A later diagnosis and a day less with type 1 diabetes

DRWF-funded researchers Professor Kathleen Gillespie and Professor Susan Wong CBE, who chaired the session, with Claire Levy of DRWF

Kimber Simmons, Associate Professor, Pediatrics-Barbara Davis Center, University of Colorado Medicine, is a physician scientist studying the genetic, metabolic and immunologic diversity of autoimmune conditions. Professor Simmons discusses the impact of delaying a diagnosis of type 1 diabetes.

Professor Simmons: “A lot of the community referrals often include a history of misdiagnosis.

“I want you to hear the story from one of our patients. This is a 25-year-old entrepreneur who runs HbA1c tests at home on his own, but he has a history of hypothyroidism, so he does have some history of autoimmunity, and he has a cousin with type 1 diabetes.

“He said: There is some research online. I figured out that it is a marker for diabetes, and that is what prompted me to go to the primary care physician at the primary care office. They took the HbA1c result and diagnosed with type 2 diabetes and put me on Metformin and told me to come back in 30 days to have another HbA1c test taken. The second test at the primary care doctor showed results came down quite a bit. My doctor said you are all good, come back in six months. Stay on the Metformin twice a day. When I did my research on diabetes after this result, I found that type 2 diabetes was easier to manage. I was thinking, this is good, I guess. But I was also thinking it doesn't make sense because type 2 diabetes is normally way later in life, and sometimes people who are not as fit as I am. Originally I did not question my doctor when the HbA1c result was coming down, but when I went on a cruise I was eating tons of carbs, drinking sweet drinks all the time, and about halfway through the day of eating and drinking, I would start to feel really fatigued and just sick to my stomach. When I came back from that cruise, I decided to run another HbA1c test at home and at that point I went to a specialist.

“When people talk about what was their motivator for screening, the biggest motivator was they wanted to have a chance to have more time before they had diabetes. So, having a treatment that can delay type 1 diabetes is a game changer. If you talk to people who have diabetes, one day without it is meaningful.

“After we identify somebody, we need to determine what metabolic stage they are at. We opened our early type 1 diabetes clinic in December of 2022. We have had more than 100 referrals and 100 new patients, and we have had 67 patients that have completed full metabolic staging, meaning that we have oral glucose tolerance test and all of the other things that are mentioned. More than half the patients are paediatric, but we also had a number of adult patients.

“Our oldest evaluated patient was aged 68. A lot of adults are very interested in getting more information about their health. We want to have the full picture to make the best clinical decision for them and to be able to offer them all of their treatment options.

“When we looked at the first 36 patients that we did a full metabolic evaluation on, depending on what tool you are using, you get a very different stage. You have to use your clinical decision-making about what that patient needs.

“To date, out of our 44 patients who are clinically in stage two, only four of them have met stage two criteria by all three of these methods. Once we have a patient that is identified in stage two, we want to develop a treatment plan.

“I'm going to focus now on the treatment with teplizumab (to delay type 1 diabetes). If we talk about why people decide to make that treatment decision, it is because they want more time without type 1 diabetes. This is a big factor for families and something that we should all recognise when talking with them.

“For our case study patient, he also had that as a motivator. He was needle phobic. He did not want to have to take insulin for as long as possible. We prescribed teplizumab to him based on his HbA1c with continuous glucose monitoring (CGM) values of supporting evidence.

“Overall, this medication seems to be having a good effect for most people. Post-infusion course, we have had two patients who have developed stage three.

“In summary, care of people with beta cell autoimmunity and without hypoglycaemia should be part of standard endocrinology training and practice, and this includes the ability to oversee immunotherapeutic treatments. This is a major shift in care. It is something that is very exciting to be able to change when we can treat people and make lives better is an amazing accomplishment in our field.

“This is the first clinically approved treatment to induce remission of beta cell autoimmunity, and it represents the first of what we hope to be. Many approaches and multi-site registries will be really important for understanding the real-world impact of not only teplizumab, but hopefully future clinical treatments.”

Read our other reports:

Delaying the need for insulin in people with pre-type 1 diabetes

Preparing for early detection and treatment of type 1 diabetes

Managing screen-detected type 1 diabetes in young people