A new diabetes drug could push off insulin use for years. A CT who is afraid of needles it trying it.

Bennett DiGiacomo’s younger sister, Philomena, 9, has type 1 diabetes, stage 3, which means she relies on an insulin pump.

So Bennett, 11, knows the inconvenience facing him if his disease progresses that far.

“She has a pump. So she has to change it every few days,” Bennett, a sixth-grader at West Shore Middle School in Milford, said.

Bennett’s diabetes is at stage 2, though, and he recently received a treatment that hopefully will stave off the disease, possibly for years, even for his lifetime if he’s lucky.

He’s the first patient at Yale New Haven Children’s Hospital to receive the medication, called Tzield, the trade name for teplizumab.

“Individuals who have a family member who has type 1, they have a higher risk than the general population, which is why we realize it might be important to screen family members,” said Dr. Jen Sherr, a pediatric endocrinologist at Yale New Haven who is treating Bennett.

“And there’s even further work coming down the pike about maybe we need to be doing general population screening eventually, because most people who are diagnosed with stage 3 type 1 do not even have a family member,” she said.

“If I never developed it, then I may feel shocked/surprised in a good way because I still think that I can still get type 1 diabetes, Bennett said. “So if I knew that I wouldn’t ever get type 1 diabetes, I’d be shocked because it’s quite rare.”

Bennett’s mother, Sarah DiGiacomo, said Bennett hasn’t shown any symptoms of type 1 diabetes, an autoimmune disease in which the body’s immune system attacks the pancreas, which produces insulin.

“Prior to us getting tested, he just seemed like your normal active little boy,” she said. But she decided to have the test through TrialNet, which researches and screens type 1 diabetes, since his sister has the disease.

“We found out in June, actually on my daughter’s first anniversary of her diagnosis, that Bennett has all of the antibodies that indicate that he’s going to get type 1 diabetes in this lifetime,” DiGiacomo said.

Bennett is afraid of needles, so he’s waiting for his six-month checkup to see what his blood sugar level is.

“He just wants to live his life as normally as possible until he gets the full diagnosis,” his mother said. He also has a fraternal twin, Sullivan.

“It could be that he never gets it and it could be that the medicine doesn’t work at all,” DiGiacomo said.

“Some people, they still get it within six months of the emergence of the antibodies,” she said. “And so for me that is the scariest is not knowing. And the fact that he won’t let us check makes it even scarier. … But I feel hopeful that it will work and that we will get a solid five years.”

“Dr. Sherr told us that is an average of five years that you can push back stage 3 type 1 diabetes, and like with everything that’s happening I feel like every other week there’s a new breakthrough in type 1 diabetes care, and so those five years could be the difference between a life with diabetes and a cure for somebody that is stage 2 like him,” DiGiacomo said.

Sherr said stage 3 diabetes is more than a physical disease. It’s also a mental and emotional burden on the patient and family.

“When you’re diagnosed, you’re thinking about, what do I eat? what’s my glucose?” she said. “How am I taking my insulin? What’s happening to my numbers? … Parents are constantly thinking about, is their child OK, are they safe? Siblings may be impacted, recognizing that somebody else may need more attention because of dealing with this chronic medical condition.”

“We know that family members are at increased risk of developing type 1 diabetes and we can identify those who are at greatest risk by the presence of immune markers in their bloodstream,” said Dr. Kevan Herold, an endocrinologist at the Yale School of Medicine.

“(Bennett) had them and he had some evidence of impairment in his ability to make insulin, which is what happens in diabetes,” Herold said. “And so we know that kids like him have about a 75% risk of being diagnosed with clinical type 1 diabetes in about five years. And so you receive this drug in order to delay the onset of disease.”

Herold also said insulin isn’t an ideal treatment for stage 3 diabetes, so the longer a patient can go without needing it the better.

“Even though you use insulin, it doesn’t completely restore normal blood sugars,” he said.

“So it’s 24/7, 365 your entire life … plus the fact that individuals who are diagnosed as children in general have between a 10- and 13-year loss of life expectancy, so the absence of having diabetes, even for a week, is a gift for patients.”

Ed Stannard can be reached at estannard@courant.com.