I can hope is that they think about this a little bit more next time.

That being said: Omnipod is changing meter companies! DiabetesMine shared last week that the new Omnipod PDM will be made with the Lifescan Verio meter, and will hopefully be approved and on the market next year. This is actually not new news… it was first announced that Omnipod and Lifescan were working together in 2012 but that was well before I had any vested interest in the partnerships of Omnipod. So we’ll be stuck with Abbott for a little longer, and while Lifescan is certainly not a perfect company either (their accuracy standards leave something to be desired…) it will hopefully be a better partnership for the companies, and of course, for us!

What do you think of Abbott’s answers?