As many of you know, I am pretty big fan of advocating for changes at the policy level. I strongly believe that majority of what we all advocate for, comes down to policy change. For example, better access to diabetes technologies will require state and federal policy changes to truly create the access that we need.
Tom will be speaking about Reegan’s Rule in North Carolina and how we can all use the success of Reegan’s Rule as a model of how to engage in state level diabetes advocacy.
I highly, highly recommend that you all join this webinar and learn from Tom on what we can do as advocates. If we truly want change, then we have to attack it from all angles, not just from a Federal perspective, but also from a state and local level as well.
I don’t ask for much, but when I do ask, it is because it is something that is extremely important.
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.
I am currently headed to California to attend the Medtronic Diabetes Advocate Forum.
You can follow along with all of the action by following the hashtag #MedtronicDAF
Medtronic has paid for my travel, lodging, and meals for this trip. I am also a Minimed Ambassador, however, I am not paid financially to be a Minimed Ambassador.
All thoughts, opinions and criticisms will be my own. Any future blog posts that I write about my experience at MedtronicDAF will be my own.
When following along with the conversation, please ask questions. I will do my best to bring those questions up during the conversation.
Please note, that if your questions are strictly negative statements, I will not ask them. If you are going to ask why they don’t give their products away for free, I will not ask them. Please form questions that can be used constructively, even if it is a negative based question, if you’re actually looking for a constructive conversation, I can pass along.
I was recently sent a Diabetes Stor-More from Advocate and decided to review the product. I currently have most of my diabetes supplies that I use frequently on my bathroom counter and my wife does not like that very much. When I heard about this product, I was actually very happy to review it because I really needed something to help with my countertop organization.
I currently have a pretty good organization method for my supplies, but my daily use items, not so much, especially syringes.
When I am on MDI, the syringes don’t always go right into the sharps container. I usually collect a bunch until they get out of hand and then throw into a sharps container. This has a nice compartment that you can either put unused or used syringes in.
There is also a great place to put your testing strips, meter, lancing device, insulin and more.
The bottom drawer pulls out and includes more storage for other items. I have currently been able to use it to store an extra infusion site, sensor, infusion site inserter and tape for my Enlite sensors.
You could possibly use it for gauze, alcohol pads, etc.
My wife is extremely happy that I now have this storage device.
I would definitely recommend it, especially if you keep supplies in your bathroom or kitchen counter or office desk, etc.
You can purchase this device directly at Advocate. You will have to call in to order.
I don’t think that I have ever written about my pump breaks on here, but I know that I have mentioned them on Twitter before. Basically, at least once a month I like to take a break from my pump.
The first question that you may ask is, “does this have an impact on your blood sugars?” You’re damn right it does. But, I don’t care.
Let me explain.
I don’t care because sometimes I get frustrated by my pump. I may have 3 consecutive days of needing to change infusion sets for whatever reason. Maybe one fell off doing hours of yard work in 90 degree weather. Maybe I decided to take a nice, long, hot relaxing bath which made the infusion set adhesive wear away and easily fall off afterwards. It may even be possible, that I just don’t feel like inserting a new infusion set that night, so I just go a couple of nights without wearing one.
Warning….if you live your diabetes life on label and the thought of people doing crazy, off-label stuff makes you upset, then please do not read any further, because the following is definitely not prescribed, nor approved of by my doctor (and not really me either, but sometimes, I don’t care and my sanity means more to me.)
I always have a full supply of syringes as backup. When I am off the pump, I just use a vial and a syringe…take it back old school. When it comes to basal insulin, well, here is where we trail off that on-label track.
I have two options during these times. My doctor gives me samples of Levemir every so often. If I have a sample pen of Levemir at home, then I use that. I know what your next question is…. “Aren’t the pens only good for 30-ish days after you open them?” Yes, but like I said, if there is still insulin in it, I’m going to use it. One pen only gets me through about a week, which is about all the time that I need for my break. If there is some leftover for next month’s pump break, then I will use it again. If the insulin isn’t effective, then I won’t continue to use it. I will either open up another sample that I have, or, just not use any basal insulin at all.
Yes, during majority of my pump breaks, I don’t actually use any basal insulin at all.
During the day, I keep a close eye on my blood sugar, but when I eat a meal, I will be sure to take what I need for the bolus, and then check again in an hour. If I determine I need more, then I will take more. Basically, I will give myself the 3.5 unit basal amount that I use per hour. During these times, my goal range is a bit higher, I am satisfied with anything under 220. I know that sounds like a crazy idea, that I would be happy with a blood sugar of 220, but remember above when I said, I’m willing to sacrifice an hour or two of a higher blood sugar in order to have sanity and not drive myself crazy having to put in another infusion set that just keeps seeming to fall out.
I do NOT recommend this for anyone. Don’t even talk to your doctor about this method. If you need to take a break from your insulin pump, then do so, but make sure you speak to your doctor about how exactly it would be best for you. Be sure to have an equation figured out to determine what your amount of Levemir or Lantus would be based on what your total daily basal usage is.
I have a tricky calculation, but it never seems to work, so I usually just use the calculation every time, then adjust the next night and then the night after that. Then when I go on the next pump break, I start off where it was working before.
How do you handle breaks from your insulin pump? I would love to hear your stories. Please share in the comments below or on Facebook.
I know, the title sounds like some sort of bad ad copy for a mail order prescription company, but that’s not what it is. I used to get my prescriptions for oral medications filled at Target, but once they switched to CVS Pharmacy, I got out of dodge as quick as possible. I’ve written several different times over 7 years about my disappointments with CVS.
I decided to switch my oral prescriptions over to Publix pharmacy. Publix is a local grocery store in Florida. It is actually one of the companies that ranks in top 20 businesses to work for in the country. I switched because where I live, there is only a Walgreens and a Publix and Walgreens didn’t take my insurance, so Publix it was.
I loved how quick and easy it was to get my prescriptions there. There has never been a line to wait in, they call my doctor for any refills or updates needed, they deal with any insurance issues, they call me if there is an issue instead of waiting until I get there to pick it up, they text me when it’s ready, along with the exact price (my generics change every time so the costs vary depending on which generic they are using), and the staff is very friendly.
Because of this, I’ve actually decided to start getting my test strips and my insulin from them on a monthly basis as opposed to saving $20 and getting a 3 month supply. The mail order pharmacy that I had to deal with was always filled with insurance. If at anytime, I needed refills, or emergency orders, it would take “24-48 hours to process a new refill request, and then another 24-48 hours to ship out”, meaning that it would take a minimum of 2-3 days to get a new prescription or update to my insulin prescriptions shipped out.
I’ve now been using Publix for 3 months now and I absolutely love it.
It has been the easiest time in over 10 years of dealing with insurance and supply refills.
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.
As some of you may recall my niece was diagnosed with type 1 diabetes back in October of last year. The diagnosis was a few days before Halloween and also her birthday. She has been handling the diagnosis like a champ since day one. Fast forward a few months, she is wearing a Dexcom and Omnipod and playing soccer. Back in January, I was up in Pennsylvania for a quick little family visit and I had the honor of being her guest speaker at her Daisy’s meeting in order to get her Defeat Diabetes badge.
During her presentation to her Daisies she showed famous people with diabetes. One of those people was Sierra Sandison. She had a few pictures of her. One of her showing her insulin pump, her book and another one wearing her Miss Idaho crown. My sister in law had told me that she loves Sierra and always talks about her.
I wanted to do something for my niece because she has been handling the diagnosis so great, so I reached out to Sierra to just ask if she could do something for my niece.
Well, if you haven’t heard already, Sierra Sandison is pretty freakin awesome!
About a week or so later, I received the following texts from my sister in law.
I just wanted to take this time to say thank you to Sierra again. Little things like this go a long way in how a young kid handles their diabetes management. My niece is so excited to show people her pump and her CGM. She willingly tells and shows people about it. I am proud of my niece for how she is handling it and once again thank you so much to Sierra. I know for a fact my brother and sister-in-law are even more thankful for this wonderful outreach.
Amanda and I have always been fans of local farmer’s markets. For me, I love the fresh food and small businesses that are out there hustling. I am a huge fan of homemade items that are usually sold at farmer’s markets, such as pickles, jellies, pepper jellies, baked goods, fresh veggies, etc.
Our local farmer’s market is located right next to the intracoastal waterway so it is a beautiful site as well. We had not been there in a while, so we decided to check it out and see if there were any new vendors. There were some new ones there and I knew it was going to be time for a BG check and some insulin because I saw some great free samples.
That leads me into what I wanted to talk about. During this time, I was taking an insulin pump vacation for the weekend and was just using a syringe and vial. Walking around eating free samples and not knowing exactly what I am going to be eating never worked out well for me when I was on MDI. When I am pumping, it is not a big deal because every time I decide to eat something, I just bolus for it with the pump and that’s that.
When I am on MDI, my strategy is a bit different. And in the comments below, or on Facebook, I would love to hear your feedback and your comments on how you handle situations like this.
In a situation like this where I am eating random items that are free samples, they typically are not large enough that I need to worry about a bolus. If I eat 3-4 free samples from different vendors and I feel like it was a significant amount of carbs, then I will simply stop and take a shot. If I know that I am going to eat something that is not a free sample, but an actual item (New England Clam Chowda at this farmer’s market is amazing!) then I will bolus directly for that.
The other issue is that depending on what you are eating (sweet pickles, pepper jelly) it is difficult to guestimate how many carbs are in a specific food. I honestly do not get mad if the vendor does not have that information. I just ask what they put in it and I do my best to guestimate. If I am wrong, then I correct, simple as that.
Usually after the amount of walking that we do at the farmer’s markets we go to (at least 2 miles altogether) the exercise helps burn off some of the food that I ate and helps balance out the blood sugar. Please note, I am not saying exercise is going to lower my blood sugar and I don’t need insulin, so diabetes trolls, stop right there.
Like I said above, I’m curious as to how MDI-ers handle situations like this? Would love to hear your feedback.