There is only one treatment that can delay the development of type 1 diabetes. It’s a drug named teplizumab (Tzield). When given to people with early type 1, it delays the progression toward full-blown diabetes by an average of three years.
Tzield was approved in late 2022, but many people in the type 1 diabetes community are still unaware of it. That’s understandable. For one thing, relatively few people ever learn that they have early type 1 diabetes: Most of us were diagnosed at a later stage, after the symptoms of acute hyperglycemia appeared. For another, Tzield is extremely expensive. The sticker price for Americans without insurance is reportedly nearly $200,000. Very few patients, of course, will pay the full price out of pocket, and Tzield’s manufacturer has an affordability program to help make things work.
Diabetes Daily was lucky enough to speak to the family of a young boy who recently completed treatment with Tzield. His name is Richard Gehring. He’s 10 years old, and he was the first child in Nebraska to receive the groundbreaking therapy.
Finding Tzield Patients
The path toward Tzield treatment begins with a screening test to determine if a patient has any of the autoantibodies that are known to precipitate type 1 diabetes.
To date, there is no definitive guidance on who should or should not be screened. The American Diabetes Association’s recommendations are fairly vague: “Relatives of youth with type 1 diabetes should be offered testing for islet autoantibodies.”
In Richard’s case, screening was a no-brainer. He has three brothers with type 1 diabetes. His father has type 1 diabetes, and it runs in his mother’s family, too. Anyone could see that Richard had an unusually strong genetic risk of the condition.
Richard’s primary care clinician, Earline Edwards, APRN-NP, helped steer the Gehrings to TrialNet’s Pathway to Prevention. This program offers free type 1 diabetes screening to relatives of people with type 1 diabetes, done at home or in a lab. As a bonus, you’re helping contribute to TrialNet’s ongoing research into type 1 diabetes prevention.
The test results told Richard that he had two of the autoantibodies that cause type 1 diabetes, which was enough to diagnose him with an early stage of the disease. The screening had revealed that he was essentially guaranteed to develop the condition at some point in the future.
The Three Stages of Type 1 Diabetes Development
You might not have known that experts distinguish between three stages of type 1 diabetes development:
- In the first stage, patients test positive for autoimmunity antibodies, but there are no symptoms and blood sugar levels remain normal. It is virtually guaranteed that the patient will progress to the second and third stages, but the timing is impossible to predict.
- In the second stage, the autoimmune attack has resulted in some beta cell destruction. Blood sugar levels may be slightly elevated, but the patient will experience zero symptoms
- The third and final stage is full-blown type 1 diabetes. The patient now requires insulin.
Tzield is approved only for people in the second stage of type 1 diabetes.
When Richard got his results back, he learned that he was still in the first stage. At that point, the Gehrings knew that Richard would eventually develop type 1 diabetes. But he wasn’t yet eligible for Tzield.
There’s no telling how long any patient might stay in the first or second stage of type 1 diabetes progression. So, the Gehrings began routinely testing Richard’s blood sugar in order to track the changes to his condition.
They bought a Dexcom continuous glucose monitor (CGM), had his A1C regularly measured, and even did at-home oral glucose tolerance tests (OGTTs), the best way to measure the body’s response to carbohydrates. From day 1, Richard’s results suggested that his metabolism was moving in the wrong direction. The Dexcom showed that “he was spiking after meals,” and “his OGTTs were always a little bit abnormal, from the very first one,” says Joanna Gehring, Richard’s mother.
Eventually, Richard’s A1C surpassed 6.0 percent. “That’s when they told us that he was in stage 2,” says Joanna. It was time for Tzield.
Meanwhile, Edwards was working with the team at Children’s Nebraska to get their systems ready for their very first pediatric Tzield patient. With no idea how long Richard’s window for treatment might last, the clinicians wanted to get him the new medicine as quickly as possible.
“We were concerned that he would develop [stage 3] type 1 diabetes within the next year,” she says.
Taking Tzield
Tzield is a liquid that is administered with an IV infusion. Every day for two full weeks, Richard would go to an infusion center and sit calmly in a chair for about two hours.
“We’d go in, they’d take labs, and I’d get a sticker,” he says. “It was easy. One medicine made me a little sleepy, that’s all.”
The sleepy medicine was Benadryl, given to help reduce the risk of infection. It is common for patients on Tzield to experience short-term reductions in white blood cell counts, but in the vast majority of cases they rebound by the end of the two weeks. Richard had labs drawn daily to check on the health of his immune system.
The actual infusions were completely uneventful. “He did his homework most of the time,” says Joanna. After 14 treatments, Richard was ready to go back to his regular life.
The Benefits of Delaying Type 1 Diabetes
Nobody thinks that Tzield can prevent type 1 diabetes: Richard will, someday, develop the full-blown condition. But there are both short- and long-term benefits to putting it off as long as possible.
“If you can put off diabetes for a few years, get through some of those developmental milestones, wow, it makes a big difference. Their ability to cope with it is totally different,” says Edwards. “You look at the emotional aspect, the quality of life; he doesn’t have to go through all the treatment.”
And “when you’re looking at long-term complications, the longer you can put off the development of diabetes, that lessens the risk.”
Edwards adds that delaying also “gives us more opportunity for increased research and advancements in how we deal with T1D. We don’t know what the future will look like. Look at how the last 20 years have changed how we treat diabetes. It’s huge! In Richard’s lifetime, I think we’ll see advancements, and we’re giving him extra time for those things to be in place.”
Joanna says, “I see the benefits in the long term. We have other family members with type 2 diabetes, and they have so many health problems because of it. My grandfather had type 1, and he had a toe amputated. I know that the longer that you can put off diabetes, the better it is for your body in the long term.”
Life After Tzield
Richard continues to live the life of a normal boy. “Truthfully, nothing has changed much,” says Joanna. “We have a little piece of mind before we have to worry about full-blown type 1.”
The family continues to monitor Richard’s blood sugar. He wears a Dexcom — not every single day, but for 10-day sessions once every three months. He gets his A1C checked regularly, and his parents will administer a fingerstick blood glucose measurement every once in a while, especially when he is ill. All of this will help make sure that whenever Richard’s condition progresses, his family and care team will be aware of it. Richard should be able to start using insulin as soon as his doctor thinks it wise — and long before he is at any risk of diabetic ketoacidosis (DKA).
“Yes, we can live with type 1, we already have obviously. But if we can put it off for Richard, it will be so much better for him,” says Joanna.
Edwards, Richard’s family clinician, hopes that screening for type 1 diabetes antibodies becomes far more common: “Anybody who has a family member with type 1 diabetes, especially a first-degree family member, they need to be screened. There’s no doubt about that. I think we’ll see more recommendations coming out, even for members of the general population.”
“This is an exciting time for us. We are really pleased that we’re able to offer this service. I hope we’ll see many families benefit from it in the future.”
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