Navigating the Burden of Diabetes: Screening Recommendations and Insights from Real-Life Experiences

The following transcript has been lightly edited for clarity and style.

Dr. Kent Stoneking: I was diagnosed at age 11. And I grew up in another part of the country, but I had a great pediatric endocrinologist who told, not me, but my parents, and I had the privilege of overhearing it, "Hey, it's going to be OK. Let Kent play sports. Let Kent go to camp. Let him be a normal kid as he's learning to navigate his diabetes because the more of a normal life he can lead, the more connected he'll be to his peer group, which is positive from a psychosocial, emotional standpoint. But also, the better prepared he'll be for the responsibilities of adulthood because he's taken on this other responsibility." And really, the underlying message was let him own it. And my parents did that. In fact, that first few years was difficult. They were very supportive. But they would ask me, they said, "What's your blood sugar?" They expected me to take it. They weren't taking it. Mom cooked the food. I ate the food. She didn't browbeat me for eating too much of the food. I was a growing kid. But I did what normal kids do just while taking insulin, and being in the DCCT really helped put up some important guardrails.

But ten years after my diagnosis- I have two younger brothers. My youngest brother was diagnosed. I was 11. He was 13 when he was diagnosed. I ended up diagnosing him, actually. We were on a weekend away with another family, doing some water skiing, having some fun. And he was just miserable in the bathroom, drinking water incessantly. Had no energy. And I happened to pass him in the hallway and got a whiff of acetone. And I said, "OK. I think we know what's going on. Give me your finger, buddy. Let's do your blood glucose." 438 was his blood glucose. And my parents were like, oh, we have another one. Because by then, they had acclimated to what needed to happen. And that positive messaging from the medical team right up front was so impactful.

The messaging from the medical community. I want our primary care colleagues here tonight to hear this. The messaging around first diagnosis is so vital. Telling patients, telling families that by accessing the right resources, getting with a good endocrinologist, getting with peers who have diabetes. Dr. Latif and our team, we're huge supporters of the diabetes camp in our area. Getting kids together to let them know they're not the only one, and to give them the tools and the information to be successful, makes such a difference and makes a life changing impact on these young patients.

Dr. Jennifer Goldman: So Marianne, hearing what Kent just said, and let's just say he happens to be a patient of yours instead, what do you- what recommendations are you going to make for screening of- you just heard he has diabetes and his brother has diabetes. So who else gets screened?

Marianne Briggs: His children.

Dr. Jennifer Goldman: So, the risk in children and adolescents is quite significant.

Marianne Briggs: When it's a first degree relative, 8 to 15% risk. I mean, it's- I even had a patient today who is a type 1, her mother was a type 1, both of her children are type 1. One has the positive antibodies, but is still- blood sugars are still fine so we started having the conversation today about should we- We need to intervene now before you have another child having to go through all of this and readjust your life.

Dr. Jennifer Goldman: So I wonder what it would've meant for your brother and your family, Kent, had there been an opportunity to delay the onset?

Dr. Kent Stoneking: Oh, that would've been huge.

Dr. Jennifer Goldman: Right? So, Dr. Latif, you did talk about the stages of type 1 diabetes clearly. But let's reiterate a little bit because Marianne, you were just talking about that you found someone with antibodies. So where do they fit in these stages of type 1 diabetes? That patient you saw today and that family, how do you differentiate between these? Using that example you just brought up?

Marianne Briggs: So that child, he would be in stage one because we know he has- I believe he has four positive antibodies. But you have to have two or more antibodies present. So it means his body is starting to attack his beta cells, but his blood sugars are normal. And since his family has so many people in the family with diabetes, they have all the access to checking his blood sugar frequently, they're looking for all the signs. So right now his blood sugars are still normal. He doesn't need insulin, he doesn't need any medicine for the diabetes, but he would have a diagnosis of type 1 diabetes.

Dr. Jennifer Goldman: And when are you going to check him again? How often would you check him to see if he is going to convert into stage 2?

Marianne Briggs: We usually do a glucose tolerance test every six months. That's just a really good way to get a full assessment of what's going on with them.

Dr. Jennifer Goldman: Now, did you have a conversation with that family about delaying the onset with teplizumab if he happened to convert? He's likely to convert, right?

Marianne Briggs: Right. It's a matter of time. So I was talking, I talked with his mom today about it and just said, it's a 14 day process, but if we could push off delaying needing insulin and the complications of diabetes, even if it's just for two years, to me if it was my child, it'd be worth it.

Dr. Jennifer Goldman: Yeah, maybe that buys some time for, maybe they're going to do another study and they'll find out if you reinfuse or there'll be another drug.

Marianne Briggs: I mean, what if they could get an infusion every year for the rest of his life and he never needs anything? That's huge.

Dr. Jennifer Goldman: When should we start checking kids?

Marianne Briggs: I would like to check them when they're born. But maybe even starting at like age two and start seeing what's going on.

Dr. Jennifer Goldman: Two and six, I think.

Dr. Jennifer Goldman: So I think I read recently that the likelihood of onset of type 1 by age 15 if you have autoantibodies at two and six, is about 79%. So what you are suggesting makes perfect sense because now we have an opportunity. We have an opportunity we never had before. So thank you for that.