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.
Doing it for the Kids
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!