From Uncertainty to Empowerment: Knowing Early Can Buy Valuable Time
This is part three of a series on type 1 diabetes screening. Read or watch part one and part two.
Key takeaways:
- Screening can buy more time for people who are diagnosed with stage 1 or stage 2 type 1 diabetes to process the information.
- A two-week course of Tzield infusions can slow disease progression for someone with stage 2 type 1 diabetes.
- Regardless of their current stage, researchers hope that more people with type 1 diabetes will participate in clinical trials for new treatments.
In the not-too-distant past, diagnosing someone with type 1 diabetes came down to one obvious criterion: “You need insulin,” said Dr. Natalie Bellini, an endocrine nurse practitioner at the University Hospitals, Case Western Reserve. “There was only ‘on’ or ‘off.’”
However, screening for antibodies has upended that paradigm. Now, healthcare providers know more about how type 1 diabetes progresses, and they have the tools to diagnose a person before the symptoms of stage 3 type 1 diabetes begin and insulin injections become necessary. Advanced knowledge not only offers time to prepare but also cuts down on the risk that someone will experience life-threatening symptoms like severe weight loss, dehydration, and diabetic ketoacidosis (DKA).
Through a series of three discussions with leading experts on diabetes care, Bellini and Dr. Diana Isaacs, director of education and training in Diabetes Technology at the Cleveland Clinic, explored the current state of type 1 screening, monitoring, and treatment.
In the first two, they focused on dispelling uncertainty around the different stages of type 1 diabetes and the process of screening and monitoring. In their final session, they sought to empower people by relaying all the opportunities that early detection can afford, including advanced preparation, early treatment options, and clinical trials that could lead to improved care. This session featured the following diabetes experts:
- Dr. Jennifer Goldman, director of cardiometabolic services at Well Life, Massachusetts College of Pharmacy and Health Sciences
- Anastasia Albanese-O’Neill, vice president of medical affairs at Breakthrough T1D (formerly known as JDRF)
- Taylor Stephens, pediatric psychologist at the Cleveland Clinic
- Dr. Kashif A. Latif, endocrinologist at the AM Diabetes & Endocrinology Center
A soft landing
Type 1 diabetes is a progressive autoimmune disorder that can be broken down into three stages.
A person in stage 1 has at least two autoantibodies that direct their immune system to attack the insulin-producing beta cells of their pancreas, but most of the beta cells are still alive and well. In stage 2, the immune system has eliminated enough beta cells that the person’s blood sugar is slightly elevated. And finally, in stage 3, the person’s blood sugar has become high enough to cause symptoms, and it usually requires insulin treatment.
If a person is diagnosed after they’ve developed symptoms from stage 3, they don’t really have time to process the information. Immediately, they have to learn how to take insulin, how to monitor their blood sugar, and how to avoid hypoglycemia. “It feels like you’re putting a firehose in their mouth,” Bellini said.
But if a person learns that they have type 1 diabetes while they are still in stage 1 or stage 2, then they can adjust to their new normal more gradually. This extra time can be especially valuable for newly diagnosed children.
“It creates a lot of opportunity to customize treatment approaches to address each individual and family,” Stephens said.
For instance, if a child is scared of needles, then mental health specialists can come up with a plan for lessening that fear before regular injections become necessary. On the other hand, if a family is struggling with counting carbs, then nutrition experts can focus more attention on that.
Knowing before diabetes becomes a crisis also affords more time for emotional processing – both for the individual who’s been diagnosed and for their loved ones. That means children can tell their friends on their own terms, parents can take time to cope with the diagnosis, and siblings can process changes in their family dynamics.
Of course, all of this extra time can introduce new challenges. For instance, young children who have been diagnosed with an early stage of type 1 diabetes may not understand why they have to keep thinking about something that doesn’t seem to be making them sick yet.
“Developmentally, they aren’t able to see why I’m at point A and we’re trying to prevent the onset of point Z,” said Stephens. “One of the most important things is being transparent and honest with them to the degree that we can.”
Although there will never be a one-size-fits-all strategy for handling these conversations, Stephens put together a reading list with a range of options for both people who have been diagnosed and their loved ones.
She also recommended seeking help from child life and behavioral health specialists. As more diagnoses occur at earlier stages and more of these conversations take place, the resources and expertise that parents can draw on will continue to improve.
For anyone in the U.S. who is unsure how to proceed after an early-stage diagnosis, Ask the Experts – a program run by the Barbara Davis Center in Colorado – offers education, guidance, and access to early treatment interventions.
Tzield: A chance to delay symptoms
Screening opens up the opportunity to try a treatment that may slow the progression of type 1 diabetes and potentially improve a person’s long-term health prospects. In 2022, the FDA approved Tzield (teplizumab) for people who have stage 2 type 1 diabetes.
Goldman explained that the medication resets the body’s immune system, reducing the aggressiveness of the T cells responsible for targeting the pancreas’s beta cells and delaying the onset of stage 3 by an average of two years.
“Tzield doesn’t cure or stop type 1 diabetes, but it buys valuable time. It delays the need for insulin,” she said.
Albanese-O’Neill added that it also appears to help people preserve a small number of their beta cells as the condition progresses. “The ability to produce even a little bit of your own insulin has been associated with fewer severe hypoglycemic events,” she said.
Furthermore, she said that retaining some beta cells had been linked to more time in range and a reduced risk for diabetes-related complications.
Evidence suggests that Tzield may even help people who have already progressed to stage 3; the FDA has fast-tracked its review to determine whether it will expand the treatment’s approval to include this indication as well.
Tzield is delivered via a series of intravenous infusions administered over 14 consecutive days. Prior to treatment, healthcare providers will check for active infections and make recommendations for vaccines that might be important while a person’s immune system adjusts to the medication.
Once everything is in place, the infusions take 30 to 60 minutes and are typically administered in an outpatient clinic. Stephens recommended that parents bring fun distractions like coloring supplies, books, and tablets with videos and music to help their children pass the time.
It’s important that these infusions – especially the first few – occur in a clinic with experienced healthcare providers who can monitor for potential side effects, such as rash, fatigue, and flu-like symptoms. However, Goldman said that most people tolerate the treatment well and can even go about their normal activities afterwards.
At the same time, Goldman stressed that Tzield is a 14-day commitment, and people will need to plan around school, work, and vacations.
Latif also cautioned that, because Tzield works by modulating the immune system, a person who is actively receiving the infusions may need to limit their exposure to situations that could give them an infection. In particular, parents will have to think about whether their children may want to spend time with their friends and play outside.
“You want to make sure that you put some kind of boundaries there to make sure they are not in any kind of danger,” he said.
All of these considerations may sound overwhelming at first, but Isaacs recommended viewing it as a 14-day investment. “It’s a one-and-done,” she said. Ultimately, those two weeks can pay off in months or even years of time without having to worry about insulin treatment.
According to Latif, health insurance companies have come to see the value in this investment as well. The payment process took a long time for the first couple of patients his clinic gave Tzield to. “But the last patient we did just a couple of weeks ago, it went very smoothly,” he said.
For more information about payments and logistics, people can consult the TZIELD COMPASS program.
Clinical trials: Advancing future treatments
Although Tzield can buy valuable time for many people with type 1 diabetes, it does not work the same way for everyone. Individuals’ responses can vary considerably, with some people delaying symptoms for less than a year and others delaying symptoms for as many as 10 years.
More research is needed to understand this variability and to come up with new treatment strategies for people Tzield does not help. Albanese-O’Neill stressed that this research can only happen if people agree to participate in it.
“We need in type 1 diabetes a culture of clinical trial participation,” she said.
In particular, she asked people who have been diagnosed with stage 3 within the past three to six months to consider enrolling in one of the clinical trials listed on Breakthrough T1D’s website. But she pointed out that there are many other trials for people who have had type 1 diabetes for longer periods of time or who feel too stressed to participate in a trial during that timeframe.
Not only does participation help advance knowledge for the community as a whole, but it can also be personally rewarding.
“I consider it an upgrade to first-class because you get to interact with the physicians and nurses and other healthcare professionals who are at the cutting edge of their field,” Albanese-O’Neill said.
At the end of the day, more screening will open the door for more people to participate in clinical trials across the continuum of type 1 diabetes stages, facilitating new breakthroughs in healthcare for the condition.
The bottom line
Type 1 diabetes is a progressive disease. By screening for it and detecting it before treatment becomes necessary, people with the condition can buy themselves more time to process their diagnosis and prepare for their new normal.
For those who are diagnosed before they reach stage 3, Tzield infusions – which can delay progression to stage 3 and the symptoms that may occur then – are already available. Researchers continue to recruit participants for clinical trials testing new treatments that can help more people, slow down disease advancement, and potentially even halt the progression of type 1 diabetes altogether.
Learn more about type 1 diabetes screening and treatment here: