With the surprising announcement this month that the FDA had cleared the way for Medtronic’s 670G hybrid system, sometimes referred to as an artificial pancreas, most people with diabetes were swinging their pump tubing with glee or juggling their (safety-capped) syringes in delight. And with good reason. We are on the cusp of a flood of new tools that will lessen the daily – make that hourly – burden of diabetes. It’s exciting. It makes my heart race in a good way, as I now know for certain that the tools to make life better for my daughter with Type 1 diabetes are not just a dream.
But there was a segment of our diabetes community – and all segments need to be heard and understood – that wasn’t all that jazzed. I want a biological cure, they said. Don’t talk to me until you’ve got that true cure. Which has been a kind of background buzz for a couple of years. A widely circulated petition is calling for major organizations – like JDRF – to fund less near term treatment research (and advocacy) and more “true cure” research.
I’m not going to debate what a “cure” is here, but I don’t consider a smart pump, even a wickedly smart one, a cure. Nor do I consider a device placed under the skin and replaced every couple of years a “true cure.” That said, what this segment of the population is saying is – put simply – better tools don’t excite me. Put more toward the biological cure. And to that I say, as many have said before me, “Those who cannot learn from history are doomed to repeat it.”
The diabetes community has been here before, and in the late 1980’s, had the same outcry. We want a cure! JDRF (JDF at the time) listened, embraced the movement, and gave it a name: TORIAC (Tohr-eee-ack).
TORIAC was an acronym for The Only Remedy Is A Cure. Our community threw itself behind it. By funding less innovation for daily care and focusing instead on the golden ring – the perfect biological cure – we would change the world, find that cure, and annihilate Type 1 diabetes
Only here’s what happened: The 90s came to a close with no cure. Sure, important major advances like islet cell transplant took place. There were advances in stem cell research. And more. We did move forward, but not one single thing from the TORIAC initiative changed lives in the immediate moment. TORIAC ended with many of those who had screamed for it feeling bitter, disappointed, and hopeless. That’s because even if we say all we want is the perfect end result, we humans need to experience tangible success, real time improvements, and better quality of life. It’s human nature. Even though great scientific advances were realized during TORIAC, because the small improvements didn’t occur, it didn’t feel like a success.
That’s what led so many JDF – now JDRF – volunteers to move into the 21st century saying, “We need technological progress. We need improvements to make our and our loved ones’ lives better while we continue on that road toward a cure.” That’s where things like Jeffrey Brewer’s brave initial $1 million donation to push JDRF toward funding research for technology came in. As has been said many times in the past two weeks, it was Brewer’s plea (and donation) at a JDRF International Board meeting that launched the entire artificial pancreas project. Then, Brewer pushed all to embrace the idea of supercharging the race toward smarter pumps and CGMs, the stepping stones needed for an artificial pancreas. That’s where the increased funding in advocacy came in. That’s when JDRF’s new embrace of outreach and support in daily living with diabetes began.
It’s also what led to JDRF funding the first – and extremely successful—multi-site human clinical studies of CGMs. It’s what motivated JDRF to give the first funding towards smart insulin research.
So when the FDA news came out and folks spoke out saying, basically, TORIAC, I remembered that history. And since I was there for the end of TORIAC and the beginning of the next phase, I hoped that we would learn from that history and not repeat it. As for those who were part of research advocacy before, during, and after TORIAC I say this: it’s a sign of a good, forward-thinking community when you learn from what didn’t work. No one will ever stop caring about a cure. But we need progress that makes daily life better until there is a true cure for Type 1 diabetes.
Meanwhile I will pedal my bike and work for donations and speak up until that true cure is found. But it’s not the only thing that matters, and it’s far from the only thing that improves lives.
