Living in anticipation: the benefits of delaying T1D  

It’s been a year since Carter’s Tzield treatment. He is now 15 and still has no signs of diabetes symptoms. But it’s not possible to tell if that is a result of the drug’s delay or the natural timeline of the condition’s emergence. It’s too early to know.  

“It’s not affecting him yet,” Jaime Lucove said of her son. Carter wears a continuous glucose monitor (CGM) to track his glucose, but doesn’t take insulin. He follows mild dietary guidelines such as avoiding sugary beverages and limiting high-carbohydrate foods (though he is not on a strict low-carb diet). He also takes some supplements that may contribute to immune system health, or insulin sensitivity, including vitamin D, C, B complex, fish oil, and berberine.  

Lucove has considered having Carter take verapamil, a calcium channel blocker that’s associated with improvements in C-peptide levels in those newly diagnosed, but to date, Carter has not added this medication.   

One aspect of the Tzield treatment Lucove wants people to understand was that the trial showed a diagnosis delay of two years for those taking the drug versus those who did not. This means the intervention group (given Tzield) developed T1D, on average, four years after the infusion. On the other hand, the control group (not given Tzield) developed full-blown T1D, on average, after two years. Tzield benefits varied from person to person.  

“We have no idea of the impact it’s going to have,” Lucove said. “Some people ask, ‘Do you know that Tzield worked?’ No, there’s no way to tell. You have to just keep checking your blood sugar.” What we do know is that Tzield isn’t a preventative measure or a cure, but it can help to delay the onset of T1D.  

If it will happen anyway, what’s the point of slowing it down? Lucove answers the question with a personal story. Her earliest memory, the first thing she can recall, she says, is being in the hospital when she was 3 years old, receiving her T1D diagnosis. She remembers the additional challenges of growing up with diabetes, in particular, worrying about low glucose during sports.  

“If you ask me, would you take a 14-day infusion to have a break for two years from your diabetes? I would say, ‘Sign me up. Give me a two-year break.’ Give me a one-day break. I might take a 14-day infusion for a one-day break.” 

 

Unexpected benefits 

While the value is mainly about giving people more “diabetes-free” time, it also brings a tangible benefit to loved ones and caregivers. “Think about the fear my mom had of me passing out from low blood sugar,” Lucove said, “I don’t have that now for Carter.” Screening and delay can also help to reduce the likelihood of DKA at diagnosis. 

And for now, Carter can play sports unimpeded — namely football and soccer — and be a teenager like his peers. “He doesn’t have to think about his blood sugar before exercise, he doesn’t have to change how he eats. He doesn’t need to count carbohydrates or change insulin doses. These are some of the many benefits.” 

Over a year since the infusion, sharing the diagnosis with her son has brought them closer, Lucove said. “We have this connection about diabetes, and we talk about it a lot,” she said. “He always comes to me with questions. It’s like a new thing we share that we can communicate about.”  

He’s used to wearing a continuous glucose monitor, and sometimes they compare their glucose readings. “If we match on our Dexcoms,” she said, “which has happened a few times, I’ll say, ‘Oh, we’re tied,’ and he laughs.” 

Carter is learning about diabetes with a sense of discovery and an understanding that science is evolving. “He’s into math and is more quantitative in how he thinks about things,” Lucove said. “He really wanted to understand — what are the antibodies? And how do they work? And what else can we do, like we did with Tzield, to stop it? Also, I can teach him about diabetes. This is one of the benefits of learning about it early — you can have a lot of conversations about diabetes.” 

  

Time to adapt 

Watching her son undergo the screening and Tzield treatment has brought unexpected emotions, Lucove said. She remembers one afternoon, about six months after he received the Tzield treatment, when she truly felt the weight of his new reality. She was at home, and Carter was at football practice.  

Since she receives his CGM levels on her phone, she gets alerts when his blood sugar drops too low. At football practice, Carter was not near his phone on the field, and when he reconnected, all his blood sugar data loaded at once, populating the CGM with two hours of low readings as it resynced. When she received these alerts, she was flooded with a sense of dread, worrying whether he may have passed out or had a seizure from low glucose.

The truth is, they were false readings, and he was fine, but the fear she experienced that day still haunts her.  

As a child growing up in Boston, Lucove had to be rushed by ambulance a few times for low glucose episodes. The emotions around those old emergencies reemerged. “When I had that moment with Carter, I realized that’s a trauma that I hadn’t processed,” she said. “I didn’t even know it was there. It was buried.” 

For her whole life, Lucove has taken pride in the fact that her diabetes hasn’t been an impediment. It was something to manage, but not something that stopped her. But now, it was her child who was potentially in harm’s way, and understanding this new vulnerability was a shock. 

“For me, diabetes is like an accessory,” Lucove said. “I do everything I want to do. It’s not a horrible thing for me, but there are very scary things.” She means the severe lows that had incapacitated her as a child. During those episodes, she recalls she couldn’t talk or move, and her brain felt like it was turning off. It’s almost too horrible to recall.   

“As a kid, I actually never talked about that with my parents,” she said. Over the years, she forgot about those dark moments. “If you had asked me before Carter was diagnosed, ‘Did you experience trauma from your diabetes?’ I would have said, ‘No, I don’t know what you’re talking about.’”

Remembering those episodes has been cathartic and an important reminder of the need to talk openly to Carter about her experiences so he is better prepared. Her fear on that day Carter had the false readings was one of the benefits of screening and the Tzield treatment. Instead of being a real emergency, it was a drill, a way to prepare before he is actually on insulin, and the stakes are higher.  

“So instead of getting diabetes thrust upon you all at once, it’s more like taking a gradual descent down the stairs,” Lucove said. “We’re not in any rush, and it’s not an emergency. He can slowly learn about diabetes.” 

They have time. Carter is learning how to prick his finger, how to wear a CGM, to pair carbohydrates with protein, and, for instance, when he eats an apple, to also have a piece of cheese.  

“I think he’s lucky,” Lucove said. “It would be better if we could cure it, but he has this slow start, like you’re buying a vacation — you’re buying a break. I think it’s cool that in the first few years of this drug being available, he gets to have it.” 

For families curious about pursuing screening and potential treatment with Tzield, Lucove offered the following recommendations from her family’s experience:  

 

  • Learn about the benefits and the risks  
  • Be prepared, learn everything you can about the process 
  • Follow the logistics of the insurance approval carefully and don’t assume that everything’s just moving along 
  • Find an endocrinologist who knows about the early stages of T1D and is well educated about screening and Tzield 
  • Talk with your child to make sure they understand the treatment at an age-appropriate level  
  • Recognize that screening will present you with information that has implications for both physical and mental health