The other night I was up late working and needed to rewind my pump and fill up a new reservoir. I knew the battery was low, but I was hoping I could just make it to the morning because I was in my office where I didn’t have any spare batteries.
While in the middle of rewinding the pump alerted me that the battery was dead and the pump needed to be restarted. Once I restarted, I tried to rewind the pump again, but I could tell that it already finished rewinding.
I attempted to rewind and it would get another area and need to be restarted.
This just kept happening over and over and over.
At that time, I knew the pump was having some sort of motor issue and was done.
This was at about 1:45 AM.
The back up plan was needed.
Luckily, I always try and keep some form of long-acting insulin at home. I usually get this from my endo as samples that haven’t been used and she needs to get rid of.
I took a lower dose of what I would normally take for basal insulin because I knew I had a lot of insulin on board at the time.
First thing in the morning, I called Medtronic and went through the troubleshooting and determined that indeed the pump was not going to work. Since the pump is under warranty a new one would be sent out to me overnight and I would receive it by noon the next day. That’s almost a 24 hour turnaround time.
The point of the story here is that we all must have a backup plan if using an insulin pump.
Do you have one?
Do you have any long-acting insulin? Do you have your pump settings saved? Do you know how much basal insulin you need?
If you don’t have a plan yet, then I highly recommend speaking with your doctor or healthcare professional in order to create an insulin pump failure backup plan.
As I was finishing this up, I heard the horn.
There was the big brown truck with my replacement pump.
Last week I had the honor of joining 20-some other diabetes advocates for a meetup in Northridge (Los Angeles) CA. This is my second time attending the Medtronic Diabetes Advocates Forum (MedtronicDAF). Hopefully you were able to join in on the conversation on Twitter last Thursday during the one day meetup.
This year was a bit different because I met a lot of new people that I haven’t met before and it also included voices from Canada and Latin America.
The very first thing that I noticed is that our needs in the United States are different than those in Latin America and Canada.
The night before the actual forum, we had a group dinner where I had the pleasure of speaking with Louis Dias, Chief Patient Officer for Medtronic. This is a new position, but something that Louis is familiar with from his time at Johnson & Johnson in the contact lens world. I was able to speak with him about what some of the challenges may be for him in his role with Medtronic and how we as advocates can help him achieve his goals.
This conversation also included Scott Estrin from Rolling in the D and he added his concerns from an engineering standpoint. I always find it fascinating when engineers speak because they tend to look at problems differently.
One of my talking points throughout the entire meeting was that I am sick and tired of people wanting to complain and demand things but don’t have a solution for the problem. For example, “your product sucks”, “your sensors suck”, “I want this feature in my pump now”, but then have no feedback as to what exactly is wrong or how it could be made better. Scott is the complete opposite. He provides his insights into what he believes could work or why the current situation is not working.
On Thursday, the forum opened up with some introductions but first up was Louis Dias. The main theme throughout the day was this phrase:
Transforming diabetes care together for greater freedom and better health.
Louis explained how Medtronic is looking to be a more patient centric company by putting the patient in the middle and then branching their products out based on the needs of the patient. This, in my opinion, is why any business should be in business. Solve a problem and you have a business. Creating a product based around a problem is a path down a bad PR road.
I had asked Louis during the forum what kind of patient focus groups are taking place. As a patient centric company, that should be the #1 priority. Finding out straight from the patient what they want and need and creating something around that.
Louis’ answer was quite frank:
We have recently done 67 1 on 1 interviews around the globe, however, we need to do more.
I like the fact that they know that they need to do more patient focus groups, now the issue is whether or not they actually do it, and I strongly believe that they will.
I became a big fan of Louis Dias and I could spend the next 1,000 words talking about what he discussed, but I will move on and touch on all areas before I lose you.
The next session was based around type 1 management and products. The biggest issue that came up here was access to this wonderful technology and big data and new products. I will get to that towards the end of this post, so keep reading.
I want to skip to our fireside chat with Hooman Hakami, the Group President of Medtronic Diabetes. This was an open Q&A with Hooman and I must admit, I felt confident in the direction that Medtronic is heading with this guy steering the ship.
One question that was asked was about Medtronic working with other systems and their data being kept to themselves. Hooman had mentioned that he would be open to the data becoming open, however, working with other companies is not very feasible, and the answer may have not been what everyone wanted to hear, but I don’t see anything wrong with it.
I know I don’t share the common opinion about this topic, but just think about this, have you ever seen a Pepsi-Coke soda? How about a iAndroid OS or a StarDunkin coffee? No, why? Because they are different companies with competing products, very simple. Also, if Medtronic was to get a pump approved by the FDA to work with, let’s say Dexcom, then in order for Medtronic to make any updates, they would first have to wait for Dexcom to make their devices compatible to those updates, then wait around for FDA to approve this. So, why would a company slow down their technology development process because they are waiting for another company?
It just doesn’t make sense.
Moving on to access, which is another post in itself as well, but I will just keep going here. Basically, Medtronic (and everyone else) knows that there is an access problem. Medtronic is working hard with IBM Watson and their internal data team to create the data that is needed to show payers and CMS that insulin pump therapy and CGM usage is actually needed for better diabetes management. The data mixed with real life stories from people is what is needed to change payer policy.
Which you can take 60 seconds right now and send a letter to your elected official asking them to co-sponsor legislation that will help get CGM’s covered by Medicare.
Access seemed to be one of the biggest talking points during the forum. As I mentioned at the beginning, the access issue was different depending on if you were from the United States or the Latin America group. For them, access just meant being able to afford the basic technologies and having access to the education and support that is needed.
I know that there is an affordability problem in the United States as well, but there are different levels here, whether it’s because you can’t afford out of pocket, co-pays, or because your insurance will not cover it.
Since, I am from the United States and it’s what I know best, it’s what I will stick to. I’m not going to venture down a path that I don’t have experience in.
Better Access or Better Technology
There were several comments about access and none of this great technology means anything if people can’t afford to use it and that it is going to create a bigger gap between the have and have nots. First, let me say, I totally agree. Great technology means nothing if it is not affordable and can’t actually be used.
On the other side, how can we ask a company to halt their research and development and stop creating new technologies just to focus on something that is not 100% entirely their fault or that they can’t actually solve by themselves?
Listen, I totally get that I am privileged enough to have insurance (I didn’t always, I went 18 months with zero insurance) and I have access to the latest and greatest. But what I don’t get is that as a community we demand better products, but then when a company creates them, we then complain that they are too expensive. New technology is not cheap. Research and development for on-going better technologies is not cheap. If we truly do want the greatest and best technologies, it is going to cost money.
There is a reason that not everyone has the iPhone 6 Plus. One reason is because they can’t afford it. Do we demand Apple to stop innovating and go backwards to create a much cheaper model?
I know, it’s phones vs insulin pumps / sensors, not the same thing, but I’m trying to make the point that we can’t have Fast, Good, and Cheap… you can only pick two.
Better access or better technology? I choose both.
So, what can we do?
We can’t just rely on Medtronic and other pump companies to solve the insurance / Medicare access problems by themselves. Only so much can be done from the company making money off of it. These companies need your help as a consumer of the products. (If you’re offended by the word consumer, get over it, you consume their products, therefore you’re a consumer).
If you want access, you can’t just sit back and do nothing. You have to act. If you have insurance and you are denied for a Medtronic pump. Call Medtronic, call your rep. They will help you get the paperwork that you need, gather the proper data, write letters. As soon as you get done putting one letter in the mail, start writing another one. Start writing to your Mayor, Governor, House of Reps, Senator, start writing letters to the President of the insurance company or even taking pictures of your infusion set problems.
Every story matters.
The data is great, but your story is even better.
You can sign up to become a DPAC Insider (Diabetes Patient Advocacy Coalition) so that you can stay up to date on all advocacy efforts and learn how to become a better advocate for yourself. Don’t even worry about advocating for others, advocating for yourself in the long run will help others.
Finally, how do we provide access to people who are uninsured and are paying out of pocket. This is where we need the pump industry to do something, that they can do. Maybe they can’t provide their most latest and greatest technologies for the cheapest price, but just like the smart phone example, there’s a reason why you can get a iPhone 4s for $0.99 when the 6Plus costs $500. It’s older technology, but it gets the job done.
So, why can’t Medtronic and other pump companies sell older models for a much more affordable cost?
Overall, I was happy with this year’s forum. I know it was only one day and it was quick, but who wouldn’t want to spend an entire week discussing diabetes issues with other advocates? I don’t mind the one day event because it was filled from 7 am – 4 p.m. Even during lunch there were conversations happening. I also feel that the one day time schedule forces people to speak up right away. It doesn’t provide you time to keep things to yourself and wait until a later time to bring it up, it makes the conversations happen now.
As I mentioned, it is important that the DOC keep these sort of conversations moving forward even after events like MedtronicDAF. The fact that the Medtronic Diabetes Executive team was sitting there open to Q&A and listening was just the beginning. They have learned and reacted from mistakes in the past brought up to them, however, how they move forward with the feedback that was provided this time around will be exciting to see.
Discloure: Medtronic Diabetes paid for my travel, food, and lodging expenses for this trip. The one thing they did not pay for was my opinions in this article, as these are free and only mine. I am also a Minimed Ambassador, but do not receive any compensation for that.
Today you can check out an article I wrote for Medtronic’s The Loop Blog about the 5 ways that I treat a low blood sugar. Just click the link below and head on over there. I would love to hear your unique ways of treating a low blood sugar.
A few months ago my application to become a MiniMed Ambassador was approved. This was very exciting for me, as it was something that I wanted to do for a while. I did not want to apply for the program until I felt that I had enough time to manage anything that would be asked of me from the program. For example, being able to respond to people who are looking for help.
The main reason that I wanted to become a MiniMed Ambassador was simple. It was because when I first was given the choice to go onto a pump, I was excited, but I had so many questions. At that time, almost 10 years ago, the only person that I could ask questions to was my CDE, who was also my certified pump trainer. My questions ranged from, can I swim with it? Can I shower with it? Is it surgically implanted inside me? (Yes, that was one of my questions because I initially thought that’s what the pump was. An infusion site sounded like a medical procedure to me!)
Throughout my 7 years of writing this blog (wow, time flies), I have had so many questions asked to me about going on an insulin pump. It’s probably the questions I get asked the most. So, I knew that as a MiniMed Ambassador, I could help people answer those questions.
I am proud to call myself an Ambassador along with all of the other great people.
Two weeks ago I posted about the whole denial and approval process of my Minimed 530G system and was asked by Mike Hoskins if this is typical for all insurers or just UHC? I do not have information about the other insurers, but I was told by Medtronic that UHC is now approving requests for the Minimed 530G with Enlite.
Here is a statement from Medtronic:
“There was a period of time where UHC was not covering MiniMed 530G with Enlite. However, this has recently changed. If you know anyone in the community who experienced similar coverage issues with UHC, feel free to let them know UHC is now approving MiniMed 530G for people who meet their criteria.”
So, if you have been denied before with UHC, please reach out again and see if your luck has changed.
As some of you may know, I was offered a free trial of the Minimed 530G (Disclosure Post) and have been using it ever since. Once the trial was over, I made the decision to stay on the 530G system and the process of getting it covered by insurance was about to begin. And it was a long process.
After the first submission to UnitedHealthcare, it was denied. I received a phone call from my local Medtronic rep, as well as the marketing team at Medtronic who was working with me throughout the trial process and my endo. They all explained to me that this was a very typical response the first time around, but that they were going to submit a letter to the insurance company to get an approval the second time around.
However, the team already knew that the second claim was going to be denied as well. They explained to me that usually it takes three attempts and then after that third attempt is when it finally gets approved.
Long story short, that’s exactly how it happened.
Normally, I would have been pretty upset and irritated that every time I received a letter from UHC, it was a denial letter. But, for the fact that I already knew I would receive these denial letters, it made it a lot easier. Also, the fact that I just had to sit back and do absolutely nothing and that my healthcare team and Medtronic themselves were working for me, was pretty comforting.
After that initial denial letter, I was sent the following PDF from the Medtronic team that outline the documents needed from your healthcare professional and the appeal process and what you can do to speed up the approval process.
Now that the process is over and the system was approved and that I have received the product in the mail is very exciting. I can’t wait to get it all set up and start using my own instead of the trial demo product.
Back in January when I had the pleasure to attend the Medtronic Diabetes Advocate Forum, one of the focus areas was the Medtronic Customer Service and their StartRight program. During the presentation, I was very excited about how much effort was being put into the Medtronic customer service team. In the past, I have had some bad experiences with customer service. However, Medtronic was the first medical company that actually would allow an individual rep to email me directly, and for those that know me, email is my ONLY form of communication.
When I started back up on the pump trial a couple of weeks ago, I received a phone call, voicemail and email follow up from the StartRight team to make sure that I had all of my supplies delivered, I prepared for my training and to see if I had any additional questions or concerns. After the training occurred and I started on the pump, I received another follow up a few days later to see if there were any questions or concerns again about being on the pump or Enlite sensor.
I think that this is a great way to handle a new customer being on a product. First, making sure that they have everything they need to get started and then provided some follow up support after they have been using the product for a few days.
Obviously, I live on social media and when I have complaints or issues that I need taken care of, I use social media to attempt to communicate with a company. I actually prefer doing business with a company that will communicate via social or email instead of those that always just want to call and discuss things over the phone. Have I mentioned I hate being on the phone yet?
Medtronic has been doing an amazing job with their social media customer service. After the first few days of being on the sensor, I mentioned on Twitter that I didn’t tape the sensor down properly, so I received a reply on Twitter asking if there were any specific questions that I had, and then was provided a link to the Medtronic support page that provided more details about the taping of the sensor….perfect.
Then, it got better the next day. I then had an email from Medtronic titled – Additional Tape Tips.
This is customization at its finest. Although this was a pre-formulated email, it was addressed to me and made it feel customized and unique to my situation and my issues (PR companies, take note!)
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.