By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
A 9-year-old Fishers boy has become the first pediatric patient in the state to undergo a new therapy to prevent the onset of stage 3 type 1 diabetes.
Colin Ozdemir, son of Gemi and Kelli Ozdemir, received the 14-day infusion of teplizumab at Riley Hospital for Children earlier this month.
The drug received FDA approval in November 2022, and Riley, which through Indiana University School of Medicine was among multiple sites around the country involved in the clinical trials, is the first healthcare organization in the state to offer it to pediatric patients.
“This new drug is as close to a cure as we’ve seen,” Kelli Ozdemir said last week. “If they have figured this out, they’re going to figure out a cure. We are so close.”
The mother of four, who sits on the board of JDRF (Juvenile Diabetes Research Foundation), knows the toll that type 1 diabetes takes on the body. Her two older daughters, ages 15 and 13, have the disease, a chronic condition in which the pancreas produces little or no insulin to regulate blood sugar levels. The oldest was diagnosed at the age of 4.
Ozdemir has had her younger two children screened regularly, except during the pandemic, and she could see that Colin’s blood sugar numbers were worsening.
Learning that Riley would be the first in the state to offer the newly approved treatment was exciting, to say the least. But she and Colin’s dad did their research, talking to doctors around the country who are knowledgeable about the drug and connecting with the mother of a patient who participated in one of the drug trials.
“It’s very new, so it came with some risk but not a lot of documented serious side effects or complications,” she said. “I would not be able to sleep at night if I didn’t do everything I could to keep Colin from having to go through what the girls do. And if we didn’t do this drug, he would probably be on insulin right now.”
Riley pediatric endocrinologist Dr. Jamie Felton has walked with the Ozdemir family during this pre- and post-period of treatment and has been involved in type 1 diabetes research since 2014.
She explains how the new drug works:
“In type 1 diabetes, immune cells that normally fight infection mistake the cells that make insulin as foreign and destroy them in the same way that they would destroy bacteria or viruses. To do this, these cells need to communicate with other cells and receive the correct signals to attack. Teplizumab is an antibody that blocks these cells from talking to each other, so they cannot attack.”
The one-time treatment buys people time, in effect, without having to worry about living with type 1 diabetes. The hope is that it will stave off the disease for years.
As a physician and a researcher, Dr. Felton is thrilled with the opportunity to help more patients delay the day when they might have to start taking insulin to control their blood sugar levels.
As a person with type 1 diabetes herself (diagnosed at the age of 11), she has focused her career on this very thing – stalling the disease so it cannot rob another patient of their childhood.
“The focus of my job is taking care of patients with type 1 diabetes, and when I’m not doing that, I’m in the lab trying to figure out what is causing it so we can develop effective therapies,” she said.
While the disease has a genetic component, most people who are diagnosed don’t have that first-degree relative history, Dr. Felton said.
Ozdemir encourages those who do have a family history to get screened.
“I want to scream from the rooftops that this drug works,” she said. “If you have type 1 diabetes in your family, screen the rest of your family. It’s the only way you’ll know if you’re eligible for this treatment. And it could change your life.”
For years, researchers, including Dr. Linda DiMeglio of Riley’s Diabetes and Endocrinology team, have been trying to intervene and modulate the immune system to see some sort of effect, and nothing has worked – until now, Dr. Felton said. Trials were conducted from 2010 to 2016, and the first results were published in 2019.
“To be able to see the fruits of some of those efforts result in something that is changing lives right now is really, really gratifying,” the physician said.
For Colin, who will turn 10 next month, it is lifechanging, his mom said.
“We’re trying to get to the point where he can live life without even thinking about diabetes because right now, he doesn’t have it. He doesn’t need insulin; he doesn’t need to worry about it.”
Still, he wears a glucose monitor so she can see what’s going on.
Even if one day her son becomes dependent on insulin, every day that he doesn’t is a gift because it means his body is spared the toll the disease takes for a little longer, and he doesn’t have to lose his childhood to worry, she said.
“It means so, so much.”
Even delaying the onset for two years would be a win in Dr. Felton’s eyes.
She’s hoping for more, “but any time we can buy will be beneficial,” she said. “The longer we can preserve the body’s ability to make insulin, the better outcomes those people have when they’re diagnosed, and they manage the disease better later on.”
Type 1 diabetes is not just about taking insulin, Dr. Felton explained. It’s something you’re always thinking about. Everything you do – diet, hormones, stress, exercise – everything affects the blood sugar.
“To have more time without that mental burden is good.”
It also has reinvigorated research efforts, she said.
“It’s this combination of seeing people’s lives being changed and excitement to move the research forward that the field hasn’t seen in quite a while.”
There are more patients in the pipeline who could be eligible for the treatment at Riley, Dr. Felton said, but one of the challenges is identifying patients who qualify.
“Making people aware that there is an opportunity to change the course of disease is really important,” the physician said.
For her part, Ozdemir is grateful for the chance to improve her son’s life, even as she struggles with how the disease has affected her entire family’s life.
“I hate it and I wish we didn’t have to deal with it,” she said. “I have days where I’m mad at the world and mad that this happened to my kids, but I get back up just like any mom and do it again the next day.”
Her older girls are happy that their little brother has the chance to beat back type 1 diabetes, even if they didn’t get that same opportunity.
“They rally around each other when it comes to diabetes.”
Colin will return for blood tests in October, then see Dr. Felton again in February for repeat screenings.