Why I Keep Participating in Clinical Trials for Diabetes Innovations

This content originally appeared on Diatribe. It was reissued with permission.

by Julie Hebery

Participating in clinical trials is a way for diabetics to directly engage in the evolution of diabetes treatment. Julie Heberly shares her experiences of becoming obsessed with up to seven consecutive glucose monitors during clinical trials, and why she believes it is so important.

Living with type 1 diabetes is challenging and everyone I have lived in this condition wants to make things better, whether it’s a cure or a more effective and affordable medication or treatment. But simply “wanting” it is not enough.

After being diagnosed during my junior year at university, I went through the initial sadness process, which ultimately happened. Things just didn’t get better. My health wasn’t just improving. My life with diabetes wasn’t merely evolving from vials and syringes to automated insulin delivery (AID) systems without research, I thought it was part of an effort to help myself and countless others.

Hanging in hope with type 1 diabetes

At this point I knew there were very few people with diabetes and very few people with type 1. Those who I knew along with diabetes had a different disease in type 2 diabetes. They took oral medication, daily walks and seemed to be able to manage glucose well. But I followed the numbers with insulin injections, juices and exercise. My instinct was saying there must be a better solution. If not, I would have had to do something about it too.

Four years after diabetes, I completed what was at the time a comprehensive application from the insurance company to justify my first insulin pump request. When I finally got approved and trained, I was overwhelmed. This new technology was changing my life. I was so grateful for that, I wanted to be more involved with the communities and groups that were driving advances in diabetes care.

Since 2002, I have been committed to helping with these advances in free time, career, resources, and yes, diabetes care. Most of this involved taking part in several clinical trials. One was a daily survey on my smartphone. The other was a collection of cognitive testing in the lab. However, the most interesting clinical trials, and in my opinion, the most useful thing for me and others with diabetes, was one of the continuous glucose monitoring (CGM) sensor tests.

My first-hand experience participating in a CGM clinical trial

In 2009, I was watching an endocrinologist and diabetes medical team at Thomas Jefferson University in Philadelphia, PA. When I saw a flyer with recorded trial information on the wall of the exam room, I immediately asked the endocrinologist about it. He highly praised the researchers and thought I would be a good candidate for research. This was a clinical trial of CGM aimed at improving the accuracy and experience of wearing CGM sensors.

Wait – can I help make the CGM sensor better, more accurate and more comfortable? I quickly signed up and accepted to join.

On the day of trial, my husband took me to Jefferson’s campus in Philadelphia and dropped me off outside an old college building I had never seen before. I checked in to the front desk and was escorted by the elevator. As I slowly moved through the guts of this building, my imagination began to begin and my nerves began to unravel. Just as I was thinking about coming back, I came across the trial team.

The trial itself was relatively easy. I put on a large amount of CGM: two FDA approved sensors already on the market, two new sensors that are not yet approved, and two CGMs intended for special use by people while being treated in hospitals.

All six sensors were inserted into my abdomen. This is the only “6-pack” abs I’ve experienced.

All six sensors were inserted into my abdomen. This is the only “6-pack” abs I’ve experienced. By this point, we had already adopted CGM technology and did not need to remove the personal device for testing, so we inserted 7 cgm into the mid-section to activate it, and the insulin pump for the day was cut off. The assortment of medical devices inserted into my body, limiting my mobility and artificially replacing the functions of the healthy human parts, began to make me feel like a Frankenstein creature called “Juliest-in.”

Once the researchers installed all the sensors, my right and left arms were connected intravenously to insulin and glucose pouches. I didn’t eat or drink the whole time while my blood sugar levels were artificially controlled by the contents of the bag and monitored with various CGMs. I was in hospital bed for 12 hours as the researchers repeatedly raised and lowered glucose, recording the ability of various CGM sensors to accurately monitor glucose levels.

I was so excited about the idea of ​​a more accurate CGM that I didn’t mind looking and feeling like a Frankenstein monster or being in and out of hypoglycemia and hyperglycemia.

The trial team and I watched TV and chatted while my glucose levels were being monitored. From a mental and emotional perspective, it was intentional boring. But it was physically challenging.

My glucose roller coaster was unacceptable to my body. I developed a migraine and my vein began to collapse about 10 hours after the test. This led to problems that ultimately meant that the exam ended a little earlier than planned. With level 3 hypoglycemia episodes and constantly reliable juice boxes.

My husband arrived a little early to pick me up and was led into a room where I lay in the glory of all “Julie Seyne”. His first expression of fear, seeing his wife connected to multiple medical IV poles, and my CGM 6 pack was hilarious for me. This experience turned out to be a great dry run to be in the operating room during the birth of my daughter years later.

When the trial was finished I was disconnected from all their devices and reconnected properly to mine. The team greatly appreciated me and instructed my husband to closely monitor me. That night I remember something very difficult. I was very hungry, but my stomach refused food. My headache persisted and my body felt like it had been hit by an 18-wheeler, but the next morning I woke up and resumed my normal life.

What I took from my experience as a participant in exams

There was no follow-up from the trial, no formal approval of the outcome, nor a learning-based next step. However, that wasn’t the reason I applied to court in the first place. I took part in the trial to improve care options for myself and others.

Two years later, I wore the latest version of CGM during a healthy and stable pregnancy. It was a much better, more accurate and more comfortable sensor than the first CGM I wore when I started my CGM trip five years ago. Ten years later, I still honour a healthy pregnancy with its CGM technology and the information it provided.

The continuous evolution of CGM continues to surprise me. All iterations are previous improvements, and behind every version there are real people taking part in clinical trials to provide the data needed to understand the effectiveness and safety of the device.

I believe that my small part of the exam has contributed to the evolution of CGM and diabetes care. It’s not enough to just want a better option. Every person with diabetes should be an active advocate in searching for solutions. I should do it again and I encourage you and me!