Lived Experience and Innovation: Advancing Treatments Together
By Matthew Walsh
For individuals living with diabetes and associated pain such as diabetic peripheral neuropathy (DPN), more treatment options are being developed every day.
Once innovations across this multidisciplinary field demonstrate efficacy on a small scale, this research moves to clinical trials, which serve as the “bridge” between idea and approved treatment.
The value of lived experience
There is a real need for people living with diabetes to be involved in research; 80% of clinical trials are delayed due to lack of participation, according to Antidote, a clinical trial patient recruitment and patient engagement company working to bridge the gap between potential treatments and the individuals who need them.
Krystle Samai, Vice President of Mission at The Diabetes Link, which provides peer support communities and resources to young adults living with diabetes, was diagnosed with type 1 diabetes as a child. She has been participating in clinical trials since she was in college.
“I was able to change my own regimen for better outcomes,” she shares. “Most people with diabetes get 15 to 30 minutes with an endocrinologist a few times a year; participating in clinical trials is like turbo-charging that. Imagine having one-on-one time with a clinical diabetes expert for hours at a time.”
Patients bring key firsthand experience to diabetes research, says Deborah Taylor, Senior Director of Marketing and Business Development at T1D Exchange, a nonprofit organization that facilitates research and drives improved care and outcomes for people living with type 1 diabetes.
“Getting insights directly from people who are living with T1D is an important part of research,” she explains. “Capturing their voice helps to ensure that their needs are understood and can be incorporated into new resources and new treatments. There is no substitute for lived experience.”
Molecules, technology, and antidepressants: Up-and-coming diabetes innovations
As of January 2024, there were 903 trials recruiting adult or pediatric patients with diabetes in the United States, and 30 trials recruiting individuals living with DPN, says Rich Towne, PharmD, RPh, senior clinical informatics manager for Antidote.
One key area of DPN research involves voltage-gated sodium channels and calcium channels, which are cellular proteins that can affect neuropathic pain signals. Treatments targeting these proteins are among a class of drugs called small molecule inhibitors, which are the subject of a variety of current and recent DPN studies. Some of these drugs are also being studied for their effectiveness in protecting and improving the function of nerve cells.
Current research covers various medication classes, including quick-acting oral drugs. One medication being studied interacts with the endocannabinoid system to treat diabetes-related neuropathy as well as other types of neuropathic pain.
Sometimes new treatments can stem from old treatments for other conditions. Researchers found an existing antidepressant that performed well in trials on mice, interacting with the primary cells of the peripheral nervous system to reduce glucotoxicity and nerve damage. A retrospective study on people living with diabetes who happened to be taking this antidepressant also showed a reduced incidence of DPN. Other research is exploring medications used to treat kidney disease or migraine to determine if they also are effective in addressing DPN symptoms.
Gene therapies are another focus of current DPN trials. Intramuscular injections that interact with the DNA have shown success in reducing pain, in addition to potentially increasing the likelihood of nerve survival and improving blood flow, Towne says.
One recent study utilized “wearable data” from insulin pumps coupled with continuous glucose monitors to investigate changes in glucose related to seasons, holidays, and even days of the week. Technology will be an increasingly important part of treating diabetes (and preventing DPN onset) going forward. Another area being explored is at-home laser therapy, intended to stimulate cells and enhance their energy production—reducing pain with fewer side effects, Towne says.
Whether through investigating genetic and epigenetic risk factors, the human stress response, or cellular and molecular causes of diabetes, researchers continue to search for answers.
Working together to drive research
People living with diabetes who are interested in being involved in research can ask their medical providers about trials, and organizations like The Diabetes Link and T1D Exchange seek to simplify the process of participating in a study.
The T1D Exchange Registry connects patients and researchers in the United States. Enrolled participants have access to a custom dashboard where they are notified about research opportunities, including online surveys, virtual studies, and in-person clinical trials.
The Diabetes Link offers a similar registry that alerts young people living with diabetes about opportunities to participate in research.
“By sharing their experiences, participants help researchers better understand real-world diabetes management, the use of health services and diabetes therapies, and other illnesses that impact people with diabetes—all of which helps to spur research initiatives aimed to help people with diabetes,” Taylor notes.
This complex disease won’t be understood overnight, but the combined efforts of medical professionals, patients, and researchers are consistently leading to discoveries that improve the lives of those with diabetes.
“It’s not easy living with diabetes—in fact, it’s really hard,” Samai shares. “But being able to channel that frustration into something good, and to know that I’m making a positive impact not only for myself but for others, makes it all feel a little better.”
HOW TO GET INVOLVED IN RESEARCH
—The Diabetes Link: bit.ly/TDLResearch
—T1D Exchange Registry: t1dexchange.org/registry
—Clinical trial match: bit.ly/USPFResearch