Skip to main content

My MedtronicDAF Recap: Better Access or Better Technology

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.

File_000 (3)Open Data

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.

Access

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.

PrintYou 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?

Medtronic Diabetes Executive Team

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.

Suspend Medicare’s Bidding Program

Yesterday, the Diabetes Patient Advocacy Coalition (DPAC), launched the Suspend Bidding Action Center. Even if you are not using Medicare now, you may be one day, and people are using it today. People should not have to have their health suffer because they are on Medicare. That is exactly what the Competitive Bidding program is doing.

Please check out the Suspend Bidding Action Center as well as the infographic below for more information and to take action:

DPAC Suspend Bidding
DPAC Suspend Bidding

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.

Leaving the Hospital with More than What You Came In With

When you first read this title you may be thinking that I’m talking about leaving with more debt or more bills, but that’s not what I’m talking about. I am talking about potentially going into the hospital for a diabetes related issue and leaving with something else, such as Hepatitis B.

When I recently went to the ER a couple of months ago because I thought my appendix was bursting (which it was not, it was a muscle strain), the ER nurse had asked me if I wanted her to check my BG with the hospital meter. My quick response was, absolutely not. I am known as a pretty big germaphobe. I don’t avoid every single germ possible or walk around with a gallon of sanitizer, but I do try to avoid any areas or situations that may just look full of germs (Yes, I know, the entire planet is filled with germs).

I bring up this story because if I allowed the ER nurse to test my blood sugar with the hospital machine, I could have been putting myself at risk. This just doesn’t sound like something that should happen. That a hospital setting could pass a disease onto me. Well, it shouldn’t, but unfortunately it is a possibility.

There is a webinar coming up on Tuesday, January 26th at 12 PM that I highly recommend you attend. Not just you, but anyone you know, because it is not just related to people with diabetes, but anybody going to a hospital.

The Diabetes Patient Advocacy Coalition is hosting a webinar with Dr. Pamela Allweiss, MD, MPH, Medical Officer for the Division of Diabetes Translation at the Centers for Disease Control and Prevention. She will be discussing the risks of virus transmissions in healthcare settings in the United States.

Register for this webinar today and share with at least one person that would be interested in learning about this serious problem and some ways that we can make it stop.

For a little more information of how Hepatitis B can be spread in a healthcare setting, check out Christel’s post at The Perfect D.

What I Learned from World Diabetes Day

World Diabetes Day was a very long and tiresome day for me this year. I normally don’t really do anything to celebrate the day, I used to use it as a vacation day from everything I do with diabetes. Last year I participated actively for about 6-7 hours of the World Diabetes Day Chat, but this year, my goal was to break the record, in fact I wanted to actively participate in the entire event.

And I did.

Throughout the 13,14, 15 hours ( I don’t even know how long it was), I attempted to answer every question asked by every moderator. There were a couple of reasons why I did this. First, because I wanted to motivate someone to do something. I was hoping just one person would say to themselves, “if he’s been tweeting all day, I can find 5 minutes to send an email to my local reps.” Secondly, I wanted to show people that we all have time. I know we all live busy lives, but if you audit your day, you can find some time to do more advocacy related things that you feel like you don’t have the time to do. And lastly, I wanted to get a better understanding and feeling for how the DOC felt towards all of the topics that were being discussed.

So, what did I learn during this all day chat? A lot.

I learned that the DOC comes together like a boss. I learned that even when there were disagreements about certain things, there was still a common goal in the end, just maybe the paths were a little different. I learned that there are a lot of people that want to help and do more, but just don’t know they can do. I also learned that when we come together as a community like we did on Saturday, our voices are heard a hell of a lot louder than when we are just individuals shouting.

I learned how I can advocate better and how I can do things differently to better manage my own diabetes. I also learned that it’s very easy for your words to be taken out of context in just one tweet (well, I guess I already knew that).

What did you learn from the World Diabetes Day Chat? Comment below.

How Gary Vaynerchuk (who?) Can Help Your Diabetes Advocacy Mindset

As some of you may have noticed, I’ve been using my Twitter account to share more than just some diabetes stuff. The reason is because I had a Twitter account that I used for business related stuff (@chris_stocker), but I didn’t really share that much on there because I spent all of my time on my diabetes Twitter handle. I decided that I am going to begin to merge the two together because we always say that diabetes doesn’t define who I am as a person, so why do I have my business stuff and diabetes stuff separated?

If you did notice this change in my posting, then you may know that I am a big follower and fan of Gary Vaynerchuk. This guy totally changed my life back around 2009 when I first started blogging. Some may think of him as a motivational speaker, which he can motivate the hell out of you, but that’s not all that he is.

A lot of his talking points are based around business, but more importantly, can be put towards anything that you have a passion for. For example, diabetes advocacy.

I am very passionate about diabetes. I think that we all are. In fact, if you are taking the time to read this post right now, you probably have a bit of a passion for it.

What I wanted to do here is share a few videos of Gary’s and how they can relate to diabetes advocacy and how they can help you.

Monday Morning Motivational Video

I watch this video every single morning. It’s the first thing I do every morning, because I take this mentality for every day of the week, not just Monday’s

 

One is Greater than Zero

The concept of this video is very simple, one is greater than zero. You can take this anyway that you want, but in the diabetes advocacy world, this is how I take it. Emailing or tweeting to just one elected official is better than zero. Creating a relationship with just one of them is a lot better than just doing nothing at all.

 

This last video is 15 minutes long, but it pretty much sums it all up. One thing that a lot of people use as an excuse for not being active or involved is because of time. To quote Gary, “we all have time, stop watching fucking Lost.” Now, you can change Lost to any other Netflix show that you are marathoning this weekend. But using the excuse, “I don’t have time to take action on these ideas that other people are doing. I have kids, I have a family, a job…” blah blah blah. When listening to him speak about monetizing, you can consider monetizing, responses from your advocacy.

 

I hope that just watching one of these videos helps you get over that hump that you may be at and take action.

Do You When it Comes to Advocacy

It is Diabetes Awareness month this month, so you will be seeing an overflow of diabetes information. You will also see bickering amongst people with diabetes because not  everyone believes in the same advocacy efforts. And you know what? That is fine.

When it comes to awareness and advocacy, do you.

If you have a certain passion about something and that’s what you want to advocate about, great, do it. Don’t just jump on the advocacy bandwagon because you are afraid people will look at you weird because you’re not jumping on board with them.

If you choose not to do anything in the month of November, that is perfectly awesome too. However, don’t try and bash people that are.

We need to support each other’s efforts in advocacy. You may not necessarily agree with someone, but who is to say who is right in regards to that particular topic. If you choose not to help them with their advocacy efforts, that is perfectly fine, just please stop bashing each other’s efforts.

Support.

You Chatted, Now It’s Time To Act – 5 Things to Do Today to Take Action

I have been participating in DSMA chats on and off for the 5 years that it has been around. I do not participate as much as I would like to, but I definitely try to jump in when I can. Last night’s was one of the best that I can remember being a part of. It was being promoted well through PR campaigns as well because there were some special sponsors of the chat last night.

The theme of the chat was #ChatActChange

I broke that down as, we chat during DSMA, we act the next day (and every day after that) and then we will see change. But, we will only see change if we communicate and act on those communications. Change will not just happen by itself.

One of the questions last night was geared towards how someone can get started if they don’t know where to begin or what can they do to get started advocating for change. Well, I want to see as much action as possible, so I figured I would outline 5 quick easy ways that you can act today!

Contact Your Local JDRF and American Diabetes Association

Head on over to your local JDRF or American Diabetes Association’s website and just send them a quick email. Explain to them that you are interested in working with them on a specific cause. Maybe you can simply volunteer at a local walk and be able to communicate and meet people in your community and from there you can build a peer to peer support system. Your local chapters may be involved in something locally that sparks your interest, but reach out and introduce yourself and let them know that you are a helping hand.

Contact Your Local Politicians / DiabetesPAC.org

These two are very similar so I decided to combine them together (but it’s still 5 total right?) If you are anything like me than contacting your local politicians can seem intimidating and trying to even figure out who these people are and how I contact them can be nearly impossible. Except for the fact that DiabetesPAC.org exists.

While there you can view some of the top issues such as safety, quality and access. You can also make just a few clicks to actual actions.

What I think is the coolest thing on the entire site is the Diabetes Scorecard. This basically outlines for you where your elected officials stand on important Diabetes related issues. From there, you can send them a message to say thank you for supporting a specific cause or send them a note as to why they should be supporting something.

First, find out who your officials are. Go to http://diabetespac.org/whydpac and in the lower right hand corner simply input your zip code. All of your elected officials will pop right up for you. It is my recommendation to keep that site open so you can easily reference it. Open up a new tab or new browser window and head on over to http://diabetespac.org/dpac/scorecard

From there you can search for your elected official and find out if they have supported any of the Bills listed. Now that you know who you want to contact and about what, you can use this page to search for their social media accounts – http://govsm.com/w/House

Connect with Locals on Twitter

Connecting with people on Twitter can be easy because you can just easily jump into conversations and also build relationships. I’ve connected with a lot of people on Twitter who I never met, but consider them some of my closest friends.

Here is how you can find people locally (there are several other tools to use, but let’s keep it simple with Twitter):

  1. Go to the Advanced Twitter Search tool
  2. In the All of These Words area type “diabetes” (or any other word you want to use)
  3. Under Places, if your area is not currently selected, then make the appropriate changes
  4. You can scroll through these tweets and look for people that may be tweeting about items that grab your attention

Just Simply Ask “How Can I Help?”

This is a very simple way to get started. If you have a Twitter account (and if you don’t sign up for one right now) simply log into your account. Think about what you are passionate about when it comes to diabetes. This can be anything, CGM and Medicare, Insurance issues, Work place issues, diabetes and schools, etc. Now type the following in Twitter “I am passionate about XYZ and diabetes. How can I help? #dsma”

That hashtag is followed by thousands of people, someone will either have an answer for you on how you can help or they will connect you with someone who can.

If you don’t want to go to Twitter, here’s a really simple, quick way. In the comment section below, tell me your passion and I will help connect you myself with someone within the diabetes community.

That’s it. Just by doing at least one of these items today, you are already taking action. If you want to spread these out over the next week and just do one a day, that is perfectly fine with me.

I just ask that you do something. I am going to hold myself more accountable and take more actions where I can.

Happy Take Action  Day!

It’s Been Far Too Long

Wow, it has been far too long since I last posted here. June 15 was the last post and before that May 22. First, I just want to say that I haven’t given up on the blog or advocating for those living with diabetes. I am still here and if you follow me on Twitter, I’m still pretty active over there, just haven’t been posting much on the blog.

So, what is the reason? (more…)

My 3 Month Diabetes Burnout Hiatus

The last couple of months have gone by quick. It feels like the last 90 days has been about 2-3 weeks. Summers for me are always a very time consuming few months.  My work actually picks up during that time period, my wife is off for the entire summer and I do a lot of traveling… just like most people do.  This summer, however, has had a lot more traveling than normal, so I knew that I wouldn’t be able to keep up with blogging and tweeting and advocating and everything else that I normally do on a daily basis.

And ya know what?  It felt so damn good to take this break.  There have been plenty of times where I just felt overwhelmed with trying to keep up with all of the diabetes related initiatives that are always going on.  I came to a point where I felt that I was doing something just to do it and I didn’t really have that much emotion or passion for whatever I was promoting or helping out with.  I have a stack of about 5-6 diabetes related books that I just couldn’t read anymore because it was just too much diabetes.

After 10 years, these last few months have been my first real exposure to diabetes burnout.  I just couldn’t take anymore diabetes other than the daily activities that I had to do to maintain a decent blood sugar.  Do I want to go to the park with my nieces or read another post about the Scientific Sessions? Should I go out to the bar with my friends or write another post about my insulin pump? Should I hang out with my family and watch a movie together or chat online with others about diabetes?

To me, these answers were pretty damn easy to make over the last few months.

But, over the last few days, I have been missing it.  I have began getting that itch again that I need to do something, I need to write something, I need to fight for something.

So, here I am.  My batteries have been re-charged and I am ready to go.  I know better than to just jump head first and go full speed ahead right away, but I am slowly getting more involved again and I hope y’all haven’t forgotten me too much!

I look forward to connecting and talking with you all again on a more frequent basis.