Shireen Abdullah- 00:03 

Podcasting from Dallas, Texas, I am Shireen and this is the Yumlish Podcast. Yumlish is working to empower you to take charge of your health through diet and exercise and reduce the risk of chronic conditions like type 2 diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions with you each week.

Shireen Abdullah- 00:37 

Julianne Lally, Doctorate of Medical Science, Masters of Health Science, and Physician Assistant, is Associate Director of Medical Affairs at Breakthrough T1D. She focuses primarily on screening and early detection of type 1 diabetes, leads the Early Detection Pilot Program, and facilitates healthcare professional education efforts.

Shireen Abdullah- 00:57 

Jullian’s professional interest in type 1 diabetes stems directly from her own personal diagnosis at age 12. Welcome, Jillian. 

Julianne Lally- 01:04

Thank you. Thanks for having me.

Shireen Abdullah- 01:07

Such a pleasure having you on. So first things first, Jillian, I want to understand a little bit more about your background and sort of why you’re doing what you’re doing. In your intro, I just mentioned kind of your own journey. If you could tell us a little bit more about what inspired this work, what really led you to focus on type 1 diabetes so closely and specifically in early screening and detection, which is what we’ll get into next.

Julianne Lally- 01:30 

Perfect. Absolutely. So as you properly introduced, I was diagnosed when I was 12 years old, completely out of the blue, no family history, just got that diagnosis pretty excitingly, you know, traditional hospital. And at that point, as a 12 year old, you’re kind of thinking about what do you want to do when you grow up, right? I was never thinking anything medical. When I was a little kiddo, we used to joke that I wanted to be a bird, then it was a vet, then it was a

Julianne Lally- 01:54 

fashion designer, but my own personal diagnosis really thrust my decision to go into healthcare. I can pretty confidently say that without that happening to me, I wouldn’t be where I am today. So that really inspired my work. I decided to become a physician assistant because unfortunately I had some experiences as a teenager where I really wasn’t comfortable with the way that the physicians or the healthcare teammates spoke to me. They always spoke to my mom, right? For me, it was going back to school to be more of a patient voice,

Julianne Lally- 02:22 

to speak to patients as they want to be spoken to, really not forget that this is a full picture, a full person diagnosis. And that’s really what inspired that work. Of course, through screening and early detection, when I was diagnosed, wasn’t a thing. Nobody told my parents like, hey, go get screened, get her brother screened.

 

Julianne Lally- 02:37 

So for me, seeing this kind of new, not to be cheesy, but breakthrough in the way people can be diagnosed was really passionate for me to then use my career to kind of hop on board with something that I’m so personally and then professionally involved in to really like build my career based off of that.

Shireen Abdullah- 02:53

 I absolutely love the lived experience that really propels you and sort of charters your path forward. I want to get into the screening element in just a second here. But before we do, Julianne, I want to talk a little bit more about this piece around early detection. Why is that?

Julianne Lally- 03:12

Particularly critical for type 1 diabetes? With early detection, we know that previously people’s diagnosis like mine was more of a crash landing in type 1 diabetes. Before you get out of the hospital, you have to learn everything to safely go home. And we know through years of or decades really of research that we can find type 1 diabetes early and that really first and foremost keeps people safe and healthy and less critical in that time of diagnosis.

Julianne Lally- 03:33 

So I think it’s really beautiful to think about a future where people are diagnosed in their doctor’s office and not in the hospital or in the ICU needing to drink everything from a fire hose in order to be, you know, safely to go home. So first and foremost, when we think about screening and early detection, it’s keeping people safe. There is a life-threatening condition that about 50, 50% of people being diagnosed with type 1 diabetes are in at the time of that diagnosis. So we know through proper screening, getting screened, having this knowledge that this could be coming or is coming,

Julianne Lally- 04:02 

will keep people out of that life-threatening condition. What’s also really cool, very different from when I was diagnosed, is that there’s actually a lot of research being done to slow down this type 1 process, hopefully one day stop it, and keep the insulin-producing cells in the body healthy. Again, wasn’t an option when I was diagnosed. Nobody said, here are some clinical trials that Julianne’s now eligible for. So if we can find this early, we can participate in research, we can receive therapies that can one day hopefully make this a condition of the past.

Shireen Abdullah- 04:30 

Wow, remarkable. I now want to get into some of the earliest markers. What are those early markers that clinicians, families should be aware of with type 1 diabetes? 

Julianna Lally- 4:40

So when we think about earliest markers in screening, there’s four autoantibodies that we can look for in an individual’s blood.

Julianne Lally- 04:47 

Now, we have to remember that type 1 diabetes is an autoimmune condition, so different than type 2 diabetes, where we can actually test for these autoimmune markers in the blood that can tell us, OK, this process has started. So like I said, I was diagnosed when I was 12. I don’t know how long I had autoantibodies in my system, but it was probably for some time, months, if not years. So we can find those early. And that’s very different than when you think about the earliest markers, like signs and symptoms of type 1 diabetes.

Julianne Lally- 05:15 

Once you have the signs and symptoms of type 1 diabetes, which I’ll get into, you pretty much already have type 1. So that’s a very different type of diagnosis than early detection and finding it early. But overall, the signs and symptoms of type 1 diabetes that you would be more a little bit commonly thinking of is extreme thirst, frequent urination, weight loss, increased hunger, dry mouth. So there’s many symptoms that…

Julianne Lally- 05:37 

can look like other things, right? Oh, a lot of kids are diagnosed during puberty. Oh, they’re losing weight because it’s puberty. Or they’re thirsty because they’re more active. So these are easy symptoms for us to overlook. So it’s important to know them, but also important to know that you can find it earlier before those symptoms develop.

Shireen Abdullah- 05:52

Super helpful. When we’re talking about these signs, I mean, like you said, right, they can often be overlooked. What are the types of things to sort of keep in mind? If a parent is listening to this today, what are the types of things they should really look for? Like, this is not something that’s usual. This is something that you need to go to talk to your doctor or go get screened for.

Julianne Lally- 06:09 

Yeah, so like the symptoms that I said, but also more severe symptoms that we think of like nausea, vomiting, those can be signs of that life-threatening DKA or diabetic ketoacidosis that a parent might think of as a stomach bug. And if you take them to the pediatrician or even your primary care or family health doctor, they might think, oh, it’s a stomach bug. It’s pretty typical. Kids throw up all the time, right? So these are really easy to be overlooked. But as a parent…

Julianne Lally- 06:32 

if you’re putting the pieces together and thinking drinking more urinating more losing weight this is when you have to start advocating for yourself because we do know that kids are not it’s not caught right away right people are sent home with maybe just flu or strap or just stomach bug diagnoses once that bad process of dk starts it goes pretty quick so they get very sick much quicker than the first you know couple months of that so i really think just advocating for your patients

Julianne Lally- 06:58

 It can be as easy as a urine test to look for glucose in the urine and also as easy as a finger stick to look for that blood sugar. So those tests aren’t expensive. They’re not complicated, right? And it could be something as easy as that to get that diagnosis in the clinic rather than waiting for, you know, that really life-threatening diagnosis.

Shireen Abdullah: 07:14 

You just mentioned a second ago about the autoantibody screening. Can you walk us through how this screening works and what it actually reveals about a person’s risk of developing type 1 diabetes? Tell us a little bit more about that.

Julianne Lally- 07:29

Absolutely. So with screening, it’s generally a two-step blood test. So the first one we call like a screening test, which really looks to see if there’s markers in the blood. And then we need a second test, which we tend to refer to as a confirmatory test to really confirm that persistency. So we do a screen, and then if that shows evidence that there are autoantibodies, we would do another test to confirm before we make any type of diagnosis.

Julianne Lally- 07:52 

I mentioned we have four autoantibodies. So really thinking about risk and developing type 1 depends on how many autoantibodies you have. So if we’re measuring four and you only have one persistently, that puts you in the at-risk category. That tells us something’s going on. We think eventually you could develop type 1 diabetes, but at that point it’s not guaranteed. The risk of progression is not guaranteed.

Julianne Lally- 08:14 

100%, and that autoantibody could disappear. Maybe that person’s autoimmune system was stressed for some reason, but may not ultimately have a type 1 diagnosis. Now, if you have two or more autoantibodies confirmed on two or more tests, that’s when we say, okay, this looks like type 1 diabetes, and we can then quantify the rates of progression. Once you have, that’s called stage 1 type 1 diabetes.

Julianne Lally- 08:37 

Not to get too into the weeds, but that’s when we can say, okay, we’re staging this because two or more autoantibodies. We can confidently say that that individual is going to develop type 1 diabetes in their lifetime. We don’t know when. We can’t like quantify that time, how long it’ll take. But we know with decades of research, it’s close to 100% just because it’s longitudinal and we don’t have an entire lifetime of data yet on people. But it is close to 100% that that person will develop type 1.

Shireen Abdullah- 09:02 

How interesting. And then how accessible are these tools to families, primary care providers? Also help us understand what screening tools, like are there a number of them? Is there one particular test? Help us understand that a little bit. 

Julianne Lally- 09:17

Yeah. So in theory, every person should be able to go to their doctor’s office and say, can you screen me for type 1 diabetes?

Julianne Lally- 09:23 

There are blood tests that are available pretty much broadly across the United States. Now, the people that are advocating for themselves probably have a family history of type 1 diabetes and want to be screened, right? The American Diabetes Association, the Standards of Care, does say, does recommend that people with a family history of type 1 should then be screened themselves for type 1 diabetes. The importance behind that, just to throw in a quick statistic, is something that has a family history of type 1. So, like, say I have type 1. My brother has a 15 times higher chance of developing type 1 diabetes than the general population.

Julianne Lally- 09:53 

So they have a much higher risk for developing type 1, but again, it’s only about 1 in 20, so they’re not guaranteed to have it themselves.

Julianne Lally- 10:00 

Anybody should be able to go to their doctor’s office and say, I want to be screened for type one. Now that sounds easy. This is a new topic, right? So all the healthcare professionals and the doctors, the PAs, the nurse practitioners, they may not know what to order or order, you know, all four of those auto antibodies. So at Breakthrough T1D, we’re trying to make resources or we have developed resources, almost screening guides for the person and also the healthcare team to know how to respond to these individuals’ requests to make sure that they’re doing it right and getting everything done, you know, the way that they should.

Julianne Lally- 10:26 

I did just want to throw in that we’re talking that’s like clinical screening, and screening’s been going on for decades in research, and there are research pathways available for people to screen completely for free. There’s one called TrialNet, and that is a program out of Colorado that…

Julianne Lally- 10:42 

screens for people with a family history. So if you’re in a certain age group, you have a family member, either first or second degree with type one diabetes, you’d be eligible to screen for free through that program. They have multiple sites around the country. And there’s also another program also based out of Denver, which is called ASK, so autoimmunity screening in kids that will screen anybody in the general population, regardless of family history, ages one and up for those autoantibodies as well.

Julianne Lally- 11:05 

also free. And we have decades of evidence from those studies, and those are considered the gold standard labs at this time.

Shireen Abdullah- 11:12 

Love it. What advancements or innovation in early detection are you most excited about that’s sort of coming? 

Julianne Lally- 11:20

Yeah, I almost alluded to the concept that we’re not going to have crash landing diabetes diagnoses anymore for type one. That would be ideally a thing of the past, right? We’re diagnosed in our doctor’s office. We learn about insulin. We learn about carbs. We may not know when it’s going to happen, but at least when it does happen, we’re prepared. Also, what’s really exciting, I mentioned there is a lot of research going on.

Julianne Lally- 11:42 

And right now we have one FDA-approved drug, diplizumab, to delay the onset of type 1 diabetes. There’s 15 studies right now in new diagnosis that are looking to preserve the insulin-producing cells, keep people healthy at diagnosis, really keep them healthier during that first time period of that transition. So I think there’s a lot of research being done.

Julianne Lally- 12:02 

to make type 1 diabetes a little bit more controlled, should we say, at the start. And there’s also being research done in these early stages, like I said, stop the diagnosis, slow it down, hopefully maybe one day even reverse any damage. And that’s, I think, super exciting. There’s so much going on here. Like I said, this was not available 24 years ago when I was diagnosed. So something that we should all really learn a little bit more about.

Shireen Abdullah- 12:26

That’s fantastic. If I had you, Julianne, think even further out. So what do you hope to see perhaps change in the next five to 10 years regarding type 2 diabetes screening in particular? 

Julianne Lally- 12:38

For type 1 diabetes screening, I would say in the next five to 10 years, I would hope screening is available for everyone, not

Julianne Lally- 12:44 

people needing to advocate for themselves and, you know, asking their doctor to be screened. I really hope that in five to 10 years, all kids are screened, whether they have a family history or not. Maybe even then one day all adults are screened because adults can be diagnosed with type 1 diabetes as well. And in fact, another statistic for you is that more than half of the diagnoses of people with type 1 diabetes are in adults.

Julianne Lally- 13:04 

So that’s kind of part of the reason that Breakthrough T1D changed our name. We used to be JDRF, and the J in JDRF stood for juvenile. But we know adults get type 1 diabetes too. People with type 1 diabetes like me grow up to be adults. The organization is here for everybody, but also making sure that we’re supportive that not only kids get type 1.

Julianne Lally- 13:22 

So really excited that there is a lot of work being done in the advocacy space to have type 1 diabetes screening, kind of part of the routine. So the goal in, I would say, hopefully five to 10 years would be general population screening for everyone. That would be a great thing to see.

Shireen Abdullah- 13:35 

That’s awesome. If you had to tell us, what is perhaps one misconception about type 1 diabetes that you wish just more people broadly understood, especially in the context of, again, this early detection? 

Julianne Lally- 13:47

I’ll probably answer that in two ways. I think the biggest misconception that I would like people to know and really understand and take away from this is that you can find type 1 diabetes before you have symptoms. 

Julianne Lally- 13:56 

We often hear like, why would I get screened? Or I’ll get my kids screened if they develop symptoms or if I’m concerned. But at that point, they already have type 1 diabetes if you have symptoms. It’s not really considered early detection at that point. So I want people to know that this can be found before we have any concerns.

Julianne Lally- 14:12 

And then also when you think about type 1 diabetes in general, a misconception is that a lot of us tend to hide it, right? And may not be able to see my technology on my arm or my pump on my hip. People with type 1 diabetes are making so many decisions every day. I really just want people to know that even though we kind of think of it as almost like an invisible condition, it is something that is serious and something that we work really hard to take care of ourselves. And it’s very different in every body. So don’t just assume every person with type 1 diabetes is going to

Julianne Lally- 14:42

 the same, that they have the same course or the same care, the same treatment. We’re all different and it’s okay. We’re all in this together. 

Shireen Abdullah- 14:49

I really appreciate that perspective, Julianne, and also sort of like looking ahead. I do want to loop back to the accessibility question for just a quick second for our listeners here, which is around a lot of the reasons where things get a bit prohibitive is related to cost, is related to insurance and access and coverage and things like that. What are the types of things perhaps, you know, looped in with this

Shireen Abdullah- 15:10 

question around looking ahead. What are the types of things that need to be done, perhaps more from an advocacy standpoint, to make sure that there is equitable access to this type of screening?

Julianne Lally- 15:18

 Sure. So right now, if you were to ask your doctor to screen, because the ADA recommends screening for family members, in theory, it should be covered by insurance, but we don’t see that 100% of the time. What we also know is if you don’t have a documented family history of type 1 diabetes,

Julianne Lally- 15:34 

We don’t know if your insurance is going to cover it at all. We also know that autoantibodies cost very different depending on where you’re getting them done, what the costs are at your facility to get those autoantibodies done. So there’s a lot of work actually being done now in the advocacy space for those barriers to be removed. So essentially advocating for type 1 diabetes screening to be covered by all insurance plans because of this increased risk. I mentioned before that the risk of type 1 diabetes in a family member is 1 in 20, but the risk in the general population in the United States isn’t null. It’s 1 in 300.

Julianne Lally- 16:04

 So we know that even though we, if we screen people with a family history, we’re gonna catch a lot of people, but we’re not gonna catch everyone. And another stat on that is about 90% of people don’t have a family history of diagnosis. So until we have available low cost or no cost general population screening, we’re not gonna be able to capture everyone before that DKA or before that crash landing ultimately. And like I said, there’s a lot of work being done here in that space, but the goal would to be have to remove that cost barrier and have this available to everyone.

Julianne Lally- 16:32 

That’s why the research programs, TrialNet and ASK, are great because they are at no cost. The experts, the researchers that are working in that space can really guide them through those next steps and, you know, give them top-notch care. 

 

Shireen Abdullah- 16:43

Jillian, can’t thank you enough for coming on this episode here today. We always like to end with this question, which is, how can our listeners connect with you, learn more about your work, and just be apprised of everything going on in this space regarding screening and early detection?

Julianne Lally- 16:56 

Sure. I’ll give a little plug for our Breakthrough T1D screening website, breakthrought1d.org slash early detection. So think early detection of type 1 diabetes. And that’s where you’ll find all the resources we talked about today, things you can download, print out, bring to your doctor about screening. And then also you can find me on LinkedIn.

Julianne Lally- 17:13

It’s just Julianne Lally. Should be pretty easy to find. And then if you have any personal questions or just questions related to how can I screen in clinic or what do I need to know before my child gets screened, feel free to reach out to me personally, jlally at breakthrought1d.org. I’m happy to field all these questions, get you in touch maybe with people that have screened. If you’re a worried parent, maybe you’ve screened or thinking about it, we can connect you to other parents that have screened or maybe making the same decisions as you. So there for support, there for clinical guidance, kind of you name it, I can connect you to it.

Shireen Abdullah- 17:42 

All right. Jillian, it’s been an absolute pleasure. Thank you so much for sharing all of this information with us. To our listeners, thank you for tuning in to another episode of the Yumlish podcast. If you were listening here today, head over to our social media. It’s going to be at Yumlish on Facebook, on Instagram, and find this podcast post. Comment below to tell us if you have a family history of autoimmune conditions, type 1 diabetes in particular. Have you ever considered screening for type 1 diabetes? Why or

Shireen Abdullah- 18:10 

why not? Again, let’s continue the conversation there. We’re going to go to at Yumlish on Facebook, Instagram, and I can comment below for this question, which is, if you have a family history of autoimmune conditions, type 1 diabetes in particular, have you considered screening for type 1 diabetes? And again, why or why not? We’ll continue the conversation there. Jillian, thank you so much again. Absolutely. Thanks for having me.

 

Shireen Abdullah- 18:32 

Thank you for listening to the Yumlish podcast. Make sure to follow us on social media at Yumlish underscore on Instagram and Twitter and at Yumlish on Facebook and LinkedIn for tips about managing your diabetes and other chronic conditions and to chat and connect with us about your journey and perspective.

Shireen Abdullah- 18:52 

You can also visit our website, yumlish.com, for more recipes, advice, and to get involved with all of the exciting opportunities Yumlish has to offer. If you like this week’s show, make sure to subscribe so you can hear more from us every time we post. Thank you again, and we’ll see you next time. Remember, your health always comes first. Stay well.

Connect with Yumlish! Yumlish Website: Yumlish Yumlish on Instagram: @yumlish_ Yumlish on Facebook: Yumlish Yumlish on Twitter: @yumlish_ Yumlish on LinkedIn: Yumlish Connect with Julianne Lally! Website URL: Type 1 Diabetes Screening & Early Detection Instagram URL: @BreakthroughT1D Facebook URL: Breakthrough T1D Twitter(X) URL: @BreakthroughT1D LinkedIn URL: linkedin.com/in/juliannemlally/