#433 Diabetes TrialNet

January 27, 2021Scott Benner

Carla Greenbaum, M.D. Returns

Carla Greenbaum, M.D., chair of TrialNet returns to the podcast to discuss research and type 1 diabetes risk screening. Get your FREE screening kit here.

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Scott Benner 0:00
Hello friends and welcome to Episode 433 of the Juicebox Podcast. Today's show is sponsored by Omni pod makers of the Omni pod tubeless insulin pump, and they'd be happy to send you a free no obligation demo, all you have to do to get it is go to my Omni pod.com Ford slash juice box. And if you are looking for the most amazing continuous glucose monitor that I've ever seen, you're looking for the Dexcom g six continuous glucose monitor. And you can learn more about it@dexcom.com forward slash juice box.

Today we're going to be hearing from a returning guest, Dr. Karla Greenbaum, who happens to be running things over there at diabetes trial net. I really enjoy talking to Carl, I didn't realize how much I'd missed her until she got back on she's a real easy way about her. And I find it enjoyable to speak with her. So she'll be on in a moment to tell you all about trial net. But let me just tell you what it says right on their webpage trial net.org. Imagine a future without Type One Diabetes trial net is an international network of leading academic institutions, endocrinologist physicians, scientists and healthcare teams at the forefront of Type One Diabetes Research. We offer Risk Screening for relatives of people with type one, and innovative clinical studies, testing ways to slow down and prevent disease progression. Our goal is a future without type one diabetes. All right now let Carl explain to you what all that means. But trust me, this is not just some dry like oh research, you're gonna want to hear this. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan.

Dr. Carla Greenbaum 2:06
I do want to say that, you know, me personally, I'm in the wrong generation. I don't really do a lot of social media. I don't do any stuff, really. But I get reports from the team all the time. And they're always highlighting, like who do people listen to? And you guys are there all the time? It's really, it's pretty cool. What you've created. I think it's pretty amazing. Actually,

Scott Benner 2:26
no, I I still I mentioned trial net all the time. When I'm talking. You know, especially when you're talking to parents who have you know, or prospective parents who have type one, but don't have kids yet. I always ask them I'm like, you know, would you look, you know, what would you think? I've gotten very, very thoughtful answers on both sides back from people. Yeah. But anyway, I guess like, let's just start with, just, you know, obviously, I'll do a lead up to it at some point. But sure, just tell me who you are. Give us your credentials and tell us about trauma.

Dr. Carla Greenbaum 2:58
So Carla Greenbaum, I direct the center for interventional immunology, and the diabetes program at benaroya. Research Institute here in Seattle. And I also am the Chair of diabetes trial net.

Scott Benner 3:15
And you've had this job for quite some time now. Right?

Dr. Carla Greenbaum 3:18
I have good. I've been involved in trial net. And actually, it's preceding study that diabetes prevention trial since the early 90s. And trauma, it started in 2002. And I was Vice Chair for a number of years, and then I've been chair, I guess I should remember about six or seven years now. Wow. That's terrific.

Scott Benner 3:37
So tell us tell me, I guess the the overarching goal of trial net is like, what's the Yeah, what's the thing? Yeah,

Dr. Carla Greenbaum 3:46
that's a good way to start that So first, maybe just say that, you know, what is trial debt? Right. It's, it's NIH funded your tax dollars, international clinical trial network, whose job is to save beta cells. And we do that both before diagnosis to the idea about prevention. And we also do studies, you know, after diagnosis to save whatever beta cells they're left. And, you know, I always think about that that's really the mission. But the secret to what we really do, or the hint to that is in our name of trial net. We're all about doing trials, that's our essence. That's what we're all expert in. And that's what we really, you know, aim to achieve.

Scott Benner 4:29
So if, you know, so I guess on some levels, you need people's samples who already have diabetes. And you also like, I know you tested my son. Long time ago now about eight years ago, my son got tested and did not have any, any bodies that that indicated that he might have Type One Diabetes one day. And we had to go into his my daughter's endocrinologist office to get trialnet drawls, is that still how it all works?

Dr. Carla Greenbaum 4:59
No, it's complete. difference was a great question. So maybe I should step back for a minute and just put the frame around this. So trialnet screens people for the risk of diabetes through our pathway to prevention study. And you can think about that as the funnel, it's the way to test an awful lot of people to find the few people who are unfortunately likely to develop diabetes, because that's really the people that we want to try to see if we can stop or delay the disease. So the first step is this pathway to prevention, which is screening. But as you're talking about, you know, in the old days, you have to go in and get your blood drawn, and you had to go into only a selected number of places. But now, you actually can get tested by going online and doing a consent online and you'll get a kit sent to you. You could test your with a kid at home, you could do that at home, and you put it in a kit, and FedEx comes and picks it up, and it's all free. So that is really a huge difference from sounds like when your child was screened A number of years ago.

Scott Benner 6:04
No kidding? How long? Have you been able to do it that way?

Dr. Carla Greenbaum 6:07
We've been doing that now for a couple of years. I would say of course, during this year of COVID, it markedly increased. So certainly during this past year, I'm guessing don't quote me exactly, but at least 60. But up to 70% of all people being screened are being screened by doing this online, simple home delivery system.

Scott Benner 6:26
Does it cost anything? On my own?

Dr. Carla Greenbaum 6:28
No. Well, it costs your tax dollars, but it doesn't cost you to participate.

Scott Benner 6:33
I just think that's really important piece, I just ignore what I pay in taxes every year trial net is free.

Unknown Speaker 6:38
Exactly, exactly.

Dr. Carla Greenbaum 6:39
But that's that that's really an important thing, right? We are NIH supported. And all the work that we do is free to any participant, not just the screening, but the follow up, you know, consultation with people who are experts about diabetes and diabetes risk. And all the monitoring, we do to look to make sure whether people are progressing in their disease or not, and participating in all the trials all that?

Scott Benner 7:05
Well. So if I'm making up things now, but if I, I send my you know, if I have type one diabetes, and my brother's like, well, I want to see if I'm gonna get it, we find out he's got some markers, and how many markers are there?

Dr. Carla Greenbaum 7:17
Yeah, that's a great question. There are up to five antibodies that are associated pretty reliably with Type One Diabetes. And so trial that will test up to all five, we don't test all five right away, we test two and then depending on those results, we will test on others. But that's what we would know, people who have only one antibody, they just come in on an annual basis to see whether or not or they come in to provide another blood sample to see whether they are developing more antibodies. Because everything we know now suggests that it's really having multiple antibodies that really puts the individual at risk for progressing. So that's our, our main group that we're looking for it Atlanta, buddy. So

Scott Benner 8:01
if I have multiples, so my friend yes scenario has multiples is what are some of the ways that you try to slow the progression down?

Dr. Carla Greenbaum 8:11
Well, the first thing when somebody has multiple antibodies is that we asked them to come in to do a test to see where they are on that path, right? whether their blood sugar's are still completely normal, or whether there's anything already abnormal, because that tells us which clinical trial that might be eligible for. So currently, we are running two different clinical trials for people that have multiple antibodies. One is using a drug called a bad acept or redsea. And that trial has been going on for quite a while now. And we're actually anticipating having the results of that trial before the end of 2021. And the second trial, the one that we're still recruiting for is using a drug called hydroxychloroquine, which has nothing to do with COVID. For the purpose

Scott Benner 8:59
of our study, we now all know what it is.

Dr. Carla Greenbaum 9:01
So yeah, we now would, but the good news is it is an oral medication that people can take. And so people who have multiple antibodies, and have normal glucose can be in this study. And the idea is to figure out whether hydroxychloroquine can slow or delay people progressing to getting diabetes. And it's a really interesting drug because it's been around for more than 50 years for totally other purposes. But it is now widespread use for people who live with arthritis, which of course, is another autoimmune disease like diabetes. And that's true in both kids and adults. So there's lots and lots of information about this drug. And all of that suggests that it could slow disease if it's given early on. And so that's why we're doing that study. And that's ongoing right now.

Scott Benner 9:52
Is that medication, what is what it does centered around inflammation.

Dr. Carla Greenbaum 9:56
Yes, yes. So to a certain extent hydroxylase When works about me how to explain this, there's different of course arms of the immune system. And one of the early steps in autoimmunity we believe is what we call turning on the innate i na te immune system, which is like your immediate response. And this is what we think hydroxychloroquine interferes with. And it's why we hope it can slow the disease.

Scott Benner 10:27
If If a person has multiple antibodies, is it? Are they definitely going to get Type One Diabetes at some point? Or is that not

Dr. Carla Greenbaum 10:36
the case? That's a great question. Because, as you know, this whole notion of stages of diabetes, which means that once you have multiple antibodies, and you have normal glucose, you're at will be called stage one diabetes. And if you have multiple antibodies in your glucoses, are not quite normal that stage two, and stage three is what we used to call new onset diabetes. And that whole framework was really based on all the studies that do suggests that unfortunately, once you have multiple antibodies, it's extraordinarily likely that you will get clinical type one diabetes. Now the important piece that people often miss, it doesn't tell us when you're going to progress to getting type one diabetes, some people may live with multiple antibodies for a long time, and other people will get diabetes in a short period of time after the antibodies appear. So it's the antibodies that tell us who to test further to see who's going to be getting diabetes sooner to see about who could be in our trials. Gotcha.

Scott Benner 11:43
And this is just a point where I mentioned we're talking about type one in case,

Unknown Speaker 11:47
yes,

Dr. Carla Greenbaum 11:48
type one diabetes. And, and, you know, I should say that the, the study that tronic conducted, where we showed that one of the drugs that we tested lism ab could slow progression in people that were at risk for getting diabetes. You know, half the people who had received the placebo, got diabetes very, very quickly, within two years. So when I say that just having antibodies doesn't tell us how long it takes you to get diabetes, it's really having antibodies and doing these other tests that we can help give you information.

Scott Benner 12:22
You know, I have to say that I've now interviewed a number of people who have gotten it in their 60s. Yeah, and I feel like, a decade or two ago, someone would have told you that was impossible. Yeah. But yeah, just I've just talked to too many people who who've had it happen. And and I think at this point, now, if I should have made a flowchart at one point in my life, I've probably spoken to somebody who's been diagnosed at every age between one seriously between the newborn and like, in their mid 60s. So yeah, nobody ever. I mean, don't get me wrong, there's, you know, there's sweet spots, it seems like where people like, you know, they're all like, always, like, 28, or just getting ready to go to college, or, you know, like, there's, there seems to be, I mean, this is very unscientific, but there's there seems to be some sweet spots where it happens. But I, I've had somebody say, every age that I can think of, so

Dr. Carla Greenbaum 13:14
you're absolutely correct. So what you talked about the sweet spots is what we what we talk about by modal distribution, that's a fancy science word, which basically says, if we look at when people get diabetes, there's sort of the group of people, they get it really sort of pre puberty, kind of six to 10 year old range. And then there's another blip around puberty, that people get it. But then we do know, people like you found right people get diabetes, it also Type One Diabetes at all stages. What we don't know, for example, is somebody let's say they have just one antibody. Now, people with it, we test to only have one antibody, we know about 20% of them, will develop more than one antibody after about five years. But we don't know if the other 80% will eventually get multiple antibodies, or will develop diabetes with having only one antibody decades later. We you know, because we haven't followed people 60 or 70 years, right? We don't know that for sure. Wow.

Scott Benner 14:22
What about having other autoimmune like if you have a different autoimmune issue and have an antibody? Does it change your your odds?

Dr. Carla Greenbaum 14:30
What changes your odds is your genetics, right? So your genetics is what sets up any autoimmune disease. And if you have another autoimmune disease, that means you have the genetics that puts you at potential increased risk. But once you have multiple antibodies, diabetes related antibodies, the genetics don't seem to matter that much. So it really the genetics tells you, who's going to give you who's going to have antibodies Not who's going to progress once you have antibodies. Milan, go, I'm sorry, I'm sorry.

Scott Benner 15:04
No, I didn't mean to stop you, if you have something else, thank you,

Dr. Carla Greenbaum 15:07
I was just gonna say that's really why trauma focuses on screening relatives, right? Because we know that's a genetic screening test. If you have a relative with diabetes, that means the genes are in your family more concentrated. And if we screen, you know, we will find about one out of every 50 relatives will have multiple antibodies. It is true that people who never had a relative will get diabetes, but we'd have to screen 750 people who do not have a relative to find that one with multiple antibodies. That's interesting.

Scott Benner 15:42
Let me ask you this. If Can I pluck two people off the planet who are married, and we screen them and find out if their children have more or less of a chance of having type one?

Dr. Carla Greenbaum 15:53
Hmm, not really, because the genetics give us I think what we call a fertile field, right? They give a probability. But they're not like genes that cause particular kind of breast cancer or Huntington's chorea. In other words, monogenic diseases, right? They don't, they don't say you're going to get it. So we could give some ideas, but we can't give enough information. We know some genes that are associated with getting diabetes, but there's a lot of people who have those same genes who never will. So genetics alone doesn't help us. On the other hand, as I mentioned before, we do know about what happens in relatives. So if you're an identical twin, the risk is very high. If you're a child of a father with diabetes, the risk is higher than if you have a mother with diabetes. So we do have that kind of subtle information.

Scott Benner 16:48
Are you learning about? How does diabetes skip generations? Or? Or is it just random? You know, Scott,

Dr. Carla Greenbaum 16:56
it's so funny how often people ask me? No, it does not skip. So that is not true. I don't know why people get that idea. I hear it all the time. But

Scott Benner 17:10
it's just anecdotal. Because probably what you just said is you're more likely if your father has than your mother has. So yeah, maybe your father has it. You have a daughter who doesn't have it, who then has a son who then does have it and then it makes it feel like it's skipping agenda.

Dr. Carla Greenbaum 17:23
Yeah, yeah, you're right. I mean, I don't mean to be No, no, I don't mean to be polite about it. But in general, No, unfortunately, that's, again, why we screen first degree, family members that his immediate family will screen people up until age 45. Where second degree, we actually only screen to age 20. Because the rest becomes lower. The further genetically you are from the person with diabetes.

Scott Benner 17:53
After the obvious goal of helping people who use screen and find what are other goals of trialnet, like, what else am I helping?

Unknown Speaker 18:01
Mm hmm,

Dr. Carla Greenbaum 18:02
great question. So one of the things is that we're helping is that we are providing hope and support for people, right? If you have somebody with diabetes in your family, you know, you are worried about other people in your family. And most the time, you'll get pretty good news, right? Because only about 5% of people will have antibodies. But if somebody is antibody positive, you know, we're kind of there for them. Right? It's like, when a physician has to give bad news to anybody. This is bad news to let people know that, you know, unfortunately, now you have multiple antibodies, but we're there to monitor and follow them carefully. And, and provide opportunity, and to have them prepare if that diagnosis will occur if a trial is not available for them. But on a broader scale, what we provide, and what participants provide to everybody else in the future is, every bit of data we get from any study we're doing is really laying the foundation for the future studies. So trial that was based on some of the studies that were literally started in the 80s, where we studied every family member we could find to measure everything we possibly could. And that's what led to this whole notion about what what predicts risks. So we learn about the Natural History of the disease, we get a better understanding of who's more likely to respond to certain therapies. You know, we really learn a lot from everybody who participates.

Scott Benner 19:33
Yeah, it's, I find it encouraging and whimsical to think about that somebody started something in the 80s that's helping somebody in 2021. Yeah, and I can see how also somebody would think that and go, Oh, great. So they'll figure this all out. 10 years after I'm dead, but but but you really are in. What it reminds me of is that I interviewed somebody who works at NASA recently. I ended up asking what does it feel like to be involved in something that you may never see the fruition of your work? And I guess I feel drawn to ask you the same question.

Dr. Carla Greenbaum 20:11
Well, I'll have to throw in a famous Tom mutek, saying for the Jewish tradition, we're towards the Hasidic story, which basically, somebody goes to this old man who's planting a tree, say, What are you planting the tree? For? You're not going to see it happen? He said, Nope. But my grandchildren will. And that this is all about, you know, thinking beyond myself, and thinking about the future. And that's what we do. I mean, all researches this way, we all have little, little pieces in this puzzle. And you know, the cliche of standing on someone else's shoulders is what we do. So I must say that I'm super excited in my research lifetime, how much has happened, right? We went from not knowing what could predict. And now we can predict. That was like, we couldn't do that before. We went from not having anything to do about it to now we have a therapy that's now been shown to stop diabetes. Now, in fact, there are seven different therapies now that can alter the disease course in diabetes seven. There Were None that long ago. So it's a little piece of the puzzle. We haven't gotten to the destination of curing diabetes yet. But boy, we've made a lot of changes.

Scott Benner 21:29
Yeah, I always imagine that. That the end goal for all these different things like you can use curing diabetes as an example. But the end goal for something, I imagine will never be reached the way the person in the moment now thinks it's going to be reached. Yeah. Do you find that you learn things along the way that reframe your thinking about how to reach that end goal?

Dr. Carla Greenbaum 21:55
I love that. That's a great, that's a fabulous way of thinking about it. I

Scott Benner 21:59
think, Carla, I don't even smoke weed. I just came up with that. I was

Dr. Carla Greenbaum 22:02
just gonna say that's like, totally, you know, 60s thinking now I'm teasing. I would say the answer to that is, whereas much of science progresses in increments, right, where we build on an observation somebody made. And we test that further, we build on another observation. There are certainly times where there are paradigm shifts, right? where somebody came up with a whole new way of either looking at the same data or has a new tool to measure something differently. So you're right. I don't know what the future of this is going to look like. I hope there are clever people in the future, who will, you know, change the paradigms a little bit and advance things even further.

Scott Benner 22:49
Yeah, it just, it makes you feel inside. If you're being whimsical, that one day someone will be able to say, Oh, you have an antibody in your, in your system that you don't want, we'll just take it out. We'll put this thing. Hey, kills it, you know,

Dr. Carla Greenbaum 23:03
you know, like I said, I'm old enough to know, when the whole idea when, when Amazon was first starting to sell books online. You know, I live in Seattle area. And I was telling and there was an opportunity to invest. And I was telling my husband, that's ridiculous. No one's going to give a credit card to somebody online.

Scott Benner 23:22
Well, I yeah, I don't know that people understand. It's funny. We were just talking about this in my kitchen, the other day where I was explaining to Arden, how quickly technology like builds on top of itself. Yeah. And you know, I stand around with my kids who are 16 and 20. And I told them the story I said, you know, when I was 13, I bought the most advanced consumer computer that existed. And I was like, I took it home. And I bought a book, a book at the bookstore that had code in it, I spent an entire day of my life. Looking at the book, typing in this code, he went on forever and ever and I got done. And I pushed Enter, and nothing happened. So I went back and I read the book and looked at the screen, and it took me hours upon hours and I found my typo, and I fixed it. And I pushed enter and a stick figure did one jumping jack on the screen and stopped. And I have to tell you, it was the most amazing thing I'd ever seen in my life. Alright, let's get into these ads and get back out quickly short episode short ads. The Dexcom g six continuous glucose monitor will show you the speed and direction of your blood sugar in real time. It will stop you from having to do finger sticks to know what your blood sugar is. And it will allow you to make decisions about insulin and food in a more precise and targeted way. And those decisions can easily lead to more stable blood sugars. Just imagine knowing how to balance your insulin against your food or seeing a small Lo come up and not over treating it with food because you can kind of watch it happen say, let me just try drinking a half of this juice box instead of the whole thing. This is amazing. On top of that, you can have up to 10 followers so somebody can be wearing the Dexcom g six and share their blood sugar's if they want with up to 10 followers. This is for Android or iPhone. And it's fantastic. I can get my phone out of my pocket right now and tell you what Arden's blood sugar is. And it is 119 and it's stable. I can see it's been stable for quite some time, that quickly if Arden's blood sugar leaves the range that we've set, which interestingly for this is 120 or 70, I'll get a little alarm and a beep beep Arden's blood sugars going above 120. And then we make a small adjustment to her insulin and bring it right back again, there are almost countless ways that you can use the information coming back from the Dexcom gs six, why don't you head over to dexcom.com forward slash juicebox. And take a harder look at it, see if it isn't something you think you might enjoy. And if you're a US military person getting your insurance through the VA, I think you're going to be super happy with the coverage. So you guys should head over to there's a quick little form to fill out and Dexcom we'll get right back to you and a ton of information that you can look at on your own. Speaking of forms to fill out, if you go to my Omni pod.com forward slash juice box, you can fill out a short form that will result in an Omnipod demo coming directly to your house. There you are a loved one can try it on and wear it and see what it would be like to wear a tubeless insulin pump not to be connected to any tubing or controllers and still get the delivery of insulin that you deserve meaning bezels while you're bathing while you're swimming during activity, being able to fine tune that basil insulin right not just inject it once a day and hope for the best. But be able to create basil programs like I don't know I want point five an hour from midnight to 6am. But at 6am I want it to be point seven or whatever you're in control of that. You're also in control of temporary basil increases and decreases extended bonuses and all kinds of ways to help with your insulin delivery to again be more targeted to your needs. Plus, it's tubeless. So you're not going to get wiring, wiring, you're not going to get tubing caught on doorknobs, dresser handles, or have to take it off to babe swim or be active or do adult activities. My omnipod.com forward slash juicebox get that free, no obligation demo sent to you right now let's know what I'm saying free, no cost to you. No Obligation means you don't like it doesn't matter. That's risk free in my opinion. There are links to Omnipod Dexcom and all the sponsors at Juicebox Podcast comm right there in the show notes of your podcast player or you can type them into a browser, my omnipod.com forward slash juice box dexcom.com forward slash juice box. And while we're talking about links, don't forget that they're not a sponsor. But Carl is here today sharing the news. So trialnet.org

a stick figure did one jumping jack on the screen and stopped. And I have to tell you it was the most amazing thing I'd ever seen in my life.

Dr. Carla Greenbaum 28:38
Yeah, well, I would say that, you know, the advances that happened in science are obviously not as touchable for the average person. Like all the technology has changed our world. But But if you look back with a little bit of a broader lens, the difference between what science has brought to healthcare and medicine now versus when I was at med school, which wasn't that many centuries ago. It's night and day. Yeah. And so I really do believe in science.

Scott Benner 29:08
I have to tell you that when when my son was two, so we're about 18 years ago, I'm 49 let me do the math real quick. I think that made me like 36 or 37 ish in there. Maybe 47 Nope, nope. 27 or 21 There we go. My appendix almost burst. When my wife was a child, she had terrible ear infections. And when my daughter was two she got type one diabetes, and you can go back in time not that far and make the case that all three of us would have died. We wouldn't be alive today, you know without just yeah, basic things that have moved forward. Yeah. Yeah. Really fantastic. And yeah, it's just I've always been thrilled to tell people about trial that and I and and then we get into that space right where Yeah. I do believe that people need to understand the benefit of finding out that they have the antibody. Yeah, because I get afraid that when people hear about it, they just think, well, I don't want to just worry, like, wait for the other shoe to drop. And I've also heard people thoughtfully say, guests on the show. Listen, I have type one diabetes, I've had it for 30 years, there's nothing wrong with me, I have a very normal life. And my kids could have a normal life too, if they had it, except the idea that you could maybe take a pill that could exponentially slow the, the onset down or even stop it. I mean, that's, that, to me, is where the exciting part is?

Dr. Carla Greenbaum 30:31
Yeah, I mean, I, I again, look, participating in research is not for everybody. And it's really hard to do it when you're making decisions for your children, for example, as compared for yourself, right. On the other hand, you know, all the money in the world is not going to bring progress if we can't have people participating. So every single person who stepped up to participate, just is accelerating our ability to test new therapies and to find new things. And, and yet, I know it's, it's a challenge. I guess, the only other comment I would make is that research in other areas where families have one child with a chronic disease, for example, has well documented that the other children in the family are wondering about them getting it as well. So sometimes parents say, I don't want to scare my other child, I don't want them to think that they might be at risk, what we know from all sorts of other studies that they're thinking about that anyway, whether they're saying it out loud or not, right. You know, and, and the other thing is that, you know, going back to the 60s, you know, knowledge is power. So I think, when people know that they're antibody positive, there's obviously a sorrow and grieving process around that. But it's such a wonderful opportunity to be able to prepare. And to, to not have to, you know, end up in the hospital with DK or something,

Scott Benner 32:00
no matter how many people I speak to, who are mis diagnosed type two and eventually find out their type one. Yeah, they all, I think I really mean all of them eventually say, it is better to know, than to struggle, or to wonder if they use words very similar. I've never heard anyone say, you know, I would have liked to have gone on thinking I had type two diabetes, when I really like one. And I'm just a big fan of that, like, in my mind, a bill comes whether I think I can pay it or not. I opened it up to find out what it is. Because now at least I know, you know, staring at the envelope closed it, you know, you can't you don't forget it's there. You just putting off the inevitable and maybe, you know, I don't like you know what, maybe I opened it up and realized, Oh, my God, I paid too much last month, this is a freebie I get the whole month of thinking I wonder bills paid already, you know, just yeah, to me. mindset. Yeah,

Dr. Carla Greenbaum 33:00
let me let me throw out a number for you, you know, for you and your your people listeners to think about this, that there's about 40,000 people that are newly diagnosed with Type One Diabetes every year in the United States. If three of each of them had on average, three relatives, that's like 120,000 people, right, which would be 3000 people that would be identified potentially, who have multiple antibodies. If we had that group of people regularly, we would be able to do all the trials much more quickly. And we get the answers much more quickly. That would help everybody

Scott Benner 33:39
people who hopes ever again, I have to say not to mix my apples and oranges here for a second. But I support the T one D exchange. And I sometimes struggle to explain to people why that's important, like, you know, to say to somebody like Oh, they you know, they took data and may and that helped the ADA bring down the a one c guidelines for children. And he hear that and it could it could be very easily you can hear that and go, like, why does that matter? But it but it you know, but it does matter? Because when the ADA says, Look, this should be a target, that every endocrinologist in the country reframes their idea of health. And, and even though it's a slow, you know, it's like, it's like turning, you know, turning a battleship. Eventually that means that everybody gets more targeted information about how to manage their blood sugar's and, you know, everybody can't listen to this podcast. I wish they could but and I know what happens when people listen to their, to their variability in their agency and their overall health, like having good information and good tools is the answer. But, but doctors, they take their marching orders from somewhere else, like largely, and so that's a hard thing to explain in a soundbite. And I think maybe you suffer from that sometimes to trying to say like look, you know, if this many people times this many people, what do you think? 1000 more people, you have no idea how helpful that information would be to help everybody. But now we said it. So now they just have to believe it.

Dr. Carla Greenbaum 35:09
Well, you'll just have to say it three or four more times, because that's exactly the point. I mean, it's, we need people to help us help them. That's really what we need. And, you know, our job is to do the best studies we possibly can. And to do the best we can to support people who are volunteering, you know, for participation. But we need people to participate. That's for sure. Carla,

Scott Benner 35:33
aren't you just gonna take my blood and make a race of lizard people and invade?

Dr. Carla Greenbaum 35:41
Listen, I think there is among the various, the tremendous tragedy that COVID has brought to the world. You know, there have been quite a few silver linings. And I think one is a little bit more insight into science, and what science can help and offer people, you know, was much more in the so called public square than I think it's been in the past. And I hope people see that the number we actually were involved in running one of the we were a site for the Pfizer vaccine trial this past year. We had more people wanting to volunteer for that than anything we've ever done. And I, you know, reflected on that. Why is it? It's because people saw it as an emergency. It's imminent, and people saw it as a public good. They saw how terrible things were and felt that they could contribute to making it better. Yeah. So maybe what we haven't explained clearly enough to people is that contributing is how it's going to make it better. And diabetes.

Scott Benner 36:39
Yeah, it doesn't take that much effort. I mean, honestly, I had to go into an office to do it that day, and it wasn't that big of a deal. And now you're saying I just went to your site. So I go to trial, net.org. And then I want

Dr. Carla Greenbaum 36:52
to participate. Now,

Scott Benner 36:54
I see that. And then oh, it's easy. I hit click Sign up. And there's it says you can get an at home test kit, visit a quest diagnostics, or labcorp. Make and that's it. Okay, so this seems pretty simple. And you put pictures of cute children on there, which is always a smile for a website?

Dr. Carla Greenbaum 37:15
Well, you know, we do have an awful lot of people have participated over the years that are really passionate and eager to tell their story. So we'd like to do that. And we anticipate doing that quite a bit more coming in the next quarter. Yeah, we'll have a whole new campaign where we're telling people's stories and why they participate and what their experience has been in trauma.

Scott Benner 37:35
That's excellent. It really is. I don't know. I don't know how to get through to everybody. Like, you know, I there's times I just think, like, just Just do it. Let's go do it. Like even, like, quick, let me ask you a question. If I wanted to help the, this is gonna sound crazy, because you probably isn't gonna work out the way I'm thinking of, but if I want to help the overall cause, but I don't want my results. Can I do that? No, because it would be medically unethical for you to know something about me and not help me.

Dr. Carla Greenbaum 38:07
Well, it just doesn't help me as much, right? Because we already know, if we got your blood sample, and you had antibodies, we already know what that means. We're not gonna learn anything from that gotcha. What we need is for people to be ready to be in studies to see if we can slow or delay the disease. So I appreciate the sentiment. And I should say, if you lived in Seattle, we would love to have your blood because we do an awful lot of work here, just a better ROI Institute to use blood samples from people living with diabetes, to understand the disease. So we're not running a clinical trial like trial meadows.

Scott Benner 38:43
But if I wanted to just drop off some blood at the institution, that separative trial that I had type one diabetes, I could do that.

Dr. Carla Greenbaum 38:50
Yeah, we have. Well, you don't just drop it off. But yeah.

Scott Benner 38:55
No, Carla, in my mind, I roll up to the curb, and I just toss it out the window. And

Unknown Speaker 38:58
yeah.

Dr. Carla Greenbaum 39:02
It's a little more than that. But yes, we, the reason why we some of the trials that we conduct, we have decided to do because of what we learned from studying blood samples and people living with diabetes. I gotcha. So, you know, all these different ways that people who have diabetes can contribute again, it's not really what trialnet does, in terms of people living with diabetes. But we do learn from samples all the time. Well,

Scott Benner 39:32
it's an amazing thing, like the work you're doing is it's astonishing. And I do think I do think it'll come to to some or a lot of good one day. I am you know, I have to say that for me being the parent of a child with type one I live, like diabetes won't be cured in my lifetime. I hope it will be like I always have the hope, but I prepare like it won't be because I get super afraid for People who have that feeling like, Oh, don't worry, they're gonna fix it soon. I don't have to take care of myself right as well. I'm always worried about that balance a little bit. But yeah, but that's what kind of struck here. Like, I wouldn't be surprised if I turn the news on one day. And some guys like, yeah, I used that CRISPR. Turns out, you just do this and this and,

Unknown Speaker 40:17
you know.

Scott Benner 40:19
And at the same time, if Yeah, I know, I'll never know. But I tell you right now, if I send somebody to try and get through this podcast 100 years from now, kids don't have Type One Diabetes anymore. I hope I can feel that wherever I am. Because Yeah,

Unknown Speaker 40:32
oh, I love it.

Dr. Carla Greenbaum 40:34
I love it. I love that sentiment. And I, you know, I would say that we do rely on people like yourself who are passionate, not only about helping people with type one diabetes, but sharing information. I think that's, that's really why the type one community is so amazing. do appreciate that kind of work.

Unknown Speaker 40:53
You have to scale it.

Dr. Carla Greenbaum 40:54
Before we leave. I should tell you about our new study, though. Is that okay? Do we have a minute?

Scott Benner 40:58
What are you kidding me? Yeah, I'm busy or something? It's, it's COVID. I'm just gonna stay?

Dr. Carla Greenbaum 41:05
Well, I've got backup calls. But we're okay for a little bit here. Listen, as I spent this whole time, right, we're all about doing prevention, right. But one of the other pieces that Tron that is now doing is looking out at different types of therapies that different companies are starting to think about developing. And we're going to those companies, and we're saying, Look, trialnet can do these studies for you, we can help move it along, we can bring it from the early steps to the next steps to the next steps. And so I'm really excited about this new study. So it's a phase one study. Phase one means first time the drugs ever been to get given to people. And it's just there for testing to make sure it's safe and helps us select what are the kinds of doses we want to use, right for the bigger trial. But this phase one study, if the results are good, is what's going to lead in the future the next step to prevention. So for this study, this is looking just for adults, because phase one means again, only first time and people so we don't give these therapies to children. And we're looking for adults who were within four years of diagnosis. And we're going to be giving them a therapy that I kind of call a designer drug. So it's a designer drug for diabetes that we're testing in this group of adults. So if people particularly people who live near a town, that center, that would be really great. And again, you should be able to read about that on our website as well. New onset studies under new onset studies. Top Bolus this study, spell it to ppl II. Okay.

Scott Benner 42:49
Well, I will make sure I'll put links to everything in here for that. Okay. That's excellent. I'm glad you told me about that. Yeah, I mean, just makes sense. Right? You're doing the work already. And yeah. And they're looking at the same things. You might just Well, I have to say that I had a gentleman on Dr. Millman. Yeah, you don't you know, Jeffrey,

Dr. Carla Greenbaum 43:09
I know of him.

Scott Benner 43:10
Okay, I had him on a couple months ago. And one of the things that it came away from that, that I came away going, Wow, that's crazy. Is it how much more science scientific minded people are now sharing what they learn. And it's, it's become less about, like, we'll just, you know, we'll, if we get it, it's ours. And it's more about, you know, about people being able to dig into other people's research into the labs, helping labs and everything. And I, you know, I really do forget the, the actual, like specifics of what he said, but he left me with a good feeling. You know, if somebody is having a good idea over there, and someone's having a good idea over there, and they're not talking, it seems like a like a waste of time. You know, so

Dr. Carla Greenbaum 43:53
well, you know, there is this, you know, old image of a scientist, you know, locked in their dark laboratory and, you know, never talking to everybody, but certainly clinical research is 100% us network, right, a collaboration I mean, trauma that has hundreds of sites, 1000s of people that are involved in making this work, so it's really all about communicating with others and, and building bridges. So sure, well, isn't Millman isn't no minute wash you He is to get you Yeah,

Scott Benner 44:21
yeah. I I forget why I ended up having him on but something he said something he said on Twitter or somewhere I forget where I saw it. I was like, I'm gonna come on the podcast. And he was just delightful. And, and what he talks about was just very aspirational.

Unknown Speaker 44:36
Yeah, I think that

Scott Benner 44:37
one of the things he said was like, is like the thing we're doing right now was just was just unheard of a short time ago like this just this is something that nobody could have even imagined. And, And that, to me is exciting. The idea that things are exponentially growing and scaling and

Dr. Carla Greenbaum 44:52
right and the cool thing is that a scientist like himself, who's developing new therapies will be able to something like That takes those and Testament people. That's why I'm saying it's, it's like, you know, it's a village, right? It's a whole community of different people using their skills and interests, who then pass that idea along for the next day. That's what it's all about.

Scott Benner 45:17
Hey, huge thanks to Omni pod and Dexcom for sponsoring this episode of the Juicebox Podcast. Find out more about that on the pod tubeless insulin pump at my Omni pod comm forward slash juice box and of course, the Dexcom g six continuous glucose monitor, you can learn about that@dexcom.com Ford slash juicebox. You can get your free T one D Risk Screening from trial net at trial net.org. And you can also find out about those other studies. Just the way Carla told you about. Why don't you check it out at trial net.org. That was pretty good. Right, Don? I did everything I need to do here.

Let me take a minute to thank everybody again for the great ratings and reviews even leaving on Apple podcasts. And wherever you listen to the podcast at thanks so much for sharing the podcast with other people for joining the private Facebook group, which of course is always free. Everything about the podcast is always free to you checking us out on Instagram, or wherever else you follow along. Let me just put this feeler out. If you're an endocrinologist who recommends the show to people, I would love you to come on and talk about that. You could be completely anonymous if you wanted to. I can't offer a voice changer. Although I don't know that I can't figure out how to do that. But you could be anonymous, I would love to hear from an endocrinologist that suggests this podcast to patients. So if you're that person, reach out, find me. I'd like to know more. There's going to be one more episode this week. And then next week, there's going to be an after dark. And what else I have a lot of really cool episodes edited. Which 1am I going to give you next week? So I think this weekend maybe Sarah

Unknown Speaker 47:21
maybe

Scott Benner 47:23
mirdif maybe gallon, maybe gallon this weekend. Next week. And after dark with Josh and Sarah later in the week. I think that's what I'm going to do then there's a how we eat coming up next the two weeks from now. And another after dark coming in the month later. That's what I'm gonna do. Yes, I've just talked myself into it. Now let's see if I can remember what I said the next time I go to put up an episode. Anyway, thanks so much for listening guys. I love making the podcast for you. Thank you for listening means the world to me. I'll talk to you soon.