If you’re the type who chooses to be an active part of forwarding diabetes treatment and cure progress, you probably do one of a few things:
Organize and gather your friends for a walk fundraiser.
Take part in an annual bike ride to fund research, asking everyone you know to donate.
Hold a special event of your own to raise funds.
But what if there was an additional way; one that only required you to simply be you?
We’re talking about volunteering for clinical trials. While trials have long existed (after all, that’s how insulin was invented in the first place), it’s only been in the past decade and a half that the number of diabetes trials with significant participant needs has soared, according to Dayton Coles, national volunteer leader of JDRF’s new Clinical Trial Education Volunteer program.
Currently, there are more than 70 active trials, and possibly more around the world, pushing the need to not just fund them but staff them with volunteers as a priority for national advocacy groups like JDRF, Coles said.
“As time goes on, actively participating in clinical trials will become a natural part of the community we are… We want to create a culture of clinical trial participation,” he added. “It’s one of the most impactful ways to move research forward.”
Most people who sign up for a clinical trial are hoping to achieve better treatment or an advancement in care. That’s a natural urge.
But those who take part in trials — even when they end up in the placebo (nontreatment) group — come away with so much more, they say.
Things like insider knowledge, up-close relationships with research experts, added eyes on your medical needs and even pay are all added benefits, those who volunteer say.
And then there are the less tangible yet most valuable benefits. In the case of Martin Drilling and Alecia Wesner, both people with type 1 diabetes (T1D) who take part in trials, it was friendship.
Drilling, who has had T1D for more than 60 years, is blunt about why he enrolled in a National Institutes of Health (NIH) study on the effectiveness of laser eye treatment way back in 1974: desperation.
“What motivated me?” he remembered. “If I did not do it, I was going to go blind.”
His doctor at Joslin Diabetes Center in Boston told him after an appointment that his perforated veins were a sign he was losing his sight.
Good news, though: There was an ongoing trial he could enroll in that could possibly save his eyes.
He waited 3 months, during which he was taking the bar exam as a freshly minted law school graduate, and then enrolled in the study, hoping to find a treatment to save his sight long-term.
Today, thanks to those who stepped up to participate in that study, millions have had their eyesight saved, including Drilling himself. Drilling long knew and loved the idea that folks were out there benefiting from his participation.
But that abstract thought became a reality for him just 3 years ago, a full 44 years after the fact.
As it happens, in spring of 2019, Drilling and Wesner were both on Capitol Hill to speak to elected officials about supporting diabetes programs and fighting for affordable insulin.
The two, who had never met prior, were teamed up at a meeting with Sen. Elizabeth Warren (D-MA). As Drilling began explaining that early study and its importance and impact over time, tears began streaming down Wesner’s cheeks.
“I broke down crying,” said Wesner. “I’d been speaking for years around the nation about my story [and the importance of clinical trials], and the only part of my story I’d get choked up about had to do with my eyes.”
Wesner was — and is — an industrial designer. When she was first out of college and building her career, she began to see wavy lines in her field of vision, a sign that her eyes were failing after decades of life with T1D.
“It was devastating,” she said, until she got good news: There was now a way to stop the progress and save her sight.
She jumped at the treatment and now, sees clearly. “My only side effect is scars.”
And so the reason for those tears that day were simple: Drilling was (unknowingly) describing how he took part in the trial that saved Wesner’s eyes.
For both of them, it was a surreal moment.
“It stopped me in my tracks to actually meet someone who directly benefited from my participation,” Drilling said.
“I know there are millions out there, and I sometimes think of that. But to meet someone 1-on-1? It was a powerful moment,” he said.
Today, the two are close friends, often calling and checking on one another and staying in touch.
For Wesner, who is a dedicated clinical trial participant and has been for many years, meeting Drilling gave her a chance to say “thank you.”
“The reason I always felt compelled to volunteer for clinical trials is pretty simple,” she said. “Someone, somewhere, stepped up to save my eyesight, and I never had a chance to thank them. Participating in trials was my way of saying thank you, as well as paying it forward.”
Now, she had the chance to thank Drilling in person.
Wesner said she was first motivated to apply for clinical trials after hearing Tom Brobson, a longtime clinical trial participant, speak about a smart pump trial at a JDRF event.
“He was testing the algorithm [for a smart pump] and everyone else was asking investment questions,” she remembered. “Me? I asked to take a picture with him because I thought, ‘this is the future.’ I went home and said, ‘how do I get in on this?’”
In she got, and now, Wesner has been part of many a clinical trial.
While her biggest benefit is her friendship with Drilling, something she says has profoundly added to her life, there have been others as well.
“Even if you end up in a control group, there are a lot of people watching you,” she explained.
“It sounds invasive, but with it, I feel like my diabetes control improves. It’s like a refresher class, with lots of eyes guiding you,” she said.
Wesner said being in trials also has given her an up-close look — as well as a deeper understanding — of what goes into getting a device or drug through a trial and to market.
“When you are in a trial you really see how many people are working hard on this, and how much is involved,” she said.
Three years ago, realizing that a lack of study participants was often slowing down research progress and adding costs to studies, JDRF dug into working to increase the flow of participants to studies.
Just prior to the COVID-19 pandemic shutdown, they had begun rolling out programs educating the public and linking them to studies.
It’s a must-do project, said Coles.
“It became clear over time that a lot of studies funded were delayed because of slow enrollment,” he said.
That meant more costs, and worse, he said, “a delay in the march toward progress.”
The organization will now be sharing information about clinical trials across all their platforms, as well as launching chapter-based outreach programs on the subject in areas with many nearby trials: Boston, New York, San Francisco, and other cities.
They will continue to push to connect all with their clinical trial search tool as well.
In the future, Coles said, they hope to work with healthcare providers to encourage them to share information about trials when people with diabetes are in for their regular care appointments.
Both Wesner and Drilling, who live in New York and Massachusetts respectively, acknowledge that living near top universities and research centers makes volunteering less difficult.
“I encourage everyone to do this,” said Drilling, “But I also understand that I live in a place with easy access, and I have the wherewithal to do it. That’s actually another reason I continue to do it: because I can, and many others cannot.”
But there are now clinical trials for just about any type of person in just about any place, Coles said.
From online surveys that provide valuable guidance to researchers, to internet-based interviews and meetups, to trials that will house you during a trial visit to a city, there are many ways to participate.
And while something like, say, wearing the next possible cool device has that added appeal, Wesner says she’s learned more about her life and her diabetes even through survey studies.
She recently took part in one looking at the emotional impact of calling diabetes a “disability.” A person who had always bristled at that label, she came away from the study with a new view.
“It really made me think, and made me learn about why that term might be OK,” she said.
“I learned and I helped by being a part of that [remote] study,” she said. “You don’t have to be near a hospital to take part and help.”
People with T1D, their family members, and even the general public can get involved to support clinical trials.
- The JDRF trial portal will help you hone in on what, where, and how might be the best way to participate for your individual situation.
- You can also find your local JDRF chapter (888-533-9255) and call to inquire about their Clinical Trial Education Volunteer Program.
- Clinical Connections is a group that connects volunteers to diabetes trials as well as other trials around the country.
- You can also go straight to the NIH site ClinicalTrials.gov to discover active trials that are enrolling participants.
No matter how you might choose to find a first trial, Wesner and Drilling are certain you’ll walk away having gained something.
And, Coles added, you’ll be doing something vital.
“This will speed up progress, no doubt about it,” he said. “There’s a clinical trial for almost anyone of any age at any part of their disease. All of us are needed here.”