We people who care about advances in diabetes care are unique creatures. Just like our tastes in coffee (with sugar? I say, EW! You say, yes!) Or vacations (Skiing? That’s so cold, you might say. I say, bring it on!). We all have individual tastes and views, which, of course, has caused some debate over the Medtronic 670g Hybrid System. Some folks are up in arms over the name(s) used for the newly FDA approved hybrid system (or artificial pancreas). Others feel that a better tool is meaningless because they have their sights on a biological cure. And many have asked me my take, so I’m going to outline it here. Your opinion may vary, but this is where I stand.
First, some background. My daughter Lauren was diagnosed with Type 1 diabetes in the beginning of kindergarten. She’s 25 now. I was the National Government Advocacy Chair for JDRF back when the artificial pancreas project first started. I’ve been entrenched in the concept and the push to make it happen for many years. I was in the room when Jeffrey Brewer first made his call to action, and I was on phone calls that were brainstorming sessions. “What would this look like to you? What does this mean to you?”
I’ve given this all a decade of deep thought and I believe the FDA decision is historic because it clears a path and sets a roadmap for other products to come to market. Seeing that it can happen builds the confidence of other manufacturers to dig deep and get a product out. More products will equal better products and advances. Just as it happened with insulin pumps, new and better devices will come out regularly, with cooler bells and whistles. And many companies will offer incentives to get you to use their products even if it’s not your “warranty is up” time. Minimed did it well when they worked through the Paradigm line.
I should add, too, that the FDA approval came from regular folks advocating. Our voices, our meetings, and our letters pushed this issue to the top of their list. Our advocacy helped them study it sooner and closer. What did Margaret Mead say? “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” True that.
It doesn’t have to be a cure to matter. Come on – I don’t know anyone who does not want a cure for their or their loved one’s diabetes. Saying that celebrating a better way to live with diabetes must replace a wish for a cure is just plain silly. To speak to that idea in a simple way; the concept of “we should only fund research for a cure,” I say this: If we had said that after insulin was invented in the 1920s, we and/or our loved ones would still be living shorter and more difficult lives, facing almost guaranteed complications, and struggling more mightily than any of us in a first world nation can imagine.
I want a cure more than anyone can know. But as my child grew, I developed dreams just as vivid as my dream of a cure. Like: Lauren not having to eat at exactly the same time every day and only the food allowed on the meal plan (dream realized via better insulin and pumps). Like Lauren being able to check blood sugar fewer times a day (dream realized via CGMs). Like some day – her getting married and having a child and it being less difficult for her and her spouse (you do know that spouses of pregnant women with diabetes are heroes, right?).
Is there any kind of insult to my dream of a diabetes cure if I entertain – and realize – other dreams along the way? I say no.
A name is a name is a name. It’s semantics, folks. And go ahead and say the public is going to be confused and think that these new tools mean we don’t need anything more. You are right. But it’s not like this is new. I cannot count the number of times someone has said to me “Oh – why do you still have to worry about that? Didn’t she get that pump that takes care of it all for her?” That’s been happening for decades. I cannot hold in my mind the total times I’ve cringed when I read a news report saying “he was fitted with an insulin pump.” Fitted? Like “Oh, ouch! This one is squeezing my remaining beta cell mass a little too much!” It’s frustrating and infuriating to have to explain and explain and explain.
But here’s the thing: this is not one product. This is not one moment in time. This is an entire new generation of tools and treatment, and it needs an umbrella name for it all to be grouped under. JDRF called it the APP – Artificial Pancreas Project – because it is just that. A project. A mission. Not just one finite goal.
If anyone has a better name for that mission, let’s share. But I do believe it is going to benefit us all to have an overarching name for all the advancements we are going to see. And an aside: for those who fear this will make people stop giving toward a cure, I shared this news with my community the day it came out. Within four hours I had over $1,200 in new donations to my annual Ride to Cure, almost all from folks who had already given. So, their response was this: Oh, wow! Our donations are actually doing something! Let’s do more! (P.S. my friends rule!)
It’s not a Medtronic thing: Sure, they had the first. But more than 18 companies are working on hybrid systems and smarter tools. To me the bigger picture of choices that we will have is amazing. So if you don’t like Medtronic, hang tight. More is coming.
This MUST be accessible to all. And, here, we have work to do. You know, people seem to gloss over the fact that we have figured out better treatments so that people with diabetes can live to be old, old, old but… stop and ponder this: we don’t have a Medicare system that covers the tools they need to stay safe and alive once they are old. That has to change. And these new tools must be covered and accessible to all.
So that’s how I feel right now.
How does my daughter feel?
Well, almost 20 years into life with diabetes, she told me recently that while she appreciates my crazy drive toward a cure, she would be fine with better tools to continue to live better and have better long-term outcomes, along with one other thing. “Prevention, Mom. Prevention. I am okay, but I dream of a day when no other kid has to deal with this.”
I’m on it, Lauren. But I’m still pushing for your cure. These new tools don’t change that in any way. All they change is your future. For the better.