Welcome to Part 2 of my talk with award-winning journalist and Type 1 diabetic Dan Hurley, whose new “epic book” Diabetes Rising is due out soon. In case you missed it, read Part 1 of the interview here. Today, Dan talks about achieving the impossible — an artificial pancreas that works, and a diabetes community that will band together to demand faster, better treatment advances.
DiabetesMine) While working on this book, what did you learn that surprised you the most?
Dan Hurley) First, I was totally unaware of how far the artificial pancreas movement had come. It seems like I’ve been hearing about that for decades. After a while you think, ‘Give me a break…’ You begin to suspect that it will never come, that the people involved are just dithering away. So it was very exciting to discover the energy that’s been brought to the effort.
Second, I had no idea — because you can’t find it on Wikipedia — that the incidence of Type 1 is increasing, and has been increasing as long and as strongly as Type 2. New cases are not reported, so there’s no obvious data. Basically I backed into it. I thought I would look for a place in the country where there were a lot of new cases of Type 2. By Googling and Googling, I eventually stumbled upon clusters of Type 1. Jim Hirsch told me about the little town of Weston, Massachusetts, where dozens of children have been showing up with Type 1. I went there to research it. Then I ended up talking to every top epidemiologist at the CDC (Centers for Disease Control) and every top diabetes epidemiologist I could find. Lo and behold, Type 1 is increasing — all over the world!
You participated in the JDRF’s artificial pancreas study. What where your thoughts coming out of it?
The artificial pancreas will be the first technology that requires diabetics to do less work. As anyone who spends enough time fussing with their diabetes knows, you can never pay enough attention. Even if I was constantly into it, on top of it, I’d never get it right all the time.
The beauty of these (AP technology advances) is that every minute, it’s making little corrections. They have these real mathematical wizards who are trying to figure out what the heck your pancreas does, and how it keeps your sugar so perfect all the time. They’re creating algorithms like the ones in computers that control airplanes and space ships.
I think it’ll be life-changing. At its worst, it’ll be better than what I do every day. There’s no way it can’t be. We’re all screw ups – we’re human beings and our attention is limited, our ability to calculate correctly is limited.
The practical challenge for the FDA is the fact the that we all know the technology’s not perfect – someday someone will land in ER with a severe low that was caused by this thing. If it’s 1% as many times as diabetics land in ER without this technology, then is that OK? How much risk is permissible?
Gotcha. You also mention the notion of connecting the iPhone as part of the artificial pancreas – like we’ve illustrated here with the DiabetesMine Design Challenge. The stumbling block there is also FDA approval. Could you imagine a way to de-couple the medical component from the “controller” which is more of a consumer electronics device?
They probably would say it’s still dangerous if your device tells someone what to do and they end up dying. But coupling these things is utterly doable, I would say: the world is crying out for freeware, pirated, to-hell-with-the-FDA approaches. I don’t know if it’s legal or illegal.
But look, all the manufacturers are aware of the pressures to make this stuff cooler, and friendly — so in five years, we probably won’t even be having this discussion. In the end, it’s the math that’s the barrier. They’ve got to keep getting better at better at CGM… and then doing the math so that users can have the best possible predictive model (of where BG levels are heading).
This is somewhat of a side note, but I was surprised you were so ‘up’ on bariatric surgery. I’ve interviewed some patients who said it did not solve their blood glucose control problems…?
Had I known of people who didn’t have success, I would have interviewed them, too. Certainly surgery is never 100% successful for everyone. It’s still a hypothesis that this surgery can do away with Type 2 diabetes. My brother, for instance, is mildly overweight — not wildly — just a slightly overweight guy in his ’50s. I would never in a millions years recommend bariatric surgery for Type 2 for a guy like him.
Still, the consensus is that it more reliably reverses diabetes than it does completely correct a weight problem. There’s actually stronger proof for the effect on diabetes.
You end your book with a call-for-action for a new kind of organization, Citizens United in Resolve to End Diabetes (CURED). Do you personally plan to follow up on that, and if so, how?
I’m a journalist, not an advocate. I’m really bad as a group organizer.
But I’ve wondered for years why there aren’t people with placards and posters marching in front of NIDDK asking, ‘Where’s my artificial pancreas? What’s taking so long?’
It’s going to be transformative technology. It’s going to keep people healthy, by doing better than us. It will help take the blame off us. My life mission is not to my keep sugars under control. I’ve got bigger things going on that.
And why are health authorities so asleep on Vitamin D? Why is there no registry of Type 1s? All these parents can read the book and learn about Type 1 going up, but that can’t tell them if there’s something peculiar to their community. Does Weston, MA, have a true statistical anomaly going on?
I don’t know why doctors can’t be required to report new cases of Type 1 diabetes, like they do for HIV and other conditions. Nobody’s thought to make a registry of a chronic disease like this.
I think people have some reason to be demanding some answers and some action.
Humongous thanks to Dan for his advocacy, however inadvertent