The real impact of volunteering for diabetes clinical trials


If you’re the type who chooses to be actively involved in advancing the treatment and cure of diabetes, you are probably doing one of the following things:

Organize and gather your friends for a walking fundraiser.

Take part in an annual bike ride to fund research, asking everyone you know to donate.

Host your own special event to raise funds.

But what if there was one more way? one that only required you to just be you?

We are talking about volunteering for clinical trials. While trials have been around for a long time (after all, this is how insulin was invented in the first place), it has only been in the last decade and a half that the number of diabetes trials with significant participant needs has skyrocketed, according to Dayton Coles, National Volunteer Chief of JDRF’s New Clinical Trials Education Volunteer Program.

At present, there are over 70 ongoing trials, and possibly more worldwide, hence the need not only to fund them, but also to prioritize volunteers for national advocacy groups. like JDRF, Coles said.

“Over time, active participation in clinical trials will become a natural part of the community that we are… We want to create a culture of participation in clinical trials,” he added. “It’s one of the most effective ways to advance research. “

Most people who sign up for a clinical trial hope for better treatment or better care. It’s a natural urge.

But those who participate in the trials – even when they end up in the placebo group (without treatment) – get so much more from it, they say.

Things like insider knowledge, close relationships with research experts, extra eyes on your medical needs, and even compensation are all added benefits, say those who volunteer.

And then there are the less tangible but the most valuable benefits. In the case of Martin Drilling and Alecia Wesner, both type 1 diabetics (T1D) participating in the trials, it was friendship.

Drilling, who has suffered from T1D for more than 60 years, explains bluntly why he enrolled in a National Institutes of Health (NIH) study on the effectiveness of laser eye treatment in 1974: Despair.

“What motivated me? he remembered. “If I didn’t, I was going to go blind.”

His doctor at the Joslin Diabetes Center in Boston told him after an appointment that his perforated veins were a sign that he was losing his sight.

Good news, though: there was an ongoing trial he could sign up for that could potentially save his eyes.

He waited 3 months, during which he took the bar exam as a recent law graduate, and then enrolled in the study, hoping to find treatment to save his eyesight in the long term.

Today, thanks to those who came together to participate in this study, millions of people have had their eyesight saved, including Drilling himself. Drilling had known and loved the idea that people benefited from his participation for a long time.

But this abstract thought became a reality for him only 3 years ago, 44 ​​years after the fact.

As it turns out, in the spring of 2019, Drilling and Wesner were both in Capitol Hill talking to elected officials about supporting diabetes programs and the fight for affordable insulin.

The two, who had never met before, teamed up in a meeting with Senator Elizabeth Warren (D-MA). As Drilling began to explain this first study, its importance and impact over time, tears began to roll down Wesner’s cheeks.

“I collapsed crying,” Wesner said. “I spoke for years across the country of my history [and the importance of clinical trials], and the only part of my story that choked me had to do with my eyes.

Wesner was – and is – an industrial designer. When she first left college and built her career, she began to see wavy lines in her field of vision, a sign that her eyes were failing after decades of living with T1D.

Alecia Wesner and Marty Forage

“It was devastating,” she said, until she got some good news: there was now a way to stop the progress and save her eyesight.

She jumped on the treatment and now she can see clearly. “My only side effect is scarring.”

And so the reason for those tears that day was simple: Drilling was (unknowingly) describing how he participated in the trial that saved Wesner’s eyes.

For both of them, it was a surreal moment.

“It stopped me short of meeting someone who directly benefited from my participation,” said Drilling.

“I know there are millions of them, and I think about it sometimes. But meet someone one-on-one? It was a highlight, ”he said.

Today the two are close friends, calling each other often, checking in and keeping in touch.

For Wesner, who has been actively involved in clinical trials for many years, meeting Drilling gave him the opportunity to say “thank you”.

“The reason I have always felt compelled to volunteer for clinical trials is quite simple,” she said. “Someone, somewhere, stepped in to save my eyesight, and I never got a chance to thank them. Going to the trials was my way of saying thank you, as well as paying it forward.”

Now she has had the chance to thank Drilling in person.

Wesner said she was initially motivated to apply for clinical trials after hearing Tom Brosson, a long-time clinical trial participant, talks about a smart pump trial at a JDRF event.

“He was testing the algorithm [for a smart pump] and everyone was asking about the investments, ”she recalls. “Me? I asked to take a picture with him because I was like, ‘This is the future.’ I went home and said, ‘How do I get started? ‘ “

In it, and now, Wesner has participated in numerous clinical trials.

While her biggest advantage is her friendship with Drilling, something she says has added deeply 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 seems invasive, but with it, I feel like my diabetes control is improving. It’s like a refresher course, with a lot of eyes guiding you, ”she said.

Wesner said participating in trials also allowed him to take a close look – as well as a deeper understanding – of what goes into getting a device or drug through a trial and getting it to market.

“When you are in a lawsuit you really see how many people are working hard on it and how much that is involved,” she said.

Three years ago, realizing that the lack of study participants often slowed research progress and increased study costs, JDRF set out to increase the flow of study participants.

Just before the COVID-19 pandemic closed, they had started rolling out programs to educate the public and connect them to studies.

It’s a must-see project, Coles said.

“It became clear over time that many funded studies were delayed due to slow enrollment,” he said.

It meant more costs, and worse, he said, “a delay in the march towards progress.”

The organization will now share information about clinical trials across all of its platforms, as well as launching chapter-based awareness programs on the topic in areas with many trials nearby: Boston, New York, San Francisco and others. cities.

They will continue to push to connect all with their clinical trial search tool also.

Going forward, Coles said, they hope to work with healthcare providers to encourage them to share trial information when people with diabetes go to their regular care appointments.

Wesner and Drilling, who live in New York and Massachusetts respectively, recognize that living near top universities and research centers makes volunteering less difficult.

“I encourage everyone to do this,” Drilling said, “But I also understand that I live in a place that is easy to access and can afford to do. This is actually another reason. why I keep doing it: because I can, and many others cannot.

But now there are clinical trials for just about any type of person in just about any location, Coles said.

From online surveys that provide valuable advice to researchers, to internet interviews and dating, to essays that will welcome you on a trial visit to a city, there are many ways to get involved.

And while something like, say, wearing the next cool device possible has that added appeal, Wesner says she learned more about her life and her diabetes even through investigative studies.

She recently participated in a study on the emotional impact of calling diabetes a “handicap”.Person who had always bristled with this label, she left the study with a new look.

“It really got me thinking and made me understand why that term might be OK,” she said.

“I learned and helped by being a part of this [remote] study, ”she said. “You don’t have to be near a hospital to participate 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 narrow down 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 Training Volunteer Program.
  • Clinical connections is a group that connects volunteers to diabetes trials as well as other trials across the country.
  • You can also go directly to the NIH website to discover active trials that are recruiting participants.

No matter how you might choose to find a first try, Wesner and Drilling are sure you will come away with something won.

And, added Coles, you will be doing something vital.

“It will speed up progress, there is no doubt about it,” he said. “There is a clinical trial for almost anyone of any age with any part of their disease. We all need us here.

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