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!