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:
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.
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.
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.
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.
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.
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!
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.
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
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):
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!
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? Read More
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.
I am so happy that this topic is part of this year’s DBlog Week. Even though most of us are advocates, we may not all care as much about certain causes as others do. And as long as we don’t judge each other on not caring as much about certain topics, than that is a good thing. We should put the effort into what we care most about. If you are not passionate about something, it’s pretty much a waste of time.
For me, there are three main areas of concern that I have: Education, Policy and Doing it for the Kids.
When I was diagnosed, I went to the hospital with an 858 blood sugar. I have told this story a lot, but I had all of the symptoms for a couple of months and knew nothing about them or the disease. If I would have just had some basic knowledge of the disease, I could have probably gone to the hospital a lot sooner than I did. This education could be done in a health class in high school or middle school. Of course, I probably wouldn’t have paid much attention to it, but I would have remembered something about constantly peeing every 10 minutes.
After that initial education of general information about the disease, it is alarming how many people with diabetes, don’t really know anything about diabetes. This could be for many reasons, and if it’s from ignorance of the person with diabetes, then there isn’t much we can do about that. However, for those that want to be educated, but can’t because their insurance won’t cover anything more than a 15 minute visit every 90 days, there is something that we can do about that. What is it that we can do? I don’t know, if I had the solution, than I wouldn’t need to be advocating for it.
How do we solve this issue? Maybe something to do with the next area of advocacy.
There are a couple areas of concern that I have when it comes to policy change: Test strip / Meter Accuracy, Coverage of CGM and Insulin Pumps, and Education.
With the effort from the community recently on the amount of comments on an FDA docket, you can see how a little effort can go a long way. Strip Safely is by far the best place to learn more about advocating for meter accuracy. If you would like to know what you can do to help, please visit the site or reach out directly to any of the founders ( Bennet, Christel, Kerri just to name a few).
There is enough data out there to show that those wearing CGM’s have a better chance to manage their diabetes better than those who do not wear CGM’s. Please, do not try to argue with me that you are doing great management without a CGM, because that is not what I am saying here, so save that for something else. For those that wish to wear a CGM but their insurance doesn’t cover it because it is not a tool used to dose insulin means that a person is not allowed to have one…. that’s just ridiculous.
Also, I live in a state, Florida, where state Medicaid dollars will not cover an insulin pump, without at least 157 hoops to jump through. This is just not right. This is an area that frustrates me because I know how much better my management is with a pump than without it. Once again, Your Diabetes May Vary, so save the argument. But, to not be given the choice of how you want to manage your diabetes is not a way that those with diabetes should have to live. So, how do we go about changing this? We have seen advocacy work in the online space recently with getting insulin pump coverage in the state of Arizona.
As a kid, I did not grow up with diabetes since I wasn’t diagnosed until the age of 19. However, I grew up aspiring to be a professional football player, which knee reconstruction shot down, but it always felt great to have older football players come in and talk to us and tell us stories and give us the motivation to work hard to get where we wanted to be. This applies to a lot of kids, and I don’t think it’s any different for those with diabetes.
I’ve had the pleasure to attend several diabetes camps, meet-ups, and talk sessions where I was able to talk with kids from the ages of 8-16 and tell them stories and relate to them instead of their parents just always lecturing them. I’ve received emails from parents thanking me because they saw an instant change in the way their child was acting towards their diabetes management, and when that happens, it makes me feel that everything that I do is worth it.
In wrapping this up, don’t feel that you have to be involved in every single issue. If you’re heart is not in it, than leave it to those who are. You will not be judged and looked as a bad person because you are not posting and tweeting about every single advocacy issue that is out there. And if you are judged by that, then the person judging you is just an idiot
Happy Diabetes Blog Week!