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Changing the Diabetes World – DBlog Week

I am so happy that this topic is part of this year’s DBlog Week.  Even though most of us are advocates, we may not all care as much about certain causes as others do.  And as long as we don’t judge each other on not caring as much about certain topics, than that is a good thing.  We should put the effort into what we care most about.  If you are not passionate about something, it’s pretty much a waste of time.

For me, there are three main areas of concern that I have: Education, Policy and Doing it for the Kids.


When I was diagnosed, I went to the hospital with an 858 blood sugar.  I have told this story a lot, but I had all of the symptoms for a couple of months and knew nothing about them or the disease.  If I would have just had some basic knowledge of the disease, I could have probably gone to the hospital a lot sooner than I did.  This education could be done in a health class in high school or middle school.  Of course, I probably wouldn’t have paid much attention to it, but I would have remembered something about constantly peeing every 10 minutes.

After that initial education of general information about the disease, it is alarming how many people with diabetes, don’t really know anything about diabetes.  This could be for many reasons, and if it’s from ignorance of the person with diabetes, then there isn’t much we can do about that.  However, for those that want to be educated, but can’t because their insurance won’t cover anything more than a 15 minute visit every 90 days, there is something that we can do about that.  What is it that we can do? I don’t know, if I had the solution, than I wouldn’t need to be advocating for it.

How do we solve this issue?  Maybe something to do with the next area of advocacy.


There are a couple areas of concern that I have when it comes to policy change: Test strip / Meter Accuracy, Coverage of CGM and Insulin Pumps, and Education.

With the effort from the community recently on the amount of comments on an FDA docket, you can see how a little effort can go a long way. Strip Safely is by far the best place to learn more about advocating for meter accuracy.  If you would like to know what you can do to help, please visit the site or reach out directly to any of the founders ( Bennet, Christel, Kerri just to name a few).

There is enough data out there to show that those wearing CGM’s have a better chance to manage their diabetes better than those who do not wear CGM’s.  Please, do not try to argue with me that you are doing great management without a CGM, because that is not what I am saying here, so save that for something else. For those that wish to wear a CGM but their insurance doesn’t cover it because it is not a tool used to dose insulin means that a person is not allowed to have one…. that’s just ridiculous.

Also, I live in a state, Florida, where state Medicaid dollars will not cover an insulin pump, without at least 157 hoops to jump through. This is just not right. This is an area that frustrates me because I know how much better my management is with a pump than without it. Once again, Your Diabetes May Vary, so save the argument. But, to not be given the choice of how you want to manage your diabetes is not a way that those with diabetes should have to live. So, how do we go about changing this?  We have seen advocacy work in the online space recently with getting insulin pump coverage in the state of Arizona.

Doing it for the Kids

As a kid, I did not grow up with diabetes since I wasn’t diagnosed until the age of 19.  However, I grew up aspiring to be a professional football player, which knee reconstruction shot down, but it always felt great to have older football players come in and talk to us and tell us stories and give us the motivation to work hard to get where we wanted to be.  This applies to a lot of kids, and I don’t think it’s any different for those with diabetes.

I’ve had the pleasure to attend several diabetes camps, meet-ups, and talk sessions where I was able to talk with kids from the ages of 8-16 and tell them stories and relate to them instead of their parents just always lecturing them. I’ve received emails from parents thanking me because they saw an instant change in the way their child was acting towards their diabetes management, and when that happens, it makes me feel that everything that I do is worth it.

In wrapping this up, don’t feel that you have to be involved in every single issue. If you’re heart is not in it, than leave it to those who are.  You will not be judged and looked as a bad person because you are not posting and tweeting about every single advocacy issue that is out there. And if you are judged by that, then the person judging you is just an idiot

Happy Diabetes Blog Week!

Usher Please Take it Nice & Slow

I never thought I would work a 1997 My Way song title into the title of a post, but thanks to Usher, I have been able to.

I’ve seen a lot of people commenting and talking about the announcement by Usher that his child has type 1 diabetes.  And for the most part, I disagree with a lot of what I’ve been seeing.

There’s been a lot of, “I hope he uses his celebrity status to advocate for diabetes” or “hopefully he will donate money to help find a cure”.  I’ve also seen the, “what a sad story, hope him and his family are doing fine with the diagnosis”

The latter is what I think is the best thing that should be said at this time.

Christel wrote a great post yesterday and I recommend that you read it.

She basically wrote everything that I was thinking before I could type it myself.  Focus on your child and the diagnosis and learning as much about the disease as you possibly can.  I’ve just hit my 10 years living with the disease and I’m learning things almost every single day.

Let’s be clear about one thing though, just because you are a celebrity and you have a large network and reach, does not mean you have to be an advocate of anything.  If you do not feel like being an advocate, don’t.  If you are not advocating for the right reasons, then don’t do it at all.  If your heart and passion is not in the advocacy world, then don’t do it!  I have more respect for a celebrity that turns down endorsements and advocating for something just because they are being paid to do it.

Advocacy is not just putting your name on an event or a fundraiser. I live in the south Florida area, so I see a lot of news about Ray Allen, who plays for the local Miami Heat, and what he does with the local community and JDRF and DRI.  His heart is in it.  If he didn’t do these things, I would not lose any respect for him.  Advocacy is not always easy, in fact, it hardly ever is.

This is not just about Usher and advice for just a celebrity with diabetes or a child with diabetes.  This is for anybody that goes through a diagnosis, either themselves or a child.  Focus on yourself and your family before you go out looking to help others.  It’s not stingy, it’s what’s needed.  Don’t feel obligated to do advocacy work. If you can do it, and your heart is in it, then absolutely do it.  But don’t do it because it’s forced and something that you feel like you should be doing.

YMCA Diabetes Prevention Program

Last week I was contacted by someone at my local YMCA because they were given my information from my endo (she’s not an endo, I don’t know her exact title, but she’s who I see at the endo office). As I’ve written about before, my endo office is great with sharing information that I give them about diabetes inititiaves and outreach programs going on, which is why they put me in touch with the Y.

Last Friday I had the chance to meet with Robin from the Y to discuss the Diabetes Prevention Program. If you have not heard of this program, no worries, because I didn’t either until Friday when I stepped into the office. Basically, the program helps those that have a high risk of developing Type 2 diabetes and works with them to reduce their risk for developing T2D (or help slow it down) by making improvements to their overall health (eating, exercising, lifestyles, etc.) This program is based off of research done by the NIH that these changes in lifestyle can help reduce the numbers of Type 2 Diabetes diagnosis.

Before anybody tries to jump all over me, I know that diet and exercise is not going to stop everyone from getting Type 2 Diabetes, but we all do know that these changes help prevent those that are at risk. Read More

DOC is interviewing the FDA

The information below was emailed last night and I wanted to share with y’all on here.  The message was originally from the FDA.

Please join us for a Patient Network Live Chat!

Diabetes: Glucose Monitors and Test Strips

Talk with FDA expert Courtney Lias and Patient Advocate Bennet

Dunlap about Glucose Monitors and Test Strips

Monday, March 31, 1:30–2:30 pm (EDT)

Talk, share, and connect with the

FDA and the Diabetes Patient Community

• Do you want to learn more about the role of the FDA in the regulation of medical devices,

such as glucose meters and test strips, used in the management of diabetes?

• Do you want to learn what the FDA is doing to increase the accuracy of blood glucose

monitors and test strips?

When you participate in this friendly online chat, you will:

• Enjoy an informal, open discussion with a fellow patient advocate, CDRH subject-matter-
expert and others in the diabetes community.

• Learn more about the role of the Center for Devices and Radiological Health, specifically the

Office of In Vitro Diagnostics and its work to ensure the safety and effectiveness of medical

devices used in the management of diabetes.

• Get your questions answered about the newest FDA draft guidances, which are proposing

new recommendations intended to improve the accuracy and safe use of blood glucose

monitoring test systems, giving health care providers and people with diabetes better tools

to manage blood glucose levels.

Whether you want to just listen to the interview to get informed, ask

relevant questions to better understand the medical device regulatory

process or just speak your mind on the newest draft guidance document….

you should join in the conversation.

Mark your calendars and be sure to join us on March 31st, 2014.

A Rose that Saved a Child’s Life

You may have been seeing around the blogosphere that from Feb 1 – Feb 14, the Spare a Rose campaign is in full effect.  Now, I am not going to spend a lot of time on my blog writing about this, because most of the readers of this blog already know about this awesome idea.  My goal has been trying to reach those offline and finding ways to connect with people who do not read my blog, follow on Twitter, etc.  I know that this is the goal of just about everyone else who is promoting the campaign.

For those that don’t know about Spare a Rose, let me tell you why it’s important to me.

I am one who does not get emotional very often, but when it comes to seeing images of little kids who are struggling to live because they don’t have the simple necessities to live, like insulin, it just breaks my heart.  We all get upset and blast on Twitter about the latest and greatest technology that wasn’t covered by our insurances, yet, we at least have our insulin to keep us alive to make those complaints.  This all comes into perspective when you watch the Life for a Child video and realize that these kids don’t even have the insulin it takes to live, let alone the CGM that doesn’t communicate with your iPhone.

Now, just a little more information about Spare a Rose.

The concept is very simple. Instead of buying a full dozen of roses, leave off the cost of one rose and donate that amount of money towards providing insulin for a month for a child.  Donate the cost of a full dozen and you can provide insulin for up to a year for one child and help keep a child alive for another year.

Now, do me a favor, even if you can’t donate any money, please spread the word. Tell people in your office, family, friends, ask doctors to post the info, teachers, etc.

The Naming of the 530G as an Artificial Pancreas

I know that I am a little late to posting my thoughts and views from the Medtronic Diabetes Advocate Forum, but better late than never.  There has been a lot of great posts and follow-ups out there to read to keep you busy.  The first topic that I wanted to touch base on was the usage of the phrase artificial pancreas and some of the backlash that Medtronic received when using that phrase for the 530G Enlite System.

When it comes to naming of things, marketing, etc. I am not too concerned with a name that is used.  I completely understand the backlash however, because of the false hope that it gives to people who hear or see the name Artificial Pancreas.  On the other hand, I am a firm believer that it is your own personal responsibility to understand the tools that you are using to manage your diabetes and to do your research.  One look at the 530G system and you would know that it’s not a true, fully closed loop artificial pancreas, but it’s a system that is helping to get closer to the end goal.

What was nice to hear was that Medtronic admitted to the mistake and also understood the backlash and made the comment that they would put more time into naming their systems.  VP of regulatory compliance, Mark McDonnell said “we’ve heard you about the term artificial pancreas”

I know that I was not alone when I say, “I don’t care what you call it, make it work and make it accurate”

I would much rather the extra time that is spent on the naming of the product to be spent on testing the accuracy.

Now, enough with the naming part of the 530G, and I encourage the debate, because I agree that the naming could be better, but also am not too upset about it.

One of the features that the 530G system utilizes to get it closer to being an artificial pancreas, is the low glucose suspend, which will suspend the pump when your blood sugar is approaching your low level that you have set up with your doctor.  This feature is great for those that go low in the middle of the night, but may not feel that they are low or do not hear the CGM beeping, vibrating or whatever other song and dance it does when you’re going low.

As somebody that doesn’t go low too often in the middle of the night, and when I do, I have had the benefit of recognizing it and being able to wake up and correct, the low suspend is not as important to me as a high glucose insulin delivery feature would be.  That is how to come closer to closing the loop and being an artificial pancreas.  Catch the spike in a BG and dose insulin as needed, but I know there are a lot of dangerous “what if’s” that come into play here, but that is where the R&D will help.

I cannot remember which Medtronic employee said this, but the comparison to a fully closed loop system and an airplane was made by saying, “Full closed loop system is like an airplane on auto pilot..there’s still a pilot there to make decisions and provide input”

The bottom line of all this discussion on the 530G and it being named an Artificial Pancreas is this. Let’s get the product where it needs to be, make it work, make it accurate, make it accessible, educate the end users and the HCP’s, and then less worry about what we should call the wonderful technology.

Medtronic Diabetes Advocate Forum

This past weekend I had the opportunity to attend the Medtronic Diabetes Advocate Forum. I have been to a couple other industry / pharmacy events in the past, but this was my first Medtronic event. My initial thought when I was invited to this is that it was called an Advocate forum and not a social media summit or meetup which led me to believe that there was going to be more than just social related topics, which is what I was hoping for. Luckily, there was a mix of on and off line action items.

I used the phrase action items because that’s exactly what came out of this entire trip. I walked away with a pretty lengthy to do list as opposed to a long “I want to do” list. This community is strong and helps each other out, so I’m sure I’m not just speaking for myself but there will be plenty of calls for help from those that attended.

There were a lot of items discussed over a short period of time and I want to provide as much info on each of those topics as I can, so I will be breaking down each area of interest into its own posts. I feel that as an invited attended, it is my responsibility to provide you with as much information as possible for those that were not able to attend. The topics of a few upcoming posts will be on :

  • Artificial Pancreas – Naming, closing the loop, system, moving forward
  • Spare a Rose
  • Strip Safely
  • Regulatory and Policy Changes
  • Customer service, feedback, making changes
  • Redundancy Sensors
  • And more..

My overall feeling at the end of this forum was that I thought it was fulfilling. I had a discussion with Bennet as we were printing out boarding passes and mentioned that out of the several of these events that I have attended, this is the first time that I am leaving with an actual agenda and action items and not thinking, “I hope we follow through on some of these things” and more of a feeling that we already have action items to handle from this meeting.

As I mentioned, this post is more of a brief outline of the posts to come because I feel that there is enough material discussed to go into more detail about the items listed above.

If you have any questions, please leave a comment and I will get a Medtronic answer for you if I can’t answer myself.