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Diabetes Connections | Type 1 Diabetes
Inside the ADA Scientific Sessions Protest & Aftermath with Dr. Desmond Schatz
00:34:53
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- [00:05]
A
On this bonus episode of Diabetes Connections, what happened at ADA Scientific Sessions? It's not the research or the science, but the response to a protest that's been getting the biggest headlines. My guest, Dr. Desmond Schatz was scheduled to come on the podcast this week to talk about early population level screening for Type one, but he was also one of the five people asked to leave the conference after passing out an editorial. The ADA has since apologized a couple of times. You'll hear the whole story from Dr. Schatz. I'll talk about the follow up since our conversation and we do talk about screening. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Welcome to a bonus episode of Diabetes Connections. I'm your host Stacey Sims. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new to the show, welcome. My son was diagnosed with type one back in 2006, just before he turned two. He's now 21. I have a background in broadcasting in local television radio news and that is why I started the podcast in 2015. We usually alternate weeks of an interview episode with an in the news episode of headlines and stories. For the last couple of weeks though, I've been releasing more bonus episodes because of lots of information. As you can imagine, leading up to and coming out of ADA did not expect to be doing an episode like this one. I don't think anybody expected the events of the past week to have ever have happened. All right, as you likely know, five members of the American Diabetes association were removed from the annual Scientific Sessions conference in New Orleans on Friday, June 5th for handing out an editorial criticizing federal research cuts. The editorial had already been published in diabetes care, the ADA's own publication. It was written by the Editor in chief, Steven Kahn, one of those who was removed. I'm going to link up everything I'm talking about here. You can find them in the show notes so that you can read for yourself. You can find those@diabetes-connections.com or in whatever podcast app you are listening. There were then a few attempts at an apology from the American Diabetes association, which went over like a lead balloon according to most of the people I talked to and to the comments Online. On Monday, June 8, the editors of Diabetes Care doubled down publishing another editorial, this one titled Please Tell Me it is Only a Nightmare, the proposed Dismantling of the United States Federal Research Infrastructure. It was also written by Dr. Kahn. At least two people resigned from the ADA in protest, including the President Elect and the Planning committee chair of Scientific Sessions. Then on Wednesday, the ADA Chief Executive Officer, Charles Henderson, issued a broader apology, releasing a video apologizing to the people expelled and to the broader diabetes community. Let's listen to the first 45 seconds of that here.
- [03:03]
B
Hello, I'm Chuck Henderson, CEO of the American Diabetes Association. Over the past several days, I spent a great deal of time reflecting on events that occurred during our scientific sessions in New Orleans. First and foremost, I want to personally apologize to Dr. Steven Kahn, Dr. Desmond Schatz, Dr. Aaron Kelly, Dr. Maureen Gannon, and Dr. Justin Ryder, who were escorted out and denied access to Scientific Sessions. Regardless of the circumstances that led to those events, I recognize the impact that experience had on each of you. I am deeply sorry for the hurt, frustration and the pain that resulted.
- [03:43]
A
I'm going to play the full statement. It's only three minutes. I'll play it in its entirety at the end of this episode. You heard Henderson mention Dr. Desmond Schatz. He's my guest today. As I said in that opening, he was scheduled to come talk to me about something else entirely. We do still talk about screening for type one and the research into early detection, but Dr. Schatz agreed to share his experience at the conference and what he's hoping happens next. Dr. Schatz has been involved in Type 1 research since the 1980s. His accomplishments and titles could take up the rest of this episode. I will just say that he is the Medical Director of the Diabetes Institute and Director of the Clinical Research center at the University of Florida. He was the President, Medicine and Science of the ADA in 2016, and he has won many awards from them, including the 2009 CURE Award and the prestigious Banting Medal for service to the ada. One more thing you should know that this interview took place on Tuesday, June 9, after one or two ADA apologies, but before the recorded one, you just heard a bit of. I know podcasting is a tough way to break news, but I will say it's a wonderful way to really understand what's happening because you get to listen to the people going through it and sharing their personal stories. Here's my conversation with Dr. Desmond Schatz. Dr. Desmond Schatz, welcome to Diabetes Connections. Thank you for joining me. A lot to talk about and some things that perhaps we weren't expecting to talk about. But thank you for being here today.
- [05:12]
C
It's a pleasure to be here with you today.
- [05:14]
A
Stacy, before we jump in here, would you mind take us through what happened at the ADA Scientific Sessions conference? A lot of my listeners have seen the stories and heard about the protest removal of you and other scientists. From your perspective, what happened?
- [05:32]
C
So let me give you a bit of background. Everyone is very concerned about the impact of funding and the cuts of funding on the National Institute of Health. And one of my colleagues, and actually the editor of Diabetes Care, Stephen Kahn, was the primary author on an article which in essence, really led to discussions related to the concern that we as a scientific community have about the cuts on diabetes and ultimately what that's going to mean for scientists and most importantly, for children and adults with diabetes, because it is very clear that research has made incredible strides over the past years. I don't need to describe to you the changes that have occurred to really improve the lives of patients with diabetes as we ultimately strive to prevent and cure this disease. So the loss of funding is dramatic. And Dr. Kahn had written an editorial, and the goal was to hand out copies to people who were coming to the American Diabetes association meeting. And one of the people who was invited was the head of the nih. And really just to remind people that we need to restore funding. Not only restore, but we actually need more funding for type 1 diabetes. So it had been arranged that a few of us, probably, you know, over a dozen of us, would hand out copies of a reprint of an article that was actually published in the diabetes journal Diabetes Care. So each of us had a few. We all volunteered to just simply to hand out, just like exhibitors do, just like people who give posters hand out a copy, should you want it or not. And we were standing at the entrance, you know, to the opening session, really not obstructing anybody. Anybody wanted it. We're offered a. A copy of this journal article. And, you know, we were doing this, and security officials then approached us as a group and said to me I needed to stop. And I simply asked why? And I was told that I was violating a code of conduct. And I said, I don't know what that code of conduct is, but it's on the web and you should know. And I said, I actually don't know what it is. And he said, you needed to stop. So I kept saying, why? Anyway, he moved away. And then he. He then came back to me and said, you need to give me these reprints. And I said, why? I don't understand why I need to do it. So with reluctance, I gave him the reprints. And actually, unbeknown to me at the time, a couple of other people was escorted out the building. I was not. They took away the reprints. They asked, what? And then a few minutes later, the same gentleman came to me and said, I need to give him my badge. And I said, why? I kept asking the question, I don't understand why? And he said, no, you need to give me the badge. So anyway, we waited there. He went up to another person and asked her for a badge. I don't know how he got to this person because there were literally a dozen people around who were giving, but picked on somebody and took her badge away. And, you know, after a while, you know, people went into the room and we just left talking. And then this person and I said, we need to get our badge back. We walked around and then somebody, the same person had said, you know, you're going to need to leave. And I said, why? I don't understand. What have I done? Why? Well, you violated a code of conduct. And I said, well, I don't know. I was handing out a copy of a reprint published in Diabetes Care, advocating for people with diabetes. So then was told to leave. And, you know, I left. I bumped into some people afterwards, and people are outraged, just totally outraged by the circumstances. I mean, this is not in any way obtrusive. No one was doing anything. There was no real protest. It was handing out an article. I mean, you know, I go to my hotel rooms, people actually put something under my door. If I go to the exhibit hall, people offer an article or something advertising. I've choose whatever it is, and that was it. And then afterwards, obviously, some of this was filmed. My colleagues. There were three people who were out. I was not, but they went outside. And then clearly the press picked it up. And it was then the video went viral. And the article, which initially was hoped, you know, we're handing out maybe a thousand copies. There are many people who come to the meeting. We hope maybe 200 people would read it. That would be more exposure. And I think that instead of 200 people reading it, something like 70,000 people. Oh, pretty much like the Streisand effect. Yes, certainly that's really what's happened. And it's just an embarrassing situation for an organization that I'm so proud of, that I've served for so many years. And then there was a very weak apology, or not even an apology, a weak, real justification of their stance a day later. And then they offered a badge back, which, you know, I had already made arrangements saying that I couldn't attend the meeting, that I would return home.
- [10:59]
A
So ultimately, you left. You did leave?
- [11:01]
C
I left. I left early. You know, they did offer this reinstatement with some, you know, that I adhere to code of conduct or whatever. I mean, I've attended these meetings since, you know, over 40 years. I never heard of this. You know, I'm flabbergasted by whoever it is to Hussein to do this stuff. I. You know, it's disappointing to me that this all happened, and I just hope that there is an apology, an apology to the people who are involved, an apology to all those attending the meetings, because the whole tone of the meeting, you know, was altered.
- [11:37]
A
Yeah. This became the top story of everything else and overshadowing the scientific achievements.
- [11:41]
C
Absolutely. And that's, to me, very sad, because this is the meeting, you know, this is the meeting that, you know, that people have attended. This is the people that we do look forward to, to the science, to the progress. And it was disappointing to me that the focus of this whole meeting was lost because of a poor decision, really, to do things that, honestly, nobody was doing anything in any threatening way. It was handing out an article, and if anybody, you know, wants to look and check, certainly the video of me and others, it was just, hey, here's an article. Would you like one? No, Fine. That was it. And move on.
- [12:22]
A
And one thing that I'm confused about, and I promise we will talk about screening and what we came here to talk about. But to be clear, the article you were handing out had already been published in the ADA's own journal. This wasn't a secret edition.
- [12:37]
C
Absolutely. This was already published. It was published in the American Diabetes association journal called Diabetes Care. You know, whether they endorsed it or not, it was still published in the ADA Journal and it's available online. Anybody can access it.
- [12:59]
A
So at this point, and you and I are speaking here on Tuesday, really the day after the conference has officially ended, have you heard anything from ADA other than the printed apology or statement that we did see on social media? Has anyone who was either kicked out or got their lanyard moved heard from ada?
- [13:18]
C
I received a text while I was on the plane back from the chief medical officer stating that she was currently in the presence of the chief executive officer of the American Diabetes and would I like to come and meet or have a telephone call. And that was late Sunday night, and I have not responded.
- [13:44]
A
Okay, well, thank you for telling us the story in your words. We've certainly seen a lot, talked about what happened, and I can't imagine this is the end of it. But thanks for bringing us up to date to this point. And I have already linked up the editorial and more information in my newsletter that went out this week. We'll link it up again with this episode. But, Dr. Schatz, let's talk about what I initially asked you to come on the show to talk about, and that is screening and the idea that we can make, I don't wanna say diabetes safer, but we can make the diagnosis process better. Can you start and just tell me a little bit? Give me an overview here?
- [14:23]
C
Yes. So diabetes, we know affects probably close to 50 million Americans now, diabetes or pre diabetes. And we think they're about 2 million people in the United States. The numbers vary from 1 to 3 million who have type 1 diabetes. My entire life has been dedicated to improving the lives of patients with type 1 diabetes. I see patients in the clinic. I also do research aimed at the ultimate prevention and cure of type 1 diabetes and have really been funded my entire life from the National Institute of Health, as well as multiple Foundations, Breakthrough Type 1, JDRF, Helmsley and Industry. So I have an interest in really ultimately understanding the mechanisms and affecting a real cure and prevention of the disease. So that's a bit of the background, you know, certainly to this, and we now know, and I was part of the original publication, that we can predict not precisely the onset, but we can predict the subsequent development of type 1 diabetes by really case finding, by really studies that I had done in the mid-80s and early 90s in which we looked at relatives with type 1 diabetes. Then we screened a general population in the Pasco county area with antibodies and really showed that if you did have antibodies and more than one antibodies, the likelihood of developing type 1 diabetes was extremely high over the next 5, 10, 15 years. And, you know, studies like Annetta Ziegler and my other colleagues have shown that, you know, the five year risk is about 50%, the 10 year risks about 75%, and then the 15 year risk is probably above 90%. It's not 100%, but it's pretty high. And the younger you screen for the disease, the more likely you are to develop it compared to older people. And that's certainly an unknown because we really don't understand type 1 diabetes really in adults, but we do know it much better in children than that. If you screen relatives, which is really the American Diabetes association guidelines. And something that I follow is that we need to screen people who are at risk for the disease. So the risk in relatives is about 1 in 20. The risk in the general population is about 1 in 300. So right now my belief is that we need to screen relatives and those who have other increased genetic risks. So those, for example, who have other autoimmune diseases like autoimmune thyroid disease or celiac disease, or those that, you know, have perhaps autoimmune polyandocrine glandular syndrome, there are other conditions. We need to screen them because the risk of developing the disease is so elevated. So why do we do it? We do it because one, we know that early identification can lead to decreased diabetic ketoacidosis, which in itself has a morbidity and even, unfortunately, a mortality. We do it so that we can understand more about the disease, to try and understand more about the mechanisms leading to the disease. So anybody that we screen is positive. We get them involved with more studies. We also do it because there is the possibility of enrolling in a research study, a prevention study, to try and delay or prevent the disease. So I think they're very good reasons that we screen. And, you know, right now we do this in relatives because it's 1 in 20, and right now we do not have an infrastructure or the financial wherewithal to screen a general population. I think that as time goes on, that will occur. It's occurring in certain countries. But for now, we really need to screen. And I was one of the original principal investigators in the diabetes prevention trial in trnet, and the whole goal therein is to prevent the disease. We screen relatives. We at the University of Florida have been one of the major enrollers in trials in screening. We started this in the really early 80s with Noel McLaren and when I was a fellow and then became a faculty member and we developed really broad screening programs in relatives. I got many other sites to join us and really they became part of the dpt, became part of trialnet, and we've been screening relatives. Unfortunately, even though there are probably 15 to 20,000 new cases of type 1 diabetes per year, we don't screen all their relatives. And there are only a few centers really, that are screening the relatives. So my feeling is that we really need to focus on getting more and more of the relatives, first and younger, second degree relatives, screened so that we can understand, which is the main purpose to prevent dka, to educate them, to understand that there is more research and that we can potentially enroll them in an intervention study.
- [19:35]
A
From my perspective, just a layperson who's part of the community, I see a lot of, I don't know if reluctance is the right word, but kind of people nodding their heads saying, that's a good idea, I should get screened, and that they don't. So over the last, let's say, 20 or even more years. From your perspective, what does work to get people screened? Is it their primary physician? Is it somebody like you coming on a podcast like, what works?
- [20:01]
C
You're a hundred percent right. We need champions. We need champions. Somebody who really cares. Without a champion, it's very unlikely to happen. You're bringing up many, many issues, psychological on the patient's part. Do they want to know? Some people don't want to know. I've always said that, you know, education and knowledge is really empowerment. I really believe in that. Some people just don't want to know. But I think people just don't know. And a lot of the physicians also just don't know about the presence of screening for risk. And not only do they not know, but a big issue is time. Time is such a challenge. I mean, you can imagine you go to the physician or you take your child to a physician. Each visit with me is 45 minutes. I got to get to know who you are. What are the challenges of diabetes? What are the challenges? And this is just diabetes. This is what I do. What's nutrition? What's education? What's the new technologies? What's exercise? What's hypoglycemia? There's so much just even for me as a pediatric endocrinologist to explain, and this is a small part, and there are so few pediatric endocrinologists. And diabetes is not just their only focus. And then you think about the primary care physician, the primary care physician who's now talking about the need or the importance of childhood safety of vaccinations, which now everybody says, should I get my child vaccinated? Should, you know, we wear car seats? Should we do things? You know, where does diabetes screening, you know, fit in? And it's really much lower down on the thing. And there's so many other patients that they need to see about so many things, so this gets neglected. And so I think that time is a major, major barrier, you know, certainly to screening. And, you know, we've got to start. We've got to start with tapilizumab. It is not the magic bullet, but it's a start, and we need to build on those. And trialnet is doing other studies that may be just as effective, that are logistically less challenging, that may be cheaper, and really taken up more by people who may be interested in the disease. So I think there's a multitude of factors which we could honestly talk about forever, but I think these are some of the issues that really need to be tackled.
- [22:30]
A
Yeah, I believe last year the ADA put screening into some of their guidelines and their standards of care. Did anything, I guess I can still ask about what happened this year, Was anything added to that or did anything come out of this year's conference that you'd like to mention? No, no change this year.
- [22:49]
C
I can't tell you because, yeah, you were there. No, I think the guidelines are there. I mean, I still believe that all people, you know, all first degree relatives, younger, other relatives and other people who have genetic risk and other autoimmune diseases should be screened. I don't know if there's new evidence, but certainly there are papers published about, you know, the fact that, which actually I published 30 plus years ago that the rate of progression in people in the general population who had two or more antibodies was the same, not surprisingly, in those who were relatives. So, you know, a bigger study did appear from Dr. Ziegler in the jama earlier, you know, a couple of months ago, which really confirmed, you know, what something that we had shown several years ago. But I obviously did not attend the meeting and I can't tell you if anything new, but I would be surprised because I am really up to date with this and you know, work very closely, you know, in this arena on screening to know that there was really any new evidence.
- [24:01]
A
You know, either way, do those guidelines, and forgive me for asking it this way, do those guidelines help clinicians? Do they really make a difference in terms of a pediatrician saying, okay, I have to prioritize screening or at least have to talk to my patient about it because I'm seeing it now more in these journals.
- [24:21]
C
You know, I don't know the answer to your question, but you know, you know, people have used guidelines really as a justification for billing. So if it's in the ADA guidelines, then physicians are going to say, okay, I can do this. And you know what, I can generate a billing code and it's supported by the ADA guidelines and then providers, I mean, insurance companies will pay for it. Will it have any more impact on people who are screening? I don't know the answer. I would say that it's word that I have spread for many years. I will continue to do that. How many people actually read the guidelines for knowledge is unknown? It would be an interesting statistic. It's a good question you asked that I don't have the answer to.
- [25:10]
A
Well, I appreciate that. Just because sometimes again as a layperson we see what seems to move the needle from my perspective is the, you know, saying, okay, this is a standard of care. But having a treatment like having duplizumab, I think has made the biggest difference. Just people that I'm talking to who kind of feel like, okay, even though staying out of DKA is an incredible feat. Right. Trying to screen more so we can just quote, unquote, do that. But it almost feels like over the last couple of years, people have thought, well, why would I screen? I don't really get anything out of it. I knew my kid was going to develop type one. I would know the signs. In other words, which we all know, we don't always see them, but having a medication seems to have made a bigger difference. Can you speak to that a little bit?
- [25:53]
C
I think it's a start. You know, templizumab is not a cure. And I think that's why it takes me so long to understand expectation. You know, what is the expectation? You know, the disease from the study that was shown, that there are some people who respond, there are some people who don't respond. In those that responded, there was a delay of two to three years. And I think that if people understand this is worth the effort, which is an infusion for 14 days, it's putting in an IV, it's doing this. And, you know, the benefits of delaying the disease, you know, if they want to know, I think it's a big step forward. But there are other trials, because this is, let's say, the foot in the door. There are other trials that are going on and that I believe will also hopefully lead to more therapies and more effective therapies down the road.
- [26:47]
A
Yeah, but you need people screened so that you can trial all of these medications and do these studies.
- [26:53]
C
Right, right, right. We, as I have said, I said many years ago in my presidential address that insulin was not a cure. That no matter what it is, even with what I'm very excited about, and I'm on theses committees for students, is stem cell transdifferentiation into islets. Well, even when we do get to that point, and I don't think we're very far, we're going to have to prevent the immune system from coming back again and destroying those cells that make cancer.
- [27:24]
A
Right.
- [27:25]
C
So we really need to say that without prevention, which is my words, there will not be a cure. So I think that is absolutely imperative that while we're working on cellular therapies, gene therapies, replacement therapies, that we absolutely understand the mechanisms which I think is so important, the mechanisms leading to this and then initiate Therapies which are gonna interdict the disease process.
- [27:55]
A
Yeah. You have been doing this a long time. You've seen lots and lots of people. You know, you've taught, you've. I don't even know how to quantify it, but I'd love to know what are you excited about right now? What developments? It's changed just in the time that my son was diagnosed. Right. We went from Lantus being super exciting to now having aid systems and GLP1 medications studied for type 1. He's doing so much better than I thought he would be doing. What gets you excited still about the research?
- [28:23]
C
I don't want to quote Mandela because I don't want to get it wrong, but I may not be an optimist, but I'm a great believer in hope. I mean it's to that, you know, as I said, don't quote me, but it relates to, to what it is and I'm hopeful. I am really hopeful. Right. I'm not going to promise you anything. That's what I've always said. You know, I'm probably not a great fundraiser because I cannot promise you something that I can't deliver on. You know, I, I always under promise and over deliver. That has always been my, my mantra, so. But I'm really excited about the potential of cellular therapies and the ability to transdifferentiate and to get cells, both adult stem cells as well as embryonic stem cells, to really become functioning insulin producing cells. I'm really excited. I go to every lab meeting that I can. I sit on theses committees and frankly, if I was younger and at a different stage of my career, I would do a PhD in this very arena because I think it is so exciting and I think that the potential to provide that hope is what excites me a lot down the road.
- [29:32]
A
And let's leave it with this, if I may, not to twist that quote around at all, but maybe not being optimistic, but being a little hopeful for a good response from ada. What would you like the ADA to come out and do this week, next week and in the future about the incident?
- [29:46]
C
Possibly about simply an honest and open apology. You know, we apologize to our supporters who really drew unnecessary attention. We apologize to the ADA membership and to all those who have diabetes because we made a mistake, we erred. The situation was not what was perceived. We made an honest mistake. And for that we apologize and they should meet with all the people as well as others in leadership and with membership to say, you know, we support the efforts that you're doing. We want to improve funding, we want to enhance NIH funding. How can we do this together?
- [30:39]
A
Great. Well, we'll leave it there. I hope that is what the response is and I hope I'm a bit of a rose colored glasses person. I hope all this attention boomerangs in some way and gets lots more funding. So fingers crossed and we'll see. But Dr. Schatz, thank you so much for joining me. I hope we talk again soon. Thank you.
- [30:54]
C
Thank you, Stacy. Appreciate it.
- [31:01]
A
Again, I'm going to link up everything I talked about here, the two editorials, the apologies from ada, the video we're going to play the whole thing, but I'll link up the video in the show notes and any other additional information that comes out in between. Now, I am recording this on Thursday, June 11, and we will be releasing it on Friday, June 12. So I'll pop anything else that happens in there as well. And of course I'll link up the studies Dr. Schatz talked about about screening. We did get to that as well, and I hope to speak to him about that and more of his research in the months to come. On Tuesday, we have an in the news episode planned with much of the research and the studies and the reveals and the announcements that came out of ada. And I'm sure we will have more interviews on those coming up this summer. Thanks to my editor, John Buchenis from Audio Editing Solutions. Thank you so much for listening. I'm Stacey Sims. I'll see you back here soon. Until then, be kind to yourself. And here's the full three minute apology from the ADA CEO Charles Henderson. Diabetes Connections is in production of Stacy Sims Media. All rights reserved. All wrongs avenged.
- [32:20]
B
Hello, I'm Chuck Henderson, CEO of the American Diabetes Association. Over the past several days, I spent a great deal of time reflecting on events that occurred during our scientific sessions in New Orleans. First and foremost, I want to personally apologize to Dr. Steven Kahn, Dr. Desmond Schatz, Dr. Aaron Kelly, Dr. Maureen Gannon, and Dr. Justin Ryder, who were escorted out and denied access to scientific sessions. Regardless of the circumstances that led to those events, I recognize the impact that experience had on each of you. I am deeply sorry for the hurt, frustration and the pain that resulted. I also want to apologize to the broader diabetes community. Many members of our community were disturbed, disappointed and concerned by what occurred. I have heard your voices. I understand your concerns. And I know that trust, once shaken, must be earned back through actions and not just words. When events occur that create division or cause, members of our community to feel unheard or unwelcome, we must acknowledge that openly. To ensure transparency and accountability, the ADA will commission a thorough independent review of the events that occurred as well as the policies, procedures and decision making process that guided our actions. We want to make sure that such incidents do not reoccur. When the review is complete, we will share what we learned and identify the steps we must take moving forward. While that process unfolds, I believe we must also begin the work of healing The American Diabetes association is committed to ensuring funding for diabetes research. As we have been doing each year for the last 85 years, the ADA remains unwavering in our commitment to science. The ADA will continue to advocate for robust NIH funding, support the pursuit of scientific discovery, and advocate for the broader research community whose work advances knowledge, drives innovation and ultimately improves the lives of people living with diabetes, obesity and and related conditions. With the full support of the Board of Directors, we are committed to continuing to work together and fulfilling our mission in fighting on behalf of people living with diabetes and obesity. In closing, what transpired is not reflective of who I am, the values I hold, or the way I was raised. I will work hard to bring our community back together to build on the progress we have collectively made for those affected by diabetes. Thank you.