Aaron Kowalski and Cynthia Rice on Medicare and CGM’s

Yesterday, The Diabetes Patient Advocacy Coalition (DPAC) held its March Ask an Expert webinar series. The webinar included Dr. Aaron Kowalski and Cynthia Rice, both from JDRF.

The webinar brought attention to CGM data that shows it helps, data that shows Artificial Pancreas systems work, and how Medicare is not covering CGM’s and why they are not.

Throughout the hour, hearing them both talk, it was constant note taking. A lot of the information that they spoke about I had either heard or seen elsewhere before, but it didn’t all make total sense or fully sink into my brain until yesterday.

The reasoning behind why Medicare does not cover CGM’s is based on 100% BS. We, as a community, have done a great job reaching out to politicians to explain why it’s BS and why the Medicare CGM Access Act needs to be sponsored and cosponsored, but we need to continue the fight.

After every webinar from DPAC, I like to create some sort of actionable plan that I can easily do in order to continue to do something. Yesterday, I set up a calendar reminder once every 2 weeks to send letters, tweets, emails, etc. to my elected officials. Why didn’t I do it every week? Because, I have to be practical for myself and advocate the way that works best for me. I already knew that if I did it every week, it wouldn’t get done and then I would start hitting the snooze or remind button on it and then eventually it would be months later and never taken action on the events.

I also set up a few tweets and posts that I would like to send out over a period of time. One thing that Aaron Kowalski said was, “One thing that I do everyday is just try and get people involved.” That definitely resonated with me. If I can only do 10 things in a day, but I can also somehow get 10 others every day to do something, that is a lot more getting accomplished.

Another thing that I plan on doing in the next few days is to create “My Story” so that I can have saved and ready to just copy and paste when reaching out to my elected officials. As Cynthia Rice mentioned, officials like data, but they love to hear the stories of their constituents.

If you did not get a chance to attend the webinar, then you can watch the replay.

Read More

SunFest with the Insulin Pump

This past week was SunFest down here in south Florida.  It is a 4-5 day event with a lot of music from artists of all genre.  There is also a pretty large art festival too.  I believe that it started off as a large art festival and then music was added at a later time.  Anyway, I had never been to SunFest before because I am not a fan of music festivals. I love country music concerts, but don’t like festivals.  This is the first year that SunFest had a country music lineup, so of course I wasn’t going to miss that….plus I had a Groupon.

SunFest in south Florida just sounds hot and sweaty and muggy.  In the past, when I was using an insulin pump, my infusion sets usually fall off because of how much I sweat in these situations, so I was a little worried about the infusion set falling off and having to insert a new one in that crowded place.  Fortunately, it was overcast and raining off and on (which was ironic because David Nail was there and one of his hit songs as ‘Let It Rain’).

The infusion set stayed in the whole time and the CGM was working great, so I had a good feeling about the day.

The day consisted of only a few beers, some french fries, a cheesesteak, some rice and pineapple chicken, and a few other snacks along the way.  It’s SunFest, you have to have some unhealthy food!

I was a lot happier being on the pump than I would have been on MDI. It was a lot easier to take my insulin exactly when I needed, I had the CGM telling me when I was going low or high, and it was the perfect combination.  It made me remember why I used to say that I would never go back to MDI when I was on the pump.

It’s coming up on summer concert season, so there will be more of these stories to come.

 

Read More

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.

Read More

My Dexcom Giving Me the Finger

One Heck of a Dexcom Ride

The other day I went on one heck of a Dexcom ride.  I don’t like roller coasters because I have a serious fear of heights and have a firm belief that my death will come by way of a poisonous snake bite or a roller coaster coming off the tracks.  Therefore, I avoid roller coasters.  However, I cannot avoid those diabetes blood sugar roller coasters at all times.  Even though I try to, they still occur.

I haven’t had one in a while, but boy did I have one on Wednesday.  Tuesday night I was high, near the 300’s.  By the time I woke up in the morning, I had it down to about 120-ish.  Then I ate lunch and it went back up.  Right before dinner I went low to about 60-ish.  I was going to be eating chicken and rice, so I figured I would wait until halfway through my meal to take my insulin because I didn’t want to go super low while I was eating.  That’s when the steep increase at the beginning of the coaster started.  I went from a bg of 70 to a bg of 370 in under an hour.  I have NEVER gone that high, that fast.  In fact, I didn’t even think it was possible.  If it wasn’t for testing my blood sugar to make sure my Dexcom was giving me the right numbers, I would have never believed it. (more…)

Read More

Blinded vs Unblinded Data

Blinded vs Unblinded CGM Usage

During one of the Roche Social Media Summit sessions, the idea of blinded vs unblinded data was brought up. I’m not going to go into detail on why it was brought up or in regards to what product, because I just want to discuss the concept as a whole.

First, let me explain what blind vs unblinded data is. Blinded data, in regards to diabetes, is data that is collected in which the patient does not have direct access to. For example, if a patient is put on a 7 day trial of a Dexcom (or other CGM) to either trial the product or to have a 24 hour look at a patient’s blood sugar levels. This data will be used by the doctors to make a decision on your treatment plan. If the data is blinded then you as the patient cannot see the real time data, but will be shown graphs by the doctor after the determined time frame has passed. (more…)

Read More

Testing Out Other Insulin Pumps

When I was first diagnosed with diabetes back in April of 2004, I was on MDI using a Humalog insulin pen and syringes to take Lantus at night.  I was doing fine with this, and was actually eating healthy at that time and staying at a good weight, but I decided that I wanted to try out an insulin pump, it just sounded so much easier.  I am glad that I made that decision 5 years ago.  There are definitely things that I don’t like, especially the fact that I now eat anything I want, whenever I want because it is just a few pushes of buttons on the pump.  At the time, I wasn’t really given much of an option on a pump.  Also, at that time I didn’t know anything about diabetes.  I knew I had it and that was about it.  I had it less than a year before I went on the pump, I wasn’t blogging, and I wasn’t looking on the internet for information.  I was given a Medtronic 712 I believe they were called at that time, I can be mistaken.

I loved the pump.  I loved the way it worked and how it helped me manage my blood sugar levels a lot better.  Then I got into finding blogs online and just reading them and learning that there were other diabetes companies that existed other than Medtronic and One Touch.  I spent some time working for a diabetes supply company, so I had access to a lot of different products from different manufacturers and found out the benefits of all these different pumps.  I also learned more as I blogged longer and met more people using different kinds of pumps.  So, this finally leads me to the reason of today’s post.

I have been happy with Medtronic, but I’m not 100% loyal to Medtronic.  I would like to try other pumps.  I would love to try or test out the One Touch Ping and Omni Pod.  I have been given the trial pod for Omni Pod and I have worn it and I loved it.  The only issue is that I would be changing out the pod every 1.5 days based upon the amount of insulin that I use.  If I lose weight then the possibility of my insulin usage can go down and then I can use an Omni Pod.

Along with insulin pumps, I would love to try out the Dexcom CGM, but I just haven’t had a chance to do so.  I have used the Medtronic CGM in the past, but haven’t used it in nearly a year because I haven’t had any sensors and some issues with the insurance company.  Starting next year I will begin using a CGM again.  Whether it is Medtronic or Dexcom, it is one of my top goals for 2012.

For those that have used multiple pumps, not those that have only used one and will tell me how much you love it, but only those that have used different pumps, which have you liked better and why?

I appreciate any responses or feedback in advance.

Read More

How Do You Log Your BG?

Last week I was asked what my average blood sugar was and I could not give a good answer.  I thought, hmm I can look in my pump, but wait, I don’t always input my sugars into there.  So then, maybe I can look at my meter, but oh yea, I use about 4 different meters so those averages would not be accurate.  Finally, I thought I can look in my logbook, but unfortunately it hasn’t been touched in about 3 years.  I’ve made plenty attempts to use an excel sheet but then I started just writing numbers all over the place and never in the right place.  I decided to start using a logbook again.

Right now I am just using the Bayer one that came with the Didget meter.  I am going to take it old school for about a month and write down every sugar, the time, and how many carbs with how many units of insulin that I am taking.  I had put a question out on Twitter to see how many of you still used a pen and pencil logbook and some of the answers I received were expected, “What is pen and paper?”.  Even though I am an internet marketing guy, pen and paper to me still use what works best.  Eventually I will probably switch over to using the iPhone to record all of my sugars, but I’m not to that point yet.

Logging my blood sugars is something that I haven’t been very good at doing since I was diagnosed.  I recorded every single blood sugar for about a year, but then I became too comfortable with my diabetes and didn’t do it as well. I thought, what’s the point of recording them, if I can keep good numbers it doesn’t make a difference.  Or I can just upload the results to the computer, but then I started using multiple meters and couldn’t get a good, accurate average.

I am also going back to testing 10 times a day and knowing what is going on with my blood sugars at all times.  I have about 6-7 CGM sensors left that expired a few months ago, but I am going to give them a shot anyway and see how accurate they are. To end this post, I am going to ask for your help and just answer a few questions in the comments:

  1. What logbook do you use?
  2. What app on iPhone do you use?
  3. What computer software do you use to log blood sugars?
  4. Do you log food info along with blood sugars?

I appreciate your help with this.

Read More

Hey JDRF & BD – This is What I Want in an Insulin Pump

All this press about all these new technologies and studies and companies joining up with non-profits to do this and to do that, and blah blah blah.  At first when I read the post by Amy from Diabetes Mine about JDRF and BD joining forces, it instantly just reminded me of the post I just had last week about why there will never be a cure! Next, it made me think, well what exactly is it that I want from an insulin pump or what do I want to have in order to manage my diabetes.  This is not like a Jetson’s post.  I am trying to keep this stuff logical and something that can happen in the near future.

Easy to Use

The very first thing that I want is for the device to be very easy to use.  Now that all pumps have built in carb counting and insulin suggestions, it makes life so much easier.  I love that they calculate how much active insulin there is.  Not too many buttons, just 2 or 3 at max to do what I need to do.

Convenient

What I mean by this is that I want to be able to use my iPhone to link with my pump.  My iPhone is my life, literally.  I work from it, I communicate with family, Amanda has one also so we have apps that easily keep us in touch and on the same page with each others calendars etc.  I want to be able to just pull out my phone at the dinner table or at a restaurant and hit a few buttons and then bam, there goes the insulin.  I would like to also just have to use my phone as a meter, not just anyphone, because I know there are phones out there, but the iPhone.

Tubeless

I still use a Medtronic Paradigm, so I have never even used the tubeless / wireless OmniPod yet.  The number reason that I don’t is because I use about 120 some units of insulin a day.  That only holds 200, so I would be changing the pod every day and a half.  I would a pod to be able to carry, let’s say, 600 units of insulin.  I basically only want to change reservoirs and infusion sets, or pods just once a week.  It’s less work I have to do and less garbage and sharps containers I go through.  Charge the same price, it doesn’t matter.

CGM Built-In

I want the CGM and the pod or infusion set to the be the same insertion.  I don’t want to have to wear two separate things.  Very clear on that.

Well, that is what I want in my insulin pump.  I know some of these things exist, but not all in the same pump.  So, when JDRF is giving their millions to these companies, I hope they have spoken with diabetics themselves on what we want, not just what they want to create and think will make life easier.

What do you want?

Read More

Contour USB Meter – I Want One

First, my plan to start with the CGM yesterday didn’t go so well.  I did not have stable blood sugars for more than an hour yesterday, so I knew it’s not good to start a new sensor when my sugars are fluctuating.  So, we will have to try again today.  I’ve had a few bad diabetes days in the last 2-3 days.  My blood sugars haven’t been that bad, but also not that good.  I have had 3 sites fall out, I don’t know why they aren’t sticking.  I think it’s because my insertion device is not working properly.  I have another device, but of course I have no idea where it’s at, why would I know.

Today is going to be a long day.  I have a lot of work to get done, a lot of cleaning, a lot of laundry, and some ironing to do because I have an interview tomorrow.  I’m nervous because it’s the same office that my roommate works at, so I need to make sure that I am on my best game so I don’t make him look like a donkey(chose this word instead of the other to keep it pg), for him referring me.  Do you know how hard this is going to be?  There is a 24 hour marathon of college basketball going on todayon ESPN which is going to make it hard for me to concentration.  Plus, since this is the 3rd Tuesday that I have been unemployed, every Tuesday is a Law and Order: SVU marathon.  I have been probably never blogged about this before, but this is my favorite show.  Quick side note on SVU and how it became my favorite show.  Back in my freshman year of college I had a huge paper that was due the next day, what a surprise and I was working on it for like 3 hours straight without a break.  Then I decided to take a break and watch SVU for the first time, but I would mute the tv during commercials and do my paper for 5 minutes, then 5 minutes at the next commercial.  I did this for about 4 episodes of SVU and not only got my paper down, but read 3 chapters of a text book.  This than became the only way that I would do homework and reading, watch SVU or another show if it wasn’t on, mute the tv and then read.  I found that my attention span was only about 5 minutes anyway, so it worked out best.

Wow, sorry about that side not there.  I have seen a few people blogging about the Bayer Contour USB.  I freaking want one!  Can I call Nick Jonas to get one?  My little nieces (actually my cousins, but my aunt is more like a sister to me, so I have called them my nieces for 10 years, but now that I have an actual niece, my brother’s daughter, I’m not sure if I can still do that), they watch the Jonas brothers so that’s a good enough connection to them I think.  It looks so cool that you just test and then plug it right into the computer.  I never upload my sugars to the computer, ever.  I don’t have the USB cable for my Freestyle Lite, if I had one, I probably would.  My doctor’s office has every single one of them at her’s so when I go she just uploads them.

[As I’m typing this sentence a brand new episode of SVU is starting, pause while I watch the opening minute of it]

How many people have used the USB Contour already?  What are your thoughts, are there any bad ones of it yet?

Does anybody know how much it costs, or how much it is going to cost?

Read More

Using CGM, First Time in Two Months

Today I have decided to wear my sensor for the first time in almost two months.  I had it charging all night long because it wasn’t even connected to the charger during that 2 months.  I am not even sure if the sensors are still good because I know that they have  short expiration date.  Oh well, I will still use it and see how it goes.  I better change the battery in my pump though because I think it is almost at half life and the sensor kills the battery within a few days, even when it’s a brand new one.  I use the Medtronic CGMS just in case you didn’t remember.

I have a doctor’s appointment coming up in a few weeks and she really wants to see the results from the CGM and she usually only looks at the 2-3 weeks prior, so this is good enough amount of time for her to see, and also for me not to get in trouble again for not doing it.  I also have to get my A1C down next week, which I am not looking forward to because I don’t think that it is going to be a good number.  I have managed my sugars pretty well the last 3 months, but there have just been some random highs here and there that just concern me.

Today is also Monday, so we all know what that means, time to start the diet again.  I had coffee to start off the morning, but didn’t eat anything.  For lunch I am going to have a salad and a little bit of left over pasta.  Tonight for dinner I am going to a banquet for the football league that I coached this year.  There is going to be a lot of different random food because I believe it is a pot luck type style.  My assistant coach and myself are supposed to bring pizza, so I’ll be bringing whatever pizza is on sale, the kids won’t care, they will love it either way.

The afternoon today is also going to consist of more job hunting and submitting resume’s online.  I’m not just looking for a regular 9-5 but also some contract or telecommuting type jobs as well for CSI Marketing Solutions.  I haven’t been real aggressive in looking for clients, but I think it’s about time that I start to do that.

Well have a good week everybody.

Read More