I have been a huge fan of DPAC from the day I found out about them. They have done so much for diabetes advocacy that it’s unreal. They have truly made it so easy and simple to advocate. You can go to their website and just click on your reps names and send them tweets and emails. Seriously, how much easier can it get?
Well, they actually did just make it that much more easier. Like many others, I live on my phone or iPad. I’m connected to it at all times. I love apps. I particularly love apps that do good. And this one does.
Now, you can simply download the DPAC App and advocate right from your phone.
Once I downloaded the app, it was super easy to set up. You can link to your Facebook or Twitter account or email if you would like. This creates your profile for others to see. I love the idea of building a community around advocacy. It helps me knowing that others are participating in some of the same efforts that I am.
The profile set up part was super easy.
By inputting your address, the app is able to figure out exactly who your reps and Senators are and makes it super easy to then contact them.
The next part was to simply take action, already. For me, the easiest, quickest thing to do was going to be to Tweet my Representative. So, that’s what I clicked on. Once you click on Tweet your Representative, a second option pops up for which one you want to tweet to. Click on the button and it will automatically draft your tweet for you. You can add more to the tweet if more characters are available. If you don’t want to edit, then just simply send the tweet.
Finally, you will get confirmation of your tweet and you can go back and start taking more actions.
People are driven by success. Success can be measured in any way that you want to. I am super competitive, in anything. I compete against my diabetes to beat it. I compete against fellow advocates, because I don’t want to be out-advocated. It drives the advocacy efforts.
Doing more to collect points is a way to keep people engaged and keep people doing more. If you’re last on the leaderboard and you feel like you’ve done enough, chances are, you haven’t, so you will want to do more.
It’s a quote I have everywhere around my life. Simply, Do More.
So, there’s my review. The app is super easy to navigate. It really does make advocating so easy. You can do this while waiting in your doctor’s office, while you’re waiting for the water to boil for dinner, in the bathroom, waiting for your coffee to brew, anywhere!
Deciding to start this blog almost 10 years ago has totally changed my life. It has provided me so many opportunities that I wouldn’t have had if I didn’t start it. One example is the ability to meet and talk with people who live with other chronic conditions.
For so many years, I was only surrounded with others who were living with diabetes. Well, after I started blogging, not before, because that’s one of the primary reasons why I started to write in the first place. So, when I thought about chronic diseases, I really just thought about diabetes and how the diabetes world works.
It wasn’t until I started meeting people with other diseases that I was really able to open up my mind and start thinking about my own disease in a different manner. It allowed me to be open minded about new disease management techniques and questions to ask my doctors. It also made me realize that as someone with type 1 diabetes, I might actually be at risk for some of these other diseases that I see others writing and talking about.
I would start to learn more about certain diseases and conditions because if I was at risk for them, I want to know to warning signs of them. Sort of like I wish I knew the symptoms of diabetes that I was living with for 2 months before I was sent to the ER.
There is a lot to learn from other communities and I think there are a lot of people in the diabetes community that have reached out to other communities to try and figure those things out. For example, the AIDS community has been able to do so much by speaking up and sticking together. Healthcare in general is such a hot topic right now and people from all disease communities have come together to fight together and that’s just awesome to see.
It’s great to see events like the HealtheVoices conference that is happening this month. People from all different kinds of conditions, diseases, backgrounds, nationalities, etc. are meeting together. These type of platforms are where some of the best ideas and collaborations come from. That’s just my opinion for what it’s worth.
Today’s prompt is about my advocacy journey. Was it hard? Why did I decide to start?
The journey is the most excited part. End results are always great, but the journey and the story behind it, to me, is the most exciting part. My advocacy journey was something that was not planned. It sort of just fell into my lap and then I participated in one advocacy effort and that was it. I was hooked.
My journey pretty much started when I decided to start my blog. The first time that I received a comment on a post was when I knew that I could actually do something to make a difference. And that’s when the bulb went off.
I first sat down and thought about things that were important to me in the diabetes world. Back then, it was education. I was shocked that there were 20+ million Americans with diabetes and only thousands of diabetes educators. Who was educating all these people? Well, I find out, they weren’t being educated. So, back then I took part in providing an opportunity for diabetes educators to use my site to write their own guest posts because they didn’t have their own websites at the time. This allowed them to reach out to the public to let them know that this lack of education is a big issue.
It still is a really big issue!
After that, I realized that I could use the voice that I created with the site to share others’ advocacy efforts. That is when I hit a roadblock.
I started sharing too many efforts. So many that I couldn’t even keep track of them anymore. I couldn’t put any effort into anything because my time and effort was being spread so thin.
That was one area that was difficult. I didn’t want to not share ideas and advocacy efforts from other people. But, I knew that I had to. I couldn’t help spread everyone’s idea.
A few years later, I began to have more and more conversations with Bennet Dunlap, who those in the diabetes community know is one of the best advocators out there. Through Bennet, I was able to learn more about Christel Aprigliano and her advocacy efforts and the Diabetes Patient Advocacy Coalition. And wow, my advocacy thoughts completely changed. I remember thinking to myself, “Dude, you’re advocacy efforts are whack compared to these two, it’s time to step up your game!”
That is exactly what I did. I stepped up my game. I started to advocate more. I also started to help others figure out how to advocate more. I started to become less shy and speak up in person and meet with people that could influence the lives of people living with diabetes.
Over the last 3-6 months, my advocacy efforts have fallen off the map again. But, what else than a month long writing challenge to help spark that advocacy fire again.
Today is November 1, which means it is a lot of things. It is my birthday, it is the start of National Diabetes Awareness Month, it is the start of the November Health Activist Writer’s Month Challenge (#HAWMC) and a beginning to another great month of 2016.
I will be participating in #HAWMC this year, so welcome to anyone who is here for the first time and thank you for taking the time to read.
Today’s prompt for #HAWMC is two part: What drives you to write about your health and what do you want other Health Activists to know about your condition and activism?
What Drives Me To Write
I started this site almost 10 years ago and began writing because it was a good way for me to get things off of my chest about my diabetes. I felt very alone at the time because I didn’t know anyone else who had diabetes and I felt very “woe is me”. So, I started to write. I just started to write about anything and everything that came to my mind about the disease. For the first several months, I wasn’t sure if anyone was even reading what I was writing and I began to feel a little discouraged because now I was just lonely writing on the internet as well.
But then one day somebody commented on a post. It was a long comment, but one part of it stood out to me:
Wow, this is exactly what I was looking for. Thank you, your words have changed my mindset about this disease
That was it. That comment itself fueled me to keep writing, and keep writing more. If I could make a difference in just one person’s life with every post that I wrote, then I felt like I was accomplishing something and making a big difference by making small difference.
This is exactly what still drives me to write to this day. If I have a question about something, I know I’m not the only one. If I have an opinion about something, I know that I’m not the only one. So, I write. I write so that someone does not feel alone like I once did. I know that feeling and it sucked.
My other driving force that keeps me writing is to just provide as much information as I possibly can to let people know that yes, I have diabetes, but I’m living a pretty normal life. I’m a father, a husband, an entrepreneur, a brother, an uncle, a friend, etc. The more I can flood the interwebs with positive information about this disease, the more it can spread and the more people can learn about it.
What Do I Want Other Health Activists to Know About My Condition and Activism
The main thing that I want other health activists to know is that diabetes is not just about eating better, exercising, and living life to avoid getting amputations later in life. I want people to know that it is a very serious chronic disease that we have to live with 24 hours a day, 7 days a week, 365 days a year. We do not get any off days. The best way that I have heard diabetes described as is…a full time job, that is 24/7 and there’s no pay.
With all that being said, I don’t want any health activists to feel bad for anyone living with diabetes. This is not a “woe is me” outcry. This is just a way for me to help explain what living with diabetes is really like. Just like I have no idea what it’s like to live with any other chronic disease, I am excited to ready #HAWMC posts to learn more about other diseases.
That leads me to what I want people to know about my activism. First, let me say that I’m most excited to learn from other health communities to hear about all of your activism ideas and what has worked and see what I can utilize to help further my activism work.
When it comes to activism, what you do is different from everyone else, but all that matters is that you actually do something. Anything. I’ve learned over the years that I am never going to a professional, published author because of my writing style. A lot of people don’t like it, but I really don’t care.
I type out the words that are coming to my brain like I am speaking them out loud. I write how I speak. This was something that I was scared of at first because I felt like no one was going to take my activism seriously because of my writing style. I quickly found out that was not the case.
I have not done a lot of offline activism, but I have been successful with activism via social media. I have found that to be my greatest tool when trying to spread the word about something I am advocating for.
I am hoping to get to know a lot more people from different health communities. Please leave a comment on the site or on Facebook just saying hello so we can connect and learn from each other to make the health activism world a much better place.
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.
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.
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.