"We Must Change This" - Advocating for Type 1 Diabetes and COVID Vaccinations
Release Date: 02/23/2021
Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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As the COVID vaccine roll out continues in the United States, many people with type 1 diabetes feel like they’re in danger of being left behind. Why is this happening and what can we do about it? Hear from long-time advocate Paul Madden. He's lived with type 1 for almost 60 years and he's been fighting for the rights of people with diabetes almost as long.
Stacey & Paul talk about what the science says about COVID and all types of diabetes, why the priorities are different state to state and what we can all do to be better advocates.
In our Innovations segment this week,
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, as the COVID vaccine rollout continues here in the United States, many people with type 1 diabetes feel like they're in danger of being left behind. Why is this happening? And what can we do about
Paul Madden 0:40
The science is very clear that type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that make sure the Department of Health knows that because we've got to change this and the science is clearly there.
Stacey Simms 1:01
That's longtime advocate Paul Madden, one of many leading the charge to get people with all types of diabetes higher up in the vaccine priority lists in every state. We'll talk about what's going on here. And action we can all take
in our innovation segment this week, preventing type one and the tiniest patients, a new European studies looking at babies, and another new study this one about closed loops and kids. 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 always so glad to have you here. We aim to educate and inspire about diabetes by sharing stories of connection with a focus on people who use insulin, my son was diagnosed with type one more than 14 years ago, he just turned 16. Recently, my husband lives with type two diabetes, I don't have diabetes of any kind. But I have a background in broadcasting. And that is how you get the podcast.
And longtime listeners who have heard me say that over and over again, know that over the years, this podcast has evolved, you know, where I used to focus only on type one. And then I got a lot better educated, frankly, about the strength of the diabetes community overall, and learned that a lot of people with gestational or type two or other types of diabetes, listen to the show because of the focus on insulin use and the technology and a lot of the research. And it's topics like this one that I'm focusing on this week that really drive home, how much we have in common and how we need all hands on deck the entire diabetes community when we're talking about something like the COVID vaccine, and getting priorities in order. So I'm thrilled that our focus has kind of widened out over the years. And it's thanks to a lot of better education by listeners, you know, like you talking to me about the needs of the community. And I think people like Paul Madden, and you'll hear more about him and his advocacy coming up, really drive home how much we all need to stick together.
I also want to point out if you don't already know in our Facebook group, Diabetes Connections, the group, we have an ongoing discussion and some posts about what is happening state to state I've asked people to share from their state health department what is happening where they live, so that if you want to check in, and you're not exactly sure where to find your prioritization in whatever state you live in, you can pop into Diabetes Connections, the group on Facebook and find that information out pretty quickly. And if you know the right website and your state, please come in and add it.
I have to tell you about something that happened in North Carolina recently, and this became a mainstream news item where I live in North Carolina. And this was a billboard that went up I will share this in the Facebook group. And it was a billboard that went up I believe in late January. And it said Governor Roy Cooper, our governor here does not consider type 1 diabetes an underlying health issue. Think about that. That's what it says on the Billboard in late January when I believe this billboard went up. Type 1 diabetes was not considered a priority for vaccination in North Carolina. That has since changed, but a lot of people garnered a lot of attention. This billboard went up in Johnston County, which is in the eastern part of the state. It's kind of Southeast Raleigh. I don't know if it's deep enough east to be called down east, as we say here. It's not quite toward the beach or that area. I believe there is an Ava Gardner Museum though, in Johnston County. That's kind of its claim to fame. As far as I know. Please don't correct me on that. You can you can correct me if you want on that. Send me your Johnston county emails, but really interesting stuff that somebody paid for it. The billboard company was contacted by the media outlet that did the story here was a Raleigh TV station and they said this isn't an anonymous person who bought the ad space. All I know, they said is what's in the message. But since that billboard went up, and I think it's still up, things have changed. People with type one and type two are now in what they're calling group four here adults at increased risk of severe illness. As of this taping, I'm taping this on February 19. We are on group three frontline essential workers so Hopefully we will get to people with diabetes and others with severe illness who are under the age of 65. And don't fit the other groups pretty soon. I don't know, maybe by mid to late March, but it is really a moving target.
And I think that's important to keep in mind as you listen to this interview. And you think about this discussion. I talked to Paul this week. And as I am taping on the 19th, everything he said, is still in effect, but it could change by the time this episode is released, which is February 23. So if you're listening to this live on that date, I will post on social media if things change and of course, come visit the Facebook group to find out more of what's happening in your state. I'm optimistic that type one is going to move up as people get better educated and advocacy steps up across the country. But you know, it is a moving target like much of the vaccinations across this country.
Alright, Paul Madden, and what you can do coming up in just a moment, but first Diabetes Connections is brought to you by Dario. Health. You know, one of the things that makes diabetes management difficult for us. I mean, that really annoys me and Benny, it's not really the big picture stuff. It's the little thing that's all the little tasks adding up. Are you sick of running strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash Diabetes Connections.
My guest this week is probably one of the busiest people in the diabetes landscape that you will ever meet. He really has. I don't think he's done at all. But oh my gosh, Paul Madden has been on the frontline of advocacy for a very long time. He worked for 30 years at the Joslin Diabetes Center in Boston. He also worked at Johnson and Johnson with Animas, he has been part leadership roles at children with diabetes. He's been a part of the diabetes education and camping Association, the Association of diabetes educators had a large leadership role advocating specifically for people with type one at the American Diabetes Association. And he spoke last year, you might have seen him he was at the White House announcement on insulin pricing.
Paul was diagnosed with type one when he was nine years old. And that was almost 60 years ago. And he talks a little bit about that in my interview with him. But I have seen Paul on social media advocating for the COVID vaccine prioritization for people with type one. So I reached out and I was really happy that he agreed and had time to join me. This is also a video interview, it's over on the YouTube channel. And I'll link that up in the show notes. If you would prefer to watch that the video is a little bit different. It is a little bit longer. And you will see exactly what we're referring to here right at the beginning. But you can certainly listen to it just as easily. You're not going to miss anything. If you just listen to my interview with Paul Madden. Paul, thank you so much for joining me.
Paul Madden 8:01
Stacey . I've watched your podcasts and I know that you're getting right information out to us all and our diabetes world all 34 plus million of us here in the US. Yeah,
Stacey Simms 8:11
well, I appreciate that. I'm grateful that it's generally an audio podcast with these video segments put in because as you can see, my production is sometimes a little wonky. We hit this at the exact right time for the sun to be setting on my window. So we've got some interesting stripes on me with the light. But we'll work around that. Yes. You're here because you have so much great information about type one advocacy, specifically right now around the COVID vaccine and prioritization. Let's just take a step back. Can you talk a little bit about the situation? We are in the middle to late February at the moment where things stand? I mean, the US has a bunch of different policies where things stand for people with type one right
Paul Madden 8:49
now. Yeah, I'll give you a couple of scenarios of where it stands right now, Stacey . And regrettably, we can't define it well for every state without going into this state COVID Medical policy, but generally the CDC put out their announcements, and they said something to the effect. I won't quote them, but I'll paraphrase. But they did recognize that type two diabetes was a higher risk and a priority for earlier vaccinations. And that is very correct. Unfortunately, their wording for type one was far more nebulous, far less clear. And they said that for type one insulin dependent diabetes, we suspect it could be a higher risk.
Now the challenge is, as you know, Stacey , we have approximately 1.6 million people in the US with active type 1 diabetes of all ages, you older guys and gals and folks like me, and very young little babies, little kids and all the way in between the type two population. It's over 32 million and so very quickly within the first few months of COVID, after February, March, they saw the data from the hospitals from the treatment centers, the ICU that said, Wow, type two diabetes is about a 3.3 times greater risk of serious complications than the citizen without diabetes. So they correctly log that in there, unfortunately, and we're saddened by the fact and I and others, it's it's never alone. It's always a group of us.
But I reached out to the ADA, the JDRF, the the diabetes patient advocacy coalition, the leadership and diabetes group, and I children with diabetes, a group that you and I know, well. And 18 groups finally signed on when we sent a letter to Dr. Redfield, who was in charge of CDC. And we said, Please, sir, there's some new data, some new science that started to come out beautiful science in November, December, and a new article just came out in January to say, type one? Absolutely. If you give COVID Is it the same high risk level and one study imply there could be a little bit higher risk than type two? So six states have made the change? And have said, Absolutely, let's do it. Some states haven't defined type one and type two in their state policy, because remember, the CDC allowed the states to determine who gets the vaccinations on their state schedules, I got involved very much in Massachusetts, because unfortunately, they did distinguish, and they still have not changed the Priority Ranking for type one. And we're very discouraged by that. very discouraged. So the type one population, our kids get no priority. If you're over 65, we can now start to get it just because of our age tomorrow. But that's not enough. We've got to get all people with type 1 diabetes at the same Priority Ranking for vaccinations. So that's what we dug in, we're trying to get, we have a sense that we're going to get a meeting with the COVID Committee, the medical leaders here in Massachusetts, I know others are doing the same.
So we only again, know of six states that have put type one in with type two. But as I'm talking to more and more advocates throughout our country, I'm learning that some again, like I said earlier don't distinguish. And they allow type one and type two to be together both as a high priority ranking. But we don't think that's more than about 20 to 25% of our states. And we don't have a definite number on that. So we got to keep pushing.
Stacey Simms 12:38
I'm in North Carolina, as you know, and they did not first but they did slide type one up. And you know, a question that came up early on. And again, we want it to all be the same we want, again, we want that type one higher, but who would check and what a burden to kind of put on these health care workers who are giving vaccinations? I mean, I get it, if you're going up to kids, if you're a 12 year old, they're gonna say type two. But if you're 40, is someone going to be standing there saying, Well, what type do you have? What's your a one? See, show me your insulin pump? You know, it just seemed to put a burden on folks.
Paul Madden 13:12
Yeah, we certainly did with this. You know, we haven't done this, as you know, since the Spanish Flu 1918. But none of us were around, you know, maybe 30 people around, but they can't really relay the story very well. They were three years old.
Stacey Simms 13:27
And I hate to use a little dark humor. But people with type 1 diabetes were not included. They hadn't even figured out insulin at the last time
Paul Madden 13:34
we checked I was pretty insulin era. Exactly, exactly. Right. So we've got to keep pushing and you know it Stacey advocacy. And for everyone who's participating in this advocacy is about getting the science clear. Having good backing, making sure you have some spokespersons from healthcare who are specialists in diabetes. I am a psychologist. I'm a diabetes educator. I know my diabetes, my personal diabetes of 59 plus years, and I've been an educator in it for 47 years, so I know it well. But I also realized that I often need to make sure I've got several physicians and other healthcare providers lined up and that we have done. Several people that have said, Yes, the Joslin clinic came roaring through and said, What do you need from us? We've got it. And they just sent me another article today that I can submit to the governor's office and the COVID Committee. And that's the type of things that we have to do. There's not enough people that get paid to be advocates. And I want to stress that and I wish that there were and I know the diabetes organizations wish they they had so much money that they could easily hire more people to do these things. So it really relies on us. The volunteers also offered to put the pieces together again working though, and supporting those diabetes health care providers.
Stacey Simms 15:00
So if someone isn't an individual, they're not affiliated with a formal advocacy group, and they're in a state like Massachusetts or another state where they haven't put the type one priority higher. What do you do? What do you call?
Stacey Simms 15:18
Right back to Paul answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke Hypopen comes in. It's the 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.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.
Now back to Paul Madden answering my question of what are we supposed to do? Who do you call?
Paul Madden 16:08
Yeah, I think most people bombard their diabetes specialist team phone number and email which was by the young people especially. And typically, the diabetes professionals in our states know who the advocates are. And if they don't, and they're seeing this, I want to encourage you to find out who your your statewide volunteer advocates are, and know the people from JDRF, from ADA, from the diabetes, DPAC group, patient advocacy coalition. They're quite a remarkable group. This is to pay staff and a bunch of wonderful volunteers, some very top senior business leaders who have been in diabetes for a long time, including the nonprofit world in diabetes, and they volunteered their time for this. So your medical professional should know. And then we the people living with diabetes should get to know these advocates also, because there will be other issues. This is a big one right now. But there's other big issues, the whole reimbursement, the medical switching, all of these things that make no sense whatsoever.
Stacey Simms 17:14
Yeah. so in this situation, though, you would think it's better to call the people that are already working on it, rather than your congressman or your health department, or things like that?
Paul Madden 17:24
Well, no, I think rather to coordinate with the people that are already working on it. But no, Stacey , you bring up a great point here, you and I and all of us have to be wonderful employers. And by that I mean, our state representatives, our federal senators and representatives, they work for us whether or not you voted for them, they are in office and taxpayer dollars, pay their salaries and benefits packages. And again, we've got to be a cooperative employee, employer, but we they do work for us. And we have to make sure they understand that this is a priority for 1.6 million people in the United States that live with diabetes. Absolutely. Yeah.
Stacey Simms 18:08
I don't know if you can answer this. But I'm curious. Do you think that when the CDC put out those guidelines, and when states like Massachusetts aren't listening to advocates like yourself? I think not taking type 1 seriously? Do they maybe not understand it? They don't they think it's just kids? What do you think's going on?
Paul Madden 18:26
Yeah, so maybe it's not a full understanding, but that the medical experts on the COVID committees, typically, and I'll speak for Mass. These are good doctors. Yeah, they know medicine, but they also are not diabetes specialist. And the thing again, I'll go back to the does hinder us some, when you're trying to collect quick data on a crisis like this a COVID crisis, it takes five to six months to get enough, a big enough and a big enough group of people with type 1 diabetes that have had COVID. I respect that they went after this from the very beginning with What does healthcare show us? What does the what's the medical condition? Because we got to rank order this I appreciate that I even though I'm a psychologist, I always go after what's the medicine say first before I start to speak, and I surround myself with bright people who are endocrinologist who are brilliant research scientists, and they share things with me so I can understand it. And I can pass it along. But we've got to get the message.
I tell you what I think is happening. This is a frightening crisis financially, for every state for an awful lot of good families. Some adults are out of jobs for the first time in their lives. And maybe they have a child and maybe even two children that happened to have diabetes or some other added concern that costs a lot of money. Sometimes, you know, some people have gone into more of a survival and I respect that and we are in a survival state of mind. It's hard to process more information coming in. And I'm aware that there are many groups right now approaching and I'll speak specifically for mass COVID. Committee, but it's all of the committee's in every state of saying, How come my condition is not a priority? How come this is not a priority. And I just would say to all of us that our diabetes will stick with the science, get medical people aligned with you. I remain very discouraged right now. But I remain very positive in the way I state things, because we must change this. And that has to change soon. I think the committee's are sometimes so overwhelmed with so many emails, and so many calls. And that's why I go to groups like Joslin, like Harvard for their backing. And I've pulled called in a colleague who was a good friend of a friend who knows the governor. So we're doing those types of things that we all of us will know someone who knows someone. And boy, you got to do that you have to win advocacy work? Yeah.
Stacey Simms 21:08
It's difficult to say the least I'm glad. I mean, I know how I would want to prioritize it. But I'm glad I'm not the person who has to prioritize it.
Paul Madden 21:17
Very challenging, difficult. And that's why they can put a little bit of a protection in front of themselves by saying, we understand the science clearly says this now. So now we must change this. And if you stay on the science, and that's it, the science will guide you with the wisest of decisions. Yeah.
Stacey Simms 21:37
I'm curious, Paul. And we will probably talk more about vaccinations as we go forward here. But how have you been this last year? You know,what have you been up to? I see all of your conference tags behind you. Obviously, we haven't been going to those conferences. How are you all doing?
Paul Madden 21:53
Yeah, I you know, it's challenging for me. And let me personalize it. It's challenging, challenging for me, for my sister's family, my brother's family, for cousins, all of us. We've actually done some zoom calls with cousins. Who ever would have thought I would have done that I would have just driven you know, 50 miles away to see my cousin. Right. early on. I you know, I had launched my business in after going into semi retirement and we had some family, a family challenge with a health issue with a wonderful loving family member. So I decided, oh, she's 68 years old, you can step back a little bit and focus more on family right now. And I appreciate that I had that that luxury, truly do. But then I realized and he's doing great. cancer free for the first time in over a year after seven years of dealing with a challenging cancer. So we are so blessed. And I realized, oh boy, you better get going. So I launched my business in January of last year. 2020. Wow. Robust February, and then the day flew home from the diabetes technology meetings in Madrid. I saw in a CNN screen in English, the first case of Corona Coronavirus, identified in Madrid, I had no idea what that meant. The last Sunday in February. Wow. What did I know that four to five weeks later, because I've had diabetes for so many years. Because I am over 65. I said, I just took a breath and said, You know what? You need to shut down. I certainly kept doing some present zoom presentations, some FDA work and all of that. But I really basically shut down what I was doing. You know,
Stacey Simms 23:34
from your perspective, you're much more dialed into this. Is this a question of sit tight, it's coming, push where you can? Or is there a voice in your head saying this is gonna take forever? We're not gonna get people with diabetes vaccinated until summer, or later, or? I'm not sure what I'm asking Paul. But I'm just sometimes I could lay awake at night and worry.
Paul Madden 23:51
Yeah. And so they're opening it up for me at over 65 tomorrow in Massachusetts. So I'll get it the first one within the next three to four or five weeks. Okay, at least I have an identified timeline now. But I do worry about the rest of my younger friends. I do. And I would say again, you are and this is on a state level. Now, your state senators and state representatives work for you. The science is very clear. That type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that. Make sure the Department of Health knows that and absolutely call and ask your state senator and state representatives to work on your behalf or your loved ones behalf because we've got to change this. And the science is clearly there. It's on the ADA web page. It's on the JDRF web page. And clearly you can get a hold of the science and you look up COVID and diabetes right now. Did this morning, and some of the more prominent good studies are listed, including now to type 1 diabetes to
Stacey Simms 25:07
show wonder, I don't know if I agree with this, but I've heard a few people say that one of the issues was almost self created by at the very beginning of the pandemic, people feeling that there. And maybe it's because there wasn't enough information, but that people with type one who got COVID did not have as serious cases as people with type two, and somehow separating that out and saying, It's okay, we're gonna be okay. We don't have to worry as much because I remember seeing those posts back then. But as you're saying, the science doesn't bear that
Paul Madden 25:35
out. If you get it, you know, if you have type one or type two diabetes, there's no you have no greater chance of getting coke. Right, you know, thank goodness, so, so mass, washing hands, social distancing, all those things are crucial. And I just say to everyone hang in, the light is at the end of the tunnel in the months ahead, and I want to shorten it to a few months, not several more months. And that's why I'm saying for people with diabetes, and for our loved ones, you know, and maybe it's your neighbor, it's three houses down, who signed, married, the governor's daughter, I don't care what the connection is. It's been important our health, it really is. And that's networking at the fullest. And it's amazing to me, some of that my grandmother, one of my grandma's was an incredible network. And I think I probably got it from her and then passed along by my mother. You know, that's what you've got to do right now.
Stacey Simms 26:30
I'm curious to you know, do you think going forward, there are any lessons in this for the diabetes, the whole diabetes community, not just type one and lessons and all this?
Paul Madden 26:40
Yeah. So I think there are a couple of lessons and thanks for asking. I think the lessons are that, based on the science, standing together, we can change wrong agendas throughout our country relative to diabetes care. In this case, I mean, care for COVID prevention, vaccination, but for everything, and I need it for every new technology and drug that gets out there. If we stand together, just because you get the CGM. And if your other friend who's a senior or 12 years old, doesn't have the CGM help push for them. We are one family of 34 plus million people with type one or type two diabetes. I know the rest have distinct differences. But there's a lot of commonalities. And together that's an awful lot of votes for anyone who is serious about continuing in the political world. And I think we have to approach it like that. And it is a question of the blunt statement, the quality and quantity of one because Paul Madden has had access I had like like you and your family does with your son. I have been blessed. My mother and father knew nothing. When I was diagnosed. 59 years ago, there were under 3 million people in this country with diabetes. Wow. And it was it was closer to two is what I'm told, right? 34 plus million now. It's unbelievable. So diabetes really wasn't discussed. In fact, it was all the poor kid. He's got it. Yeah. Because people didn't survive. And my mother and father with my medical team at you have and I will say and we had a family practitioner, he diagnosed it. I was nine years old. I was peeing the bed like Niagara Falls.
I didn't know what was going on. And my sheets actually were sticky. So yes, folks, there is sugar in the urine. And I was heartbroken and I dropped 10 pounds. It was a healthy little boy. I would drop 10 pounds in five or six days. And the family doc said to my parents I was in the room and he said Mr. Mrs. Madden, Paul, I don't do diabetes and children, but the Joslin clinic is 15 miles away, and I'm gonna make a referral over there. And hallelujah for the next 30 years Dr. Leo Kroll and his team at Joslin imprinted on me beautifully on my parents, you know, my father walked me out into the courts when I was I guess it was 10 at that point, my first full summer with diabetes and walked me on the court to meet Bill Talbert, the first professional and the first athlete ever that was named number one or two in the world that happened to have insulin dependent diabetes, Bill & I became good friends for the next almost 50 years before bill passed in his late 80s. But that was the exposure my parents made sure I got and that's that's what all of you have to do to to the best of your ability.
You know, one reason I have stepped down after two terms in six years on the children with diabetes board, I just tell everyone and as you know, Stacey , it's it's we call it children with diabetes, but approximately half of the people come now are adults with type 1 diabetes. And I forget the numbers, Jeff Hitchcock sentences that over 5000 people did the Virtual Education because we couldn't meet in person. Oh, it was amazing. It was amazing. And you will find that yes, absolutely. But the camaraderie you get from that, and we bring in some of the finest speakers in the world who say yes. And typically they do it for free. That's unbelievable. They fly from all over. And not just sometimes the US from other countries even, you know, so it's that type of cost and peer support, because let's face it, kids with diabetes don't live there. They don't probably don't have six other neighbors in their neighborhood that are also kids with diabetes. No, no, do us adults who have type one diabetes, I don't know anyone who lives within three miles of me, that's not fair. I do know one gentleman who's had type 1 diabetes for 65 years. And we've known each other for 50 plus years. But other than that, I don't know who else has type 1 diabetes in the neighborhood. So Martin, and I go off a walk sometimes. And it's an absolute pleasure. And we do support each other.
And it's the power of support when you're dealing with something you wish the heck you didn't have. And you know, you got to move through it. So you have the fullest, most robust and the happiest of lives, that peer support can be rather powerful. That's why I think a well run diabetes camp, I think, the support education groups at some of the organizations. That's why I think the podcasts are so crucial. I think things like this station that you and others are doing consistently, a very powerful to convey information. And again, you and I know as long as people remember that Paul said, what he does with his diabetes, gives me great results. Yeah, but remember, folks, I do it with my medical team who's coached me and always coach me. And if I ever had a problem, I can't figure out the answer to what I do. I'm a diabetes educator. But but when it's a personal thing, you don't stay as objective and you don't sometimes pull out all the science, right? When you're talking about yourself or thinking about yourself, I pick up the phone, and the young people probably send the email more frequently than I do. That's okay. Whatever your line of communication is, that's the important thing to promote the most robust health so that diabetes is an element of your life, but never hinders your life. That's the goal. That's the goal.
Stacey Simms 32:30
Paul, thank you so much. I could talk to you all day. You're inspiring on an I don't know, I'm gonna probably regret saying this. But you are inspiring on kind of like an everyday getting it done. level. You know, you and I are not people that are going to go up Mount Everest, I don't think you've been at Mount Everest.
Paul Madden 32:47
You know, I have a few merits. I know, I'm not gonna do Everest. I'll leave that to the world crushes.
Stacey Simms 32:56
But I just love it. And I'm so glad to hear your family members doing better than doing well. So stay well. Keep us posted. Thank you for your incredible advocacy. And let's follow up as more information comes in and you go give them Helen, Massachusetts, Paul.
Paul Madden 33:11
Absolutely. Listening, call your state reps and Saturdays, please. Thanks.
Unknown Speaker 33:23
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 33:29
More information about Paul and about the COVID vaccine and what we can do, and more advocacy from the groups that he mentioned. I'll put that all in the show notes at Diabetes, Connections comm you can always find the episode homepage there. I always say this, but it's a little difficult sometimes in the podcast apps to find the links. So if you have any trouble, just head on back to the homepage, and it is always there for you. I want to make this as easy as possible. So if there's a better way to do it, or you need more info, always contact me Stacey at Diabetes connections.com.
We're going to talk about a new study looking at prevention of type one by focusing on babies. And a new study that I gotta tell you is a no duh. I mean, who was surprised by this kind of study, but that's coming up in just a moment. First, Diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, this is their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. And it really helps me and Benny just dial back and see longer term trends helps us not overreact to what happened for just one day, or even just one hour. The overlay reports help put context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us. Find out more at Diabetes connections.com and click on the Dexcom logo.
Our innovations segment this week features a couple of studies that focus on kids. And this very first one is really for the tiniest in the diabetes community. It's a study that just started and it's looking at the correlation of the antibodies that appear in people with type 1 diabetes, as well as intestinal flora in early childhood. So basically, what the heck is going on in the gut in people who go on to develop type 1 diabetes, the study, and I'm not sure I'm pronouncing it correctly, I'll link it up with a study is center one, a si en T one, a. And it's going to start in the spring this year, in a few European countries, as part of an international initiative to prevent type 1 diabetes, it follows another study that they're all doing called point, which is administering insulin orally in the hopes that it would somehow it says your train and sensitize the immune system at an early stage so that auto immunity against insulin does not occur. So if the results were both studies show what they're hoping they're going to combine them for what they hope will be a type one prevention strategy, really interesting stuff. And I will link up this study. Again, it's not open here in the States. This is happening in Europe, but really interesting study. And I will link up more information. Again, it's happening in Europe. So it's not open for people in the United States to take part in. But hey, I'll keep you posted.
The other study I want to talk about this week, and I mentioned this earlier in the show as like a real Hey, no duh type moment. But hey, these things have to be studied. I will read from the endocrinology network where I saw this written up, and they say, a closed loop control insulin delivery system could be safe and effective for use in adolescents and young adults with type one diabetes, according to the results of the International diabetes closed loop trial. Shockingly, I added that results of the study indicated use of a closed loop control for six months resulted in improved time and range and reduced incidence of hyperglycemia. In younger patients with type one diabetes, I shouldn't get around because they do need to prove these things. We do need to you know, make sure that there is clinical evidence before we move forward. But you as you listen, know, many of you have been doing DIY for many years, and you know this to be the case, I will make it up. Interestingly, as in most of these studies, the biggest improvement was in overnights, right, a lot less overnight, low blood sugar hypoglycemia, which is amazing. And I can tell you just from experience with Benny on what I call a hybrid closed loop, but Tandem is control IQ is one of those used in this study. So they're calling a closed loop. But I mean, he wakes up almost every morning, not only in range, but he wakes up almost every morning between 90 and 115. I mean, you know, for a 16 year old, it's pretty amazing. And I think that overnight sleep for everybody, it gets so much better. And that in and of itself is such a great health benefit. So I'll leave that study up as well.
Next week, we're gonna be circling back to tell me something good. So I need your good stuff for the show. You can hit me up Stacey at Diabetes connections.com. I will post to the Facebook group and I'd love to hear what's going on that you want to celebrate.
Okay, before I let you go, I need to let you know that this was really weird. I had a crazy low blood sugar in the middle of this episode. Right after the dex comment that you heard. I pressed pause and I was feeling shaky and sweaty and I really was having trouble getting through it. I went downstairs and I checked my blood sugar with one of Benny's meters. And it was 46. So I scurried around and got some peanut butter crackers, I probably should have had a juice box, I wasn't really thinking clearly shockingly. And I sat down and ate the crackers and waited for my blood sugar to come up. And boy, I gotta tell you, it's no shock to most of you. I was so hungry after that. And we're about half an hour away from dinner and slaves making a great dinner and I was so hungry, but I waited. And now I'm upstairs again, where my office is recording the podcast.
It's not the first time that I've had a low blood sugar like that, that I've measured it that low. And I've talked to my doctor about it, I actually had a low blood sugar, the first time that I remember really measuring it several years ago at friends for life. And I checked it in the middle of the vendor Hall and it was it was in the 40s. And of course you know, you've got what a great place to have a low if Rudy was bringing me gummies and tabs and taking care of me. But you know, again, I don't have diabetes. And I don't have I don't think this is the right name for it. But I don't have like chronic hypoglycemia or anything dangerous. My doctor just has told me that I'm the kind of person that needs to eat every couple of hours and I need to be careful that I don't just eat empty carbs during the day that lunch and breakfast, have protein and all that good stuff. So today for the first time in a long time. I had a lunch that was not smart and it was delicious, but it was very carb heavy and I've been eating really lower carb for the last couple of months. So I just didn't have a lot of stuff in the house. Slade was at the grocery store. I had cheese blintzes for lunch. They were delicious. I'm not sure if they were working 46 blood sugar a couple of hours later, but there you go. So True Confessions all man, low blood sugars, they just suck. They feel like garbage. And I'm really happy that I'm feeling better. But I was sweating and low and shaky. And I think that feeling of wanting to eat everything after it's so difficult, I will follow up if I need to. I take very good care of my health and I take these things seriously. But I wanted to let you know that that happened while I was taping the show. How weird
All right, a classic episode coming up in just a couple of days. We're gonna be taking a look back at Jerry the bear. And this is not during the bear as you know him today. This is a much earlier incarnation of Jerry and the great people who created him. It was so much fun to talk to them five years ago now man, I love these classic episodes. I hope you're enjoying them.
Stacey Simms 40:48
Thank you so much 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 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