The legacy of the breakthrough – Type 1 diabetes and the insulin pump

This blog has been entered in the Patients Have Power Writing Contest run by Clara Health, designed to raise awareness about clinical trials.  I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research and innovative treatment methods.

Every day I look at my insulin pump no less than 100 times.  But no matter how many times I look at it, I still think of my mother. I think about the life-changing clinical trial she participated in some fifty years ago.  The  story of how my mother contributed to the lives of myself and countless others reminds me that patients have power.

The need for the clinical trials

In 1972, there were no insulin pumps, home testing of glucose, CGM’s ,and no practical way for People With Diabetes (PWD’s) to manage their blood sugars. Although it was less than 50 years ago, it seems like an ancient reality.

It was around this time that my mother was diagnosed with type 1 diabetes in 1962, and by 1967, her health was in rapid decline.  Yet, with the tools available, she had no way of monitoring her blood sugar throughout the day. The only way to gain insight into blood glucose levels was to use very imprecise urine test strips or go to the hospital and have blood drawn, something that was done every 90 days.

My mother joins a clinical trial

Coincidentally, during one of my mother’s routine hospital stays, a researcher came to tell her about a clinical trial taking place at the hospital.  The researcher asked her if she would like to participate as a control subject in a research study to evaluate the feasibility of a new device called an insulin pump.  My mother readily agreed.

The clinical trial for my mother was inconvenient but straightforward. She had her blood drawn once every two hours for seven days. The researchers would then compare her blood sugar to that of a person who would have their blood sugar controlled by an insulin pump.

My mother had no idea what an insulin pump might be or if it would be a viable method of treating her diabetes. If it worked, she would no longer have to take injections. That kind of treatment was something my mother could readily endorse. Imagine no more boiling glass syringes, and no more sharpening stones to keep the needle sharp.

Being curious, my mother sought out a man who was using the prototype pump.  She was taken aback because the pump was so large that it had to fit on a cart on a cart.  In addition the pump required daily tripos to the hospital to check and calibrate the pump with her blood sugar.  She told me later that an insulin pump was not something she would ever want. The size and difficulty of operation was far too much to be practical.

Later, the researcher explained that this prototype would be miniaturized, and someday it might manage all diabetes functions with no intervention. When she got home, she explained to all who would hear that this remarkable device would save lives eventually. She felt like as a patient, she had power to influence diabetes treatment for decades to come.  Despite her daily struggle, the future felt brighter.

It never happened for my mom 

My mother passed away in 1986 at the age of 49. She died of multiple complications of diabetes.  One might think of her passing as a failure of medicine.  I see it differently. Because in 1974, I was diagnosed with type 1 diabetes.  My mother’s contributions to research suddenly meant a great deal to me.  I was always proud of her for doing it, but her contribution became personal when I was diagnosed.

Near the time of mother’s death, in-home blood sugar testing became a reality. Doctors began talking about carbohydrate counting and insulin management.  Then in the 1990s, insulin pumps were born.  The giant machines were gone, replaced by portable, belt-sized units.  Today over 30% of people with diabetes use pumps.  These pumps are a direct legacy of the people who sacrificed to be in clinical trials in the 1970s through the 1980s.

Today, I wear her legacy on my belt. My modern insulin pump records glucose and makes treatment decisions in a semiautomatic mode. This very pump has reduced the time it takes to manage diabetes by about one half. Instead of perhaps 200 decisions each day about how to dose insulin and when to eat, exercise, sleep, rest, play, write, laugh, and live, I can choose to do those things and feel confident that my pump will care for my blood sugar for me.

When I look at my pump, I know how much my mother put her faith in science and the clinical trial process to make that particular sacrifice in 1971.  When I look at my pump, I am so proud that my mother put herself out there to be a small part of what became a ubiquitous device to manage blood sugar.

I also see something else.  I see my grandchildren and their children’s children. Of course, I hope that no one else ever has to endure diabetes as it is a challenging disease. But I am confident in one thing; my mother’s sacrifice that one week in 1971 has had a tremendous impact on lives to come. If any of my descendants were to be diagnosed with diabetes, there will be a little part of my mother’s faith and her willingness to participate in clinical trials that will surely improve their life.

Forward-thinking today

During that week in 1972, my mother influenced the lives of future generations for the better.  She participated in a study that never benefited her directly.  Yet she was confident in the future, and she knew her small sacrifice could someday make a big difference for people with diabetes.  Fifty years later, I am so proud of Mom. I doubt I will ever have the chance to do something like participating in a pump trial. But I know I can make small differences by participating when and how I am able. After all, who knows what or when the next big diabetes breakthrough might come?  If my mother taught me one thing, it is that seemingly small contributions to research came to have amazingly large impacts. I’ve learned that despite the struggle in our daily lives, patients have power to transform, change, and make a lasting impact on the medical system.