I was diagnosed with diabetes when I was 15. I always figured that by now, it would have effectively been cured — not necessarily meaning science would have found a way to reverse the condition and restore the body to complete self-sufficiency, but I assumed that by now management would mean something along the lines of a once-a-month shot that would then be self-regulating. I know that might sound naive, but that assumption was based at least in part on the research I was reading then. It seems to me that Type 1 diabetes in mice was basically cured in 1998! Study after study showed unbelievably promising results or flat-out cures that never seemed to actually lead to real-life results for those of us living with diabetes. And yet, here we are. The closest we have to a cure are pump/CGM combinations that are starting to run artificial pancreas algorithms. And that’s a big step, but far short of perfect. I am one of those lucky folks who seem to have a lot of trouble with a pump — when I tried one, absorption proved terribly inconsistent, infusion sites started to hurt more and more, and my skin reacted to the adhesive IV dressings I would have to put over the cannula sites since the adhesive on the actual cannula often failed to hold for a full two days. I went back onto multiple daily injections and haven’t looked back.
I continue to read promising studies using nanotechnology, genetically engineered implantable insulin producing cells, and so on, but as before, it all seems to be forever trapped in that stage of “promising new research” that can’t seem to make that leap into the category that might actually be useful for US. It’s a frustrating cycle to be caught up in. And in the midst of it all, I have some real concerns for the future of diabetes research as the political winds seem to be shifting. Massive cuts are coming in whatever budget this Congress passes. They may not be as drastic as the initial offering, but there will be cuts. And diabetes funding will almost certainly be among them. Research will still be funded, and I don’t think all government funding will dry up, but it’s going to shrink. And that puts us in a tenuous situation.
You see, when the funding has to shift to private companies, it can do two things, neither of which are good. First, it can very easily lead to higher prices for drugs — and insulin is ALREADY skyrocketing. With a combination of deregulation AND less public funding, those prices could become truly outrageous. Second, when the funding is private, the outcomes need to generate the revenue to make up for that upfront expenditure. And it’s very easy to see a scenario where companies begin prioritizing research that leads to costly (and continuous) treatments, while deemphasizing treatment options that are one-time, or only once every few months. Let’s face it, as treatment becomes more self-regulating, it becomes cheaper.
It seems to me that we are creating a situation where discovering a cure will be harder. If we take money away from public institutions and ask private companies to lead the way, that cure may be even further off in the horizon. Because public institutions, while not perfect, don’t stand to lose out when a cure is found. But a number of private companies DO. We are talking about taking the money AWAY from those with a natural instinct to find a cure and giving it to those institutions with a nature all instinct to find PROFIT.
Here’s what all of this means — we must advocate for ourselves. All of us living with diabetes need to make our voices heard. We need to call our Congress. We need to write them. We need to e-mail them. We need to find those institutions like the American Diabetes Association and inform ourselves on what the budget will mean for diabetes research. We can’t afford to sit on the sidelines here. Whatever your political affiliation, if you care about the future of diabetes research, it’s time to stand up and be heard. The future will be what we allow it to be, folks. Let’s not just watch from the sidelines.
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Source URL: https://www.diabetesselfmanagement.com/blog/intersection-diabetes-research-politics/
Scott Coulter: Scott Coulter is a freelance writer diagnosed with Type 1 diabetes at age 15. He has spent a great deal of time learning how to successfully manage his blood sugar and enjoys writing about his diabetes management experiences. Also a longtime Philadelphia-based musician, Scott is married to a beautiful, supportive, extraordinary wife, and together they are the proud parents of four cats. (Scott Coulter is not a medical professional.)
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