#DBlogWeek Day 4: Ch-Ch-Ch-Ch-Changes.

DBW2015
This is the sixth year of Diabetes Blog Week, started by Karen over at Bitter~Sweet Diabetes. All of us diabetes bloggers are given a subject to write about each day during this week, and after we publish each day’s installment, we’ll go back and link our posts on her site. Want to know more? CLICK HERE.
 
 
Can you believe we’re up to Day 4 already? Today is all about Changes.

Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?
 
 
I can’t think of the word “changes” without thinking of the David Bowie song. Now that I’ve got that soundtrack running in my head, let me tell you about the changes I would like to see in diabetes. There are a few:

– I would like to see all People With Diabetes empowered enough to take charge of their diabetes, advocating for the drugs, treatment, acceptance, and support they need and deserve. Not only for themselves, but for everyone diagnosed with this disease. I would also like to see some attitudes change, so every Person With Diabetes is accepting and supportive of every Person With Diabetes, regardless of type, age, gender, how they look, or who their friends are. There. I said it.

– I would also like to see some diabetes organizations follow that last bit of advice. I think that mostly, they do, but when they don’t, they’re not quite sure how to change, so they wind up behind the curve. Mostly.

– I would like to see insulin pump manufacturers change how they market their products to consumers (read: PWDs and parents of PWDs). I want them all to offer a free trial of their pump (right now, Asante’s Snap pump is the only one who does without treating it like a “purchase and return within 30 days” transaction). I would also like to see more standardization in pump paraphernalia—infusion sets, reservoirs, inserters. Let’s stop trying to make it about the extra money that can be made through these throwaway items, and start making it about better, safer functionality.

– And while I’m at it, I would like to see diabetes device makers lead the tech world in adopting interoperability standards among devices. Not just so I can download my data with a Mac or a PC, but so my doctor or healthcare system can do so too, and they can upload my pump settings directly to their internal systems when I’m in the hospital, and data from my CGM can feed directly to a healthcare professional’s desktop while I’m there. It would sure beat getting my finger poked at 3:00 a.m. by a nurse’s assistant. It would also insure that a) My data would be kept in a place where the staff can see it without looking at a chart; and b) No one would have to take time away from patients because they have to fill out a chart.
And as you know, that’s just the beginning.

– I want the United States Congress to think long term (that is, beyond the next election cycle) when it comes to caring for some of the most vulnerable in our healthcare system. The math is clear, the logic is clear: No one should have to give up their continuous glucose monitor just because they start on Medicare. Continuing this practice puts lives at risk, and when you consider emergency room visits due to hypoglycemic unawareness, falls and accidents that might occur due to the same, you can see why this illogic costs the federal government way more than a simple Dexcom unit for those who need one.

– Finally, I would like to see more PWDs have access to one-on-one conversations with others that are living or have lived through the same things. I want us to learn from each other. I want us to know each other, even if we’re from different backgrounds. I want us to benefit from the collective wisdom and encouragement that comes from shared experiences.
 
 
Wow, that’s a long list. In reality, a lot about diabetes and diabetes care has changed rapidly in the last few years. But just like when a prisoner gets a taste of freedom and then wants even more, I’m interested in seeing how far, how fast we can really go toward helping my fellow PWDs who are seeking support, better drugs, devices they can feel confident using, all without bankrupting us. Let’s get to work on that people! You are worth it!


 
 
 

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Comments

  • Lauren Nygard  On May 14, 2015 at 11:02 am

    Yes, yes, and yes about standardizing the tools needed to live a healthy life with diabetes!!! All of your points are great but that one really resonated with me. Thank you for your post–you got me thinking about a lot of changes that we all should advocate for! 😉

    Liked by 1 person

  • sysymorales  On May 14, 2015 at 12:49 pm

    My favorite post of the day. Nailed it. I strongly agree with all the proposed cha cha cha changes.

    Liked by 1 person

    • StephenS  On May 14, 2015 at 1:16 pm

      Thanks! Just an FYI: I loved the guide you wrote about starting a D-blog long ago. I read it a lot before I started this one. Thanks!

      Like

  • Kelley  On May 14, 2015 at 1:48 pm

    Great list! I really wish I could do a trial of an insulin pump because then maybe I would switch from Medtronic but alas they don’t so I’m stuck. It’s funny you think of David Bowie, I think of Tupac 😛

    Liked by 2 people

  • Ally  On May 14, 2015 at 5:10 pm

    Kelley- we’re on the same music wavelength this week. Totally thinking of Tupac, too. I want to see your rap skills, Stephen!

    Like

  • Kate Cornell  On May 14, 2015 at 5:39 pm

    ❤ Thank you for your tireless advocacy. (and I had the same music in my head…still do, thanks to you. 😉 )

    Like

  • Laddie  On May 14, 2015 at 8:28 pm

    Thanks for advocating for me (<2 yrs from Medicare) and for everyone with diabetes.

    Like

  • Mike Durbin (@mydiabeticheart)  On May 14, 2015 at 9:57 pm

    Great post, Stephen. Thanks for all that you do!

    Like

  • Scott E  On May 14, 2015 at 10:00 pm

    Well, I’m not quite fully on-board with the standardization thing — although the Luer Lock is the clear medical-industry standard, I do personally like the Medtronic connector better. I fear that adopting and enforcing standards would discourage innovation and improvement. (Open data is a different game entirely, and I fully endorse that concept).

    But as for the others, absolutely!

    Like

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