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In this special episode on Early Identification and Delay of Type 1 Diabetes, Dr. Neil Skolnik this emerging area with Dr. Jay Shubrook. This special episode is supported by an independent educational grant from Sanofi. Presented by: Neil Skolnik, M.D., Professor of Family and Community Medicine, Sidney Kimmel Medical College, Thomas Jefferson University; Associate Director, Family Medicine Residency Program, Abington Jefferson Health Jay Shubrook, D.O. - Professor and Director of Diabetes Services, Touro University. Past Chair, The American Diabetes Association Primary Care Advisory Group, Past Chair of the American College of Diabetology. Selected References and Resources referred to the in the Podcast: Webinar Registration (Apr 28, 2025 10:00 AM): Early Detection Saves Lives: Implementing Type 1 Diabetes Screening in Pediatric and Primary Care References: Consensus guidance for monitoring individuals with islet autoantibody-positive pre-stage 3 type 1 diabetes. Diabetes Care 2024;47(8):1276–1298 An Anti-CD3 Antibody, Teplizumab, in Relatives at Risk for Type 1 Diabetes. N Engl J Med 2019;381:603-613 Resources for Auto-antibody Testing: Type 1 Diabetes TrialNet Centers of Excellence Locations Type 1 Risk test Trialnet
It's In the News.. a look at the top headlines and stories in the diabetes community. This week's top stories: New drug is looked at for T1D prevention, a new stem cell method is tested for beta cell transplanation without immunosuppresion drugs, the FDA okays the first fast-acting biosimilar insulin, Lilly lowers price of Zepbound, and more! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Omnipod - Simplify Life Learn about Dexcom Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Facebook (Group) Facebook (Page) Instagram Twitter Check out Stacey's books! Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com Episode transcription with links: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX New research in type 1 diabetes prevention launches. Nektar Therapeutics and TrialNet will evaluate a drug currently used for exzema for patients with new onset stage 3 type 1 diabetes The drug is RezPeg – that's a shortened version of the name (rezpegaldesleukin) This will be a study of about 70 adults and children and will launch this year. The new study will use a mixed meal tolerance test (MMTT) to measure the efficacy of rezpegaldesleukin or placebo for preserving C-peptide area under the curve over a 12-month duration comprised of a 6-month treatment period and a 6-month follow-up. Secondary objectives include pharmacokinetics, pharmacodynamics, and additional disease assessments including HbA1c levels and patient insulin requirements. Rezpegaldesleukin is being developed as a self-administered injection for a number of autoimmune and inflammatory diseases. https://www.prnewswire.com/news-releases/nektar-announces-clinical-trial-agreement-to-evaluate-rezpegaldesleukin-in-patients-with-new-onset-type-1-diabetes-mellitus-302383052.html XX NLS Pharmaceutics (NLSP) and Kadimastem announced successful completion of a pre-IND meeting with the FDA for iTOL-102, a potential diabetes treatment. iTOL-102 combines Kadimastem's IsletRx cells (stem cell-derived pancreatic islets) with iTolerance's immunomodulator iTOL-100, aiming to cure Type 1 Diabetes without requiring life-long immune suppression. The treatment was evaluated at the Diabetes Research Institute at the University of Miami School of Medicine, where it demonstrated functional insulin release and disease reversal in animal models. Based on FDA feedback, the companies are updating plans for safety toxicology studies and First-in-Human clinical trials. IsletRx is a clinical-grade product comprising human pancreatic islet-like cells capable of secreting insulin, offering a scalable source of insulin-producing cells to address donor islet shortages. The technology can detect glucose levels and produce required amounts of insulin and glucagon. XX FDA has signed off on a rapid-acting insulin biosimilar for the first time. The agency has given a thumbs up to Sanofi's Merilog (insulin-aspart-szjj) as the first biosimilar to Novo Nordisk's NovoLog for patients with diabetes. Merilog will be provided by prefilled pen in a 3 mL dose or in a multiple-dose 10 mL vial. It is for adults and pediatric patients age 6 and older. NovoLog and Novo Nordisk's other rapid-acting insulin follow-on Fiasp are among the drugs subject to government price negotiations under the Inflation Reduction Act. The new prices will be enacted at the start of next year. In July 2021, the FDA approved Biocon and Viatris' Semglee (insulin glargine-yfgn) as the first biosimilar to Lantus. Five months later, the U.S. regulator endorsed Eli Lilly's version of the drug, called Rezvoglar (insulin glargine-aglr). https://www.fiercepharma.com/pharma/fda-signs-sanofis-biosimilar-first-novo-nordisks-rapid-acting-novolog XX Eli Lilly said Tuesday that it will offer more doses of its obesity drug Zepbound in vials and lower the prices of the doses it already sells, as the pharma giant seeks to draw patients away from cheap, compounded copies of weight loss medications. The company launched 7.5 mg and 10 mg vials of tirzepatide, sold under the brand name Zepbound, which typically cost $599 and $699, respectively. However, they are now available for $499 per month for patients paying without insurance. This applies to the first fill and all refills that are delivered every 45 days. Additionally, the company lowered the prices of the 2.5 mg and 5 mg vials to $349 and $499 per month, respectively. The company, which has seen a significant boost in profits from Zepbound and Mounjaro – essentially the same drug with different FDA-approved uses – announced that the new vials and pricing are exclusively available through the company's self-pay pharmacy, LillyDirect Self Pay Pharmacy Solutions. https://www.bloomberg.com/news/articles/2025-02-25/zepbound-cost-for-vials-cut-to-battle-cheaper-copycats XX Medicare spending on 10 diabetes drugs, including popular GLP-1s, more than quadrupled over a five-year period and could reach $102 billion next year, an analysis by Health and Human Services' inspector general found. The findings also come as the Trump administration weighs the fate of a Biden administration proposal that would require Medicare and Medicaid to cover GLP-1s for weight loss. The biggest spikes in usage were for Rybelsus, Novo Nordisk's once-daily GLP-1 tablet, and for the company's weekly injectable Ozempic, whose spending about doubled every year under review. https://www.axios.com/2025/02/25/medicare-spending-surge-diabetes-drugs XX Tandem Diabetes Care has secured a new FDA clearance for its insulin dose-calculating algorithm, opening up Control IQ for use in adults with Type 2 diabetes. The expanded label was based on data from a pivotal, randomized trial of more than 300 people with Type 2 diabetes, comparing its use to manual multiple daily injections. Tandem said it plans to present the study's results at the annual Advanced Technologies & Treatments for Diabetes meeting scheduled for next month in Amsterdam. https://www.fiercebiotech.com/medtech/tandem-diabetes-care-insulin-dosing-algorithm-nets-fda-clearance-type-2-diabetes XX Drugs approved for diabetes and obesity might be useful for the treatment of cognitive and mental health disorders, according to a new paper published in Nature Mental Health. The study reviewed and integrated data from both preclinical and clinical studies to gather evidence on the possible effects of these drugs GLP1s and semaglutide in conditions such as dementia, substance use disorders, psychotic disorders, mood and anxiety disorders, and eating disorders. The study found promising but still preliminary evidence that GLP-1RAs could be beneficial over a range of cognitive and mental health disorders. These drugs have shown potential in improving cognition, reducing addictive behavior, and alleviating depression and anxiety. More data from robustly designed studies (i.e., randomized controlled trials) are needed to better understand GLP-1RAs' prospective efficacy and safety profile, especially with long-term use. https://medicalxpress.com/news/2025-02-diabetes-drugs-mental-health-treatment.html XX The FDA issued draft guidance that includes recommendations to support the development and marketing of safe and effective AI-enabled The guidance, if finalized, would be the first guidance to provide comprehensive recommendations for AI-enabled devices throughout the total product lifecycle, providing developers with an accessible set of considerations that tie together design, development, maintenance, and documentation recommendations to help ensure the safety and effectiveness of AI-enabled devices. FDA is requesting public comment on this draft guidance by April 7. The agency also released draft guidance for the use of AI to support regulatory decision-making for drug and biological products. https://www.mddionline.com/artificial-intelligence/fda-issues-draft-guidance-for-ai-enabled-devices-seeks-public-feedback XX Congrats to Mila Clarke who some of you may know better as Hangry Woman on social. She has developed a great app called Glucose Guide and the Nutrition Assistant portion of that app went live this week. Glucose Guide is a web and mobile app that offers diabetes meal tracking, coaching, resources, recipes and community to those looking for help managing diabetes. MEAL AND BLOOD SUGAR TRACKING FEATURES.
It's In the News.. a look at the top headlines and stories in the diabetes community. This week's top stories: Dexcom updates investors on its 15-day sensor, TrialNet marks a big anniversary, Beta Bionics goes public, NFL fans support Mark Andrews and much more! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Omnipod - Simplify Life Learn about Dexcom Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Facebook (Group) Facebook (Page) Instagram Twitter Check out Stacey's books! Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com Episode transcription with links: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX Couple of quick updates from the JP Morgan Healthcare Conference. Dexcom's CEO Kevin Sayer expects to launch a 15-day sensor in the second half of the year. That's in front of the FDA right now. Competitor Abbott currently has 15-day sensors with its Freestyle Libre 2 Plus and Freestyle Libre 3 Plus devices, which the FDA cleared in 2023. Sayer also talked about expanded insurance coverage for the G7, to include more people with type 2. They haven't pursued that with Stelo, the OTC version of their sensors. The company has begun work on a next-generation CGM. Sayer said the sensor will be smaller, less expensive and include better electronics. Dexcom is also studying new sensor probes, one of which can support multiple analytes, such as measuring lactate or ketones in addition to insulin. https://www.medtechdive.com/news/dexcom-ceo-stelo-otc-strategy-jp-morgan/737424/ XX TrialNet reaches a big milestone – more than a quarter million people have learned their risk of developing T1D through screening. TrialNet screening is available to family members of those diagnosed with T1D. Having a family history of the disease places individuals at a 15 times greater risk than those with no family members with T1D. Over the course of VUMC's 18 years participating in the program, the community of T1D patients has become increasingly more engaged with research efforts. More than ever, there is an eagerness to give back to others by participating in clinical trials that could help revolutionize care for those diagnosed with or at risk of developing T1D. In such trials, TrialNet typically takes drugs already shown to be effective in treating other autoimmune diseases and seeks to determine their efficacy in treating, delaying or preventing T1D. Spencer Mannahan, a 10-year-old patient at Monroe Carell Jr. Children's Hospital at Vanderbilt, is participating in a TrialNet study that is looking to determine whether a treatment regimen using both rituximab and abatacept can preserve insulin production in patients newly diagnosed with T1D. Russell, one of the PIs for the study (Protocol TN-25), also treated Spencer's father, Zach, when he was diagnosed with T1D as a child. She enrolled in a different TrialNet study (Protocol TN-31) examining the effect of abrocitinib and ritlecitinib on insulin production in newly diagnosed individuals. While the possibility exists that her insulin production could be preserved, O'Neal joined the study because it presented an opportunity to make a positive impact on future patients. These clinical trials support TrialNet's goal of a future without T1D. Research is underway on new methods of blocking the advance of T1D in patients with diabetes-related antibodies. One study will investigate whether T cells that have been activated against insulin can be specifically targeted, rather than issuing a treatment that targets all the body's T cells (thus rendering the patient immunocompromised). TrialNet, the largest clinical trial network assembled to change the course of Type 1 diabetes, is funded by the National Institutes of Health through grant number NCT00097292. For more information about screening for Type 1 diabetes risk if it runs in your family, contact info@trialnet.org, visit www.trialnet.org, or contact the Vanderbilt Type 1 Diabetes TrialNet Program at 615-936-8638. https://news.vumc.org/2025/01/22/milestone-in-vumc-affiliated-diabetes-screening-and-research-program-underscores-impact-of-clinical-trials/ XX Another study links air pollution to type 2 diabetes. This is from Wayne State University, and established a robust association between exposure to benzene, a prevalent airborne volatile organic compound, and insulin resistance in humans across all ages. “In this study, we exposed mice to benzene to see how it affects their blood glucose levels and energy expenditure,” she explained. “Our research revealed that within seven days of exposure, they developed high blood glucose insulin levels.” https://today.wayne.edu/medicine/news/2025/01/23/study-links-air-pollution-exposure-to-type-2-diabetes-susceptibility-65321 XX Adults with overweight or obesity and type 2 diabetes who are given the sodium glucose cotransporter 2 (SGLT-2) inhibitor drug dapagliflozin alongside moderate calorie restriction achieve much higher rates of remission compared with calorie restriction alone. The researchers say this study provides a practical strategy to achieve remission for patients with early type 2 diabetes. As well as helping to lower blood sugar levels, SGLT-2 inhibitors can also lead to weight loss, but their effect alongside calorie restriction on diabetes remission has not yet been investigated in a randomised controlled trial. To address this, researchers carried out a trial involving 328 patients with type 2 diabetes of less than six years' duration at 16 centres in mainland China from 12 June 2020 to 31 January 2023. Participants were aged 20-70 years with a body mass index (BMI) greater than 25 and were not taking any anti-diabetic medication other than metformin. https://www.news-medical.net/news/20250123/Dapagliflozin-and-calorie-restriction-show-higher-remission-rates-in-type-2-diabetes.aspx XX Beta Bionics has set the terms for its plan to go public, with a goal of raising at least $114 million to support its artificial pancreas system for people with Type 1 diabetes. That's as we're recroding, it's likely they will have begun trading on the NASDAQ by now.. the ticker is BBNX. Beta Bionics' iLet system was first cleared by the FDA for people ages six and up with Type 1 diabetes in May 2023. The Fierce Medtech Fierce 15 winner has since expanded its blood sugar sensor compatibility to include Abbott's FreeStyle Libre and Dexcom's G6 and G7 platforms. The company also said it plans to pursue new clinical studies and an FDA clearance that would enable the iLet's use among people with Type 2 diabetes. The ultmite goal is to have a dual-chambered pump with both insulin and glucagon.. but I didn't find anything about that in the articles about this IPO.. I followed up with Beta Bionics and they told me that the dual chambered pump is still very much the goal. Not sure why most of the publications left that out.. but good to hear. https://www.fiercebiotech.com/medtech/artificial-pancreas-maker-beta-bionics-aims-raise-120m-nasdaq-ipo XX Large new study estimates the size of the current US population with type 1 diabetes and project growth over the next ten years. They say about 2 million live with type 1.. about 1.79 million adults and 290-thousand children. Growth in the ten years is predicted to be about 10% https://jheor.org/article/124604 XX The American Diabetes Association® (ADA) teams up with Xeris Pharmaceuticals® makers of Gvoke – ready to use emergency glucagon. It is estimated that up to 46% of people with type 1 diabetes and 21% of those with type 2 diabetes using insulin experience at least one severe hypoglycemia event each year.2 The ADA, with support from Xeris, seeks to rectify the low rates of appropriate glucagon prescriptions by developing education materials and training resources for health care professionals and people living with diabetes, as well as through a national awareness campaign to educate people on who is at risk for severe hypoglycemia and should have glucagon, preferably ready-to-use, as a safety net. https://www.prnewswire.com/news-releases/the-american-diabetes-association-and-xeris-pharmaceuticals-announce-national-collaboration-to-provide-life-saving-hypoglycemia-education-and-awareness-302355703.html XX XX Wearing a CGM makes pharmacy students better at counseling patients. New study randomly assigned students to wear a CGM during lab sessions.. those who did had a higher average counseling score during the encounter with a patient and a higher overall confidence score. There was also a statistically significant positive correlation between average confidence and average empathy, and empathy and counseling performance. https://www.drugtopics.com/view/hands-on-cgm-training-helps-student-pharmacists-prepare-for-career XX Mark Andrews Bills Mafia Baltimore Ravens tight end Mark Andrews received a host of negative attention after flubbing a potential game-tying two-point conversion in Sunday night's loss to the Buffalo Bills. In the face of the online rage, Bills Mafia is again showing some support. Bills fan Nicholas Howard kicked off a GoFundMe to back Breakthrough T1D, a global Type 1 diabetes research organization that Andrews has supported. "As many of you know, Ravens TE wasn't able to catch the game-tying 2-point conversion and upset Ravens fans," Howard wrote. "On top of that, the TE has been receiving death threats and nasty comments after his performance last night. We want Bills Mafia to donate to Marks charity for [Type 1] diabetes." As of Wednesday morning, the fund raised more than $50,000 for the charity. Related Links Lamar Jackson, Ravens bemoan missed opportunities in loss to Bills, defend Mark Andrews Ravens WR Zay Flowers: Missing 2024 playoff run due to injury 'took a little toll on me' Biggest winners and losers from Sunday's Divisional Round NFL playoff games The Ravens thanked Bills fans for supporting Andrews. "Shout out to Bills Mafia for showing support to our guy Mark Andrews and donating to the [BreakthroughT1D] organization, which works towards curing and improving the lives of those dealing with Type 1 diabetes," the club posted. Andrews was diagnosed with Type 1 diabetes as a child, an autoimmune disease for which there is currently no cure. He's one of several NFL players diagnosed with Type 1 -- Kansas City Chiefs tight end Noah Gray is another. "Breakthrough T1D [formerly JDRF] greatly appreciates the generosity of the Buffalo Bills community and the many fans who were compelled to donate after Sunday's game," the organization said in a statement to ESPN's Alaina Getzenberg. "These donations will support research and advocacy on behalf of the 1.6 million Americans who, like Mark Andrews, live with type 1 diabetes." It's not the first time that Bills fans have donated to the cause of a non-Buffalo player. Back in January 2018, Buffalo fans famously donated to the charity of former Cincinnati Bengals quarterback Andy Dalton after his win over Baltimore helped Buffalo make its first playoff appearance in nearly two decades. Over and over again, Bills Mafia has shown it will support a good cause when some spew hate. https://www.nfl.com/news/bills-fans-supporting-ravens-te-mark-andrews-after-drop-by-donating-to-type-1-diabetes-research
Why Everyone Should Screen for Type 1 – Featuring Anastasia Albanese-O'Neill, PhD, APRN, CDCES,Associate Vice President of Type 1 Diabetes Education 7 Clinical Implementation, with a focus on accelerating progress towards a cure; JDRF International.TAKING CONTROL OF YOUR DIABETES® - THE PODCAST! ...With Expert Endocrinologists Living with T1D, Drs. Steven V. Edelman & Jeremy PettusIn this episode of the Taking Control of Your Diabetes podcast, Dr. Steve Edelman is joined by a passionate advocate and expert in diabetes education, Anastasia Albanese O'Neil PhD, APRN, CDCES, the Associate Vice President of Type 1 Diabetes Education and Clinical Implementation at Breakthrough T1D International (former JDRF). As a mother of a child with type 1 diabetes, she brings both professional expertise and personal experience to the conversation. Together, they delve into the critical topic of screening for type 1 diabetes, exploring its importance and the benefits it offers to individuals and families.In this episode, we will talk about:Anastasia's journey and motivation in diabetes advocacy and researchThe significance of early detection and screening for type 1 diabetesHow screening can prevent diabetic ketoacidosis (DKA)The role of family members in screening and why their involvement is crucialRecent advancements in diabetes research and the impact of new FDA-approved therapiesThe importance of immunosuppression in diabetes treatmentCurrent methods and guidelines for screening and confirming type 1 diabetesPractical steps and resources for getting screened, including TrialNet and the ASK studyOvercoming barriers to screening in primary care settingsThe future of diabetes care and the push towards universal screeningScreen for Type 1 Diabetes: This resource provides information about screening for type 1 diabetes and available screening pathways: https://www.screenfortype1.com/TrialNet: A clinical study that offers free screening for type 1 diabetes to family members of individuals with the condition: https://www.trialnet.orgASK Study: This study screens children in the United States for type 1 diabetes and celiac disease using the same blood sample: https://www.askhealth.orgAmerican Diabetes Association Standards of Care: Information about the delay and prevention of diabetes, including type 1 diabetes: https://diabetesjournals.org/care/issue/47/Supplement_1FDA Approval of Teplizumab: Details about the FDA approval of the medication Teplizumab (TZIELD), which can delay the onset of type 1 diabetes: https://www.fda.gov/media/164864/download**Tune in for 2 new episodes each month! Like what you hear and want to help us grow? Please rate and review this podcast so we can reach more people living with diabetes!** ★ Support this podcast ★
Speaker of the House Mike Johnson says he wants a House vote on aid for Ukraine despite him potentially being removed from his job as Speaker. Plus, Charles Bryson of Trialnet on an increase in pedestrian deaths in St. Louis County.
CEO of Trialnet Cindy Mense joined us to discuss the push by Trialnet to hear about some of your horror stories from driving around St. Louis, in hopes of creating a safer experience for everyone.
Charlie and Amy discuss the continuous rise of AI technology and the often times scary use of it including the completely AI George Carlin comedy special. Plus, Cindy Mense of Trialnet and Matt Pauley.
It's In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: a new study looks at food-as-medicine for type 2, another FDA warning about fake Ozempic, new research says gut markers may help predict who Tzield will work best for, JDRF partners with NFL and more... Happy New Year - we'll see you in 2024! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Take Control with Afrezza Omnipod - Simplify Life Learn about Dexcom Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Facebook (Group) Facebook (Page) Instagram Twitter Check out Stacey's books! Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com Episode transcription: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark XX Our top story this week… XX You often hear people say food is medicine.. but an intensive program trying to show that's the case did NOT improve glycemic control in adults with type 2 diabetes any better than usual care. This was a randomized clinical trial. After 6 months, both groups had a similar drop in HbA1c -- 1.5 percentage points among program enrollees and 1.3 percentage points with usual care, with no significant differences in other metabolic lab values between the groups either, the researchers wrote in JAMA the food-as-medicine participants even gained some weight compared with the usual care group over 6 months (adjusted mean difference 1.95 kg, P=0.04). "I was surprised by the findings because the program is so intensive," Doyle told MedPage Today. "The health system built brick-and-mortar clinics, staffed them with a dietitian, nurse, and community health worker, had weekly food pick-up for 10 meals per week for the entire family, and participants spend a year in the program." Costing an estimated $2,000 annually per participant, the food-as-medicine program allowed participants to choose from a variety of vegetables, fruits, and entrees each week -- enough food for two meals a day, 5 days a week. They were also provided recipes and cooking instructions and met with dietitians to track goals. On the other hand, the control group was only provided usual care, a list of local food bank locations, and the option to join the program after 6 months. The trial was conducted at two sites, one rural and one urban, in the mid-Atlantic region. It recruited 465 adults with type 2 diabetes who completed the study, all of whom started with an HbA1c of 8% or higher. All participants were also self-reported as food insecure. The average age was 54.6 years, 54.8% of participants were female, 81.3% were white, and most resided in the urban location. Of note, all participants also resided in the program's service area and were affiliated with the health system that ran it. "One study should not be over-interpreted," said Doyle. "It is possible that such a program could work in other contexts, among patients less connected to a health system, or in other formats. The main alternative to providing healthy groceries and education is to provide pre-made 'medically tailored meals.'" "I hope the study raises awareness of the potential for food-as-medicine programs to increase healthcare engagement and to push researchers and policymakers to generate more evidence on ways such programs can improve health." It's worth noting that there is very little study – much less clinical trial level study on this type of thing. The researchers say they hope it spurs more research to find methods that will have a large impact. https://news.mit.edu/2023/food-medicine-diabetes-study-1227 https://www.medpagetoday.com/primarycare/dietnutrition/107998 XX New information about moderate low carb diets for people with type 1. The study published in The Lancet Regional Health - Europe is the largest of its kind to date. Participants were for different periods randomly assigned in a crossover manner to eat a traditional diet with 50% of the energy from carbohydrates, or a moderate low-carbohydrate diet with 30% of the energy from carbohydrates. The 50 participants all had type 1 diabetes with elevated mean glucose, long-term blood sugar, and injection therapy with insulin or an insulin pump. Half were women, half men. The average age was 48 years. Participants on a moderate low-carbohydrate diet were found to spend more time in what is known as the target range, the range within which people with type 1 diabetes should be in terms of glucose levels. The increase in time within the target range was an average of 68 minutes per day compared to the traditional diet, while the time with elevated values was reduced by 85 minutes per day. The researchers saw no evidence of adverse effects. https://www.news-medical.net/news/20231220/Moderate-low-carb-diet-safe-and-effective-for-adults-with-type-1-diabetes.aspx XX Researchers at Case Western Reserve University and University Hospitals have identified an enzyme that blocks insulin produced in the body—a discovery that could provide a new target to treat diabetes. Their study, published Dec. 5 in the journal Cell, focuses on nitric oxide, a compound that dilates blood vessels, improves memory, fights infection and stimulates the release of hormones, among other functions. How nitric oxide performs these activities had long been a mystery. The researchers discovered a novel “carrier” enzyme (called SNO-CoA-assisted nitrosylase, or SCAN) that attaches nitric oxide to proteins, including the receptor for insulin action. Given the discovery, next steps could be to develop medications against the enzyme, he said. https://thedaily.case.edu/new-cause-of-diabetes-discovered-offering-potential-target-for-new-classes-of-drugs-to-treat-the-disease/ XX The Food and Drug Administration on Thursday warned consumers not to use counterfeit versions of Novo Nordisk's diabetes drug Ozempic that have been found in the country's drug supply chain. The FDA said it will continue to investigate counterfeit Ozempic 1 milligram injections and has seized thousands of units, but flagged that some may still be available for purchase. The agency said the needles from the seized injections are counterfeit and their sterility cannot be confirmed, which presents an additional risk of infection for patients. Other confirmed counterfeit components from the seized products include the pen label and accompanying information about the healthcare professional and patient, as well as the carton. The FDA urged drug distributors, retail pharmacies, healthcare practitioners and patients to check the drug they have received and to not distribute, use or sell the units labeled with lot number NAR0074 and serial number 430834149057. People who have Ozempic injections with the above lot number and serial number can report it directly to the FDA Office of Criminal Investigations. https://www.nbcnews.com/health/health-news/fda-warns-ozempic-counterfeit-diabetes-weight-loss-rcna130871 XX New research indicates that information in the gut may predict how well a person responds to Tzield. That's the medication approved earlier this year to delay the onset of type 1. These findings reported in the journal Science Translational Medicine, casts a new spotlight on the immune system's relationship with the microbiome, revealing how gut microbes can shape the progression of type 1 diabetes. With this new knowledge in hand, clinicians may better pinpoint patients who are most likely to respond to teplizumab. https://medicalxpress.com/news/2023-12-gut-microbes-patients-response-drug.html XX Experts are advocating for universal screening for type 1 diabetes. With the availability of Tzield and other medications on the horizon, there's a stronger push for screening earlier in life. At least 85% of people who are newly diagnosed do not have a family history of diabetes. Testing for autoantibodies can be completed at home through the TrialNet clinical trial program, or at a doctor's office or lab. For instance, JDRF's T1Detect program provides at-home testing for $55, with lower-cost options for people in financial need. The 2024 American Diabetes Association (ADA) Standards of Care recommend more intensive monitoring for the progression of preclinical type 1 diabetes. The Standards of Care also recommend using Tzield to delay the onset of diabetes in people at least 8 years old with stage 2 type 1 diabetes. https://diatribe.org/type-1-diabetes-it%E2%80%99s-time-population-wide-screening XX Commercial XX https://www.healthline.com/health-news/the-years-biggest-medical-advancements-in-diabetes-treatment XX DRF, the leading global funder of type 1 diabetes (T1D) research, is recognizing the NFL stars who showcased their creativity and a remarkable show of support as part of the highly anticipated annual "My Cause My Cleats" (MCMC) campaign. The My Cause My Cleats initiative allows NFL players to wear custom-painted cleats during selected games to raise awareness and funds for the charitable causes closest to their hearts. The unofficial start of the campaign begins on Giving Tuesday with unboxing day events showcasing the players' cleats and the stories behind them. It continues through weeks 13 and 14 of the season, culminating with the players donning their cleats on game day. After the games, some players donate their cleats to their chosen charities or the NFL auction, with all proceeds going toward their selected causes. Type 1 Diabetes is a life-threatening autoimmune condition that affects people of all ages, regardless of family history or lifestyle choices. To live, people with T1D must carefully balance injecting or infusing insulin with their carbohydrate intake throughout the day and night. T1D impacts approximately 1.6 million people in the U.S. It is unpreventable, and there is currently no cure. This year, JDRF is thankful for the support of several players who have T1D or are advocating for their loved ones with T1D, including Mark Andrews of the Baltimore Ravens, Orlando Brown, Jr. of the Cincinnati Bengals, Blake Ferguson of the Miami Dolphins, Collin Johnson of the Chicago Bears, Chad Muma of the Jacksonville Jaguars, Nate Peterman of the Chicago Bears, and Kevin Radar of the Tennessee Titans. "The NFL players who support JDRF through the My Cause My Cleats exemplify the passion and determination at the heart of the type 1 diabetes community," said Kenya Felton, JDRF Director of PR and Celebrity Engagement. "They serve as inspirations for many adults and children affected by T1D, demonstrating that with an understanding of T1D, effective management, and a good support system, you can overcome the challenges of the disease. Their support helps to increase awareness and is significant in helping JDRF advance life-changing breakthroughs in T1D research and advocacy initiatives." Since its inception in 2016, the MCMC campaign has provided a platform for many NFL players and affiliates to support JDRF's mission, including Beau Benzschawel, David Carr, Will Clarke, Keion Crossen, DeAndre Carter, Reid Ferguson, Jaedan Graham, Jarvis Jenkins, Collin Johnson, Henry Mondeaux, Jaelan Phillips, Adam Schefter, Brandon Wilds, and Jonah Williams. https://www.prnewswire.com/news-releases/nfl-stars-support-jdrf-and-champion-type-1-diabetes-awareness-through-the-my-cause-my-cleats-campaign-302022060.html XX Join us again soon!
Understanding the ins and outs of Type 1 diabetes and its stages is key in accurately screening for and managing the disease. In the first of a three-part series, we're joined by Associate Vice President of T1D Education and Clinical Implementation at JDRF and 2023 Diabetes Educator of the Year Anastasia Albanese-O'Neill, PhD, APRN, CDCES. In this episode, Dr. O'Neill talks about common misconceptions of T1D, as well as the stages of T1D and the importance of evaluating and understanding these stages when diagnosing and working with people and families affected by T1D. Educational grant support for this episode is provided by Sanofi. Learn more about T1D risk screening and additional resources on JDRF's website: https://www.jdrf.org/t1d-resources/t1detect/ Learn more and gain access to T1D screening kits via TrialNet: https://www.trialnet.org/ or ASK: https://www.askhealth.org/?_ga=2.144097589.1682361371.1702935724-1205645336.1702935724 Learn more about the Search for Diabetes in Youth study here: SEARCH FOR DIABETES IN YOUTH Listen to more episodes of The Huddle at adces.org/perspectives/the-huddle/podcast. Learn more about ADCES and the many benefits of membership at adces.org.
Dr. Kimber Simmons (MD, MS) is an Assistant Professor of Pediatrics at the Barbara Davis Center for Diabetes in Aurora, CO. She cares for children with Type 1 diabetes (T1D) and other endocrinologic disorders. She is passionate about educating families and the community about T1D. As a child, she prayed every night for a cure for T1D, and now she spends much of her time conducting research with the goal of contributing to the prevention of and, ultimately, a cure for T1D! She is involved in efforts to identify children who have T1D early, before they develop symptoms, and is an active investigator in many prevention trials, including those run by TrialNet. As a collegiate athlete who loves hiking, running, and spending time outdoors with her husband and two young children, she is sympathetic to the blood sugar roller coaster and enjoys helping young athletes learn to manage their blood sugars better. She is honored to be part of such a dedicated and innovative group of individuals committed to making positive changes for people at risk for and living with T1D!Ask the Experts: https://www.asktheexperts.org/Enable: https://type1testing.enablebiosciences.com/Ask: https://www.askhealth.org/childhood-diabetesSupport the show
Rebecca is the wife of a type 1, mom of a type 1, mom of a Trialnet participant trying to prevent type 1, and a sister of a steroid-induced type 1. This BetterHelp link saves 10% on your first month of therapy Try delicious AG1 - Drink AG1.com/Juicebox Use code JUICEBOX to save 35% at Cozy Earth Get the Gvoke HypoPen CONTOUR NEXTONE smart meter and CONTOUR DIABETES app Learn about the Dexcom G6 and G7 CGM Go tubeless with Omnipod 5 or Omnipod DASH Get your supplies from US MED or call 888-721-1514 Learn about Touched By Type 1 Take the T1DExchange survey A full list of our sponsors How to listen, disclaimer and more Apple Podcasts> Subscribe to the podcast today! The podcast is available on Spotify, Google Play, iHeartRadio, Radio Public, Amazon Music and all Android devices The show is now available as an Alexa skill. My type 1 diabetes parenting blog Arden's Day Listen to the Juicebox Podcast online Read my award winning memoir: Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here or buy me a coffee. Thank you! Follow Scott on Social Media @ArdensDay @JuiceboxPodcast Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan. If the podcast has helped you to live better with type 1 please tell someone else how to find the show and consider leaving a rating and review on iTunes. Thank you! Arden's Day and The Juicebox Podcast are not charitable organizations.
Dr. Bryce Nelson is one of the first doctors in the country to administer the new Tzield to delay the onset of type 1. He's been involved with TrialNet, identifying those who have the genetic markets for T1D and says that research was exciting but frustrating because they had no treatment. Now, they're looking at a possibly new way of talking about T1D. Dr. Nelson is the Chief of Endocrinology at Children's Hospital of Richmond at VCU Dr. Nelson takes us through the process of using Tzield – which was researched under the name teplizumab – from identifying the patient, to treatment to what happens next. His first patient, William Troutman, is a North Carolina teenager. William's mom joined me a few weeks ago to tell their side of the story. Listen to our episode with Amanda Troutman: https://diabetes-connections.com/delaying-a-t1d-diagnosis-with-tzield-a-deep-sigh-of-relief-for-a-little-while/ This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Please visit our Sponsors & Partners - they help make the show possible! Take Control with Afrezza Omnipod - Simplify Life Learn about Dexcom Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Facebook (Group) Facebook (Page) Instagram Twitter Check out Stacey's books! Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
TheSugarScience Podcast- curating the scientific conversation in type 1 diabetes
In this episode, Mike Haller joins us to discuss updates at TrialNet. Ask the Expert is a ~30 minute digital cafe experience where scientists and grad students can meet and exchange with thought leaders in the field of type 1 diabetes. Link below to sign up for a seat in the cafe!
It's “In the News..” got a few minutes? Get caught up! Top stories this week: The US Senate may have a bipartisan plan to lower the price of insulin for the insured, nasal insulin is tested to reduce the risk of Alzheimer's in people with diabetes, two interesting studies about sleep and diabetes, and more! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD* *Click here to learn more about AFREZZA* *Click here to learn more about DEXCOM* Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. XX In the news is brought to you by T1D Exchange! T1D Exchange is a nonprofit organization dedicated to improving outcomes for the entire T1D population. https://t1dexchange.org/stacey/ XX Two Senators have unveiled legislation aimed at lowering the cost of insulin, but not for the uninsured. This is a bipartisan bill that would lower patietn's cost to 35-dollars a month, for those with commercial insurance and on Medicare. It would eliminate the rebates drug companies pay to negotiators known as pharmacy benefit managers if the drug company kept the overall price of insulin below a certain level. Democrats are also in the midst of talks on a party-line package on President Biden's economic agenda that would likely include reductions in insulin costs as well as broader measures aimed at lowering drug prices, which could complicate any push for a stand-alone insulin measure. This change has enormous support among Americans, but can't seem to get any real traction in Washington despite who's in power. We'll see what happens.. https://thehill.com/policy/healthcare/3531954-bipartisan-pair-of-senators-unveils-bill-to-lower-insulin-costs/ XX Nasal insulin doesn't look like it works too well on diabetes, but a new study shows it may help to slow age related mental decline. This study found that after 12 months of once daily intranasal insulin, people with diabetes in the study performed better on cognitive tests than those diabetics in the placebo group. The non-diabetic group receiving the intranasal insulin also displayed improvements on decision making and verbal memory tests compared to non-diabetics in the placebo group. The biggest improvements in the non-diabetic group were seen in those subjects who started the trial in a prediabetic state. This suggests the treatment may be most effective at slowing cognitive decline in either diabetics or those with prediabetes. https://newatlas.com/health-wellbeing/insulin-nasal-spray-cognitive-decline-dementia-clinical-trial/ XX Go to sleep, and don't breathe too much. Researchers in the U.K. will test hypoxia to treat type 2 diabetes. Hypoxia is a state where the body does not receive sufficient amounts of oxygen. Multiple studies have shown that hypoxia improves blood sugar levels and aids in weight loss. Although scientists do not fully understand how this works, it is suggested that hypoxia burns more calories in the body, resulting in lower appetites in individuals. These researchers want to recruit volunteers so they can figure out why. Each volunteer will be provided with a sleeping tent in which they have to sleep – at home - for 10-day periods on two separate occasions. For one of they nights, they oxygen levels will be set to 15 percent. That sounds ridiculous, but, the air we breathe right now is only about 21% oxygen. 15-percent is pretty typical for find at high altitudes or inside an airplane. https://interestingengineering.com/lose-weight-while-asleep XX Another look at sleeping and type 2.. an exposure to light may increase the risk. Big sleep study at Northwestern University found that exposure to any amount of light during the sleep period was correlated with the higher prevalence of diabetes, obesity and hypertension in both older men and women. A study published earlier this year by the same team found for healthy adults in their 20s. Sleeping for only one night with a dim light, such as a TV set with the sound off, raised the blood sugar and heart rate. An elevated heart rate at night has been shown in prior studies to be a risk factor for future heart disease and early death, while higher blood sugar levels are a sign of insulin resistance, which can ultimately lead to type 2 diabetes. Instead of pulling people into a sleep lab, the new study used a real-world setting. Researchers gave 552 men and women between the ages of 63 and 84 an actigraph, a small device worn like a wristwatch that measures sleep cycles, average movement and light exposure. Fewer than half of the adults in the study got five hours of darkness at night. those who had higher amounts of light at night were also the most likely to have diabetes, obesity or hypertension." Strategies for reducing light levels at night include positioning your bed away from windows or using light-blocking window shades. Don't charge laptops and cellphones in your bedroom where melatonin-altering blue light can disrupt your sleep. If low levels of light persist, try a sleep mask to shelter your eyes. In that case, consider using nightlights positioned very low to the ground, and choose lights with an amber or red color. That spectrum of light has a longer wavelength, and is less intrusive and disruptive to our circadian rhythm, or body clock, than shorter wavelengths such as blue light. https://www.cnn.com/2022/06/22/health/light-exposure-sleep-study-wellness/index.html XX https://medicalxpress.com/news/2022-06-reveals-key-diabetes-drug-nature.htmlXX XX Nice story out of Kansas City where Chiefs offensive tackle Orlando Brown Jr. publicly enrolled himself in a TrialNet study. His brother lives with type 1 and his father died of DKA without knowing he had diabetes. Brown said he hopes participating in the trial will help others while helping himself and his family. https://www.kshb.com/sports/chiefs-orlando-brown-jr-enrolls-in-trialnet-study-for-type-1-diabetes XX Right back to the news in a moment but first As I mentioned, The T1D Exchange Registry is an online research study, designed to harness the power of individuals with type 1 diabetes. It's a research study conducted online over time, designed to foster innovation and improve the lives of people with T1D. Personal information remains confidential and participation is fully voluntary. Once enrolled, participants will complete annual surveys and have the opportunity to sign up for other studies on specific topics related to T1D. By sharing opinions, experiences and data, patients can help advance meaningful T1D treatment, care and policy Sign up at T1DExchange.org slash Stacey (that's S-T-A-C-E-Y). XX Congrats to the great team of Ginger Vieira and Mike Lawson on their newest book. Ain't Gonna Hide My T1D. Sherry the Sheep loves to draw and play basketball, but she's worried about what her friends will think if they see her insulin & CGM. Ginger and Mike are long time advocates who both live with type 1. This is their 3rd children's book together and I think they do a great job of balancing fun and education. https://smile.amazon.com/Aint-Gonna-Hide-My-T1D/dp/B0B455DL45/ref=sr_1_4?qid=1655748198&refinements=p_27:GingerVieira&s=books&sr=1-4&text=GingerVieira XX And finally, The Human Trial premieres this weekend. This is a documentary all about stem cell transplantation as a functional cure for type 1. I first spoke to the people behind this film back in 2016 when they were well underway. The movie follows the first two patients in the Viacyte trials. You can host your own screening.. I'll link up more information – as I do with all of these stories - in the show notes. XX And.. The Human Trial will be subject of next week's long format show. My interview with Lisa Hepner is a follow up to the one six years ago when we first discussed this project. We go into the details of stem cell research, what changed and what she's seen behind the scenes. The current long-format episode out now is all about Skirt My Pump, an ingenious idea from a women who's lived with type 1 for 40 years and got fed up with figuring out where to put her pump. Listen wherever you get your podcasts That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
In today's episode, co-hosts Sami (type 1) and Dobie (type 2) get the opportunity to chat and learn from the amazing Dr. Carla Greenbaum who sheds light on risk screening for type 1 diabetes. In her work at TrialNet, research is conducted to slow or stop the development of type 1 diabetes in family members of diabetics. TrialNet is an international network where medical professionals work on tackling type 1 diabetes from all angles. Tune in to hear all the valuable and insightful information Dr. Carla shares with Sami and Dobie. C'est la vie, baby!Question of the pod: Would you ever participate in a diabetes trial?Share it with us at:Instagram: @justmytypepod_Twitter: @justmytypepod_Tik Tok: @justmytypepod_Facebook: @justmytypepodHashtag: #justmytypepodThis episode of Just My Type is sponsored by The Diabetes App: a community platform for individuals living with all types of diabetes.For more information and to listen to more episodes check out our website:www.justmytypepodcast.comDisclaimerNothing expressed on the Just My Type podcast or on the Just My Type website is intended or should be interpreted or used as medical advice. You should always consult with a competent physician with respect to all aspects of your health and wellness.Ad Song: Just Smile by LiQWYD Creative Commons — Attribution 3.0 — CC BY 3.0
Do you or your child have Type 1 Diabetes? Are you wondering if other members of your family, adults or children, may be at risk for developing T1D? Is there a way to screen for that? If they are at risk, is there anything that can be done to delay or prevent the onset of Type 1? These are all fabulous questions and the answers to all of them are discussed in today's episode.In this episode, I had the pleasure of talking with Frank Martin, Director of Research at JDRF, about their T1Detect program. We also get to hear all about TrialNet from Dr. Michael Haller, professor and Chief of Pediatric Endocrinology at the University of Florida (UF) as well as the principal investigator of the UF TrialNet Clinical Center. See below for descriptions of both with links to their websites to find out more and order your own at-home screening kit. What is T1Detect?T1Detect, JDRF's screening education and awareness program, will arm you with the information you need before and after getting screened for type 1 diabetes (T1D) autoantibodies. Until now, T1D symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect T1D early so they can plan and prepare. With one blood test, anyone at any age can find out—before symptoms even occur—if they are at risk for developing T1D. The test is easy, simple and can help save lives.Their website: https://www.jdrf.org/t1d-resources/t1detect/ What is TrialNet?TrialNet is an international network of leading academic institutions, endocrinologists, physicians, scientists and healthcare teams at the forefront of type 1 diabetes (T1D) research. We offer risk screening for relatives of people with T1D and innovative clinical studies testing ways to slow down and prevent disease progression. Our goal: a future without T1D!Their website: https://www.trialnet.org/Support the show (https://www.buymeacoffee.com/sugarmama)
It's "In the News..." the only LIVE diabetes newscast! Give us five minutes and we'll tell you about: European approval for Medtronic's new no-calibration sensor FDA considers a drug to prevent T1D New info about gestational diabetes A potential type 1 vaccine moves forward Telehealth update (and what's next after COVID) Join Stacey live on Facebook every Wednesday and watch "In the News..." Live! https://www.facebook.com/diabetesconnections Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription and links below: May 26, 2021 FB LIVE: Starting soon slide Hi, and welcome to Diabetes Connections In the News! A short weekly newscast full of the top diabetes stories and headlines of the past week. I’m Stacey Simms & whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” In The News this week.. XX Bit of breaking technology news today as Medtronic gets European approval for its Guardian 4 sensor. This is their newest sensor which requires no fingersticks for calibration or diabetes treatment decisions. Medtronic says they’ll start integrating this sensor into the 780G pump and InPen offerings in the fall. No word on a timeline for US approval for the Guardian 4 sensor. MedT Guardian 4: https://investorrelations.medtronic.com/news-releases/news-release-details/medtronic-secures-two-ce-mark-approvals-guardian-4-sensor-inpen XX FDA advisory committee may give more information and feedback on the first treatment to delay or even prevent type 1 diabetes as early as tomorrow. They’ll decide if Teplizumab is safe and effective. This is not full FDA approval, but it’s another step toward releasing what is an IV drug, given as a single 14-day course of infusions. If you’ve heard us about the TrialNet studies on this on the podcast over the last few years.. that’s what most of the evidence is coming from. Their studies showed a relative 59% reduction in risk for developing T1D and a delay of diagnosis of 2 to 3 years. https://www.medpagetoday.com/endocrinology/type1diabetes/92784 XX Another new treatment for type 1 diabetes moves into clinical studies.. this is a vaccine that looks like it prevents the destruction of insulin producing cells in the pancreas. DiabetesMine has an excellent report on this and we’ll link that up here so you can read the whole thing. But the Swedish biotech company Diamyd has been working on this immunotherapy vaccine for two decades, including a study where they injected it into the lymph nodes of the study participants. Their large-scale Phase III trials will start this year in Europe and the US and will include more than 300 children and young adults recently diagnosed with T1D. Diamyd vaccine: https://www.healthline.com/diabetesmine/diamyd-type1-diabetes-vaccine XX A new long term study shows that women diagnosed with gestational diabetes are more prone to type 2 and type 1 diabetes later in life. It’s been known for some time that gestational diabetes is linked to the risk of type 2.. but these researchers say auto-antibody testing should be considered in order to have a better understanding of all the risks In this study, 50% of women who experience gestational diabetes go on to develop type-2 diabetes later in life and almost six percent developed type-1 diabetes. This 23 year long study was presented at the European Congress of Endocrinology Gestational diabetes increases risk for T2 and T1 https://www.eurekalert.org/pub_releases/2021-05/esoe-als051921.php More info to back up what a lot of patients have been saying for a long time. If an endocrinologist is negative or belittling, people stop listening to them and even stop going for check ups and prescriptions. University of Florida Diabetes Institute polled their minority communities recently and found that the main challenge is support from their endo. Or lack of support These researchers looked at people who missed two or more endocrinology appointments, have experienced diabetes-related complications in the past year and receive primary care at a federally qualified health center. The study found when people from minority or low-income groups report negative and belittling interactions with their endocrinologist, they stop going to appointments. These researchers say they want to look at implicit bias in care and do something about it. Endo attitudes: https://www.wcjb.com/2021/05/21/university-of-florida-study-uncovers-equity-disparity-within-type-1-diabetes-community/ Telemedicine – no surprise – skyrocketed for people with type 1. From less than 1% before the COVID-19 pandemic to about 95% in April 2020, according to study data. In March 2020, clinics in the T1D Exchange Quality Improvement Collaborative began attending virtual meetings to share progress and best practices with the shift to telemedicine. Researchers collected the monthly number of type 1 diabetes visits and HbA1c values collected from a subset of 11 pediatric clinics and two adult clinics from December 2019 to August 2020. The researchers noted the proportion of telemedicine visits varied widely at each clinic. About 62% of clinics performed both video and phone visits. Zoom was the most popular platform, used by 62% of centers. More than 95% of clinics also used CareLink, t:connect, Clarity or Glooko to view diabetes data remotely. Most centers had diabetes educators, registered dietitians and social workers participating in telemedicine. However, only 15% of clinics said a psychologist participated in telemedicine. All clinics provided continuous glucose monitor training through telemedicine and 70% provided insulin pump training. Telemedicine https://www.healio.com/news/endocrinology/20210521/telemedicine-visits-rapidly-increase-at-type-1-diabetes-clinics-during-covid19-pandemic but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about when a belief thought to be settled science turns out to be wrong. And to illustrate that point they talk about the horse poop crisis of New York City. It was real and it resolved in a way no one expected. Listen to Inside the Breakthrough wherever you listen to podcasts.. Can a game – with competition – really help people live a more healthy lifestyle? A one year trial with people with type 2 diabetes tracks steps and game elements such as points and levels. Some also received social support from a family member or friend. A third group just got the tracking device. Everyone in the study lost weight and lowered their A1Cs but those who didn’t play the game took fewer steps and tracked less activity overall. A lot of gamified apps have come and gone in the diabetes space.. these researchers say the competitive aspect may be the key. Game study for T2 https://www.mobihealthnews.com/news/gamification-step-count-leads-more-activity-diabetes-focused-study That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Banting House, the birthplace of insulin. Thanks and I’ll see you then!
How do you treat lows? We're not just talking about candy vs juice. Treating lows also means managing expectations, considering mental health and even addressing other people's reactions. The authors of the new children's book "When I Go Low" join us for a great discussion about what can be a frightening issue for kids and adults who use insulin. Mike Lawson and Ginger Vieira both live with type 1. They explain the thinking behind the book and talk about their own experiences with low blood sugar. Stacey shares her experience as a parent of a young child with type 1 who couldn't articulate when he felt low. In Tell me something good, I checked in with the folks from Children with Diabetes Friends for Life. And I have some fun, professional news about Benny. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: 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. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week I'm talking to the authors of the new book When I go low, Mike Lawson and Ginger Vieira have lived with type one each for a long time and they have their favorites when it comes to treating lows. Ginger Vieira 0:41 Gummy lifesavers, I really like because they don't freeze and they don't rot. So I put them in the car. Each gummy lifesaver has four grams of carbs, I think Skittles do freeze. It's very hard to chew frozen Skittle but they also have one gram of carb. You gotta keep stuff in your car. Stacey Simms 0:56 your car frozen up north down here in the south. We worry more about stuff melting this time of year, Ginger and Mike and I go in depth on lows treating managing mental health around them. And how those of us without diabetes might better support our loved ones during and after lows In Tell me something good. You all wanted to report good news at medical checkups. So we'll talk about that vaccine rollouts. And I have some fun, professional news about Benny, 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 with an emphasis on people who use insulin. My son Benny was diagnosed right before he turned two more than 14 years ago. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. I love talking about children's books. And not just because my kids are old now. And all the children's books are put away in a closet. But it's such a wonderful, wonderful tool when you're teaching not just about diabetes, but about so many things. And of course, when Benny was diagnosed, he was so young. You know, he was 23 months old. We were reading tons and tons of picture books anyway. And one of the first things I did was look around to try to find something and short there were some terrific diabetes books for kids back then our favorite was one called Jackie's got game. I don't know if that's in print anymore. But there just weren't a lot of books. And now Gosh, I feel like every other week a new picture book for little kids with type one is coming out. And that is fantastic. You know what we need more of? And Mike and Ginger, maybe you can get on this. I think we need more books for middle schoolers, older elementary school kids, even high school kids that aren't so much about type one, but have a protagonist with type one. And it's just there. There are a couple of books like that we've talked with the author KJ Howe wrote a book I'll link that up. Kurt Anderson has a book as well. I'll put those in the show notes. But they're for adults, and I wouldn't in good conscience have a middle schooler read some of the stuff that's going on in those stories. So I would love to see that. So get on that guys, right? Not like you have anything else to do. But this episode is gonna be about more than books. Ginger and Mike are longtime advocates and hearing them talk about low blood sugars was really eye opening to me, I learned an awful lot even after all of these years. I think adults with type one are going to really enjoy hearing them talk about their experiences. And parents, we cannot learn enough about listening to our children to adults with type one about what they need from us and want from us and how we can help support them. And even though Benny is more independent every single day, I still need to learn a lot about backing off helping and supporting and not smothering. So this was a really good discussion for that. Okay, we'll get to Ginger and Mike in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And this is exactly what we're talking about today. 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. Gvoke is 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. How easy is it you pull off the red cap and push the yellow and onto beer skin and hold it for five seconds. That's it, 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. My guests this week are Ginger Vieira and Mike Lawson Ginger has lived with type 1 diabetes and celiac since 1999. She was diagnosed with fibromyalgia in 2014. She is the author of five books. We have talked I heard before on the show about some of those books, especially pregnancy with type 1 diabetes. I will link up tons of information about Ginger and those other books so you can check them out. She has two little girls, they did a read along on YouTube. But with this book, I will link that up as well. You've probably seen Ginger jumping rope on Facebook or Instagram. She is very active. She's I mean, she's certified in coaching, personal training and yoga. Mike Lawson was Misdiagnosed with Type two when he was 20. It took more than a year for him to get the right diagnosis. He had previously worked with diabetes hands Foundation, that's where I first met him years ago, he now works for a theatre production company in San Francisco and with the insulin for all movement, and Mike is the author of another book called Open up your bag. We've talked him on the show about that as well. I'll link up all of his stuff. And I will also include diabetes doodles, which Mike talks about here, Ginger, and Mike, thank you so much for joining me this book is I was gonna say just adorable. But it's so much more than that. And I can't wait to talk about it. Thanks for being here. Ginger Vieira 6:02 Thanks for having us. Mike Lawson 6:03 Yeah, nice to see you. Stacey Simms 6:05 A little bit later on. I want to talk more about the substance here. It's always so helpful to get insight into how things feel so I can help my son more. But let's start and Ginger, I’ll ask you, how did you all come up with the idea for this book? Ginger Vieira 6:20 You know, it came together with a few things that just kind of were wonderful coincidences, Mike had just illustrated and wrote the book, open up your bag, which is on the shelf behind him in the video. And at the same time, on the other side of the country, I was reading children's books to my kids who don't have type one, thinking about the time when I've had lunch with a bunch of kindergarteners who had type one, and how incredible it is that at that age, they have to count carbs and take insulin and prick their fingers and have all these gadgets in their body. You know, I'm 35. And I can't stand wearing a CGM anymore. It's like, and to be that little and deal with the burdens that come with this. And then I know as a mother, right, like trying to get my three year old potty train or even when they are potty trained, being like, do you need to go to the bathroom? They're like, no. And then 10 minutes later, they're like rushing to the bathroom because they can't you know, and to listen to your body is a skill that you build and detecting the symptoms of a low is a skill and a degree of self awareness. That is a lot to ask of a little kid. Yeah, that's a long answer to question. Stacey Simms 7:31 No, it's a great one. I do have follow up, though. You were having lunch with kindergarteners with type one? Ginger Vieira 7:36 This is a long time ago. But it really stuck with me that I was invited to meet a bunch of the kids in the town where I grew up who have type one. And low blood sugars are terrifying. And so it's I'm even more aware of what I witnessed now that I have little children. I have a three and a six year old. And to imagine them having to do what I watched these five year olds doing. I was diagnosed with 13. Right and it sucks at any age. And like you came on and talk to us a while ago about open up your bag about that book Stacey Simms 8:04 that ginger, which is great. I don't know if you were surprised. I was not because the you know, the the diabetes community of parents that need something like that is so responsive when there is something good. It seems like you're a little bit overwhelmed by the response that you got to that. Can you talk a little bit before we talk about this book about what's happened since Mike Lawson 8:21 well, open up your bag did get some great kind of following from folks who pretty much the general sort of comment that I received was like, we just needed something there just wasn't enough, maybe there are a couple of their books, and they're all every kind of type one book that I've read is great. So I'm not here to kind of knock any of the other stuff that's out there. But there's just not enough, especially if you're kind of breeding it every night before bed, like it'd be nice to have a second title to read and open up your bag. And when I go low, both of them are just kind of their happy books with Ginger just said kind of sounds a little bit scary. Like kids can't recognize these symptoms and stuff like that kind of is a scary topic. But the book that Ginger wrote really does it in a very light hearted way. Let's kind of just talk about the symptoms. And let's talk about how we're going to kind of treat them and it's not scary, it's happy and jovial and it's fun and open up your bag as well as kind of like, let's just kind of collect our diabetes supplies and kind of make a little singsong about them. That's kind of been the general reception, and it's been great. Stacey Simms 9:28 So let's back up and talk about your experiences you both live with type one. It's been a while it may surprise some people I doubt it because we have a really well educated and fabulous audience. But it may surprise some people to hear that they still have low blood sugars, like, still? And I say that with humor, right? We're not judging. This is not something that goes away. Mike is showing his little supplies nearby. But I'm curious if there was as you were writing this book and ginger, let's start with you, as you were writing this, what about your own personal experiences that kind of been formed, what went into it? Ginger Vieira 10:01 I mean, a big part of what so there's several characters in the book and everybody except mom, cat has type 1 diabetes, and they all are sharing different symptoms that they feel when they're low. And that really for me, I, you know, I know that when I'm low and I'm on a treadmill, one of the first symptoms I feel is that the front of my eyes going numb, versus when I'm in bed, and I'm waking up in the middle of the night, and I'm low. The first symptom I feel is that I wake up and I like, Why the heck am I awake at 3am? You know, and it's not till I sit up there, I'm like, whoa, I'm low. And so, you know, I figured that out when I was like, 22. So to ask for little children to like, be that self aware is, it's an idea that we're really trying to offer them because the same way that you can encourage a little girl to know that she's smart and beautiful, is through the messaging you send, right. So we're trying to help send the message that you do have the ability to feel your lows coming on and send them you know, Stacey Simms 11:03 let's let's kind of deviate from the book and kind of go further into that, because I feel like, again, and I have had occasional low blood sugars. I mean, once a year, basically, and I've shared this on the podcast, just recently, I had a low while I was taping the podcast, I went down and measured my blood sugar was 46. So it was a real low, but I'm fine. And it happens so infrequently. But I got it. I mean, I'm fine. Ginger made a mom face. But you know, I have talked to my doctor about it, I have to eat well, and be smart, you know, but things are gonna happen. And I'm not always smart. And that's okay, that's being a human being. So I just have to be prepared. But it did give me some incredible insight into just how to me how scary it was to be low, and how disorienting. And the example I gave was, there were two things that happened. One was I really wanted juice, but my husband was hanging around and he was like, What do you want to drink? And I said milk, and I hate milk. And I drank a glass of milk. It was like, and he didn't question me and I sit him later, he said, My mouth said what my brain was not thinking it was very strange. And then for the next hour, I was so hungry. I was just really, really hungry. And Benny, of course was I told you know, you believe me. So to me, it wasn't frightening because it was well controlled. I was here it was not a big deal. But it was very eye opening. So I say all that to and Mike, let me start with you, would you mind just kind of sharing what it feels like for you. And I know it's not the same all the time. But what is a low blood sugar kind of like for you. Mike Lawson 12:30 It's funny, you use the word disorienting. And that's what I would use as well. Especially recently, I've noticed a lot of my lows are kind of I'm My mouth is getting detached from my brain. And I'll be kind of, you know, a few minutes into a story about I don't know, some documentary I watched and like, why am I telling this story right now. Like, I'm just kind of rambling off details and like, my thoughts aren't necessarily connecting with kind of a point. So I kind of get rambley in gingers in the book pointed out mad. And it wasn't really until I read this picture book that I started kind of analyzing that. And I do get a little bit angry a little bit sassier. And my tongue gets a little bit sharper. So that's something that I'm noticing and trying to kind of communicate with the loved ones around me to sort of say like, Hey, this is a symptom and not necessarily to explain it away Why I can be a jerk. But to kind of like say like, Hey, if you're kind of noticing this, and you know, we haven't eaten in a while, or we just got back from a hike. Like, that could be why and let's figure out what I need to do after that. So I feel like angry and angry is a new one that I'm learning to sort of analyze, but disassociated and kind of dizzy and rambley. Am I low right now? Stacey Simms 13:46 (laughs) or is that just being part of a podcast? A little rambling? Has it is, as you said, you're sort of recognizing that a little bit more now. But Has anything changed for you over the years of being diagnosed is significantly in terms of how you experience lows? Right back to Mike answering that question in just a moment. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of 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 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 daario.com forward slash Diabetes Connections. Find out more go to my dario.com forward slash diabetes dash connections. Now back to Mike talking about what has kind of changed for him over the years when it comes to lows Mike Lawson 15:03 What's changed for me is I've learned to sort of treat them and not ignore them. And I don't think that this is uncommon. I had this problem where I know a low is happening, I could feel it and sort of in my head, I'm like, well, maybe this one will rebound on its own or will take care of itself. And I'll kind of just sit and wait until it's like an emergency. And that usually then leads to me eating anything I can get my hands on which then we you know, like, it's a cycle of kind of. So I've been trying to learn, like, if you feel that symptom, like let's take care of it right now. And that's made them a little less drastic and easier to recover from Ginger Vieira 15:44 I mean, a couple things came to mind when you asked that. One is that I actually I think being a parent has made my lows feel more like an emergency, you know, because it's like, there's nothing less fun than being a playground and being 45, 45 blood sugar. like being in the middle of Costco with both my kids and then having a really bad low because of a miss time or miss guess, and insulin like that. It's just miserable. So I feel like I'm on much more alert for oncoming lows, because I hate having them as a parent. So I've also lately if I wake up a little bit low, like even 50, 55, I will let dawn phenomenon correct my low, because I usually need a unit of insulin as soon as I wake up to prevent me from rising 100 points. So if I wake up low, I've actually experimented with seeing if dawn phenomenon will fix it, and it does. And then I still end up needing a unit of insulin eventually to prevent a further rise. But it's been an interesting, obviously, I'm not like sweating and shaking with that kind of low. It's like a very steady just sitting, you know, at 55 or something. Stacey Simms 17:06 Right? That's something you have to be a bit experienced to have a backup plan. Ginger Vieira 17:10 And I'm not getting in the car, you know, it's like, right, Stacey Simms 17:13 but we've done that over the years. Yeah, I mean, you know, once you're a while in I think most people, I don't want to say experiment on themselves. But that's kind of what it is. And we've done that, you know, we've kind of let it ride and I'm right here. But let's learn. What do you think you would like you know, spouse's parents, other people around the person with diabetes who get diabetes as much as we can. But what do you want us to know about low blood sugars? Ginger Vieira 17:38 Even after it's come back up to a normal level you feel terrible for I mean, you mentioned feeling hungry for an hour, you feel terrible for a few hours. Other it's like a headache, or you're just exhausted or like, I'm just constantly wanting to eat everything in sight, even though your blood sugar's now 120. Mike Lawson 17:56 I think that's a good one. I also would want to communicate kind of like the urgency that I feel, I don't act like myself for a few minutes, because I'm kind of focused on just one thing. And that's bringing this number up. And not that that excuses me, like I said before, to be a jerk to everyone around me. But it's sort of like, get out of the way for a minute. But don't talk to me about why I'm low. Like that can happen later. Like, right now I need to just fix this. And that's all I can really think about. Stacey Simms 18:25 That's interesting, because I do think that many times I have said, while we're treating, like what happened. Let's analyze the situation and learn from this right? Ginger Vieira 18:35 I'll tell you what happened. my pancreas screwed me over. And that's all we need to talk about on that subject ever again. Yeah. Mike Lawson 18:44 It really is just one extra drop, you know, like, can send you over. Ginger Vieira 18:48 It's so easy to go low. That's such a great point. Like I hate when doctors are like, Oh, you had a low blood sugar. Because Mike is heard me talk so much about apples. But I eat an apple once a day, pretty much almost every day. And they're all different sizes. And if you get honey crisp one day or Fuji the other day, they're different sweetnesses to the little book that you got in 1994 that said, All apples are 15 grams of carbs is lying to you. And it's so easy to take one unit more than you thought you needed for a meal. Stacey Simms 19:20 We learned that very early on with bananas. Right? Because they're different sizes and ripeness. Ginger Vieira 19:25 Yeah, that’s a whole other thing, right? you cannot estimate that accurately. Stacey Simms 19:30 I used to try to really figure out I read and I'm so sorry. I read this very early on. A parent said something somewhere that there is never not a reason. You know, you can always figure out what happened. And that's probably true. If you're like a molecular biologist or you know something you know you have Ginger Vieira 19:48 you might be able to always figure out what caused it but that doesn't mean you can control or prevent it. Stacey Simms 19:54 Exactly. And to my mind, it just seemed like a complete waste of time to spend the energy. The little Energy I had as a parent of toddlers to analyze how ripe was that banana. It was more like, okay, we know this could happen. So let's be prepared. Ginger Vieira 20:09 Yeah. Take a picture of it. Wait till the next batch of bananas looks as Brown is the one you know, I'm Stacey Simms 20:14 not even that good. I'm just like, I think it was this right now. Yeah. Unknown Speaker 20:17 Yeah. Stacey Simms 20:18 So what do you What's your go to for treating Lowe's. Mike, you showed us a bag of I think what was that jelly beans or something. But what's your go to Mike Lawson 20:25 jellybeans are new for me. Ginger has helped me in so many ways, man, this is 100% kind of hearing her talk about lows. We've done you know a few different talks and stuff after this book. So I've been picking up a lot of tips from her. So I'm trying to sort of get something that's easy to dose. Because my low treats are not treats. It's not something that I should be kind of looking forward to or enjoying. It's something that I should sort of be able to easily count when I'm in that low brain moment. I also do like those pouches of applesauce a lot because those are, you know, 10 grams of carbs. And usually that's kind of just what I need. And then I kind of can sit on my hands for the rest of the time while my brain wants to eat anything else that can get its hands on. So apple juice and apple sauce packets. I don't get a big thing of juice and pour it out because I'm not good at counting when I'm low. something easy is important to me. Ginger Vieira 21:16 Yeah, I would I echo that bottle of juice like the big bottle. No way. You can go up a whole bottle of juice if your blood sugar's 45. In a second. I personally tried to develop like some little rules for myself that I've put into books. That's what Mike is kind of talking about two I think and it's to prevent overtreating lows right and to treat a low in a way that helps it come up the fastest. So I like to use things like the jelly beans jelly if you get Jelly Belly brand. They're one gram of carb each so you know you can treat a mild low with like eight grams of carbs, gummy lifesavers, I really like because they don't freeze and they don't rot. So I keep them in the car. Each gummy lifesaver has four grams of carbs. I think Skittles do freeze. It's very hard to chew frozen Skittle, but they also have one gram of carbs. Because you're gonna keep stuff in your car. Stacey Simms 22:10 And we're in the south, so we can't keep stuff that'll melt. We can't keep candy in the car. Yeah, it was funny. I was trying to think of frozen Skittles, what you were talking about that I realized that most? Ginger Vieira 22:16 Yeah, yeah, that's keeping stuff in the car. And I walked my dog a lot. So I wouldn't be able to treat like not that I would have four loaves in the dog walk, but I want to be able to go a week and not worry about resupplying the low food. And so those little things that pet that like jelly beans, you can carry 100 jelly beans so easily in your pocket. Vinny has changed a lot over the years. He's always and still does use those 15 carb juice boxes. Because it's easy. It's a little bit overtreating, sometimes, but not by a lot. And it's not the drinking down the whole thing. Stacey Simms 22:48 I don't care as long as he's treating, and he's comfortable that that's fine. But when he started driving, when he got his permit, we started talking about things to leave in the car. And we discussed it for about three seconds, because I had a bunch of suggestions that I didn't actually get to, because he said it's just gonna be tabs, just give me tabs. I was like you've hated glucose tabs, you've never He's like, it's perfect. They won't melt, they won't freeze. I can always get to them, like just buy me a big honkin thing and we'll stick it in the glove compartment. Yeah, and he's had to treat a couple times, and it's been perfect. So all of my great suggestions went to the curb. Well, you Ginger Vieira 23:19 know, like, and there's such personal I had a really bad stomach virus, stomach bug when I was pregnant, and I regurgitated glucose tabs. Alright, so I've never touched one since then I really never will. And like, I joke that I would sooner die than have to eat a banana to treat a low because I hate bananas. I hate to write, but there's like certain things that you just don't work for you personally, you know, and you have to figure that out. Stacey Simms 23:47 Yeah. And you know, circumstances change and walking the dog driving the car, that kind of stuff. When you decide to write a book like this. I mean, both of you have written other books. Ginger, I know you've actually talked about how rewarding it has been, you know, to share this kind of information. Where do you start when you're thinking about kids? I just looking at it, I noticed a couple of things. And I don't want to like say too much. But I will say all the kids are not kids. They're animals. Right? Is that a drawing Quirk? Is that a choice you made? Is it something you want the kids to be able to see themselves no matter what they look like? I'm curious like how you came up with that? Mike Lawson 24:24 Yeah, I think I love children's books. I've always loved them. I'm kind of loved them for maybe a little too long. Even at a break into my later childhood. I was still checking out kids books and trying to redraw them. I was a big fan of if you give a mouse a cookie, and I would draw like fanfiction, where it kind of like extended the story. I just was really into it. And almost all of my favorites were the characters were animals. They weren't children. And so I kind of just thought that's how you do a kid's book. But if you do think about it, like you take a look at this book when I go low, and all of the characters are kind of relatable to you, because none of them are just a little boy or a little girl with blond hair, or, you know what I mean, they they're kind of everything. So you could kind of take a look at the group of birds and identify in that you could take a look at the pig and say, like, sometimes I'm a little piggy, you know, like, you've kind of relate to all of the characters at different times. So I like that a lot. And I think what's funny is when Ginger wrote this, she sent it to me, and we kind of had her initial conversations, and they were all animals when she wrote it. It wasn't like a conversation where I had to convince her that that was a good idea. She didn't. She knew it was Ginger Vieira 25:37 they were all underwater animals, because I was at first illustrate it myself. And thank goodness, I found that Mike was ready for a project because he did 100,000 times better. Stacey Simms 25:49 Are there things that we should be looking out for in the backgrounds are those streets that are familiar to either one of you, I don't want to give too much away. But I was curious. Mike Lawson 26:00 Yeah, so the background photos are just kind of stuff that's around me here in Oakland and San Francisco, there's a few stock images as well. But you'll notice there's bushrod Park, which is just down the street from me mosswood Park is around the other corner. So they're kind of just like photos from out and about. Ginger Vieira 26:19 So if you want to stalk Mike, then you've just been given like four tips on how to find him. So one thing that it's really not just a message about lows, we've really tried to incorporate a few messages for kids throughout the book where, obviously there's a lot of talking about lows, but there's also one that they're not the only one in town with type 1 diabetes. I've been at counselor at diabetes camp for in the winter, as a little weekend camp for teenagers for years. And you can just see like, the minute they walk in the room is like, oh, everybody here is just like me, taking a shot at lunch is no big deal anymore. And that that burden becomes so much lighter. So finding I've really any parent that's listening, like please send your kid out to diabetes camp, no matter how much they say, I absolutely do not want to go it will help them in more ways than like you can measure. And also several points in the book with between characters, they talk about how brave they have to be to deal with type one. And one thing that I hate to witness online is when a parent is talking about their child's type one with pity, you know, feeling bad for the kid because I think there's nothing more poisonous to confidence and courage and perseverance than pity. And instead of you know, you still want to acknowledge how hard it is. We're not you don't want to dismiss how hard it is. But instead of pity instill them with this sense of like, look what I deal with every day. I'm awesome. You know, this, like sense of confidence and impressiveness, you know, and so there's that message as well, like you are really brave for dealing with this every day. Stacey Simms 27:58 All right, I hate this question as an author, but I'm going to ask you guys anyway, because it's always fun. So books been out since January? What kind of reaction Have you received? Has it been different from your other books? And now I can ask you both of this, you know, but I can ask you both this question. Mike, you're nodding, was it different from open up your bag? Mike Lawson 28:15 Very similar, the receptions? Great, you know, seeing parents and children holding the book and talking about conversations that they've had thanks to the book is great. We've heard from a couple of parents that they appreciated the conversation that was created because it wasn't based around fear. It was sort of just a nice conversation about something that's very serious, but the conversation didn't have to be serious and scary. So that's great to see. Seeing people holding the book and kind of using it as a tool with their children has been very rewarding. Ginger, I'm sure it's a little different than some of your other books. Ginger Vieira 28:52 Oh, Mike did we did get the question of like, how could a cat and mouse possibly exist as friends in the same universe? Mike Lawson 29:02 Our harshest critic, and she was four. Stacey Simms 29:05 excuse me. Yeah, that's awesome. Ginger Vieira 29:09 We're trying to forge new communities, you know. I mean, I think with any book, it's, it's the same feeling of like, it doesn't matter if it's, I know, it's always rewarding because you get that, that this affected me in a positive way. And it made living with type 1 diabetes a little easier today or this week, or ever. It doesn't matter what it is. It's, it's worth it. Stacey Simms 29:35 One of the unfortunate trends I've noticed really just in the last five to eight years, among parents is Listen, you always want to respect lows, right? You don't want to ignore them. You want to treat you want to learn about them. But there seems to be I don't know if it's a CGM thing or a social media thing. I see more and more parents who are afraid to let their children do things away from the house, sports, all that stuff because Cause of low blood sugar. Are you kind of hoping that even though this is a book aimed at the kids, that the parents might kind of understand a little bit more about a Ginger you're making, you're kind of making me nervous with your face there. Ginger Vieira 30:11 I mean, I just technology’s… I feel like CGM has really changed how people, parent children with type one. And it's become much in some ways I've witnessed online. There's this like ultra-micromanagement of trying to get this flatline on the CGM and, like ultra-micromanaging their diet to the point that I think there's a whole new batch of kids that are going to be struggling with a, I never had anybody micromanage my diet as a 13 year old with type one. And I still had to like work through my relationship with food in my early 20s, because of diabetes. And so now you have like five year olds that are being put on ketogenic diets, and it's like, this isn't going to like succeed long term, I don't care how willing they look like they're into it right now. It's going to miss shape their relationship with food, and it's not necessary in order to thrive with type one. So yeah, I think cgms have, obviously they've provided this ultra safety, but it also provides like this ultra level of fear, I Stacey Simms 31:14 think, I just feel like we need to find better ways to use the technology to thrive and let our kids you know, thrive with it. Mike Lawson 31:21 The book is called when I go low, not if I go low, like we know you're gonna go low, it's if you're doing insulin it's gonna happen and kind of being afraid of them. And acting like that's a failure to go low is going to kind of set you up for some really heavy shame and kind of feelings that you don't necessarily need to have. I don't know, it's a complicated story. And I understand why you might fear lows, but personally, my fear of low blood sugar has actually led to my highest day one sees because then I'm under treating and or, you know, under injecting insulin and sort of like living high, which isn't good for me either. So you kind of have to figure out how to walk as close to the line as possible. And sometimes you're gonna dip below the line, and sometimes you're gonna be above the line. That's the game. Ginger Vieira 32:08 And there's so much pressure these days to get an agency that's like in the low five than the high fours because of ketogenic diets. And now an agency of 6.1 is like, Oh, that's no good. And I see it in parenting communities. And I feel really bad for the kids were like, you can live an extremely long, very healthy complication, free life with an A1C in the sixes. This is not, you know, like, you don't need to put your kid through taking away joys of being a kid. Yeah, to get anyone see. That's Stacey Simms 32:40 crazy. It's complicated. And I really hope that books like this help, because it's the parent who's reading it, the kid can learn a lot. But sometimes the parent I know, for me, it's always helpful when I learned from people who actually live with type one. Ginger Vieira 32:54 I do think like, as someone who's a parent, and someone who has type one, but my kids don't have it. I do think that type one is a lot scarier through a parent's eyes than it is living with it. It sucks living with it, I would give it up in a heartbeat, right? But I think there's the fear is bigger when it's coming through the parents eyes and the room for worry and pity. And I don't want my kids to have to deal with type one, even though I know Look, my life is fine, great, right? Like I'm alive doing it. But I still dread like if they were to ever develop type one. Stacey Simms 33:30 Right? And not to minimize it because I 100% agree with what you're saying. But it's parenting is like that with everything right? Your kid gets the flu or is throwing up and you're like, I wish it were me. I feel so bad for them. You know, it's a totally different perspective than going out in the world. Like, I Ginger Vieira 33:43 hope you don't get in some weird accident. I mean, is it like just learning to walk? I was like, Can I put helmets on these kids are? pediatricians like that's not necessary. But there are sharp and I'm not really a worrywart like that but like suddenly you just Yeah. Stacey Simms 34:00 Alright, before we let you go silly question. Are any of the names in the book named after people or anything that you want to share? They're just names we love. Yeah, Ginger Vieira 34:09 we're working on a second one. Who's Mike? Unknown Speaker 34:13 Like, how much should we reveal? Mike Lawson 34:15 You do it? Stacey Simms 34:18 Is it the same topic? Mike Lawson 34:19 No, Ginger Vieira 34:20 not the same topic. It's called Ain’t Gonna Hide My T1D. That's all we're gonna tell. All right. Mike Lawson 34:26 We do have a website, which is diabetes, doodles, calm, free, downloadable supplemental worksheets, some word searches and coloring pages that go with along with the book. You can also find links to by when I go low and open up your bag, their Stacey Simms 34:41 web series, have you heard from siblings? I meant to ask that have you heard from siblings that read this, like, Ginger Vieira 34:45 you know, we've heard from actually parents who have type one, a dad ordered it to read to his kids so they would understand his type one better. And I read it with my kids. We have a read aloud on my YouTube and they know I have type 1 diabetes and they Now I believe mommy alone is low. So it's definitely I think grandma's could benefit from it. I think my aunt could benefit from reading it, you know, she thinks, Oh, we've had it so long. You take such good care of it. It's easy for you, you know, it's like, Nope, I still go low, just like the cat. Stacey Simms 35:19 Well, thank you both so much for coming on and talking about this. I loved hearing the stories behind it and getting better perspective and keep us posted when the next one's coming out. That's exciting. Thank you. Ginger Vieira 35:29 Thanks for having us. Announcer 35:35 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 35:41 More information about everything we talked about, just go to Diabetes connections.com, there's an episode transcription, you can go to the homepage and learn lots more, and order the book as well. And if you do, please leave them an Amazon review. I love the book, I left them a review, you can read it on the Amazon homepage. I just think that especially for younger children, a book like this is so helpful, because you can't expect I didn't say this during the interview. But I'll say if you're reading this book doesn't mean that your child is going to recognize lows. Right? I think that's one thing that I get asked a lot, especially when it comes to toddlers and children, frankly, under the age of seven, six or seven, how can my child can't recognize lows or when can I expect that to happen? And every kid is different. And your endocrinologist may have more information for you about this. But I think it's unrealistic to expect a three year old or even a five year old or sometimes a seven year old to really understand recognize and articulate that they're having a low blood sugar unless you have a child who is a preschooler and says, Mom, I think I'm having an ear infection, or I have a headache, perhaps I have a sinus infection. Kids don't think like that. They don't talk like that. They don't know what's going on. They don't even have the tools to articulate. My daughter is a great example. My daughter Lea doesn't have diabetes. And when she was little, she had a series of, she would get chronic ear infections for over a year and a half, we finally did ear tubes, and she had cleared everything up. But she used to get an ear infection and she would punch us she would just get angry. She wouldn't even say my ear hurts. Or she wouldn't point her ear and say my ear hurts. We just knew something was going on. This is between the ages of probably two and almost four, because she would be mad at us. And I think with lows with little kids, it could be the same thing. You can talk to them more about how to recognize it. And a tool like this could probably help speed up the process. But that's the only thing I would caution about and Mike and Ginger aren't making any claims like that. It's just a question that I get asked quite often. All right, tell me something good in just a moment. But first, Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night with my husband Slade and I got a Dexcom alert. Benny was upstairs in his room. And for some reason, it just took me back to the days when we basically had blood sugar checks on a timer. Do you remember this? Some of you people who have been around for a while, we would check doing a finger stick the same times every day at home and at school. And of course, whatever extra we needed to. It's amazing to think about how much our diabetes management has changed with Dexcom share and follow. I didn't stop the movie to get up and check him. I knew what was going on. I mean, I could decide whether to text him I could decide whether I needed to go up and help out using the share and follow ups have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me He loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend You know, you can help the person with diabetes manage in the way that works for their individual situation. Internet connectivity is required to access Dexcom follow separate follow up required Learn more at Dexcom comm slash compatibility. In tell me something good. This week, I popped into the friends for life Orlando Facebook group to gather some good news stories. And this is that big conference that goes on in July. They have not yet decided whether they will be virtual or in person come this July. But children with diabetes the group behind friends for life is putting on a virtual conference this coming weekend. It's their spring conference, I will link up more so you can find out register. It's always a terrific time. And I find these virtual conferences a really great way to just connect. I go and I listen to presentations. But more than that I kind of hang out in the hallways and talk to other parents and say hi to my friends. It's been wonderful. So ask them for some Tell me something good. And Laura Bilodeau who is the organizer, the Grand Poobah of all the friends for life stuff said Sam her son and Grace are planning to move back home house hunting in Detroit in the time of the pandemic. Oh my goodness, getting married in September. Life goes on. That is wonderful, Laura, such good news. I'm excited for you and your whole family. More wedding news, Erin shared I got a great report at the retina specialist No need to return for nine months. The next time I go I will be a Mrs. So that's fabulous. Both good news things right a wedding and a great eye report. I have a retina specialist appointment coming up. I don't have diabetes, but I've had some issues. And that is such a tough eye exam. And I know many of you, as you'll listen are saying, Stacey, get over yourself. We have to do that all the time. I know I do, too. But I hate it so much. I'm such a baby. So good on you, Erin. Thanks for sharing that inspiring us to be brave at our retina specialist appointments. Wendy says my first in person endocrinologist appointment was yesterday or a Wednesday was excellent. But I'm sharing this because Wendy also says she's been working nonstop scheduling appointments for COVID vaccines in New Jersey and Wendy, I assume that is for other people. And you've been helping out. And that is such fantastic work. It's unbelievable how complex this can be for people who are, you know, not used to using computers or using apps to schedule appointments. And I think we've been kind of lucky in North Carolina, that it's pretty simple here. Once your category opens. There's a lot more complex systems and other states that I've heard. So Wendy, thank you for doing that. Janice shared I have type two diabetes, but unrelated, I just had my 10 year check for thyroid cancer levels were undetectable. Always great to hear. Janice, thank you for sharing that. Lots of people also shared really great agencies and checkups. And I'm thrilled for all of you for that. And I hope you are just as happy in your lives with diabetes as you are with those numbers. You know how I feel I don't generally share numbers and tell me something good. But I really am happy for all of you. I know the hard work it takes to get there. Well, I know as well as a mom of a person with type one can know, right? I don't know the day in and day out work that you really are doing on an individual basis. So friends for life Orlando group, thank you for sharing all of your good news. I very much appreciate it. And I'll see many of you had the spring conference this weekend. I also want to share a little bit of good news about Benny: he has a job. I know Isn't he two years old still? Benny is now 16. He got his driver's license, and he has been really itching to get a job. He's got some projects he would like to spend some money on. And he just is an industrious kid. And you know, I think most 16-year-olds are ready to work. I certainly was when I was his age, and his dad was too. So we've been encouraging him. It's been very difficult, of course with COVID to find something safe. We've been mostly talking about like summertime jobs, but it happened pretty quickly and we got pretty lucky. He got a job at a local grocery store chain, just as North Carolina opened up to vaccines for grocery store workers. So the timing worked out really well. We were able to get him his vaccine. He just got the first Pfizer shot because he is 16 you can only get the Pfizer shot and he will start training and we are off to the races. So I'm really excited. I'm happy for him. I know that as soon as COVID is really over around here. I'm never gonna see that kid. I used to say as soon as he gets his driver's license, I'm never gonna see him again. Because he was busy before he could drive. I mean, obviously before the pandemic, but his junior year of high school is this fall and I think between sports that his job and social life Holy cow, it's gonna be busy around here who maybe he'll drop by for meals. If you ever tell me something good story. I would love to hear it. Please send them to me Stacey at Diabetes connections.com. Or you can always post in the Facebook group. I love to hear them. Hey, before I let you go, Happy St. Patrick's Day. Now I know we're not Irish or even close to it. And I know St. Patrick's Day, this year is a different kind of celebration, like everything else because of COVID. But I bring it up because it's actually my first date-aversary Yes, I made that up with my husband Slade and I don't know if I've ever told the story before in the show. So I'll tell it now. Slade and I met at a TV station in upstate New York shout out to Utica, very small city in upstate New York between Syracuse and Albany. I was hired at WUTR. In December of 1993. I had been working here there and everywhere in radio in Westchester County, just grabbing some part time jobs where I could and then I got hired full time to do this TV job in Utica. And then a little bit more than six months later, I got a new job at WKTV, the other TV station in Utica, and my commute got five seconds shorter because it wasn't even across the street. These two two TV stations were on top of a big hill, and they were the only thing on top of the hill. So it was like parking lot building personal building. And I was hired away by WKTV to be their main anchor. And I could talk about that forever. It was such a fun time and really fun memories. But that's how I met Slade and we met pretty much in the summer of 1994. We were friends you know just like you’re friends with the people that you work with. But fast forward to March of 1995. Slade and I were in the St. Patrick's Day parade in Utica, because I don't know if this even happens anymore, but local TV stations will often be in the parades right the anchors will be in the truck and waving and that's it That was me like a dummy and Slade was driving and I was like hello People who I do I wait, what do you do? I mean, you feel like an idiot, you're not a celebrity. You're a local news anchor. So the whole time we were joking about it, you know, not insulting the people, they didn't come to see us, they came to see the other things in the parade, but just laughing at the ridiculousness of the situation. And we had a lot of fun. And that was in the morning. And in Utica, as in many cities, the St. Patrick's Day festivities tend to go throughout the day. So we kept running into each other at the bars and the parties and this that the other thing, and then a group of people said, Let's meet up for dinner. So I went home, you know, took a nap, took a much needed shower, went out to dinner. And as it had happened during the day, the group was kind of getting smaller and smaller and smaller. And then the dinner group said, Let's go to Turning Stone casino, which is a gambling establishment about 30 minutes away from you to go. So a bunch of us went and that group was smaller than the dinner group, but it was still pretty sizable and Slade & I had a blast. I love to play cards. That's another story. And I really enjoy casinos. And it's probably a good thing that when we moved to North Carolina 20 years ago, the only casino was like two and a half hours away in the mountains and is nothing special. I think they've improved it. But we've decided not to go maybe until we retire. Because we went to Turning Stone a lot. But I'm getting ahead of myself. So by the time that evening started to wind down there were three of us left me Slade and another guy who bless his heart, I think was kind of oblivious of the whole situation. And finally, Slade said to me, do you want me to give you a ride home? And I was like, yeah, I'm done. And we went out to breakfast, at one in the morning, and then he dropped me off at my apartment. And when he dropped me off, he asked me out on a real date. That date by the way was I think was a week or two later and we saw BB King in Syracuse and we went to the dinosaur BBQ for dinner beforehand. That was a great date. But my first real date with Slade, as I counted is St. Patrick's Day. So long story their long way of saying, gosh, we've been together a long time. I feel pretty lucky about that. Happy St. Patrick's Day, everybody. All right, next week we're going to be talking about provention. Oh, this really is exciting. If you stick around till now I'm glad because provention. This is the company behind Teplizamub. Does that sound familiar? That's the drug that TrialNet and other studies have shown can prevent the onset of type 1 diabetes for up to three years. So far, I say up to but it's a three year study so far. So in this we're gonna go in depth who had worked for what it's all about. It's in front of the FDA right now. So this is a really interesting and exciting prevention treatment, not in mice, but then people will talk about that next week. In the meantime, of course, we'll have a classic episode in just a couple of days of please stick around for that. Thanks, as always 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. Benny 47:52 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Carla Greenbaum, M.D., chair of TrialNet returns to the podcast to discuss research and type 1 diabetes risk screening. Show notes for people who are Bold with Insulin > Get a FREE Omnipod Demo today > Find out more about the Dexcom CGM > Gvoke Glucagon the only Pre-Mixed glucagon > Learn about Touched By Type 1 > CONTOUR NEXT ONE smart meter and CONTOUR DIABETES app Add your voice to the T1DExchange Diabetes TrialNet A full list of our sponsors How to listen, disclaimer and more Apple Podcasts> Subscribe to the podcast today! The podcast is available on Spotify, Google Play, iHeartRadioRadio Public, Amazon Music and all Android devices The show is now available as an Alexa skill. My type 1 diabetes parenting blog Arden's Day Listen to the Juicebox Podcast online Read my award winning memoir: Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Thank you! Follow Scott on Social Media @ArdensDay @JuiceboxPodcast Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan. If the podcast has helped you to live better with type 1 please tell someone else how to find the show and consider leaving a rating and review on iTunes. Thank you! Arden's Day and The Juicebox Podcast are not charitable organizations.
Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes. More on T1Detect Our previous episodes on Trialnet And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you 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. Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings. Frank Martin 0:36 We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning. Stacey Simms 0:49 Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes. And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. 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 so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show. And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that. I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right? Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it. Dr. Martin, thanks for joining me. Frank Martin 4:10 Thanks very much, Stacey. It's good to be here. Stacey Simms 4:12 Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it Frank Martin 4:21 first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue. So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect. Stacey Simms 5:49 All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short, Frank Martin 5:55 short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so Stacey Simms 7:34 let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet Frank Martin 7:38 in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would Stacey Simms 7:55 think you know, you're not you're at home. You're not in a sterile lab. Yeah. Frank Martin 7:58 Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard. Stacey Simms 8:27 I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming? Frank Martin 8:54 So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces. Unknown Speaker 9:52 So let's get back to the test itself. Frank Martin 9:54 Sure. Stacey Simms 9:54 What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right? Frank Martin 10:03 It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it. Stacey Simms 11:46 Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone 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 am 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 Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one. Frank Martin 12:59 When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for. Stacey Simms 13:40 I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box, Frank Martin 14:01 right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program. Stacey Simms 15:17 So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's Frank Martin 15:34 gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible. Stacey Simms 16:37 I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done Frank Martin 16:53 this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk. Stacey Simms 17:12 You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one, Frank Martin 17:19 it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't have that sorted out yet. But they will have it and they expect to have it next couple of months, it's not a big deal to not have it right now, we can almost definitively say based on the results of this test whether or not you'll become insulin dependent over the course of the next couple years, z nta. The fourth one just helps you make that a little more sensitive. And it's just one of the things that we could add on going forward. Right now we're focusing on auto antibodies. But there's other things that jdrf research is trying to develop that might improve our detection of risk in the population, things like genetics, things like metabolic factors that we just haven't the science isn't done yet. In the future, you'll see things like that, I hope being rolled into programs like ours, Stacey Simms 18:12 when I was tested for I went through testing for trial net when I was young enough to go through testing for trial that but I kind of did it just to see, right we did not have type one in my family that I knew anything of a couple of years later, one of my my cousin's was diagnosed at age seven or eight, which is older than my son. But at the time, we knew nothing. But I never had my daughter tested. Because at the time I looked at it as well, if she's going to get it, I'm going to know the signs. Now. I wasn't worried about decay or anything like that. I wasn't thinking about the research aspect at all. Can you talk a little bit about why trialnet or G one detect why these are important to look at? Not just as Do I have it or not? but more of how can we prevent or treat type one? Frank Martin 18:55 That's a good question. Well, first, let me say that you speak about why you got tested Why you didn't test your daughter. A lot of TMD parents say that? Well, I'm going to see the signs and symptoms of diabetes coming on before it gets so serious that my child's in a hospital. That's not always the case. Right. Now, we see a lot of people saying that, but the science doesn't support that. So that's one thing. We're trying to prevent a serious hospital event that might occur diagnosis. This is what trial nets doing this is what other screening programs are doing. Second, there's a thought that there there's nothing I can do if my child is found out to have early stages of type 1 diabetes because they have these auto antibodies. And that's not necessarily the case. Because one, we know that there's really important monitoring that can be done in the hospital setting a blood glucose test something as simple as that, that can be done periodically, that could reduce very significantly, the chances of that child having DK also insulin therapy can start earlier because remember, just because you've auto antibodies in no symptoms, that doesn't mean you don't have to end you have T one D. And that means you're going to need insulin therapy sooner rather than later. So it really doesn't benefit people to wait on that. That's something to discuss with your endocrinologist. But starting that earlier actually is beneficial for all people at risk. Third, there are soon going to be ways I hope to intervene. Next year, we may see the approval of the first therapy that can delay insulin dependence in people with type one diabetes, a drug called to plews, a map from a company called prevention, that will be a really important first step in curing this disease and stopping it from occurring at all. And then to get at why would we screen more people, we know that developing new curative therapies for people to end Well, that depends on people participating in clinical trials. Now, I'm not I'm not saying we're doing this, because we want to put people into clinical trials. But the fact of the matter is that programs like trial net and other screening programs here in the United States or in Europe, are not identifying enough people to make these clinical trials go fast enough. That really slows down to development of new therapies for T one D. So one of the benefits of a program like this is to further increase the number of people who are aware of clinical trials. And we hope that that'll increase the development of new therapies. And also pharmaceutical companies will start to see, well, there's actually a lot of people out there clamoring for a treatment or a cure for this disease. Maybe we really need to be doing something about that. So it should get their attention pretty significantly. Stacey Simms 21:31 We've been talking about trial net this whole time, why not just team up with trial net? They've been doing it. They're the ones that developed the trials for two prism and got it this far, right? Why try something new. Frank Martin 21:43 So what Tron does is amazing, what they've done over the last 30 years is amazing. They've charted the progression of T one D, and they've led to the development, I hope that the first real therapies for T one D, we could keep funding research studies till the cows come home and have not made any progress towards our goals, our goals of having auto antibody screening as part of normal preventative services, to have auto antibody screening as something that that insurance companies will reimburse for. So what to detect, we hope will do is force those changes into the US healthcare policies to incorporate that into normal preventative services. We're also not restricting our program to certain ages, or to just family relationships. We'll try that does great, it's a really important model to say how can we find the most people the quickest, or the highest risk of type 1 diabetes, and we know that people who have a family member, especially a first degree family member, that has type 1 diabetes are at some of the highest risks in the population. So it's a really good way to quickly identify the most people you can, but it doesn't capture everyone. We're not capturing adults, almost 50% of people being diagnosed are adults. And we're not capturing that in programs like trial net, and almost 85% of people don't have a family member. So we're not capturing that in trauma. So by us doing something like to detect in parallel to trial that we're trying a different tactic that will hopefully get us both to the same goal of increasing the numbers of people available for clinical trials of changing clinical practice guidelines, things like that. And the fact of the matter is, you know, the people we identify in our program, are candidates for trial that hopefully will we feeding that ecosystem as well, with with our program, just to put a cap on it, Stacey Simms 23:32 it is different, it is distinctive, the testing, I mean, even the trial net, the way that they test you is not a finger stick? No. So it's just a different process altogether. Frank Martin 23:41 It's a different process altogether. So we also, we want to make sure that our tests had a type of kit or acid that anyone could use, that you didn't have to be near certain place for the test to be done, or you didn't have to wait too long for the thing to come in the mail. So there were certain boxes, we have to check with our tests that we thought were important for making it readily available to the most number of people as possible. And those were things like it had to be a commercial style kit, it had to depend on a blood sample that was really, really small, and really, really stable on a cardboard. Yeah, cardboard piece of paper that's sitting on my floor. My dogs are walking over it, but it's okay, cuz I can send it back and it'll be still fine. So there were a couple things we want to call boxes. We want to tick there. Stacey Simms 24:26 I went through the website a little bit. I didn't go all the way through it. Okay, I'm curious. I will probably order it, you know, just to kind of see maybe I'll get my daughter to go this time. But I'm curious what happens to the information. You know, am I signing and saying jdrf knows this medical company knows. Talk to me a little bit if you could about the confidentiality. Frank Martin 24:44 Did you look closely enough at the bottom of your webpages? Of course not, of course, not. Stacey Simms 24:50 The terms and conditions. Frank Martin 24:52 Exactly. So that's something that's really important, right? Because what we're talking about now is people's personal unprotected health. information, it's a test result. So we have to make sure that that is safe and secure, and that the person has choice and how that data is used. So you'll see at the bottom of the portal, there's certain disclosures opt in language, you have to agree to share your data with jdrf, or the company enable, we also have if you read the terms and conditions, if you agree to share your data with jdrf, we agree to protect it, we won't let anyone else use it without your permission, we'll only use it to improve the program, or to maybe facilitate future research studies. Because the data is going to come out of this, it's actually really important to see where people live and how old they are, and what ethnicities they are, as it relates to having auto antibodies. That's really valuable information for the research community. So we want to ensure that that data is available to them in a way that protects the person's rights. So pay attention to those little boxes at the bottom. But know that jdrf is working to ensure and will ensure that is used safely and to your best interest. Stacey Simms 26:12 Well, and I'll give you an example. So in other words, I am great with research, political scientists can have all my data that's fine. And jdrf can have the data. But the last thing I want is for jdrf to say, Hey, Stacey Simms wrote a book. And we're going to give Stacey all of this information for trial on that because here's a whole new customer base for her. Frank Martin 26:29 So that's not going to happen. We're not allowed to do that. No, if we were given that opportunity, Stacy, we would have the right to you and say, is it okay that we're sharing your data with Stacey Simms? And you'd have to say yes or no, we're making sure we can't do that without your permission. Stacey Simms 26:45 And we would never share Stacey Simms. She Frank Martin 26:48 never, never very bad influence. I mean, we know that already. Stacey Simms 26:53 aside, I'm really glad to hear that that's one of the Frank Martin 26:55 Yeah. And this is like maybe Jay dress first foray into having access to what could be protected health information. So we have to make sure that the patient's rights are front and center. And that's protected in any way we Stacey Simms 27:10 can, as we see the rollout of this you've mentioned we'll see social media, you're trying to appeal to more than the the jdrf families, you know, the families that are already at the walks and virtual events this year, what would be your your ultimate goal? You know, personally, would you like to see this in pediatricians offices in the next few years? Would you like to see it at as you say, you know, Web MD, check a box here? What are you hoping for? Frank Martin 27:32 There's Frank, personally. And then there's Dr. Frank, who works for jdrf. Stacey Simms 27:37 All right, let's start with Dr. Frank, Frank Martin 27:38 I actually would say both are the same goal, we really would like to see this as a normal part of preventative health care, so that when you're taking your child to a pediatricians visit, they normally would get a blood test for something at age two or three, we would like to see this included. So that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence, so that we can intervene earlier into these people, we can improve their health right at the beginning, that holds true to children and adults. There's a lot of adults who are mis diagnosed with T two D, but they really have T one D. So we want to make this available to all doctors, not just pediatricians and just become a standard part of healthcare. Stacey Simms 28:24 I have to ask about cost. I know you've said that you are subsidizing it's only $10 if people cannot pay the 50 or $55. You mentioned but that's still a barrier, isn't it? And is there a goal you mentioned health insurance isn't one of your goals to try to get that covered fully? Frank Martin 28:40 It is so with our big goal or my big goal and address big goal of having this included in as standard care and preventive services worldwide. That includes reimbursement. So what I almost envision is sort of like inflection point where Jeff and his partner should be able to float the cost of the test. And then eventually, insurers will start reimbursing and reimbursing or reimbursing that we sort of meet in the middle. And cost won't be a barrier. I'm acid that's going to take some time. Stacy, don't take some time. But it's right now people can take the receipt and try and get reimbursed for it. We really don't know how many companies will reimburse for this. And we're expecting that they'll have a lot of inquiries about this next couple of months. And we may have to have some phone calls with some of these insurance companies and deal with this issue. jdrf right now is working with our own insurer, the one that handles jdrf staff to see if they can include this as a reimbursable test. Stacey Simms 29:35 Yeah, because I'm gonna I'm gonna ask a question. And this is a tough one to ask. And I know it might be tough to answer. But without that, you know, you're going to get a subset of people taking this test, who are largely affluent, who are largely educated, better educated about diabetes, certainly, who are perhaps mostly white, upper middle class, all of those things that we know we need more, you know, we know we need more diversity in research and in diabetes. So I know you know, it's important, but I felt like it's really important that we talk about that. Are you prepared for that that first subset of people that you get to not be as diverse as you would hope Frank Martin 30:10 we are? I'm not expecting it to be the case. But it could be the case. And so one of the benefits of this program is that we'll see the data, we're asking for demographics, we're looking for where people live. And if they offer it, they'll give us their general salary, ranges, things like that, we'll see how that matches up with who's getting the test. And then this program can pivot, we can then take that information, say, oh, we're not penetrating the right population, we're missing out on a subset of people who might be no socio economically disadvantaged, we need to change the program to better target those people. And we can just turn pivot and do what we can to get those people because our goal is really access for everyone. Yeah. And so we will be consistently monitoring the program to see how we can best target these other populations. Stacey Simms 31:00 And I imagine there were a lot of conversations inside jdrf, not just about the funding, or the the cost for the people taking the tests. But there's a lot of hard choices going on at jdrf. Right now, in terms of what programs to fund. Before we wrap it up. Why was this one more important than other programs and employees and you know, chapters have merged, it's been a very difficult year. So to have something I got to imagine this was really important to you all. Frank Martin 31:22 So it's super, super sensitive question. These, this has been a tough year for us, we lost staff, we lost revenue, we had to make some really significant hard choices about what research we fund through all that screening has still maintained a major priority of the organization because it contributes to so many of our other programs that will accelerate disease modifying therapies into people's hands. That being said, this particular program, I mentioned before lives outside of the mission lives outside of the research mission is more community engagement, patient education, things like that. We have a partner on this. So we have a corporate partner to help subsidize the cost of the program. And we're going to solicit hopefully solicit support from other partners to make this sustainable in a way that it doesn't detract from our core mission of funding great research. So I do want people to be cognizant, this is slightly a separate program that jdrf manages, but it's really not impacting our bottom line of fundraise dollars going to the best research. This is stuff that we're soliciting. In addition, specifically for this program, we wouldn't be able to do this without our corporate sponsors, the first of which is prevention. And we hope to add more to the program in the next couple months. This is a disruptive program. We know people have a lot of feelings about this both good, bad somewhere in the middle. If people had those feelings, have those questions, they should reach out to us. We're happy to hear them to learn from them, and maybe improve or modify the program. And we're happy to answer any question. We have high hopes, we really hope that this will make some big changes for the lives of people with to end. And it may not happen immediately. But it should start happening in the next couple of years. We're excited. We hope other people are excited about this, too. Well, thank Stacey Simms 33:06 you so much for joining me to spend so much time and talk about this and explain it so well. And hopefully we can follow up and find out how it went a couple years. Frank Martin 33:15 A couple years. couple months. All right. Great. Thanks, man. Thanks for taking the time to talk to me. And listen, if you or your listeners have any questions, send them our way. Stacey Simms 33:25 You got it. Unknown Speaker 33:31 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 33:36 If you do have questions, feel free to send them to me. I think I'll put a post in the Facebook group, you of course, can contact jdrf directly, but I'll collect those. And I'll send them to Frank, and we'll get follow up, hopefully. So what do you think of this? Would you send away for it? Would you take it with you have your children take it? And what do you think about getting this to the greater population, I mean, that is where it really needs to be. I think if we can somehow screen for type one like they do in some European countries, they've started these screening programs where everybody of a certain age starts getting these screening tests for type one, I think that would be incredibly helpful for all the points that Frank made. So I'm really interested to kind of follow this and see how it goes. Of course links as always at Diabetes connections.com on the episode homepage, and all the information that you need will be there in the show notes if you're listening on a podcast app a little bit about the end of this year, and a look ahead to next year in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share there was no share when he got Dexcom. So trust me when I say using the share and follow apps really makes a big difference. Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of stuff. But overall it helps us talk and worry about diabetes less and if he's at a sleep over or away. It gives me so much peace. of mind, it also helps. And I love this part if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours, and not just at one moment in time. And that really helps you figure out what steps to take the alerts and alarms will be set also help us from keeping the highest get too high, and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow AP To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. I don't have anything profound to say about 2020 we have all been living this great awful together. longtime listeners have been going through it week by week with me here on the show. We've had some incredible conversations with us you listened some great zoom calls, some episodes, I put together with your thoughts as I interviewed listeners. And you know, it's really not as though the calendar is going to turn to January 1, and then everything's gonna be fine. You know, it's gonna be a long time. And maybe not ever before we go back to before, I'm not sure that life will ever be exactly the same as it was before COVID. But I do want to talk about just a few things that I'm thankful for a few things that have been a bright spot this year, when it comes to diabetes, control IQ has made a huge difference for Benny this year, I'm so thankful I'm really happy that the technology works as well as it does for him. And that we can afford it, we have access to it and we can afford the insulin that goes in it. I'm really thankful for my local group, we have tried to be there for newly diagnosed families. I mean, you know, we have a big Charlotte group, I've run a I run a Facebook group of seven to 800 families, it's 850 families at this point. And usually we'd be you know, we'd be hugging these new families would be crying and laughing and coffee shops and the kids would be meeting and homes and things like that and playgrounds. But we did our best on zoom. And in Hangouts. We have a lot of healthcare workers in this audience listening to this podcast, and boy, are we thankful for you, boy, do I salute you. I cannot believe how this all started off with everybody together applauding healthcare workers, I mean, literally right, making noise in some cities and banging pots and pans. And it ended with so many people not in this audience likely, but so many people openly define precautions and not taking things seriously, which puts more of you, you healthcare workers at risk. So stay safe, please know that we are thinking about you. And we do. Thank you. And to that end, I am very thankful and very excited that in our next bonus episode, we are going to be talking to healthcare providers with type 1 diabetes who have received the COVID vaccine. We're going to get their reactions to it and their messages about it. This is hokey, but it's true. I'm getting chills talking about this, because I've already done a couple of the interviews. And they're all talking about the hope that they're feeling. We do have a long way to go. But man, it's this this feeling that we haven't had for a long time. That episode is scheduled for New Year's Day, because I want to start 2021 off with some good news. I want to start it off, right? I'll post on social media if there's a change in scheduling or something happens. But right now, that's coming up on New Year's Day. Quick housekeeping little bit before I let you go, look, we're going to be technology heavy in 2021. On this podcast, you have asked for that you have shown by your downloads your interest and your requests that you want to hear about the latest and greatest in technology. I'm not gonna stop doing the personal stories, but we are going to have an emphasis on pump companies CGM, what's coming down the pipeline, that sort of thing. Because of COVID delays, I think we're going to see so much technology news, this coming year, I mean, new releases, new partnerships, and more, because there was supposed to be stuff happening this year that got pushed off. And of course, there was stuff that was already scheduled for 21. So there's gonna be a lot to talk about. I'm very excited to bring you a lot of those conversations. It's really cool to talk to some of these companies and find out what's coming down the road. We do have returning sponsors, I want to mention that and thank them very, very much, my friends at Dexcom and Gvoke are going to be with us for the new year. And we are going to be joined by a new sponsor Dario I can't wait to let you know more about them. Some of you probably remember them there, the nifty meter that kind of goes right into your phone. But there is more to them than that, although that is pretty nifty. So we're gonna be talking with them and, and bringing you a lot of stories and information from Dario. But thanks to all of my sponsors cannot do this show. without their support. I guess I could run a Patreon or SQL to donate but I think that you will do enough and I want this show to be free. I don't want anyone to have to pay to listen to it or feel obligated to send me a donation there are much better places to donate. So huge thank you to the sponsors that help me do this and devote the time that's needed to do it right. And again Dexcom, Gvoke and Daario. Please visit their stuff on my website. Check out their posts when we share them and support them if you can. I do have some other new sponsorship opportunities by the way so if you're listening in have a business that appeal to this amazing audience, this incredibly engaged, educated and fabulous audience, just let me know. And finally, I am pivoting in 2021 to do something completely new for me. And it is not diabetes related. Oh my goodness, I'm not stopping the podcast. We are full steam ahead. But I am going to be teaching other people about podcasting. I am so excited about this. I've been doing this at conferences for a couple of years now. I've been doing a lot of one on one. And I finally decided to pull the trigger and do this as a business hub. Boy, all right. I won't be talking too much about that here. But if you follow me on social media, you will get all of the info. And if there are new ways to follow me you'll you'll find them all there. All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. You know, you mean the world to me and that I think doing this show is really a privilege. I'm thrilled to be doing it for another year. I can't wait to jump in. I'm Stacey Simms and I will see you back here in 2021. Until then, be kind to yourself. Benny 41:08 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
What do you use to treat lows on the go? One of the newest options is a flexible necklace, filled with 15 grams of fast-acting glucose. The Thrive Glucose Gel Medical Alert Necklace is easy to take with you, rip off and open if you need it. The idea came to first responder Kris Maynard after his own severe low had to be treated by paramedics. His family had tried to use the "red box" emergency glucagon kit but missed a vital step. More about Thrive Necklace from Glucose Revival Kris also shares that one of his teen sons has been diagnosed with type 1 via TrialNet and explains how their family is coping with that knowledge. Listen to our first episode with Kris when the necklace was a prototype in 2018 Check out Stacey's new book: The World's Worst Diabetes Mom! New segment this week! Innovations – focusing on hacks and tips and tricks to make our lives easier. Happy Bob App on Facebook And Tell Me Something Good! Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week, what do you use to treat those on the go? One of the newest options is inside a necklace. The idea came to first responder Kris Maynard, after his own low had to be treated by paramedics because his son didn't know how to mix up the glucagon correctly. Kris Maynard 0:44 Why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for low blood sugar 100% of the responses have always been glucagon is just too much and it expires, Stacey Simms 1:00 we'll talk about Kris's solution, the thrive necklace, and his son recently was diagnosed with type one. He shares that story new segment this week innovations, focusing on hacks, tips and tricks to make our lives easier and tell me something good. 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 so glad to have you on. You know, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms. My son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and radio and TV news. And that's how you get the podcast. Quick birthday shout out to my mom. If you are listening today. This goes live on September 1. It's My mom's birthday. And she had a great line recently that I wanted to share with you. I was talking about how amazed I was with control IQ. We traveled back and forth from New Orleans recently to drop my daughter off at college. And Benny came with us. We rented an RV. I told this whole story last week, but it was basically you know, 11-12 hours in the car there. Same thing on the way home. And if you've done a long trip of any kind, you probably know that you need to raise your basal rates. We have done lots and lots of car trips. My parents are in Florida, we're in North Carolina, they spent the summer in Delaware. So we're all over the place. Except, you know, in the times of COVID, where we haven't traveled at all this was our first trip. Gosh, since everything started since March, probably but we've always had to raise Benny's bazel rates at least 50% that may seem like a lot, but he's very active kid and you know, sitting still, we really needed to increase basal rates by quite a bit over the years. And of course now with control IQ, we don't change them at all and it does all of the work for us. I was absolutely amazed. For the two days that we were on the road. I only grabbed a screenshot of our trip there. I didn't look on the way home. But he was 84% in range for that time with an average glucose of 139, which I will take hands down any day, which it would translate, I guess to a one see if like 6.4 or 6.5. I mean, it's only two days. But that's if you're if that's how you look at the numbers, that's what you would get. Now, of course, when we got to the hotel, he fell asleep and didn't have insulin and his pump. He wasn't in my room. He was in my husband's room, so I'll blame them for that. I wait a minute. I know that. Nope. We got two hotel rooms. So I stayed with my daughter. My husband stayed with Benny and it was kind of nice to just have it was two days that we stayed there and it was really nice just to have some time alone with my daughter. But yeah, that's that sounded weird about the separate hotel rooms. So that 84% range didn't last for another 24 hours but it was pretty close. I mean control IQ once you put insulin in the pump control Q does some incredibly heavy lifting for us. I was telling my mom about this, he was texting her about how great it was going. And she said, quote, sh—y disease, great technology. And I said to her, you know, I'm gonna send that to Tandem, because I'm sure they'd want to use that slogan. Anyway, thanks, Mom and Happy birthday to you. We have a lot to cover. This week, I've added a new segment called innovations which will be coming up after the interview. So let's get to it. Diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to one drug to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drug plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doc Visit your personal coaches always there to help go to Diabetes connections.com and click on the One Drop logo. I met Kris Maynard more than two years ago, it was July of 2018. We did an interview on the floor of the friends for life vendor area. I mean, you know what I mean? on the floor of the vendor area, that big open area, we were sitting at a table, but doing the interview various how I realized my microphones were not meant to be held. I will link back to that first interview, and you will hear a lot of that (microphone noise). That's why I bought microphones standards. But Kris Maynard's product that he brought to friends for life in 2018 was the prototype for what's become the Thrive Glucose Gel Medical Alert Necklace. He was there to get feedback, see if there was a need for the product. Kris is a first responder who lives with type one. At that same conference. His family went through trial on that testing. One of his teenage sons was found to have the markers for T1D, we've got a lot to talk about with Kris Maynard. Kris, thanks for coming on with me. It's great to talk to you again. I can't believe it's been two years. How are you? Kris Maynard 6:11 I'm doing good. It's I'm excited to be here. Stacey Simms 6:14 So much has changed. And I want to talk about not only your product and your family, there's a significant change there as well. But you caught my attention recently, because it looked like you were on Mount St. Helens. Can you tell me a little bit about what you've been doing? Kris Maynard 6:29 Yeah, well, it's something I've always wanted to do. I mean, it's really a way that I really wanted to be at a test or product. And I've learned over the last couple years, how much I love diabetics. I love being around other people that's living with the disease. So I wanted to be able to just challenge other diabetics to join us into making that hike. And I mean, it was something that physically was the hardest thing I've ever done in my life. But at the end of the day play it was so enjoyable. absolutely loved it. How long Stacey Simms 7:01 was it? Kris Maynard 7:02 round trip? It was a total of about nine to 10 hours. Stacey Simms 7:06 Now pardon my ignorance, but when I think of Mount St. Helens I only think of I think like so many people. I think of it as a an active volcano. Kris Maynard 7:15 Yeah, yeah. Okay, just make sure I'm not wrong. No, you're exactly right. 40 years ago is when it exploded here in Washington State. And we live about five hours away from it, and it just covered our city with ash. And so I was I don't remember five years old or so at the time. And I just remember wearing the masks really, of what we see being worn around today. Stacey Simms 7:41 I'm a child of the 80s I remember it's one of the the significant news events of my childhood like when they say what do you remember when you were a kid? You know, that's one of them. So living around the area, and again, pardon my ignorance, but people are allowed to climb now and you can go up there, there's no restrictions, Kris Maynard 7:56 correct. But you need permits to go there. We actually bought Tickets before co started because in April's when they start selling the permits, and those permits sell out within the first day or two. And so we got ours then to where they only allow 100 people to go up per day. And so it just happened to be that last week was our magical day. Stacey Simms 8:22 And you had a look at the pictures. You had young people, you had diabetes educators, was almost everybody in the group, part of the diabetes community. Kris Maynard 8:30 Yes, well, the most encouraging thing to me was two things is one person during the first mile was ready to call it a day. It was just too complicated in that first mile, and we'd kind of just gathered around and saw where she was struggling and she continued on was able to finish it, which was amazing in itself because when we look back, that first mile was 100 times easier than the rest and then 13 year old who's got type one. And I just physically think how hard and how exhausting it was for me. And to think that that 13 year old, was able to do it, because he had his struggles along the way as well. But for him to be able to enjoy that with his dad was just, I mean, encouraging and motivating. For the rest of us. It was amazing that he was able to finalize that exhaustive day. Stacey Simms 9:29 Did anybody need the thrive necklace, Kris Maynard 9:32 three people used it. In fact, the 13 year old ran out of supplies. That was the last thing that he had on the way back in about two and a half miles left, which was amazing because the cell service on that mountain was better there. And sometimes in the some houses or buildings that we go in and out. So he texts me saying, Hey, we just ran out of supplies. I'm worried for my son. Who just ran out of his food, his drinks and everything else. And so he said he just used the necklace. I don't know what his number was, but and then afterwards, he said it bounced back up to 157. But there was also other problems that he was also going through between the cramps running out of water. So it really wasn't about the necklace. It was being with other diabetics making that climb. Stacey Simms 10:28 Well, yeah, and I guess that's a good point. It's a good place to run out of supplies. If you're surrounded by people who also have their own. I assume that they shared with him or he got down. Kris Maynard 10:37 But I mean, by that time, we were separated, we were actually done. And so I we had to drive back to the finish line. And a friend of mine that was with me, I couldn't make the trek back because my legs were just cramped up and stiffened up and the buddy of mine who's in better shape, ran that last two miles to be able to get supplies. So, the buddy was amazing. He was the former firefighter. And another person was able to call 911, just in case, and then to see him walk that finish line to where you wouldn't have noticed that he was tired at all, or that his legs were stepped up at all. So yeah, I mean, it was fun to be able to embrace at the end and just cheer him on. And that's really beyond seeing him at the top of the mountain and then seeing him finish no one the struggles that he went through. Stacey Simms 11:30 Alright, let's talk about the thrive medical alert necklace. Give me your elevator speech. What is this? Yeah, Kris Maynard 11:37 well, it's funny because when I saw it a couple years ago, at the friends for life conference, really still at that point, it was just an idea. And we needed to figure out if it was something that was wanted or needed on the market that kind of helped formulate along with messaging that we're going through with other diabetics on now we need to make something out of it. And so learning that 80% of the diabetics Don't carry glucagon. And from the EMTs perspective 75% of the EMTs cannot administer glucagon can't give injections or can't give IVs. And so I look at it from the EMT side and from the diabetes side. So really the elevator pitch for us is we have the only wearable product to be able to help with the most common issue that diabetics face which is low blood sugar by using what EMTs use, being able to use it for any level of low blood sugar from a low to a severe state. Stacey Simms 12:35 No, let me just clarify that because I've always confused when I hear that one of the EMTs do how do they treat low blood sugar if they come across someone who needs that kind of help? Kris Maynard 12:44 Well, I'll take you from a time that I was unconscious camping with my kids is that they take the glucose gel, bring it and rub it on their finger and just massage it on the gums to become absorbed. And it was funny because that But it happened to me. I've administered it many times throughout my career, but I just never thought of carrying it myself because we always had glucagon. Well, that time that the ambulance was called for me, my son administered the glucagon for me called 911. What I thought that he knew was how to properly put it together. He didn't mix the two together. And so that was our failure on teaching him. But that's when I thought, why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for a low blood sugar 100% of the responses have always been glucagon is just too much and it expires. And so at that point, we're just thinking of a cheaper alternative that's really easier to find. Stacey Simms 13:53 So what was the reaction when you went from idea to product because when I last talked to you, we're not shipping as He said this was something more of a concept. What was the reaction? Right back to Kris. 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Now back to Kris and he is answering my question about the first reaction he got to the thrive necklace. Kris Maynard 15:14 overwhelming. Because again, I was thinking and an idea that day worked for me. And that's really where it was going to go to until my endocrinologist came back and said, You ought to make that available to all diabetics because you don't know how many or who you can help. And so that's when we took it to friends for life after that, and then seeing the reactions of people touching it. There was fun to see, in really all of this. The most exciting thing for me is being able to meet diabetics because before I went to that conference, there was only one other diabetic at that point that I've ever met or known. And now since then, I've met thousands. Each one of them. I get excited to meet because I love hearing their stories. I love seeing what works for them. And I love being able to share how we can help them as well. Stacey Simms 16:07 So tell me what the necklace actually is. Can you describe it because obviously, this is a podcast, we're not looking at it, although I will link up the website so people can see what it is, Kris Maynard 16:15 yeah, thrive glucose aid. It's implemented as a medical alert necklace. And as it's pulled off, I mean, it's held on by magnetic connectors. So it can really I just say rip it off, and then it becomes uncapped, like a toothpaste container. And it's just squeezed out. And you can put the tube right onto the gums, if that's the state that the diabetic needs to be able to get the help. Or I can just take it off and put it in my mouth and really just squeeze it out myself to just get my blood sugar back up. Stacey Simms 16:48 And when you say it's also medical alert, it's got the medallion on it. Tell me about that. Kris Maynard 16:52 Well, I went through a two year process, we put the blue circle on it as the symbol of diabetes because I wanted people to be Got to recognize it knowing that this is for diabetics to be able to help diabetics. And I mean, it took me two years to be able to get permission to be able to use that from the International diabetes Federation to whereas on the backside, is where it says type one diabetes or diabetes, so that again, it signifies if an EMT or someone looks at it, if they don't recognize the blue circle, they can see that it is a person with diabetes. Stacey Simms 17:26 I know you've heard this, so it's not criticism. But what do you say to people who tell you? Look, Kris, this is great, but I can just throw some Smarties in my pocket. Or, you know, I've got the icing with me, what do I need this for? I wouldn't argue with that at all. Kris Maynard 17:43 Because I mean, when I learned that only 58% of diabetics carry something to treat with hypose that concerns me that concerns me that 80% of the people don't carry glucagon. So it's that 80% that I'm scared for and I want to To help if people can eat something, or drink something, that's what I want them to do. Matter of fact, if they're conscious enough to be able to take something else, we don't want them to use the necklace because there's more cost effective alternatives. Matter of fact, with me, I carry a, like a eight ounce juice really wherever I go to where I'm saving the necklace for my wife, kids or someone else to where if I can't administer it to myself, they know where to find something. They don't need to go look in a duffel bag, a drawer, a car, wherever it might be. They know where to find it, they can rip it off and now administer it to me. Is it refillable? It is and that was another process through our FDA attorney from the get go she said it cannot be bought. Why is the question Stacey Simms 18:48 in the way I did you heard me like bracing. Can you kind of Yeah, because I remember it couldn't be at the time but Kris Maynard 18:53 yeah, it took about six months to be able to figure out that on being able to have them Make it refillable, because from the get go when we initially started about, we wanted it to be refillable to be more cost effective for the diabetic. So that was hurtful news when our FDA attorney told us that it cannot be and then once we figured out how to make it refillable, then we got back on track with what our goal was. Stacey Simms 19:22 So while back, you were making these available for healthcare providers, and now I see you're making them available for teachers. Yeah. Tell me about these campaigns. How did you decide to do this? Kris Maynard 19:34 It's funny because you give me the chills when I hear that the health care workers as soon as COVID started, I'm all about the diabetic from the business side. I don't look at it, unfortunately, and I hate to admit that I don't look at it from the business side. I've never looked at coming into this business trying to make money from it. When COVID started, I wanted to be able to provide a way to all diabetic healthcare workers so that they have something And just because at the time and still today, we didn't want them to have to worry about a low blood sugar at a time that they're working their tail ends off on to helping us in our country trying to get it back to a normal state. And so I mean, we ended up giving about $70,000 worth of product during about a four month period. And now as schools are starting to begin now our goal is because the lack of school nurses and and the ones who can actually help administer anything, because ours is FDA a food product. Now, teachers, principals, friends, family, anybody can help with this. If it's needed. They don't need to wait for the EMTs fire trucks ambulance crews to arrive. Now they can help administer what's within our necklace knowing that that's what EMTs are going to use anyways. Stacey Simms 20:57 Alright, so tell me the secret. How are you? able to afford all of this and how can we help? Kris Maynard 21:03 I still have my firefighting job. And so time if you can afford me more time, I would love it. Fortunately, we did get some good press out there. And we are able to match really one per one on what we gave away versus what we're selling. And if I can continue that match in one for one, I will do this for the rest of my life, being able to get this out there until there's something else out there that can do better. And I know there's other products. In fact, one product I just picked up and I've been in deep discussion with with xirrus because I think their company that's offering one of the best solutions for low blood sugar, or a severe unconscious with their new GE Volk auto injector. I absolutely love that product. I brought that with me when I climbed Mount St. Helens just so I can have Security so other people can have that security as well. I don't look as a business that I'm trying to compete with anyone. I just want to be able to provide something for anyone that wants to wear a wearable or to have a product to where they feel more comfortable with. And I compare it to some people like apples, some people like peaches, some people like great. And that's what we are. We're one of those. Stacey Simms 22:25 I love it. It's interesting when you're talking about xirrus and the G Volk hypo pen, you mentioned at the beginning of this, that your son didn't mix up the glucagon, the traditional that red emergency box right that glucagon correctly. And so many studies show that people do not do that correctly. I went to a training, it's probably four years ago now. And I'm, you know, I'm so well educated and every year I take out the old glucagon and mix it make sure I know what I'm doing. And the CDE laughed at me because he said I was holding it wrong. I had my thumb on the back of it. So I would have actually have pushed it too early, you have to throw it like oh, throw it you have to hold it like you're throwing a dart Do not throw your look. Yeah. So I was shocked that I would have been one of the many, many people who use it incorrectly. I kind of ask you, is your son okay about what happened? I mean, I know that you probably are fine. And you know, and you've got to reassure him, but after all this time is he is he's still upset about it. Kris Maynard 23:23 Oh, he wasn't upset about it that next day. Oh, great. He knew and I knew that it was an educational thing that I neglected on, leading to him. But I mean, at the end of the day, nothing happened. I was able to after I got the glucose in my mouth, everything was fine. And so fortunately, he was able to move up and move on with his day, the next day. Wow, Unknown Speaker 23:47 that's great, though. How's everybody doing? Now? You've got two sons. They're both just they're both off to college. Kris Maynard 23:53 Yes, one just moved out this last few weeks and the other ones getting ready to move in about three weeks. And the scary part from my end is the one that's moving across the country is expected to be a type one within the next two years. And that's really something that motivates me encourages me to try to get heavily involved with the diabetes side. There's a lot of things that I don't think being done enough for diabetes, and I want to make sure that I understand the full spectrum so that I can get him the help he needs. Because really, when I was young into my firefighter career, I lost my job for two years because of a low blood sugar. I want to make sure that that doesn't happen to him. And that doesn't happen to any other diabetics. Stacey Simms 24:41 When you say he's expected to become type one. I assume you've done trialnet correct. Wow. Tell me about that experience. Had you always taken the kids through or was it something you did that you tried newly Can you can you share a little bit about that? Kris Maynard 24:57 Yeah, the friends for life conference really changed. Many things about me personally, and for the rest of my life, because that conference to me taught me so much. And that's where we were introduced to trial net. And that's where we brought our kids to get tested, including my wife, she got tested as well. And that's where we found out our son had to have the indicators that he's going to be a type one at that point was within the next five years. Stacey Simms 25:24 Has he shown any signs? Is there anything that you have to do now? Or is it just something that you kind of monitor? Kris Maynard 25:29 No, it's something we monitor, and he could have gone through some trial testing. But we left it up to him to decide if he wants to partake in that. So really, what I do is I'll take my decks and have him wear it for a few days so I can monitor him to see if his numbers are elevated at all. And fortunately, he's a good sport about it. He still doesn't like to get poked or prodded at but fortunately he's had me to figure out the ups and downs with a diabetes. So he's up for, I almost think that he's an expert in it just as much. But getting him to really, as I say, play my game so I can monitor him and see how he's doing. So the scary part for me is when he goes to college, because now we're apart from him. And so we've been in great discussions with the school nursing program, so that I mean, I'm asking them to test his blood sugar every time that he comes in for a doctor's appointment, so that they know and he knows where he's at. Stacey Simms 26:35 Are you and your wife, glad that you went through trial net, knowing what you know now? Kris Maynard 26:40 Yes, whether it's good news or bad news, I always like the truth. That just helps us to be able to prepare and educate him in the process, because I'd hate to find out in two years from now, without knowing that he's a type one thinking that we could have prepped him in some way and so He's really prepped now to become a type one at any point. I love the, of what trialnet is doing and what they offer. Stacey Simms 27:07 Thanks so much for sharing that. I think people worry about doing trial net, you know, they're not sure what they're going to find out, but I would want to know, so what's next for you? You go on up any more volcanoes you coming up with any other products? Or are you just trying to get your kids off to college? Kris Maynard 27:22 You know, going up that mountain, I said probably a good 20 times remind me never to do this again. Because of how hard it was. But now that I'm past it, I would love to go do another mountain climb. It's weird how the mind works and how forgetful it can be once you get past something. But at this point, I mean, the the group that we're with, they are more experienced than what I'm in on the mountain climbs. They want to start doing some annually. Whether we do that or not, I don't know at this point. The fun part of this journey too is that somewhere along the line Shark Tank, found us and reached out to us and interviewed me and said, Hey, would you like to be a part of the show? And thinking immediately, I would love to broadcast diabetes on a national stage. So, yes, and so they gave me one week to make a video. And that video that we made, we shared on social media and got tons of viewership tons more than what we normally do. The hard part that we've learned from that is that they said they would contact me by whatever date that it was, and we'd never heard back so we assume we didn't make it to the show. But again, what a fun experience to be able to go through trying to figure out how to put something together answering 50 questions, getting it done within one week and a video getting it back to them. Stacey Simms 28:55 So you never know they may call and now you know for the next time too. had to do that even better. But we'll keep an eye out for you. Yeah, that sounds great. And I'd love to, is that video still online? Kris Maynard 29:06 Yeah, we have it on our YouTube channel. I don't think it's on the website anymore. Stacey Simms 29:12 I think Listen, it's a great experience, right? And you never know, they could call. But we'll leave that video up, you know, maybe somebody listening will see it be able to pass it along to the right people you never know. Kris Maynard 29:23 Yeah. And again, it really I mean, two things is one I want to get diabetes on that national stage and to the blue circle. I've been in contact with the CEOs that beyond type one jdrf and the ADA on hoping that they will just put the blue circle around their emblem, I don't want them to lose their emblem, but really, each one of them has told me that they want to brand themselves and from that from the diabetes side. That's not comforting to me, because I know outside of the diabetes community, what I've learned is that the jdrf is really known as the wall And the ADA is known as illegal. And most people don't know what beyond type one. And I think if the diabetes community got on the same page, how much efforts we can make, because the pink ribbon for breast cancer, I mean, it took them about 15 years to be able to build up that, but the funding for that from the government agencies skyrocketed. And so that's what my hope is with the blue circles to get the diabetes community whether it's type one or type two, because the power numbers coming together, and recognizing that blue circle is what's important to me. So that the fundings there so that I mean, if one out of every three in our world is going to eventually have diabetes, now's the time to come together so that it can get the funding that it needs. So that one out of three doesn't need to get diabetes. Stacey Simms 30:51 I hear you. Well, Kris, thank you so much for jumping on and sharing your story and the update with us. I really appreciate it. It's great to talk to you again. Kris Maynard 31:00 It's great talking to you, Stacey. I appreciate your time so much. Announcer 31:08 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 31:14 And you could find out more about Kris and about the necklace. There's a couple of different kinds, mostly about sizes there. And there is a promo code, you can find that all at the episode homepage at Diabetes connections.com. Kris is generously giving my listeners 15% off using the promo code, blue circle, and that is all one word. And I really wish him the best. It's not easy to have both your kids going off to college, certainly in a year like this. And certainly at a time when the younger one you know, they're kind of waiting to see what happens in terms of diabetes, but I'm a huge fan of trial net. I really do think as he said, you know, you want to know and I have a lot more information on the website as well. If you want to search that up. We have a very robust search box if you're new to the show. This is Episode 320. And you can search by episode type. You can search by Subject keyword or by date, and we've done a couple of episodes on TrialNet that I would highly recommend. Alright, my new segment Innovations coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And when Benny was very little, and in the bathtub or at the pool, a kid could have spent the whole summer in the pool. I always noticed his fingertips. I mean, you know exactly what I mean. They were poked so much, they were just full of little pinprick holes. You can really see when they got wet, although I don't know if people actually know this anymore. I mean, they were like little Franken fingers. But when when you have a little kid now, so many of you are already on Dexcom so quickly, I'm not sure if you've gone through this. This is fingertips basically look normal right now. We have been using Dexcom for almost seven years. With every new iteration we have done fewer and fewer finger sticks. The latest generation the G six eliminates finger sticks for calibrations and diabetes treatment decisions. Just thinking about doing the 10 finger sticks we did every day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Alright, let's talk about innovations. This is a new segment I'm starting because I have heard about so many fun things over the years that you are so smart to come up with. And I want to help spread the word. So let's start talking about your innovations. Now this segment will include everything from probably cool stuff coming down the pipeline that we hear from industry and tech companies and I really want it to include your innovations and that can be everything from the woman Gosh, I wish I remembered who this was years ago. She gave me the advice of if you're in a hotel and you have insulin in the fridge or if you're leaving your home and you have insulin in the fridge you want to bring on a trip. She leaves a shoe in the refrigerator the shoe she is going to wear in the morning So she does not forget. Now I use that but I put my car keys in the fridge. Because I'm not putting a shoe in my refrigerator. I'm not even putting my shoe in a hotel refrigerator. But I do put car keys in so that you don't forget, it really helps. You can't go anywhere without the keys. And when you get the keys, if you forget where you put them, hopefully you remember you put them in the fridge. There's the insulin. So that's the kind of stuff I'm thinking of for this segment. This week. Although I guess I just gave you one there. I want to talk to you about happy Bob. Happy Bob is a new app. And it was created by a mom of a child with Type One Diabetes. Her son was diagnosed at age six. She lives in Finland, which by the way has the highest incidence of type 1 diabetes in the world. What is happy Bob, it is an app that connects to Apple Health kit, it streams CGM data. Now it gives you you know, stars that you can collect. And I think there's a bunch of apps out there that have tried to gamify diabetes, which really hasn't gone over that well because most people they just want to do less. They don't want collect points. Although that is a popular aspect of happy Bob, the big deal about it is that it gives you editorial for where you are. It'll say things like your blood sugar is 110. You are awesome. Or your blood sugar is 138. Your numbers today has been on fire. If I had a buddy, I'd be dancing right now. He was silly things like that. But the best part about happy Bob, in my opinion, is his alter ego snarky Bob snarky Bob enjoys making. I wouldn't say rude comments, but more sarcastic comments. And they're always changing. They're funny. It's just such a smart idea. Now I did mention that it links to Apple. I just found out that they are testing the Android app. So of course they are developing this. There's even a Facebook group I think or a Facebook page for sure. For happy Bob. So I will link all of that up in the show notes. I tried to get Benny to put it on his phone. But he as of this point is not interested although he did think that the snarky Bob It was pretty entertaining. kudos to them for doing this. I think it's fantastic. If you have an innovation like that, send me something I'll post in the Facebook group as well. You can always email me Stacey at Diabetes connections.com. I'm very interested to see what we come up with as a community. You've got some great fun hacks out there and some really useful stuff too. So let's help each other and spread the word. All right, time for Tell me something good. And this one is really a nice one. We don't have any huge milestones. I don't have any marathons or 50 year diversities. These are all kind of a day in the life kind of things you'll understand what I mean. Caitlin says my tea Wendy got to have her first playdate with her best friend. Since lockdown began in March. They were so happy to see each other and only had to be reminded once to keep their masks on, which was pretty amazing to me. She writes since they are four and five years old. When we left she said it was her best date. Mike Joyce said the wild flowers on the Pacific Northwest trail are pretty great. And he sent a beautiful picture he posted in the Diabetes Connections Facebook group. Also Mike writes, I've walked a third of the trail to the Pacific Ocean from Glacier National Park. Mike keep the pictures coming. That said our six year old T1D jumped off a small Cliff into a mountain Cove this weekend. She has no fear of man, everybody's getting outside. I mean, that's one good thing. We're all spending more time outside and Shelley said the rain is finally filling up our new backyard lake. If you look closely in this picture, again in the Facebook group, you can see my four year old and his new favorite way to burn that glucose and this kid is splashing. So if you have a Tell me something good. I think these are all great stories. Send it to me Stacy at Diabetes connections.com or post it in the group. Just something that makes you smile. I love sharing these stories. Before I let you go, I am working on a new episode. This will be out probably by the end of this week, and I'm a little nervous about it. So I really hope you give it a listen, I have a feeling. I've been working on this for a while that the philosophy of kid first diabetes second is really not working, actually never worked. So I'm going to be talking about that what I mean explaining it and dipping my toe into I think some pretty controversial borders. So I'm not asking you to agree with me. I mean, you haven't even heard it yet. I am asking you to give it a listen and let me know what you think that'll be out in just a couple of days. And then back to our regular you know, interview type episodes next week. big thank you to my editor John Bukenas from Audio Editing Solutions. A big thank you to you as you listen, I absolutely adore doing this every week. It is such a privilege to create the show for the diabetes community. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days for that bonus episode. Until then be kind to yourself. Benny 39:07 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show. Watch the JDRF Facebook event with Dr. Jane Buckner Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes. Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast. This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet. So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo. Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that. Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet. Dr. Jane Buckner 4:25 And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes. The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial. So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas. What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin. Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those. we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease. at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one. And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers. This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on. So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost. Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this. So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19. Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done. Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant. I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day. Announcer 24:40 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 24:46 More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom. Back in the olden days before share, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo. So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question. And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud? Stacey Simms 28:53 All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself. Benny 29:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved, All wrongs avenged
For the first time, researchers have managed to delay the onset of type 1 diabetes. In a breakthrough study, TrialNet was able to delay the onset by two years. Join the Diabetes Connections Facebook Group! Stacey talks to Dr. Michael Haller in-depth about this and other studies. An excerpt of this interview ran in our previous episode. In this episode you'll learn more about how TrialNet works, other promising studies and why it's so difficult to prevent an auto-immune disease. Plus, an update on the funding for TrialNet and why they've changed how they re-screen families and individuals. Sign up for our newsletter here Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
For the first time, researchers have managed to delay the onset of type 1 diabetes. In a breakthrough study, TrialNet was able to delay the onset by two years. Stacey talks to Dr. Michael Haller about that and other studies, about what TrialNet does and what we can do to help further this research. Join the Diabetes Connections Facebook Group! In our Community Connection, this week Project 50 in 50 hits a big roadblock – this was actually a big scare. We’ll tell you about it and what’s next for these two outdoor adventurers. Sign up for our newsletter here And in Tell Me Something Good, a little bit about meeting some of you in person and the power of saying YES. ----- 1:35 Welcome! What's on the show this week? Stacey explains this interview is an excerpt and the full interview will run in a bonus episode. Check out the new website! www.diabetes-connections.com Learn more about Stacey's book and ask her to come speak at your event! 4:55 Interview with Dr. Michael Haller 34:10 Update from Patrick Mertes of 50 in 50 42:00 TMSG: Stacey shares stories from the Friends for Life conference as well as some terrific listener stories 48:00 Stacey talks about where she's going next: JDRF Central VA in mid-August for their Type One Nation Summit Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
In the episode we were joined by two very special guests, Associate Professor John Wentworth and Belinda Moore. John is a visiting Endocrinologist and the Royal Melbourne Hospital, a senior diabetes researcher at the Walter and Eliza Hall Institute of Medical Research, lead for TrialNet in Australia and New Zealand and he is involved with the ENDIA study. Belinda is a Research Nurse Study Coordinator at ENDIA, a credentialed Diabetes Educator, Peadiatric Nurse and Registered Midwife. In this episode we covered lots of interesting topics including how diabetes affects Aboriginal communities, current research into the detection and cure of type 1 diabetes, diabetes in pregnancy and how diabetes affects mental health.
This week, diabetes educator Heather Lage has a daughter with type 1 and a son who's tested positive through the screening service TrialNet. TrialNet offers a screening test that can detect markers for T1D called autoantibodies up to 10 years before diagnosis. What’s it like to know your child will get type 1 diabetes? What does her son think about it? Heather Lage shares her family’s story. TrialNet's ultimate goal is to learn enough about diabetes to prevent it. Many people who test positive are given the chance to enroll in clinical trials. Also this week, a look at the 8th annual Diabetes Blog Week. Stacey talks with Karen Graffeo who started this event and has been amazed at the growth. Plus, Stacey announces her partnership with Bike Beyond, a cross-country bike event from the people at Beyond Type 1. Stay tuned or more information and on the road reports from these incredible bikers, all of whom have T1D.
TrialNet is a collaborative effort to prevent type 1 diabetes Researchers in this study are part of a larger group called Type 1 Diabetes TrialNet. TrialNet is an international network of centers dedicated to the study, prevention and early treatment of type 1 diabetes. We have clinical centers in the United States, Canada, Europe and Australia. We are conducting studies to: Test family members of people with type 1 diabetes to determine their risk to develop type 1 as well.Learn more about the common risk factors among people who develop type 1 diabetes.Test treatments that could delay or prevent the onset of type 1 diabetes. Test treatments that might help people who have recently been diagnosed keep producing their own insulin. Show Notes CLICK IT>> TrialNet dot ORG
The Division of Pediatric Endocrinology and Diabetes is committed to providing patients the best medical care possible. This commitment goes hand in hand with their dedication to discovering and pioneering the latest treatment methods through ongoing clinical research. Their research areas include a vast range of topics associated with endocrinology, including diabetes, growth and growth hormone.At Children’s Mercy Kansas City, approximately 200 children, adolescents and young adults are diagnosed with type I diabetes each year.Patient volume, combined with a diverse patient population, the broad geographic area covered, and a full-service program, means Children’s Mercy is well positioned to conduct research on diabetes prevention, and serve as an Affiliate of the National Institutes of Health’s TrialNet.The work TrialNet and Children’s Mercy do today may help prevent type I diabetes tomorrow or at least make it easier to control by preserving beta cell mass.Mark Clements, MD is here to discuss how the goal is to identify individuals who have the genetic predisposition, but who haven’t develop the autoimmunity and have not experienced destruction of beta cells in order to preserve their beta cell mass and prevent the development of type I diabetes in these individuals.
Kristina and Greg Dooley's daughter Isabella was diagnosed with type 1 diabetes at the age of two. I spoke with them both to find out what it is like to raise triplets (Yes, Isabella is a triplet) , breaking up with their Endo, TrialNet, I found out which one of them is better at counting carbs and so much more. Inspired by Isabella It's a great conversation with a wonderful couple that I know you will enjoy. Links from the episode Inspired by Isabella blog - Facebook - TwitterType 1 Diabetes TrialnetBlog post written by my brother after he saw Arden's second seizure at DisneyArden describes a seizure (video) You can always listen to the Juicebox Podcast here but listening and subscribing through iTunes or Stitcher helps you to never miss an episode.