For the last three months, I have been in a bit of a funk when it comes to advocacy, being active within the DOC and basically everything to do with diabetes. There are multiple reasons for this and they are primarily all family focused.
Several months ago my wife and I decided that we were going to sell our home so we can travel between Pennsylvania and Florida a lot easier. This meant that we had to completely clean the house, pack and organize everything into our garage. We then had to get all the yard work done, plant flowers, lay mulch, pressure wash and all the other fun things that go into prepping a home for sale.
Once the house was sold, we had to move. After we moved, we decided that we were going to come up to PA for 2 months (which is currently where I am). While up in PA, I have basically just done as much stuff with family and friends as possible and that has left me with little time for work and all that goes with my diabetes activities.
Not only have I had zero time to do much else than hang out with friends and family, I’ve been having a bit of a battle with my own diabetes. Because of an insurance snafu a few months, I’ve had to switch to Novolin R insulin because I have no insulin coverage and have to pay 95% of the retail costs.
My diabetes has been very difficult to manage with using this insulin. The two hardest parts are having to take it at least 30 minutes before I eat and trying to correct a high.
I am not much of a planner when it comes to eating. Especially when on vacation. My wife and I just go along with the day and then eventually decide we’re going to eat and that could be within the next 5 minutes. Because of that, my blood sugar sky rockets. Then, when I use Novolin R to correct, it takes hours to come down.
With all of this added together, I have been in a rut. But, the only way to get out of the rut is to keep going and push through it. So that is what I am going to do.
I think that I may spend more time on the phone with my insurance company throughout the year than I do speaking with my healthcare team.
Go back and re-read that.
This is coming from someone who gets a good 30-45 minute discussion with my educator at every single visit (I see an ARNP not endo).
That would be very high on my list of things to change. That the insurance companies actually read the notes from the previous callers because every single time I have to explain the situation and that’s when my frustration levels begin to rise.
Another issue I would like to see fixed is that when I actually pay for health insurance, that they provide some sort of prescription co-pay. Currently, I had to change to a temporary plan due to a marketplace hiccup, if you will. With this new plan, there is no prescription coverage, basically I pay whatever the pharmacy discount is. So for my 6 vials of Novolog (or Humalog or Apidra, doesn’t matter) it will cost me just under $1,000 and that includes the co-pay assistance from Novolog. Just last month on my previous plan, it was a $25 co-pay.
I’m sure this is one is going to be listed on everybody’s post today – Choice.
I think that one explains itself.
I cannot complain against my medical visits because I get a good 30-45 minutes and it’s an actual discussion back and forth with my educator. We figure out what went wrong, what worked, and make a plan for the next 90 days before we regroup again.
I know that is not always the case, so I would like to see that my doctor be able to get paid for the time that they put in. A lot of education is missed out because they don’t get reimbursed for it, and that doesn’t help anybody.
I would also like to not have to hear stories anymore from people that say, “what?? You’re doctor emails back and forth with you??!!??”
Yes, I will email her and say, hey I just uploaded 7 days of sensor data, can you take a look and she will respond with what she thinks.
Now, do I think that she should be able to bill for that? I don’t know. Here’s why..
I own a business and sometimes I have to do work in order to either gain a client or keep a client that is work, but not billable work, it’s relationship building work. And that is how I see these emails.
But, I would like to see the healthcare system have a way for doctors to get paid and reimbursed for Skype calls and it not have multiple hoops to jump through.
My primary issue is just a simple customer service one when it comes to insurance. Just simply have great customer service and a great customer relationship management system and don’t be another roadblock in my life for better health.
There are certain words that I think can certainly hurt and those are related to race, direct insults like fat, ugly, etc.
When it comes to diabetes, I may be in the minority here, but in a lot of circumstances my thoughts are this….. It’s just a word, get over it.
Take a second to look at the name of my site, do you think I care about the word diabetic? You can call me a person with diabetes, diabetic, or whatever else you choose. Diabetes is not all that I am, but it is a way to describe part of me. Just like if I went into a sports bar on a Sunday afternoon, I would be identified as an Eagles fan, not Chris, but as an Eagles fan.
If you prefer to be called one or the other, that’s great, I also don’t have anything against that… why? Because I respect everyone’s decision to like or dislike certain words.
Checking vs testing blood sugar is another one that doesn’t bother me. I understand that testing makes it sound like a pass or fail, but honestly, that is way overthinking it. It’s just a phrase. Once again, my own personal opinion and I respect the opinion of others who may not like the word.
I’m not one to deep dive analyze every single word. I don’t think into this stuff like that. There is way too much other crap in my life to worry about and stress over, that the simple choice of a few words is not one of them.
Another one that I see a lot of chatter about is patient vs consumer vs customer. Another one that I don’t care too much about but I see it this way. I am a patient of my doctor and healthcare team. I am a customer to an insurance company. And I am also a consumer and customer to supply companies. I am NOT patient of Novo Nordisk, Medtronic, Bayer, Roche, Lilly, etc.
However, if you want to call me a patient of these supply companies, it’s not really going to bother me. Like I said, I have family health problems, business problems, a 14 month old, and plenty of other battles to fight, like access.
When I have to go from paying $25 for a one month supply of insulin to $985 for that same one month supply because my insurance changed…..I don’t give a F&^# what the insurance company calls me. Much bigger issue to deal with.
Once again, I want to re-iterate. I have no problem with people who do not like these words. I am not saying that my way of thinking is the right way, it’s just the way that I think and handle things, that’s all. Fighting to eliminate usage of some of these words is just not something that I am passionate about, therefore, I don’t spend my time worrying about it.
I am all for finding your passion in advocacy and advocating the hell out of it.
So, if this is one of your advocacy passions, then fight on and I will support you as an advocate.
I am so happy that this topic is part of Diabetes Blog Week. I don’t think that this is a topic that is discussed enough. Whether it’s because people who are going through mentally don’t want to talk about it on their sites or the fact that there is just not enough coverage, studies, etc. that go into mental health awareness.
I tend to have pretty tough skin (no lancet pun intended), so I have been able to learn how to let things go and not fret the small the stuff. This has been something that I have learned over the years of dealing with stressful situations in business, diabetes, and life in general.
Diabetes has more of an emotional and mental impact on my wife than it does on me. She worries constantly about my blood sugars, worrying about them going low in the middle of the night and not waking up, or traveling somewhere and not having Skittles or other forms of sugar on me (she carries that stuff when we are together).
When I have a high blood sugar or just having one of those diabetes days, I just try and count to 10, think about the positives in the situation and realize that what is getting me down is probably not as big of a deal in the long-term picture than it feels at that time. I then think about that and it relieves me of my stress or negative mental feelings that I may have at that time.
Being an entrepreneur and knowing that every single day, I am in charge of where the finances for my family are going to come from, weighs heavily on me and my mental capacity. But, like I said above, I have learned to deal with each situation and not spend too much time thinking about one single issue. There are much larger issues that others are dealing with, so I think to myself, “it could be worse”
It is not easy, I have not always been able to talk my way through these stress and negative thoughts, but it has taken time, a lot of time.
There are definitely times when I say, ‘damn, I hate this disease because it sucks so damn much.”
But then I stop and say, “well, it’s not going anywhere, so just deal with it”
It may not work for everyone, but it works for me. If it’s not something that I can directly be in control of, then I can’t waste time stressing about it because it is out of my control.
I have been writing on this site for nearly 8 years now and during that time I have had a lot of different awareness passions. It seems that the more I learn about certain issues, it either makes me more passionate or less passionate about that specific issue.
The whole concept of my site has always been to show people that a life with diabetes is just as normal as everyone else, except we have some extra stuff we have to take care of on a daily basis.
From day one, I have had a passion about the lack of education that exists for this disease. For as many people that live with diabetes, whether it’s type 1 or type 2, or LADA or one of the many forms of diabetes, there is such a lack of education. HCP’s don’t even know enough about diabetes (not all obviously). But, when I go to a clinic for a cold and mention I have type 1 diabetes and they are asking me questions about basic diabetes knowledge, that’s pretty scary.
In the years that this site has been around, I have had multiple guest posts from diabetes educators about the importance of education. And when I say education, I mean for HCP’s, general public, people who has diabetes, etc.
Then over time, I realized that a lot of the issues that we have within the diabetes world are actually policy related. That means that if we want to provide more education to people, the people providing the education need to be paid for their time, which means we need legislators to make decisions to ensure that people get paid back for their time and services.
This realization led me to become passionate about diabetes policy advocacy which is where I have focused majority of my time over the last 12-18 months.
The very first thing that I did was reach out to Bennet Dunlap and ask him what I can do to learn more about the policy side of things, because it is definitely complicated.
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.
I was sent a Dario All in One meter to review last month, so I figured it was time to get my review up.
When I first heard about the Dario meter, my initial thoughts were:
Cool, I can use my iPhone to test my sugar.
Awesome, the strips and lancing device are all in one, so less items I have to carry.
That was all I knew about the product before I received it.
When I first received the item in the mail, I liked the white box that the meter and strips came in. It felt very Apple-ish, and one thing to know about me, I love my Apple products. The box was actually extremely difficult to open. I basically had to rip the entire thing open because I couldn’t just easily take the meter and other items out of the box.
Inside the box was was the meter, lancets, the device that goes into the audible jack and a sample vial of 25 test strips.
The instruction manual made it very simple to set the meter up. On one end of the device the test strips slip into an open compartment that has a white cover. On the other end, the lancing device is attached. On the other side is a button to push up and then the actual meter pops out and plugs into the audible jack on your iPhone.
Setting up the meter itself was pretty quick and easy and simple to do.
The next step was to install the Dario app from the Apple Store. Once the app was installed, I just opened up the app and followed the instructions.
The kit also came with these bags to put your iPhone in so that there is no contamination of blood. This is a great idea, even though I only used the bags for the initial first test.
The entire set up was pretty easy to get ready to test.
My first test however, was not the best, as you can see.
The kit also came with an additional 25 test strips, so I used the meter 50 times. I feel after 50 tests, that is enough to determine whether or not you like something.
I loved having the app automatically logging my BG’s for me and giving me a quick snapshot of my average results. As soon as I opened the app, it provided me with what my average blood sugar was. As you can see, I had a rough couple of weeks with blood sugars. Also, this is why meter BG logging doesn’t always tell the whole story because if my CGM said 120, I don’t test, so it skews higher.
Overall, I did like the meter. I liked the ease of use and having the test strips and lancing device all in one. It was less that I had to carry. In fact, I didn’t even carry my whole meter bag that I usually do because I could just keep this in my pocket and that’s it. I like being able to test directly on my iPhone.
The biggest downside to me was that I had to have my phone on me in order to test. I like to test in the middle of the night when I wake up to use the bathroom, but pretty much every time I forgot my phone on my night stand and had to go back out from the bathroom to get my phone in order to test.
I also did not like that I had to wait to open up the app in order to test. It would be nice for the app to open automatically once the jack was plugged in. But hey, those are things that would make the perfect device. Testing on the iPhone was great, so I am not going to complain about having to open up the app first.
I would not use the Dario meter as my full time meter, however I would like to keep some test strips as a back up meter. I like it for traveling purposes because it’s easy to just put in my pocket.
I would recommend this meter to people though because overall, I like it.
What would make this meter the perfect fit?
Truly be all in one. Meaning that the test strips, lancing device and the meter itself is all in the same device, no needing to connect to the iPhone. Then, once the test is complete, it can send the results directly to my iPhone via Bluetooth without me needing to open up the app.
Have you used the meter? If so, I would love to hear your feedback.
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.