I’ve been nominated for a 2017 WEGO Health Award. I have been nominated in the Healthcare Collaborator – Patient category. I am honored to have been nominated.
This aware is for people who speak at conferences, consult with healthcare companies to try and make change in the healthcare industry.
This is something that I am passionate about, and one reason I receive a lot of negative feedback from some.
As someone with diabetes, I know that I have to rely on products that are manufactured by businesses in order to survive. So, I can just constantly battle with these businesses or I can work with them to find common ground and help them make advancements with the community as whole.
I have to live with them, so why not live peacefully with them.
You can click on the badge on the right hand side of the screen for desktop or scroll down to the bottom if you’re on mobile to vote.
Last night during the weekly #DCDE Twitter Chat (Tuesdays at 9 p.m.) there was a mention of how HCP’s use the diagnosis code of “Uncontrolled Diabetes” and I tweeted that I don’t really care about that and don’t care what you call it.
I understand that language matters and I totally get it. I, personally, am not really effected that much by the language and wording used in the diabetes world. Myths, yes. But specific words and language, I don’t let it bother me, because at the end of the day, it’s just a word or a phrase. It’s sort of like the old saying from elementary school – “Sticks and Stones may break my bones, but words will never hurt.”
There’s a few reasons why I don’t care about the phrase “Uncontrolled Diabetes”.
First, it’s just a phrase, it’s not that big of a deal. “When I go to get blood work and the receptionist sees ‘uncontrolled diabetes’ they think I’m not working hard to control my diabetes and it undermines all of my hard work.’ Well, guess what? I don’t give a fuck what the receptionist thinks. Nor do I give a fuck about what anybody else thinks when they see “uncontrolled diabetes” I know the work and effort I’m putting in, so I don’t care what others think. I know who I am and that’s all that matters.
Second, what would you rather it say? A Diagnosis code that says “Trying very hard, but still needs some work” or “they really do put in a lot of effort, but they just need a bit more tweaking to keep their BG’s in range for a longer period of time.” I’m just curious as to what the better phrase would be.
Third, and let’s be real here. It’s not controlled. I have no problem being a realist and not trying to fluff myself up. My diabetes isn’t under control. I do what I can to manage it and I can be doing a lot better. More exercise, better eating habits, more weight loss, etc. But when you take a look at some of my CGM graphs and you see roller coaster after roller coaster, guess what, that’s not controlled. So, unless your blood sugars are staying perfectly between the top and bottom line limits that you and your HC team put together, to me, that means it’s not in control.
Here’s an example using a different subject.
If you are driving a car and you are in control of the car, then that means you are staying in your lane and not crossing over the lines into someone else’s lane. If you are driving the car and keep crossing over the lines and are almost hitting other cars because you’re in and out of your own lane, you are an out of control driver…. or an uncontrolled driver. Does that mean you’re a horrible driver? No. Maybe you’re just learning or you’re distracted or maybe it was dark and you didn’t really see the lines that well. All things that you could improve on. But, until you do, you’re still an uncontrolled driver.
I don’t want to undermine anybody’s thoughts and feelings on this topic. If you are outraged by the phrase, then that’s fine, this is just simply my view of it. I am just not a person to be effected by words or phrases that are just used to describe something. I know who I am. I have so much self-awareness of what I am and what I’m not, that it doesn’t matter to me that an outsider sees a diagnosis code and makes a judgement on me.
I wanted to take some time today to write about a conversation that I had with one of my HCP’s about the Medtronic / UHC deal. I have spoken about this deal multiple times with a lot of people and I’m not spending time now re-hashing the same crap over and over because, it’s spilled milk, the deal is in place and that’s that. Christel from The Perfect D had a great post on Facebook last night about moving forward, it is about what we do now.
I simply asked my HCP what she felt about the deal and this was her answer (summarized):
I don’t like that I have to tell someone who has United Healthcare that Medtronic is their only option, but I am really excited that I can tell someone who has United Healthcare that they can now get on an insulin pump and CGM and not have to worry about being denied coverage.
That is the part of this that I think a lot of people are not seeing.
Don’t even come at me with the #diabetesaccessmatters stuff because I agree with that cause and I agree 100% we need to have access to the products that we want that helps us manage our diabetes the best for ourselves.
But, let’s also take a step back from this and think about the people that just want an insulin pump, they don’t care what brand it is, they just want a pump that delivers insulin 24 hours a day.
Let’s be honest with ourselves here, all pumps are the same. They do the same exact thing. They deliver insulin.
One may have a cooler design or have a few extra bells and whistles, but at the end of the day, they all deliver insulin. So for someone who is looking for better control by getting off of MDI and switching to an insulin pump / CGM combo but they previously couldn’t because their insurance was denying them…. this deal is amazing to them.
I think the long term issue at stake here is an access problem, so I am glad that the access route is the way that the community came together and decided to follow.
But, I think we have to take a step back and think about what access actually means. Does access mean, just simply having access to an insulin pump (no matter what brand it is) or does access to you mean access to everything and you get to pick and choose what you want. Because, that is going to be a long battle that isn’t going to be solved today or tomorrow. No petition or boycott is going to solve that problem in the next 3-6 months.
I know the hunger problem in the world may not be the best comparison, but it’s what popped into my head right now. But think about access to food. Sure, you can go into a restaurant and demand access to not just a T-Bone steak, but you want them to serve the Porterhouse too. While, right outside the window is someone just looking for any kind of steak, it doesn’t matter what it is.
And those are the people that have won in this deal between Medtronic and UHC and if we all truly cared about access, we would be acknowledging that as a win in the access category.
Now, was this the best way to do this? Give access to some people by taking access away from others?
No, absolutely not.
But that is why we as a community have come together and will continue to come together to figure out what those best solutions are. We have to come up with solutions, because if we don’t, we don’t provide any other options for companies and insurance companies.
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.
If you are reading this, then you probably have diabetes yourself, so I recommend that you share this post with your family members and friends.
If you have a loved one that is living with diabetes, or a co-worker, or you just want to spoil yourself, then what better time to show them how much you love them than with a diabetes related gift for the holidays.
I’ve put together a list of items below that I think would make the best holiday gifts for people with diabetes. Also, please add additional gift ideas in the comment section below. Just as an FYI, most of the products I’m listing were created by people with diabetes or a parent of someone with diabetes.
If your glucose meter bag is anything like mine, then it is filled with blood. There are people who lick their finger after testing, some wipe with a wet wipe or napkin, some just wipe their finger on the inside of their meter bag (me!) or some carry around some bulky product to wipe it with. Diabetic Dabs make it easy to just stick to the inside of your meter bag and simply “dab” your finger into the gauze cloth without making a huge mess. – http://diabeticdabs.com/
Books About Diabetes
I’m not going to list all of the books here, I am just going to link to my recent post about my favorite diabetes books. These are all great gift ideas and the best part is that if you know multiple people, you can just buy several!
There are several products out there that were created by those living with diabetes to make it easier to hold your insulin pump while playing sports, or even just everyday wear. Corrine started this company and created this product. She created the product to help her store her pump more easily by adding a pocket to the back of spandex. – http://www.pumpstash.com/
Lauren’s Hope Medical ID Jewelry
If you are anything like me, then you hate the thought of having to wear some sort of medical ID bracelet or necklace. In fact, I don’t even wear one because they annoy me, especially the really plain ugly ones. So, this could be a great gift idea for someone who doesn’t currently wear a medical ID bracelet because they aren’t fashionable or cool. Remember my niece who was recently diagnosed? Well, my sister in law bought her an ID bracelet from here and she absolutely loves it and doesn’t mind wearing it. – https://www.laurenshope.com/
Use the coupon code FAN for 10% off an order
If you know someone who rocks an insulin pump, then why not help them add a little flare to it with an insulin pump skin. You can choose from their favorite NFL team to a color, to a simple design (I’m into all things camo). Pump Peelz offers skins for Dexcom, Animas Ping / Vibe, tSlim, OmniPod, Medtronic, Pebble Watch, VerioIQ and more – http://pumppeelz.com/
If you’re not sure if any of these gifts will work for the person with diabetes that you know, then simply make a cash donation in their honor to their charity of choice. I have done this in the past with birthday gift ideas and it worked out quite well.
Sponsor a Trip
This gift could be pricey, but if you have the budget and means, then why not? Pay for their trip to a diabetes conference in 2016. Christel has the ultimate list of diabetes conferences in 2016. (as well as the diabetes UNconference). I would say that the vast majority of us living with diabetes would love to attend some of the meetups and conferences but just simply can’t afford them, so of course this would make the perfect gift!
There are a TON of diabetes related items on Etsy. If you just do a search for Diabetes (which I have done here for you), you will find a lot of items. A lot of items on Etsy can actually be personalized for a few extra dollars.
Every person with diabetes I ever met has loved cupcakes, so you can’t go wrong there!
If you have any additional gift ideas for someone with diabetes, or someone who loves / cares for someone with diabetes, then please add in the comments below or share on Facebook.
Yesterday that good ole’ packet about open enrollment came in the mail. For the past 3 years, my wife and I have not changed our plans and I don’t plan on doing so again this year, even with the new addition to the family. The only part about open enrollment season that worries me is, how are my expenses going to change in the next year.
In 2013, I used Apidra because it was $50 for a 90 day supply.
In 2014, I then switched to Novolog because Apidra went up to $150 for 90 day supply and Novolog dropped to $30 for a 90 day supply.
In 2015, I switched to Humalog because Apidra stayed at $150 for 90 days, Novolog went up to $150 for 90 days and Humalog dropped to a whopping $12.50 for 90 days worth of insulin.
So, 3 years, 3 different insulins all because the costs changed dramatically. I never know going into the next year what insulin I am going to be using.
The same goes for my test strips.
I have gone back and forth between One Touch and Contour strips for 3 years because of the large difference in costs. It would be nice to be able to choose which strips and insulin I want to use based on my personal preference and not on what my wallet can afford.
So, just for my own curiosity, I wanted to see how many others have had to change their insulin and/or test strips every year based on the difference of costs from year to year.
I am a huge fan of Target. My wife made me a huge fan of Target. I’m so much of a fan, that I changed my RX there. Well, that was to give my wife and I an excuse to go to Target twice a month to pick up our prescriptions. But now, they did me wrong. I’ve had plenty of bad encounters with CVS / Caremark pharmacies in the past.
This really upsets me that Target sold the business to them. Target also provided 5% discount on an entire days worth of shopping for filling 5 prescriptions, so between my wife and I we fill 5 a month. So that meant that once a month we would do our large grocery shopping at Target and take an additional 5% off. Sure, that’s only $5, but every penny counts.
Looks like I will be switching to Walgreens or Publix pharmacy now.
Anybody know if Walgreens has a rewards program for switching prescriptions to them?
Here is a link to the New York Times article about the purchase of Target’s Pharmacy by CVS – http://www.nytimes.com/2015/06/16/business/dealbook/cvs-agrees-to-buy-targets-pharmacy-business-for-1-9-billion.html
The other night during DSMA, there was a question posed that had to do with social good and the big players in the diabetes industry understanding the positives of social good. I mentioned to Bennet that the shift has began for companies to see the ROI of social good. But what is the ROI?
This is something that I have written about before in a couple of my other blogs that I write, but I thought it was a good fit to write about here.
The ROI of social media in general has always been difficult to calculate, especially when it’s not defined at the very beginning what the goal is. Typically, the C-Suiters need to see numbers like this. I spent $10, we made $20 from that $10, that means we made a profit. How can you tell exactly how much money you made by somebody building trust and a relationship with your company? Trust me, I own a business, it’s difficult to see that connection. However, a lot of businesses are able to see that connection, at least are starting to. Read More
I just got home from my endo appointment about 20 minutes ago, and I wanted to write this blog post while everything was still fresh in my mind. First, let me mention what some of my thoughts were going into this appointment. I knew my A1C was going to be high, actually, probably the highest it’s been since being diagnosed. Why did I think this? Because my meter results over the last three months say so. I also knew that I did not wear my Dexcom at all during the last 60 days, so I knew that was going to be a point of discussion. Finally, I did not reach my goal for my weight loss. Now, onto what happened. Read More
Two Sunday’s ago, JDRF was the featured company that two agencies were to create pitches for on the AMC show, “The Pitch”. The winning ad agency was Bozell. I was able to have the opportunity to ask Jerry Stoner, their executive creative director, a few questions about the show and the ads they pitched. For more information about the show, you can check out The Pitch at AMC.
For now, let’s get on with the questions. Read More