The Wanek Family Project is an ambitious project to find new ways to treat, stop or prevent diabetes. The researchers who work there are also figuring out how to define what we all mean by cure. City of Hope (recently renamed Arthur Riggs Diabetes & Metabolism Research Institute) announced a six year plan to find a cure for type 1 back in 2017. This week, Stacey talks to Dr. Bart Roep about their three top areas of investigations and explains the thinking behind that “six year” announcement.
In Innovations, rumors on a new smart watch with built in glucose monitoring – hope or hype?
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, an ambitious project to find new ways to treat stop or prevent diabetes is also figuring out how to define what we mean by cure,
Dr. Bart Roep 0:37
the ultimate cure is stopped insulin injections, which is of course something I can just promise at this stage that I won’t stop until we have a conference there. So that is the only promise I can make. But that is high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right? Because with that we we preserve a source of insulin.
Stacey Simms 1:02
Dr. Bart Roep is the director of the Wanek family project to cure diabetes at City of Hope. He’s going to give us a lot of information about their top three areas of investigations, a lot of which are going on right now some of which need your help
In innovations, rumors about a new watch with built in glucose monitoring no needles, hope or hype? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am only so glad to have you along. I’m your host Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. You know, my son lives with type one, my husband lives with type two, I do not have diabetes, but I have a background in broadcasting. And that’s how you get the podcast.
I was looking back, like so many of us are doing right now at march of 2020. And by this time, a lot of you had actually probably already begun staying at home stay at home orders. I believe it started in some states that early. But we had a lot going on in early March last year. And I was looking at the calendar to confirm this. But this really happened. I moved the first week of March, I spent one night in my new home. And then I went immediately to a JDRF conference the very next day, I had to pack my suitcase before I moved that I knew I would have my suitcase and my clothing in it for the conference that was in Wilmington, North Carolina. And that was March 6, seventh and eighth that we were all there at that very last JDRF conference locally in North Carolina that we all went to.
I came back on Sunday, I moved a bunch of furniture around Well, my husband and my son moved the furniture, we hung some stuff on the walls on Monday, Tuesday, the 10th. One year ago to the day of this episode being released, I took Benny to his last scheduled physical therapy had knee surgery in 2019. And that was his last PT. And then a couple of days later, we flew my daughter home from college. And that was it. That was March 14 for us 2020 that we battened down the hatches. And for us all of this started.
So here’s to better days ahead. Look, I know it’s still not easy, but I’ve seen many of your photos getting the vaccine. And I have to say I have a lot more hope than I did a couple of months ago for sure and even a couple of weeks ago. And hope is really the through line of this episode. And not just because the name of the organization has hope in it. You know, I mentioned City of Hope just a few weeks ago here on the show talking about their reverse vaccine trials. And then they reached out to me to come on the show and talk more about that and what else they’re looking into. But they actually have changed their name recently. They’re still on a mission to cure diabetes. We will talk about all of that in just a moment.
But first Diabetes Connections is brought to you by Dario health and bottom line. Look you need a plan of action with diabetes. We have been lucky that Benny’s endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months and a 58 decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management go to my Dario .com forward slash diabetes dash connections for more proven results and for information about the plan.
My guest this week is Dr. Bart Roep the director of the Wanek family project to cure diabetes at City of Hope City of Hope very recently changed its name to the Arthur Riggs diabetes and metabolism Research Institute. In honor of its longtime director and research pioneer Riggs scientific achievements include developing the technology that led to the first synthetic human insulin, a breakthrough that enabled mass production of insulin. I use the the words city of hope and Arthur Riggs diabetes Institute kind of interchangeably here, they had just changed the name, I think two weeks, maybe even one week before this interview, but many of you know that name, City of Hope, because in 2017, they made a big splash with an announcement about funding a project to cure type one. As you can imagine, a lot of eyebrows went up, including mine. And we talked about that in the interview, I am actually going to come back after the interview and talk a little bit more about the coverage of Dr. Roep refers to it and I just want to link it up and call your attention to some things.
What’s going on here is that they have started a six year program with the goal of finding a cure. And we’re just past four years into it. Dr. Roep has been researching type 1 diabetes for more than 25 years, he is passionate about serving this community and ultimately finding a cure. Dr. Roep, thank you so much for spending some time with me. I’m really interested to learn more. Thanks for jumping on.
Dr. Bart Roep 5:55
Stacey Simms 5:56
Let’s just start with some of the basics here. If you don’t mind, you’re the project director for the one family project for type 1 diabetes. Can you tell me a little bit about what that is?
Dr. Bart Roep 6:06
Yeah, absolutely. This program has been made possible by a wonderful gift from the Wanek family that allows us to do really novel, innovative out of the box, things that are all targeted to cure type one diabetes. So there’s a very tight timeline, it’s a six year program, we just entered year five, and we try to really cure diabetes in completely different ways. Because like you and all the stakeholders, I’ve been disappointed with the success of the current types of therapy. So it’s all about curing type 1 diabetes, in close collaboration with one family and other corporate partners. And we’re now at the harvest stage. So we now have a couple of programs that are really exciting and innovative, that are trying to really embrace the immune system and not suppress it and trying to cure diabetes.
I know that we could take any one of those programs, and probably spend more than an hour talking about each one of them. Can we kind of go through a little bit about each?
Dr. Bart Roep
We think that the immune system of a person with type 1 diabetes is the one that a cancer patient is craving. So we think it’s the best immune system in the world. And but it comes with a price because even some of our own tissue may sometimes be attacked, like what happens in type 1 diabetes where the source of insulin, the beta cell is destroyed. But I think it’s actually with good intentions, because I think that the immune system is looking for this trust issue. So we have come to appreciate that it is actually not a mistake of the immune system, it’s actually probably a mistake of the beta cell, and the immune system is responding to it with good intentions. And that changes the entire paradigm, we believe that immunotherapy alone will not be enough, you must make islets happy again, because that’s the provocation of the immune system. And maybe that alone could be enough to deter the immune response. And then the way that we try to do this is with a soft touch. So we want to negotiate with the immune system, we want to teach it how to do it right. Whereas all the therapies tested so far, have been trying to suppress the immune system. And as an immunologist, I think that is awful. And working in a cancer center, I know that this can cause cancers. And certainly during times of a Corona pandemic, the worst thing you can do is suppress the immune system. So what we want to do is do it very selectively and do do targeted, in a sense, it’s kind of precision medicine, where we just want to treat the problem with type 1 diabetes and read the liver rest of the immune system in these and fight cancers and infection. That is what they all have in common. And that itself is already, you know, completely new and some people call us crazy. And the type of ways we’re doing it, we have what we call an inverse vaccine. And we add inverse because normally people think of a vaccine that is meant to activate the immune system to fight virus or cancer. And we do the same, but we inactivate the immune system, but very selectively only to the vaccine that we get, which is a beta cell vaccine. So that’s one.
And the second one is that an all of this is actually coming from cancer therapy, what the breakthrough was that we genetically engineer the soldiers of the immune system, we give the cancer specific receptors, which then attack the cancers. And that has been a breakthrough in cancers. But what we want to do is exactly the opposite. We want to take the negotiators of the immune system, give them the new receptor, so they go to the islets and negotiate with the immune system. Try to do it right. That’s what we call the Car T program.
And the third one is is really become one of my favorites. And that is the very, very first therapy that’s actually on the one hand trying to make beta cells happy again. And on the other hand, you know, redirect the immune system modulate the immune system. And that’s done with one and the same product. It’s an antibody that is already extremely successful in psoriasis and is now tested in, in arthritis graft versus host disease and transplantation or even in COVID. In extreme cases of COVID, it helps to moderate the immune response. And we have given that particular antibody a backpack with a growth factor that makes islets happy again. And the beauty of all of this is this backpack is only opens at the site of inflammation. So it the antibodies delivering the growth hormone for beta cells only where it’s needed, namely, any inflamed islets. Now, when I say it’s already started smiling, because it sounds almost too good to be true. And when that’s the case, you probably are on the right track. So those are the three programs that we have.
On top of that, we have a program from Dr. Riggs, the founder of our institute and major benefactor. And that has to do with dealing with complications of disease. So we have a molecule that we know is, is very effective in reversing and preventing neuropathy, one of the complications, diabetic complications, and we’re trying to get that product also tested in in the diabetes arena to see whether we can prevent or reverse diabetic complications. But the other three are intervention studies. And what they also have in common is that they are also the first to really do personalized medicine in the sense that we’ve come to understand that every patient is different, the moms were right, we should have listened to them. And so we get that now. So we have drugs that we can give either 10 years before or after diagnosis before it’s more difficult to find but after it’s very easy to find, because that’s where the majority of our stakeholders are. And we have drugs that we would probably reserve for the medical emergency of the diagnosis because they’re a little bit more aggressive, a good come with some more risk. And we have products that we could give at any stage, like the antibody therapy, the bionic as I call it. So so that is also completely new. Now I’m really excited and proud of this program. And we were so eager to test this in the clinic and the one that is in the clinic is the vaccine, which is probably the weirdest of all
Stacey Simms 12:27
I’m gonna stop you right there. I’m gonna stop you right there because I want to, I’m glad to hear you say that. Let’s go through these three main programs, as you said, because the inverse vaccine is really how we got young the program this time around because I was talking about it a couple of weeks ago and realized I hadn’t had anybody from City of Hope from the Arthur Riggs, diabetes and metabolism Research Institute, as it’s now called on the show. So let’s talk about where you are in the inverse vaccine. Because at that time you were looking for people to be in the trial, are you in trials? Okay,
Dr. Bart Roep 12:59
we are we are still recruiting. But we need you know, for these types of trials, especially at this early stage, we need to be very picky, which is the worst thing you can do to a patient. But we need really need to find exactly the right patients. So we already did one trial, where I’m from the Netherlands as my accent probably is, is disclosing, and we did a trial there in patients that had, on average, about 12 to 15 years of type 1 diabetes just to see whether it was safe and feasible. And just to explain what we do, we takes immune cells out of the patient that we treated in the lab with vitamin D. That’s a magic bullet. And then after a couple of days, we add the vaccine, which is a piece of proinsulin, the precursor of the hormone insulin, and then we inject it back into the patient under the skin. So those cells will directly swim to the pancreas and the islets and the draining lymph nodes and do their do their magic because it’s truly magic. What what’s happening there.
And the strange thing is although I told these patients, the volunteers in the Netherlands not to have any expectations in terms of benefit. Three years later, they are all time low there HBA1C they are difficult age, they’re in the mid 20s. Usually. And you know, there are an HBA1c of 6.2. And you know you as a mom will know that that is something or you count your blessings. So it may actually be that 10 years after diagnosis that could still be a benefit of just re educating the immune system. And what I love most about it is the legacy. We do two injections Prime members just like with COVID vaccinations, and then with time they get better. How awesome is that? Right? So it does look like this could be a disease modifying therapy. Now it’s very early on. So that’s why we now do a face to trial while actually Phase One B trial, I should call it, it’s still to do with safety, but now in patients that still have plenty of beta cells, because that’s the other novelty. And we now know that most patients still have beta cells, but certainly in the first five years after diagnosis, they are functional and make insulin. So that is the group of patients that we want to test now to be more certain that we can actually preserve that beta cell function and preserve a source of insulin in those patients. So
Stacey Simms 15:28
yeah, in those patients that have the 6.2 A1C, as you had mentioned, I assume though, they’re still using insulin for now.
Right back to Dr. Roep answering that question in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That’s where Gvoke Hypopen comes in. It’s the very first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it’s easy to use in usability studies, 99% of people were able to give Gvoke correctly. I’m so glad to have something new, find out more, go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk. Now back to Dr. Roep answering my question. Were all those people who are doing so well on the studies still taking insulin.
Dr. Bart Roep 16:34
They are. And that is why, you know, we also like to test it sooner. But how important is it to finally also address our attention to people with established disease, because all the other trials so far have always been limited to very newly diagnosed disease or just before diagnosis. And the vast majority of patients and you know, one of them, they have disease. And people always thought that there is nothing we can do. And it’s game over. And that’s wrong. Most patients have beta cells, and they may not function. But you know, the first thing to do is to avoid that they keep being attacked. And then with other therapies, making islets happy again, we may get them back into action. And I just believe that what we have done unintentionally, perhaps is that we did both, we stopped the immune response, we stopped the inflammation and maybe that itself with time is enough to have those beta cells come out of hibernation. So that is the working model that we have with that particular therapy. And we have to confirm that that that earlier observation, which is extremely exciting and a small group of patients will hold in California.
Stacey Simms 17:46
Yeah, no, that is that’s great. The second study that you mentioned, was this the bone marrow or was it you say it was used in cancer patients? Can you talk a little bit about that
Dr. Bart Roep 17:55
both of these other therapies aren’t directly taken as lessons from cancer therapy. You know, 10-15 years ago, we were treating cancer by resection surgery, chemotherapy, radiation. And nowadays, it’s all immunotherapy. And one of the reasons why I joined city of hope is that I can learn from the cancer, the oncologists how to treat cancer in a personalized way. Because we also know now that even breast cancer is not one disease, it can be dozens of different flavors that require different therapies and sometimes only very mild. And that’s what we want to do in type 1 diabetes as well. Except when we do that, we want to do the complete opposite. So because if you suppress the immune system, you get cancer and some cancer patients that are treated with immunotherapy to cure the cancer, they get type 1 diabetes, so it shows that you have to do it very sophisticatedly. That’s what we try to do here. So in cancer, we engineer the soldiers of the immune system, what we call the effector T cells. And in type 1 diabetes, we do the cells that are normally regulating the response to empower them to regulate inflammation, but only there where it’s needed because I want them to fight COVID I want them to fight cancer. So So it’s the same principle, but in the exact opposite direction.
Stacey Simms 19:19
So where do you stand in terms of those studies? Are you doing clinical trials right now? Are you still in the research phase?
Dr. Bart Roep 19:26
Yeah, well, thanks to this wonderful Womak family gift we have in two and a half years and that is really I know we are spoiled with COVID right where it was less than a year, but they got billions. We did it in two and a half years. And we are already knocking on Heaven’s Door. We are starting our negotiation with the FDA to test it in the clinic. These are such obvious therapies and also they are soft touch right? It’s the patient’s own immune cells and it’s not the effect this is not the soldiers as negotiators and everyone sample the vaccine has vitamin d3 for crying out loud as the magic bullet, right? I mean, this is also a mellow, that we hope that we can convince the FDA that we can move fast. And we can avoid being misled by mouth studies and so forth. I don’t want to cure mice, I want to cure patients. So these therapies have all that going for them. So so that’s why we have a very fast track. Thanks to all the knowledge that was already there from cancer, except that we tweak it all we had to do is give it a little tweak.
Stacey Simms 20:32
I’m hesitant to ask this because I don’t want you to make promises. But what is the goal of what you’re talking about? I mean, I love how it sounds. But is the what’s the outcome supposed to be is? Is it actually a cure? Is it better control with insulin? What what would the outcome ideally be for these studies?
Dr. Bart Roep 20:48
That is the most important question to ask Stacey. And I thank you for this because the worst we can do is raise false expectations. So we really have to think about what we call a cure. And it’s different things for different people, the ultimate cure is stop insulin injections, which is, of course, something I can just promise at this stage that I won’t stop until we have accomplished this. So that is the only promise I can make. But that is a high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right, because with that, we we preserve a source of insulin. And with other therapies that we are using in type two diabetes, what can get them back to work. So that is one, of course, improving the quality of life, if you have a source of insulin, the probability that you get complications, including hypos, which most patients experience, that is also then pretty much a cure too. So there is all these different definitions of a cure.
And, and for me, as an immunologist, the first thing to do the low hanging fruit is that we stop the immune attack. But that’s not good enough, the next step will be to get therapies to get hibernating beta cells back to work. And in the worst case, in end stage disease, new sources of beta cells are important. And I’m also involved in various kinds of beta cell replacement therapy. And also as part of the Wanek family, we have been working on different kinds of stem cells, including those from the patient’s themselves, to turn them into insulin producing beta cells and make that as a source. But that is, that’s a long story. That is not what we can deliver in the short term. In the short term, we may be able to succeed to stop the disease process, which is that’s a breakthrough. If we can do that.
Stacey Simms 22:42
What would that look like in somebody who lives with type one right now? What would stopping the disease process mean? But would that be something we have to interfere immediately upon diagnosis? Or would it have an effect on somebody who’s lived with it for five or 10?
Dr. Bart Roep 22:55
Well, the point is, is probably most easily measurable, early, after diagnosis. But that has made some people misled to believe that it can only be done at diagnosis, I think that you have to be more patient to see efficacy. When you use those therapies later on, as we did with the adverse vaccine. I mean, we already completed the trial. And we were writing the paper. And we just thought, Let’s try one more blood sample Three years later, so we invited the patients back in. And that’s when we got this surprise that they actually had a fantastic glycemic control. So that is just a gentle reminder that we don’t, we should not be too impatient and just give people diabetes a chance to recover and do this.
And some of those therapies actually have a legacy we have the antibody that we’re using in with the backpack to make islets happy, again, that actually has had two cases now, where only after three years, the patient’s became insulin independent. So that is really bizarre. It’s unpublished. So you also have to be careful when you say this, but you know, I put my head on the block here. Now you’re on my stakeholders, you deserve nothing but the truth in a very early also. So that is already amazing by itself. But what I find most striking in this process is that it took a couple of years after we stopped the therapy, that this was going to happen. And that probably tells us that we really just changed the cause of events that we really, you know, interfered in the disease process. And the body has an amazing regenerative capacity, right. I mean, we I think we have largely dismissed that. But our body can really regenerate amazingly well. And that is something that, that we now need to see whether that holds. And it’s as I said, this is brand new data, some of it I could not even dream could happen and I’m always be bad for a setback as you always must be. But all the surprises we’ve had until today were favorable. That scares the hell out of me. No, seriously, I’m, I’m with you there. If you are the world’s worst diabetes mom, I must be the world’s worst diabetes doctor because I’ve been working on this for 30 years. And only recently, we started curing people, but we have cured people.
In fact, one therapy that in cancer is very common and we have done 16,000 of those at City of Hope is bone marrow transplantation that has been done in type 1 diabetes also. And lo and behold, there is three of them. And I saw them because I went to Brazil, I want to see it with my own eyes. I’m as suspicious as most of you are. And so they’re real people. They’re bonafide type 1 diabetes patients 15 years later, they don’t need a drop of insulin. Now, that is an exciting result. But we should also realize that the other 27% of the cases, other 27 cases, in time relapse, they still need less insulin. So that is promising. But it doesn’t work for everybody. But I only need one case, one case where we have pure type 1 diabetes, and we can talk to the regulators, the FDA, the the sponsors, pharma, that is is not impossible.
When I was starting, I was not even used to us allowed to use the C word, the cure word. And I still think it is an inflammatory word, right? Because so many of us have been disappointed. And so many of us have given up on this. And, and I remember the talk I gave in Santa Barbara for the JDRF. And about my plans. That was a few years ago, we just started and after the talk, this wonderful old gentleman walked up to me and I said, Doctor, I’ve had disease for 62 years, and I thought, oh my god, I could get how much I failed. And all those years, people talked about the cure, and I thought oh, I did it again. I upset people. And then he said, but this is the first time I actually think you know what, there might be something out there, you know, so we really are getting closer, we just need to understand that the disease much better. And the new insight that it’s not just an immune problem, it might not even be in the mistake of the immune system that is already making us much more focused on what the problem really, really is. And try to deal with that.
Stacey Simms 27:32
I want to get more to the cure language again, before we end. But when you’re talking about the three people who really seem to be cured in what did you say, Brazil? How do you as researchers, and how to more researchers and more countries look at things like that and say, how do we replicate that here? Is it a question of more funding? Is it a question of research? You know, how do you share more success stories like that to see if it can be replicated?
Dr. Bart Roep 27:56
That is such an important question stays in the point is the first response a scab says right? I don’t believe it. And that is a very healthy, very healthy default when you hear this type of thing. So that’s why I went there. And I did studies with them. I said, Okay, give me those blood samples of those patients. And lo and behold, with my techniques to measure islet autoreactive T cells to ultra active T cell that we believe are causing disease, the levels of those diseases predicted so even before therapy, whether a patient would relapse or remit. So that’s already pretty amazing. So that that made me think you know what, these guys could be onto something. But the reality of where most of us agree, at least for type 1 diabetes bone marrow transplantation is maybe a bridge too far. In cancer we don’t. So I also think it is a little bit in the eyes of the beholder. If you have a very young child with diabetes, sometimes the prognosis of having cancer is better because we do stem cell therapy in cancer and they work and they cure people forever in cancer. So why not give a young child the same good start in life and kids do really well with these types of severe interventions, their immune system is extremely capable of recovering and for the record, we used the patient’s own bone marrow right it wasn’t even from a donor. So basically, what you do you take out some of the blood stem cells and then the bad part starts then we start to erase the hard disk of the immune system of the patient including the mistake that alter immune response and then we give it back the blood cells to have it recover.
I use it as what we call a proof of concept it can be done so can we now find a way that we can do it in a less risky way because certainly in in the US you have all kinds of liabilities for the record that was an American company, pharmaceutical company, that better trial in Brazil so that that’s a little bit telling, but it also shows that these are Really, you know, bonafide organizations behind this investigation. So that can be done. But there are other examples that are maybe less spectacular. But there are interesting cases where we have trend started to treat with new kinds of drugs that actually treat the beta cells that have got people in complete remission. And my worst struggle, if I may, which we just published this month, is where we did still transportation for crying out loud. So we took stalls, so we, you know, poop with all the little bacteria in there, and kind of refreshed our intestinal biome, and it had spectacular impact, all the patients in the in the treated arm actually made the same or more insulin, believe it or not a year after diagnosis, whereas normally, with time you make less than you need more insulin. Sure, right. Sure. So that already shows that this can work.
Stacey Simms 31:00
You know, one of the things that came to mind when I when we set up that I was talking with you, one of the things I wanted to address, and you’ve touched on it already, and I appreciate that is this talk about cure, because in 2017, when the Wanek family made this enormous and incredibly generous donation of $50 million to City of Hope it came with a I’ll call it this, because it’s just what it seemed like from the press releases and everything I read a promise of a cure in six years. Well, I read that. Well, wait a second, I read that at the time. And I thought these people are wonderfully generous. But this doesn’t help anybody by putting it into these terms. So I’d love to know what the you already started to answer. So I should let you go. But why do that? What kind of pressure does that put on you folks?
Dr. Bart Roep 31:48
You know what, let me first speak for the family. They never put those words out there. They their ambition, and it’s a high ambition is a cure, right? They have type 1 diabetes in the family. And they are as disappointed as all of us that we’re not there yet. So they wanted us to be focusing on the cure and do it in different ways. Because so far, it has been pretty disappointing. Okay, so that is the family’s perspective. Then the other point is, you have to have an aggressive timeline, because that forces you to focus and to kill some darlings along the way, but only take the best of the best to take that forward. And that’s where the six year came in. Now, I was asked disappointed with the marketing communication and journalism that says a cure in six years, because that’s not the same thing. It’s a six year project aiming to cure type 1 diabetes, and that has started to live a life of its own. So that being said, That being said, and that should never have happened. And I am with you, when you say don’t raise false expectations, let the data speak. I’m completely with you that. But what it did do is it added the sense of urgency that we have at City of Hope to work fast. And that in itself is not a bad thing. And to put the bar high. And also make sure that you don’t get distracted with some side products that might not be delivering that fast is not a bad thing, either. So I actually think it helped me pretty much to really, you know, don’t take a lot of vacation and really work. Get it there.
Stacey Simms 33:27
The way you phrased it made such a difference to say a six year program to find a cure is so very different from find a cure in six years. So I really appreciate you kind of going through, you know, clarifying that,
Dr. Bart Roep 33:41
well, let’s get the record straight there. And that’s exactly the way it is. But having said that, I don’t mind curing diabetes in six years. I just wonder why I should not do it in two years instead, you know, I mean, that it’s okay to just throw everything aside and put all your energy and money and whatever into trying to do this because I was a skeptic. I honestly 30 years ago, I started to study islet transplantation to show why this was such a bad idea because basically you give the immune system new islets to be destroyed. And I unfortunate was right in many cases, but I was also wrong in some cases where it worked. And that got us the opportunity to to learn why it works, when it works and why it fails when it fails. So that was a huge leap into getting to understand the disease and understanding what is important and and what is useless. So that that’s one thing. But now I’m you know, I’m reaching, you know, the fall of my career. Now I really want to cure type one diabetes and now I really want to have people to just say okay, here you go, give it six years and we’ll see where it ends. And to be quite honest, two of these products were not on the shelf when we propose to the family to support us, they actually were part of the seeds of funding the capital, that allowed us to work really fast.
Normally, when you ask for funds from the NIH or JDRF, because you’re being judged by your peers, your enemies, your competitors, you better be darn right and have 60% of the data before you even get a shot at it. And in this case, they just trusted me on my brown eyes to just go ahead and do stuff. And and as business people who want a family, they’re the founders of Ashley furniture as business people, they understand that you can fail, but it’s our obligation to fail quickly, so fast and learn from it. And of course, there are always failures. But those days are often more more valuable than some of the small successes. So So this as a model, I think has been proven extremely effective. And we the one, the one thing you have to be very good at. And that’s the most difficult part is triage, you know, govern this. So you have to tell your dearest colleagues or closest colleagues, you know what that was a great try that let’s try something else. Or, you know, let’s move in a different direction, that is something that is the most painful thing to do. And unfortunately, that had to happen to and that’s not something many of us are good at doing.
Stacey Simms 36:23
Before I let you go and we start wrapping it up here, you don’t have a real personal connection. In other words, you don’t have type one, no one in your family has type one. But I imagine that as you’ve been saying, for 30 years, you’ve been working in diabetes, you’ve got to feel like now you do have a personal connection. What does this all mean to you after all these years,
Dr. Bart Roep 36:41
I think that this has been destiny, to be quite honest. And Roep in Dutch actually means calling in a way. So there is something when I was a medical student in the late 80s, let’s say I did it straight after kindergarten, I was so upset that all the therapies we gave in type 1 diabetes, were palliative care, that they treated the symptoms that didn’t treat the cause. And I at that stage, and it is absolutely a true story. I thought this cannot be right, I cannot be a fulfilling doctor. By just treating the symptoms, we have to understand the disease. And that is when I started to be more interested in the cause of the disease. I must also add to this I’m emotionally incontinent. So I really could every patient that I saw, I brought back home, I could not let it go. So I will be a horrible doctor crying all the time with the base. And so probably this is a win win for everybody. But But that was the moment where I really started to say, listen, it has to be a type 1 diabetes, and everything in my life is now type 1 diabetes. So I’m always saying I don’t have it, but I’m living it.
Stacey Simms 37:52
Well, thank you so much for sharing all of this information with us. We really just scratched the surface. I hope you can come back on as these studies progress. And you have more to report and give us an update.
Dr. Bart Roep 38:02
Oh, absolutely. Because that would mean that recent updates. Yes. No, no, I owe you daily. And I’m so grateful for all the patients for bearing with us and giving us the benefit of the doubt and I keep on working until we have something I won’t rest before them. That’s solemn promise.
You’re listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:33
Much More information at the episode homepage, just go to Diabetes connections.com, as always, and we will link you up with much more information on the Wanek family project on the center itself. And any of the research that they’re looking for recruits. If they still need our help, I will link that up as well.
So just want to take a quick moment here to talk because Dr. Roep brought it up about the coverage of the cure language from back in 2017. To his credit, Dr. Roep in the articles from back then is really trying to say what he said with me. He absolutely admits that six years is a goal. He calls it a goal, not a promise. He says if he knew what needed to be done, he would do it in one year. But he is really optimistic about the pathway that City of Hope laid out and just what he said in the interview that you just heard. The issue here seems to come from quotes directly from the one family the incredibly generous and well meaning Wanek family, the family behind Ashley furniture. So Todd Wanek had been giving some interviews at the time, and he doesn’t stray from the six years will have a cure. I have faith in them. They are very dedicated to doing so. And I mean if you look back diabetes, mine has a great article on this and they say they really, really pressed on this and they just kept saying we have confidence.
So I have to say that while I get what Dr. Roep is talking about there. I think those of us who were very I’ll say skeptical back in 2017 were not wrong to be I don’t think it was out of line to Be and I do worry that when they set timelines like this and then do not reach them, maybe they will. But if they do not, does that discourage other people from investing in cure research. And as Dr. rib said, What cure means may vary. So look, I just wanted to circle back on that I will link up some of the articles from them. So you can see for yourself, you can certainly google it up as well. really fascinating, really great research. I mean, he listed so many things there that are happening in other countries and other theories. And it’s just amazing to think about, and I’m very optimistic, but I don’t like I was never told when Benny was diagnosed five years to a cure. And I think never having been told that changed our outlook and made us more optimistic. I don’t know, what do you think we’ll be polling about that in our newsletter? I want to learn more about this. And I’m gonna be talking about it in the Facebook group as well.
All right, let’s talk about innovations coming up. And I’m a little bit on my soapbox about rumors and news and the difference. But anyway, we’ll talk about that in a moment. Diabetes Connections is brought to you by Dexcom. It’s hard to remember what things were like before we started using Dexcom. I mean, I haven’t forgotten, but it is so different now is what I mean, when Benny was a toddler, we were doing something like 10 finger sticks a day, even when he got older, we did at least six to eight every day. I mean, they were scheduled and you know, when he wasn’t feeling well or something was off, we would do more. But with every iteration of Dexcom. We’ve done fewer and fewer sticks, the latest generation the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny’s little worn out fingertips makes me so glad that Dexcom has helped us come so far. It’s an incredible tool. Benny’s fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.
Innovations this week, let’s talk about an innovation that I think is all hype. But hey, you never know maybe it’s real. A couple of weeks ago, I saw a bunch of headlines. They were mostly in the tech world hadn’t made it over to the diabetes reporting. Yep, about the next generation of watches Apple Android watches that might include glucose monitors, I kind of hand wave that away. because there wasn’t enough real information from these groups to even warrant a second glance, it was things like might happen could happen, hearing rumors, that sort of thing. But just in the last week or so I’ve been seeing more diabetes news sources, and more diabetes bloggers talking about glucose monitoring in the next generation of watches. Is this really coming? I gotta be honest with you guys. I do not think so.
What touched off this whole thing was a report out of South Korea, which I still have not seen translated into English. And as I do not read Korean, I have no idea what the report says I don’t think many people who are reporting on it know what the report says. But it basically seems to indicate that the series seven Apple Watch and the Samsung Galaxy watch four will feature continuous glucose monitoring, they say no blood sampling, it will use an optical sensor, it will be advertised to people with and without diabetes, that’s important. We’ll come back to that. And this will be somehow infrared sensors. So look, the first thing to keep in mind is if this is going to be advertised to people who use insulin, it has to have FDA approval, you cannot get FDA approval for something like that between now and later this year. If they haven’t done any clinical trials, it’s not going to happen. So I can’t imagine that this is something that if real is going to go to people with diabetes, somebody without diabetes, you want to kind of maybe know sort of what your blood glucose is? Sure, I could see that. But how accurate is it going to be? I mean, we really have no idea because I haven’t seen any research on this. I know that there are some people out there who have been citing a long ago studies and talking about the Glucowatch, which I know some of you longtime listeners used but I covered this I covered the glucose much back in the 90s when I was a health reporter, and it burned people. So we know it’s not going to be that I hope anyway, look, I’m not critical of the organization’s for covering this story. I am a little miffed at the headlines, because the articles are all great. The articles are all saying that this is something that we’re hearing about, we don’t know could it happen, other people quoted who are saying why it can’t happen and the complications and the things that I’m saying about clinical trials, but the headlines have been all this is coming these watches to include glucose monitors. I haven’t seen many headlines that have said probably not or don’t get your hopes up. Like it says, what would you click that I guess that’s not clickbait. This is why I’m not that great at social media.
Anyway, sorry, a little bit of my soapbox here, because I think this is just setting up people with diabetes for disappointment. And before we move on from this, I should say that I saw a lot of comments on social media about that. There are several systems like this in development, you know, bio wearables that there’s a lot of stuff coming like this. That may be the case. But a couple of years ago, there were a lot of companies excited about contact lenses that red blood glucose. So just because you can show me a company that is trying to venture capitalize its way into this space, doesn’t mean I’m going to get excited about a new device will eventually come. Yeah, I think it absolutely will. I mean, who knew we’d be talking into our watches my dad talks into his Apple watch like Dick Tracy, if you told me that was coming 10 years ago, I mean, right? It’s coming, but it’s coming this fall. Outlook unlikely. Alright. It was kind of a pessimistic innovation segment, but we will bring back Tell me something good and more innovation stuff in the weeks to come.
Hey, before I let you go, just one funny thing during this taping, here, I heard Benny’s insulin pump beeping, you do not know why. And I probably won’t find out. And I got to tell you it is very weird to be 14 years into this probably the first 12 where we did almost everything for him. Yes. Even into middle school, I was doing a lot more for him than maybe the average parent. But hey, you do what’s right for your kid. And I gotta tell you, it is strange to hear the beeping and know that he will take care of it. I can’t believe how little I do for Benny’s diabetes these days, when your kids diagnosed at two. There’s not a lot of fun of independence at that age. And we didn’t push him to be super independent. Although I that’s kind of a lie. I mean, I say did everything for him. But when he was not at home, he could do everything. So we gave him a lot of freedom. And he was going to friends houses in first grade. He was doing sleepovers when he was eight years old. I sent him to camp and on diabetes camp for a month. So I take that back. But what I mean is when he was old, we did a lot for him. I remember checking his blood sugar, you know, he just stick his hand out when he was in like seventh grade when he was home and thinking to myself, when is this going to end but knowing because I got great advice from you guys not to push him and lo and behold, I do nothing. I do some nagging. That’s not gonna change. But that beeping just reminded me a little idea. I’m here if he needs me, and he noticed that.
All right, thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I’m Stacey Simms. I’ll see you back here in just a couple of days until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.