Nearly every morning, Martin Drilling dives into the Olympic length pool at his Duxbury, Massachusetts, health club and cuts smoothly through the water, ticking off lap after lap in his morning fitness routine.
Sometimes, folks notice a device attached to his arm and wonder. But most mornings, he’s just another swimmer using that pool to stay active and fit.
What those around him don’t know is Drilling — diagnosed with type 1 diabetes (T1D) nearly 68 years ago — is a living, breathing, and constantly active diabetes clinical study in human form.
And he’s not alone.
As a member of the Joslin Diabetes Center’s Medalist Study, Drilling is one of more than 1,000 T1D long-timers who’ve had the condition for 50 years or more and who have stepped up and quite literally given all of themselves to better the world for others with T1D.
Multiple major diabetes breakthroughs can be traced directly to Medalists like Drilling, and many believe more are coming.
Here’s the kicker: None of those breakthroughs would have been possible, were it not for the combination of a famed diabetes doctor wanting to celebrate successes more than a half century ago, the building of a strong bond in those folks, their insistence that answers lay within their bodies, a then young (and determined) endocrinologist and researcher who believed them, and a growing level of support and funding from individuals and organizations.
This is the story of the Medalist Study, a program that quietly ticks along making not just ripples but waves of current in the diabetes research world.
It was 1948, just a little more than 25 years after the world first had access to what was then a miracle elixir, insulin. Dr. Elliott P. Joslin, now often referred to as the godfather of all diabetes care, began awarding medals to people who had lived with T1D for 25 years.
Of course, today his legacy lives on in the Joslin Diabetes Center in Boston, Massachusetts, that bears his name. But even back then, Dr. Joslin understood that each person’s continual focus on their care led to a healthier life, and it took courage and grit that deserved recognition.
By 1970, the center had to add 50-year medals to their offerings, since more and more people were living longer lives with diabetes.
Today, the program is still run out of the Joslin clinic and it’s awarded thousands of medals to people worldwide living with many decades of diabetes:
- More than 5,000 people with T1Ds have gotten a 50-year medal.
- A total of 90 people have received 75-year medals.
- A total of 22 have received an 80-year medal since the first in 2013, and a notable one is being awarded soon to someone who was diagnosed at only 6 hours old (!) back in 1942.
Organically, the “Medalists” began communicating, bonding, and sharing tips and experiences. They became a kind of private and personal study and support group for one another.
But it wasn’t until the early 2000s when a then-young endocrinologist was seated with a few of the Medalists at a diabetes charity gala that the added value of the program took root.
“When I first got [to Joslin as a doctor] I heard rumors that many of the Medalists had no complications,” says Dr. George King, who now serves as Joslin’s director of research. “But then it was just rumor, an anecdote. There was no proof or study to back that up.”
But it stayed in his head.
Then, at the diabetes gala as he sat with a few Medalists and listened to them talk about their health, focus, and belief that their bodies held clues, King realized the opportunity in front of not just him, but of all people who care about diabetes research and treatment.
“I thought, ‘this is crazy, right?’ Here you have a group of people who don’t have complications, of whom we had more than 1,000 in our registry since the 1970s,” he says. “So, I proposed to look at them to find out if a person could be resistant [to complications from T1D] and why.”
He was pumped, determined and ready to dive into it.
Except: No one other than the Medalists themselves and King thought it was a good idea at first.
“I started applying for grant after grant in 2000 and all the applications got rejected,” King remembers. “They said it was a ridiculous idea.”
The comments are burned into his memory.
“These people are over the hill. So, what’s the point?”
“There’s no good control group (because the ‘control group’ is no longer alive)”
“We’re not going to learn anything.”
Still, fueled by the Medalists’ insistence they had clues within them, he pushed on, realizing that those many denials came not because the study would not be of value, but because it would be of a value no one had considered before.
“They were thinking of looking for risk factors, which we would not find here, and in that way they were right,” he says. “But we wanted to look for protective factors. This was a new concept.”
Finally, in 2003, King won a $23,451 grant from the Lion’s Eye Club.
“They brought it to me and said they had raised the money quite literally one dollar at a time and had raised it just for this, which is why the amount sticks in my head,” he says.
That gave him the fuel to begin. Just a year later, JDRF stepped in with much more, leading to the first of many “big studies” that King, the Medalists, and their team would take on.
“JDRF was the first [diabetes organization] to fund this, and we’re so proud of that,” Margery Perry, then JDRF’s international volunteer lead of research and today a part of JDRF’s international board of directors, tells DiabetesMine.
“Back then we were seeing a lot of research being done in animal models,” she says. “All of a sudden, we have this whole cohort of people doing really well. It just seemed so obvious: Let’s study human things in humans.”
“Even before the research aims, it’s important to always remember that support and commendation are a vital part of the Medalist program,” King says.
Drilling can attest to that.
“I’ve met so many great people there,” he says of the program’s biannual get-together in Boston, Massachusetts. “We sit around at lunch and tell stories, give and get emotional support, and just be with people who truly understand.”
“Just look at the pictures,” he says. “Everyone is always smiling because it just feels so good to hang with all the other ‘extreme duration diabetics.’”
That’s the name of the first study that looked at why as many as 40 percent of the Medalists had no severe complications (and many no complications at all) after more than 50 years of diabetes, and many of them, King admitted, not in the peak of control. It’s also what they call themselves now, part as a joke but also with much pride.
Drilling and his fellow Medalists keep in touch via private social media groups, smaller meetups, and walks on the waterfront of his town with another Medalist who lives close by: longtime T1D and advocate Paul Madden.
“Everyone I have met has the optimistic point of view of ‘we can do it!’” Drilling says. “We’re happy we are still here, and physically able to still be active. We lean on one another, yes. And we lift one another up as well.”
That’s been a gift for the Medalists, he says, but the best gift, he believes, has been seeing results of studies they give generously to — both with bodies and their wallets.
Then there is the meat of the program: The biological research.
King says the first big breakthrough came not from something a researcher noticed under a microscope, but from following up on the insistence from the Medalists.
“They had been saying for years that they believed they still produced residual insulin,” King says. “No one believed them.” But they insisted that from life experience they could tell they still made insulin here and there.
King dug deep, faced more turn-downs and then eventually got the funding needed to study this phenomenon.
The research findings?
“They all are making
“This was a real ‘eureka!’ moment,” says Dr. Sanjoy Dutta, vice president of research at JDRF.
“No one even looked at this before because it was just assumed (the beta producing cells of the pancreas) were toast,” he says. “Now we know they still produce residual insulin. Is this a clue to no complications? We still don’t know.”
Once those results were confirmed, an entirely new research consortium was launched: regeneration.
“This opened up an entire new field,” Perry says. Today, JDRF not only funds multiple studies on regeneration, they’ve also formed consortiums of researchers around the world working on that topic.
The Medalist study also has helped with discoveries — and treatments — for things like eye and kidney damage. New studies are looking at gut microbia, and a recently completed study found that looking in the eyes can give clues to kidney health, a possible way to get ahead of complications and slow them down or stop them.
“We’ve learned a lot,” says King, who has less struggle getting funding nowadays. There are also things they’ve discovered they had wrong in the past.
First, he says, people who had no complications after a half a century didn’t have identical diabetes care plans, nor did they have “perfect” control.
“From 2005 to 2015, we studied 1,000 people,” he says. “A third of them did not have that so-called ‘great’ control over time (defined as an A1C in the 7.3 to 8.5 range). So clearly, they were protected in other ways, too.”
King says that genetic studies showed no uniqueness to pinpoint the reason “something that surprised us. We’ve got more work to do.”
Fueled by past successes and the way their insistence helped shift the Medalists from simply a support program to a research powerhouse, the Medalists pushed for more, offering up even more of their time and energy.
More than half of the Medalists have signed on to donate their organs after death, a mind-blowing percentage, King says, when you consider the public organ donation rate is much lower.
“They’re so incredibly dedicated to this, even after their deaths,” King says. “That makes this one of the richest T1D organ banks in the world.”
From this, along with the other studies, King says he hopes they can learn enough to “not only prevent eye and kidney disease, but even reverse it.”
That, Perry says, speaks to the “Diabetes Mom” in her.
When her daughter was diagnosed about 30 years ago, she says that she, like most parents, “was not thinking of complications. You’re thinking of getting that shot in her. But later, it comes to the forefront: complications and with it, fear.”
Once she saw the Medalist Study take root, she says, “It really gave me — and gives me — a lot of hope that there will be treatments now (while work continues toward a cure).”
Drilling got a taste of what it feels like to be on the giving end 2 years ago. While advocating for diabetes needs on Capitol Hill, he met another T1D named Alecia Wesner who had her eyesight saved: much from research that Drilling the Medalist had taken part in.
“Until then, I had never attached a name and a face to anyone who had benefited,” he says. “I do know in the broader sense in that millions have been helped. But to meet someone personally? It was really something great.”
Barbara Borell will, in the coming year, be one of the early firsts to receive the rare 80-year medal.
Being a first is nothing new for her, however. Borell’s been told that she’s the youngest T1D diagnosis who has lived with this condition the longest anywhere in the world, having been diagnosed in 1942 at only 6 hours old. Her father had survived Pearl Harbor and was still serving there at the time. There was no such thing as a diabetes care and education specialist then, though Borell would go on to become one later in life.
Her feeling on getting one of these initial 80-year medals?
“It’s almost like winning Miss America or Miss Universe,” she tells DiabetesMine. “This is an accomplishment.”
When she comes to Boston, Massachusetts, from New York to collect her award, she will once again give a couple of full days to the study process.
“I don’t know if we will ever find the cure, but I do see us finding so very much better ways to live well and live long with this. It’s really something to be part of that,” she says.
King says that aside from the clinical learnings these Medalists provide, they are a study in human resilience.
He discovered one secret ingredient they all seemed to have in common: positive support.
“They almost always — always! — have really wonderful people helping them,” King says. “Besides their own amazing spirit, they all have someone helping them, supporting them, caring about them.”
King plans on continuing studies, finding clues and working toward treatments, breakthroughs, and more. Why does he know he can?
“The Medalists,” he says. “If it weren’t for the Medalists, we wouldn’t have done any of this — any of it. Their enthusiasm is amazing. We all owe them so much.”
Borell knows how he can pay her back.
“I told Dr. King: You’d better get that 100-year medal ready, because we’re coming for it. To which [Dr. King] told me, ‘Knowing you, we must!” she laughs.