Jacob Lichtenstein – Juvenile Diabetes

As a child, he played just about every sport from baseball to tennis. From the sixth grade through his junior year in high school, he played competitive basketball and soccer, traveling with his teammates to out-of-town games on most weekends.

Jacob got his first insulin pump when he was 5. The pump replaced the need for multiple daily injections of insulin with a 24-hour continuous infusion of shortacting basal insulin delivered through a catheter. The basal insulin is supplemented by bolus doses before meals and when his blood glucose level is high.

For the past three years, Jacob has also used a continuous glucose monitor (CGM), which tracks his blood glucose levels around the clock and alerts him when they are close to being outside the acceptable range. With his new CGM — one of the most technologically advanced models on the market — Jacob can follow his blood glucose level at any time using an app on his smartphone.

Jacob exemplifies a technological revolution that is beginning to transform the management of type 1 diabetes, says Radhika H. Muzumdar, MD, chief of Division of Pediatric Endocrinology, Diabetes, and Metabolism at UPMC Children’s Hospital of Pittsburgh.

Technological advances

Technology for managing diabetes has come a long way since a 10-year old Canadian boy became the world’s first recipient of an insulin injection in 1922.

In those days, doctors checked patients’ glucose levels by mixing a urine sample with Benedict’s solution in a test tube and placing the test tube in boiling water for five minutes. The change in the color of the mixture in the test tube — to yellow, orange, or red — indicated the patient’s glucose level.

The “dip and read” urine test was introduced in the late 1940s. Blood glucose testing strips came along in the 1960s. The late 1970s saw the introduction of the first “portable” blood glucose monitors, which weighed about four pounds and needed to be plugged into an electrical outlet.

Fast-forward to June 2018, when the U.S. Food and Drug Administration (FDA) extended the approval of what is known as the hybrid closed-loop system, a first step toward the artificial pancreas for use in children as young as 7 with type 1 diabetes. A week later, the FDA approved the first fully implantable CGM for use in people ages 18 and older who have either type 1 or type 2 diabetes.

A 2017 review article concluded that CGM systems are safe and effective in both type 1 and type 2 diabetes and can improve the quality of glycemic control, reduce the risk of hypoglycemia, and allow lower target levels of both mean glucose and glycosylated hemoglobin1 . Another study published earlier this year found that CGMs improve overall blood glucose control, reduce hypoglycemia, and are cost-effective for adult patients with type 1 diabetes compared with daily use of fingerstick test strips.

New normal

Jacob’s mother Julie Lichtenstein knew something was wrong when her son was 4 years old and woke up three mornings in a row soaked in urine. At the time he had been potty-trained for more than a year. She immediately took him to see their family doctor. A random blood glucose test in the doctor’s office showed a level well above 300 mg/dL.

Jacob was admitted to UPMC Children’s Hospital for five days to stabilize his condition and start him on insulin. When he came home from the hospital, Mrs. Lichtenstein recalls, “we had this new normal of meal planning and insulin injections. At night he would get long-acting insulin. During the day, he would get shots of short-acting insulin whenever he ate and maybe a couple of other times.” She spent her days “on call” to go to Jacob’s preschool to give him an insulin shot whenever he needed one.

Jacob recalls that when he first got his insulin pump, he thought that the device was a toy. “I remember asking if there were any games on it,” he says. But even though he was only 5, he says he quickly realized how much easier it was to manage his diabetes with the pump than with insulin shots.

“I could adjust my insulin dose if my blood sugar was getting high or low,” he says. “And I don’t have to worry about overdrawing insulin in a syringe and accidentally giving myself too much.”

Artificial pancreas

The holy grail in diabetes technology research is a device that would replace the functioning of the pancreas by seamlessly providing the amount of insulin that the body needs at all times. And although the technology isn’t quite there yet, according to Dr. Muzumdar, it’s getting closer.

Several devices now on the market claim to be an artificial pancreas. These hybrid closed-loop insulin delivery systems function as both an insulin pump and a CGM.

Advanced features found on many of these devices include automatic adjustment of insulin delivery based on the user’s glucose values, automatic suspension of insulin delivery for up to two hours when glucose values reach a user-selected threshold, and alerts that warn the user when glucose is rising or falling rapidly or reaches a preset high or low limit. Most devices are water-resistant and can be worn while bathing or swimming.

However, patients still need to manually enter information about their consumption of carbohydrates and tell the device to deliver a bolus insulin dose. In addition, some devices still need to be calibrated at least twice a day by means of a fingerstick blood glucose test to confirm that the CGM is accurately measuring the user’s glucose level.

“Patients undoubtedly experience a learning curve when it comes to using technologically advanced devices such as CGMs,” cautions Ingrid Libman, MD, PhD, director of the Diabetes Program at UPMC Children’s.

“The decision to start a device needs to be thoroughly discussed with the patient and the family,” Dr. Libman says. “It takes commitment, effort, time, and the support of a dedicated diabetes care team to decide on the right device(s) and become comfortable with using them. And, of course, technology will never replace the need for self-care. Patients still need to follow a healthy meal plan, exercise regularly, follow their blood sugar patterns in order to see if adjustments in their insulin doses need to be made, and get regular medical checkups.”

With his parents’ encouragement and supervision, Jacob learned how to manage his diabetes. At a young age he could test his own blood sugar and wanted to be involved in counting carbohydrates and programming his insulin pump, says Mrs. Lichtenstein.

When he was 9, Jacob went to summer camp for the first time. “People thought I was crazy sending him to a camp where none of the other kids had type 1 diabetes, but it was part of him learning to be more independent,” says Mrs. Lichtenstein.

In the summer of 2017 Jacob traveled to Israel on his own for a three-week leadership training program. While he was there, his mother — eight time zones away in Pittsburgh — could monitor his blood glucose levels via the same smartphone app that her son has on his phone. (This feature is not supported by all CGMs.)

Now in his senior year at Taylor Allderdice High School in Pittsburgh’s East End, Jacob is looking forward to going away to college next year. After spending summers at camp and taking that solo trip to Israel last year, he says he feels well prepared to look after himself when he goes to college. Above all, he remains determined that type 1 diabetes won’t prevent him from living life to the fullest.

“The biggest thing I’ve learned is that there are no limitations,” he says. “Even if you have type 1 diabetes, you can still do whatever you set your mind to.”