Breakthrough T1D’s Improving Lives Program aims to ensure that people with type 1 diabetes (T1D) have the best quality of life possible until we realize cures. Daily T1D management is burdensome and demanding, and it can take a toll on mental and emotional health. That’s why providing psychosocial support to the T1D community is a key component to our Improving Lives work.
To better understand the mental health needs of the T1D community, Breakthrough T1D and our partner, The Leona M. and Harry B. Helmsley Charitable Trust, co-hosted a Psychosocial Roundtable earlier this year, convening mental and behavioral health experts across the T1D care spectrum.
The goal was to understand how Breakthrough T1D can improve its efforts in the psychosocial space to provide the best possible resources so more people with T1D do better. Read on to learn about the current state of mental health care for the T1D community, what Breakthrough T1D is doing to help support the mental and emotional wellbeing of people with T1D, and the challenges we still face.
Diabetes distress, depression, anxiety, and disordered eating are the primary psychosocial conditions that people with T1D may experience. They can arise from the stress of day-to-day T1D management (such as insulin dosing and fear of hypoglycemia), a new T1D diagnosis, or long-term complications.
According to the American Diabetes Association, one in four people with T1D will likely experience high levels of diabetes distress, which itself can lead to worse blood sugar control. It is often associated with anxiety and, if left untreated, can develop into major depression. Diabetes distress more often impacts adolescents and young adults with T1D.
People with T1D may also develop eating disorders, often manifesting as anorexia, bulimia, or purposeful misuse of insulin to lose weight (diabulimia). These issues are more likely to occur in women or girls.
In recent years, there has been a surge in research addressing diabetes distress. In addition, Breakthrough T1D spearheaded an effort to support the publication of clinical guidelines for autoantibody-positive stage 1 or 2 T1D, which has an entire section dedicated to guidance for healthcare professionals (HCPs), families, and caregivers to provide psychosocial support.
Psychosocial interventions are structured programs led by trained professionals that can help alleviate mental and emotional distress. For example, a Breakthrough T1D-funded study is examining the use of cognitive behavioral therapy to address anxiety in presymptomatic T1D. This type of intervention may help ease fears caused by impending onset of T1D symptoms—and may even be applicable to people who might be too nervous to get screened.
The most successful models for mental health care in practice have been group-based, fully virtual, limited in time, and focused on emotions. To further elevate mental health interventions for the T1D population, Breakthrough T1D has developed a multi-pronged strategy to ensure that people with T1D can get the support they need:
Despite the availability and success of interventions that help manage mental health and T1D, there are still gaps in care that we need to work hard to overcome.
One of the most pressing barriers to incorporating psychosocial interventions into clinical practice is a lack of HCPs who are trained to provide mental health care to people with T1D. Many clinical settings don’t have the resources to support an additional behavioral health expert specifically for T1D, so T1D training programs must include an understanding of how to provide mental health support as part of comprehensive care.
Along these lines, many HCPs and families may not know that mental health support programs exist for people with T1D. Or, if they do, there may be logistical challenges for participants, such as time constraints or meeting location.
The T1D research community needs more scientific, data-driven research for psychosocial interventions. For example, there has been little research to date on disordered eating and T1D. An inquiry spearheaded by Breakthrough T1D affiliates in the U.K. determined that there is a significant gap in education, clinical guidelines, and recognized criteria for T1D-associated eating disorder diagnoses. Similarly, because diabetes distress is not considered a mental health disorder, there are no clinical criteria associated with it—making diagnosis and treatment even more difficult.
Because of these challenges, the rates of screening and use of evidence-based mental health support programs for people with T1D varies significantly between clinics. Even more, there is the persistent issue of mental health care reimbursement—if it’s not covered by insurance, people with T1D may choose to not utilize the programs available to them.
Thanks to the experts who convened at the Psychosocial Roundtable, Breakthrough T1D has a path forward for tackling these pressing issues. We need to do more for the mental and emotional wellbeing of the T1D community—and we’re working hard to increase research into and awareness of psychosocial support programs that may improve the quality of life of people with T1D.
One way Breakthrough T1D is working to improve mental health care is through our recently launched Medical Affairs Program, which is addressing gaps between access to interventions and adoption by HCPs—a major effort that includes HCP education. It will be critical to integrate psychosocial care into clinician training and routine T1D visits.
Breakthrough T1D is also working to encourage innovative, interventional research and investing in promising studies—especially in less-studied areas, like T1D eating disorders. The next step is making sure that these studies can be incorporated into clinical practice by HCPs so they can be accessed by the people who need them most. We understand that psychosocial support needs to expand across the entire T1D population—including adults, people who are pregnant or recently diagnosed, and underserved communities—in order to have the greatest impact.
So, what can you do? Keep an eye out for psychosocial clinical trials that you or someone you know may be eligible to participate in. Refer to Breakthrough T1D’s mental health guide for additional support and guidance.
Breakthrough T1D strives to accelerate life-changing breakthroughs to cure, prevent, and better treat type 1 diabetes (T1D) and its complications. To accomplish these goals, we use a multi-pronged strategic approach, including conducting scientific studies and educating our community. In line with these goals, Breakthrough T1D recently published two peer-reviewed journal articles. One detailed burdensome unmet needs in the T1D community and identified key steps we can take to meet these needs. The other used real-world data to better understand American T1D demographics and predict changes in the next decade.
Let’s take a deeper dive into each.
This commentary reviews previously existing data across the T1D care spectrum to help demonstrate the magnitude and significance of the unmet needs faced by people living with T1D. This information is used to emphasize the urgency researchers, sponsors, and regulators must place on developing cures for T1D. The authors provide recommendations and actionable steps to overcome scientific, clinical, and regulatory challenges that will help meet these needs.
To say that the daily routine of people living with T1D is hard would be an understatement.
Insulin injections and dosage calculations. Wearable tech maintenance. Carbohydrate counting. Mealtime and exercise tracking. Doctor’s appointments. Hypoglycemia, hyperglycemia, and diabetic ketoacidosis (DKA) avoidance. It requires constant attention: 24 hours a day, 7 days a week.
The truth of the matter is that T1D management is a burdensome, demanding, and highly intensive task. There are no breaks, vacations, or time off—even overnight, it requires management. These challenges remain, even with today’s advancements in technology and the emergence of novel therapies for T1D. Simply put, we need to do more for the T1D community, and we cannot settle for the status quo.
The challenge of day-to-day T1D management compounds into long-term negative outcomes for the T1D population. Despite improvements in mortality rate, the life expectancy of people with T1D is still shorter than those without T1D.
Keeping blood glucose in a normal range is extremely difficult, and people with T1D need to be acutely aware of their insulin doses to prevent highs (hyperglycemia) and lows (hypoglycemia). Prolonged hyperglycemia leads to heart, kidney, and eye damage. Hypoglycemia can be very dangerous and a source of distress and anxiety, especially if it occurs often and eventually without symptoms (termed “hypoglycemia unawareness”).
Current technologies cannot solve the problem of hypoglycemia or make people with T1D have perfect blood sugar levels. As a whole, these challenges represent a profound emotional and mental burden for people with T1D, often leading to diabetes distress and burnout—which itself can lead to worse glycemic control. People with T1D have a tougher time managing the ins and outs of daily life because of the extreme mental and physical load of having T1D.
A longer life on its own is not the goal: it’s longer lives without ever having to think about T1D.
Breakthrough T1D envisions a world where the burden of T1D no longer exists. A world where people don’t have to manage their diabetes—they don’t take insulin, don’t have blood sugar highs and lows, and don’t develop complications. Curing T1D is our north star.
To achieve these goals, we need widespread screening, innovative research and therapies, patient-centered clinical approaches, and evolved regulatory pathways. We need to adjust the T1D paradigm and move clinical testing along at a quicker pace.
The regulatory route for new therapies determines whether companies, which have the greatest ability perform research in a quick and efficient manner, will invest their time and money into innovative T1D therapies. They are more encouraged to do so if they see defined and reasonable pathways for new therapies to reach the market—especially if healthcare systems are in place that will allow these therapies to be adopted by healthcare professionals and used by the people who need them most.
It starts with the decision-makers, who weigh the benefits versus risks of a new therapy. These decisions need to have more input from people who have a lived experience with T1D and can better decide if the benefits outweigh the risks, especially given the tremendous daily burden of living it. Clinical testing should broaden to include more populations of people with T1D—not just those who have severe disease—because nearly everyone has the chance to benefit. As the authors state in the commentary:
The magnitude of benefits required to outweigh a product’s risks should be determined by people living with T1D and no one else.
To further optimize T1D clinical trials, Breakthrough T1D and other experts have pushed for the validation of C-peptide, a biomarker for the body’s insulin production, as a clinical trial endpoint. Compared to the currently used endpoints, C-peptide would provide easier assessments and shorter clinical timeframes, thereby making the process of T1D therapy development more streamlined—and bringing these data to decision-makers sooner.
Once better clinical endpoints are validated, more personal experiences are incorporated into clinical trials, and the regulatory path to market is clear, companies will be encouraged to invest in T1D research programs, thereby speeding up research, innovation, and progress along the clinical pipeline—getting life-changing therapies into the hands people with T1D faster than ever.
This publication will be shared broadly with regulators, legislators, payers, and the T1D research community to encourage research, innovation, and funding and advocate for quicker, more efficient clinical testing and regulatory pathways to approval.
I think the misperception that the therapies available today are good enough is one of the most insidious challenges to ushering in the era of T1D cures…Today’s therapies do not offer the freedom from diabetes that people living with the disease want…I believe when we fully appreciate the daily experiences of people living with T1D, and when we use these experiences to guide our research development and regulatory decisions, we will also then have clear pathways for new therapies that meet these needs.”
This is a call to action for everyone working in the T1D space. The overarching purpose is to foster awareness of these unmet needs and the urgency with which we must act as a community to address them—by working together and collaborating across the pipeline of T1D management.
Read on to learn more about the population of people living with T1D with these unmet needs.
The purpose of this study was to identify key T1D demographics in the United States and predict how these demographics will change over the next decade. Using healthcare insurance claim datasets, population growth projections, and existing literature, the authors modeled T1D demographic changes between 2024 and 2033.
This study was funded by Breakthrough T1D in collaboration with the T1D Index team so that these data can be incorporated into the Index. (Disclaimer: the T1D index uses multiple datasets and publications to predict the number of people living with T1D, which may explain discrepancies in Index estimates and predictions from this study).
Incidence
The number of new T1D diagnoses in a given time period.
Prevalence
The total number of people with T1D (new and existing diagnoses) in a given time period.
Number of people in the U.S. living with T1D.
Average age of people living with T1D.
Percent of people with T1D who are 20–64 years old.
Percent of people with T1D who are over 65 years old.
Percent of people with T1D who have commercial health insurance plans. Other coverage includes Medicare (30%) and Medicaid (15%).
Number of people in the U.S. living with T1D (due to increase in T1D incidence and improved survival from devices).
Average age of people living with T1D.
Percent increase in T1D population that aged 65 and older (mostly due to aging of the current T1D population).
Percent increase in T1D population that is aged 10 and younger.
Percent of people with T1D who have private/commercial health insurance plans. Other coverage includes Medicare (30%) and Medicaid (17.4%).
Percent increase in T1D population who will use Medicaid.
Despite significant advances in T1D technology, therapies, and care management, the T1D population still faces a greater risk of complications and a higher mortality rate. Breakthrough T1D leadership will use key information from this study to inform future strategic research and advocacy efforts.
This data gives us an opportunity to quantify key information about our community to inform decision-makers…With better data specific to those with T1D, we can ensure that we’re advocating for solutions that not only expand access but also promote a better health care system for those with T1D.”
These data will help inform elected officials and payers about how healthcare policies may ultimately affect the T1D community—ensuring that the policies in place are having the greatest impact they can. The next phase of the project will analyze key demographic information in the context of access to cell therapies.
The ultimate goal is to ensure that everyone with T1D has access to the therapies, technology, and care that works best for them. By understanding T1D population demographics, Breakthrough T1D can make the most informed decisions possible as we move toward our goal of a world without T1D. We call on regulators, legislators, payers, and T1D researchers to take urgent action to meet the unmet needs of the T1D community now and in the future.
Taking care of your mental health with type 1 diabetes (T1D) is just as important as managing your blood sugar and taking your insulin.
Statistics show that mental health issues can affect people of all ages living with T1D:
People living with type 1 diabetes affected by depression
Number of adolescents living with type 1 diabetes who develop diabetes distress
The prevalence of generalized anxiety disorder in people living with type 1 diabetes compared to the general population
There are also anxieties exclusive to people with T1D, particularly fear of hypoglycemia, which is associated with substandard diabetes management and reduced health outcomes.
Breakthrough T1D is working to address mental health concerns for people living with type 1 diabetes through education, research, and community support.
Thriving with T1D starts with your mental and emotional well-being. Our Mental Health Guide offers information to help you better manage your mental health with type 1 diabetes, including:
For more than three decades, Breakthrough T1D has funded research that addresses the mental health challenges that can come with T1D, including diabetes distress, eating disorders, and anxiety. Some current Breakthrough T1D-supported studies in this area include:
Breakthrough T1D Community Summits feature leading experts and T1D community members discussing topics relevant to life with type 1 diabetes, including mental and emotional well-being. Some recent conversations include:
Your local Breakthrough T1D chapter can also provide valuable support through T1D community connections and events. Find your chapter now!
Living with the burden of type 1 diabetes can be overwhelming, but you are never alone. Through support, research, and education, Breakthrough T1D is helping to reduce the mental health impact of type 1 diabetes and improve health outcomes for the entire T1D community.
While we look back on 2024, we can reflect upon the incredible progress we’ve made in advancing breakthroughs toward cures and improving everyday life with T1D.
This wouldn’t have been possible without each and every one of you and your continued support of our mission as we drive toward cures for T1D.
Breakthrough T1D announced the launch of Project ACT, an initiative aimed at accelerating breakthroughs in T1D cell replacement therapies that do not require broad immunosuppression. Recent advances, such as Vertex’s stem cell-derived islets, have been made possible by Breakthrough T1D’s Cell Therapies program as part of our drive toward cures. The goal of Project ACT is to push research, development, regulatory policies, access, and adoption to increase the rate at which cell therapies without the need for broad immunosuppressants will become available to people with T1D.
Why this matters: Immunosuppressive drugs are a barrier to access to cell replacement therapies because of their toxic side effects, which is why islet transplants are currently only available to people with severe low blood sugar (hypoglycemic) unawareness and episodes. By striving toward a future where we realize the benefits of cell replacement therapies without the downsides of the current regimen of immunosuppressants, we will make islet replacement therapies broadly accessible to the T1D community.
Vertex’s clinical trial of VX-880, a first-generation stem cell-derived islet replacement therapy for people with severe hypoglycemia (requiring the use of immunosuppressants), has transitioned into a phase 1/2/3, or pivotal, trial. This news comes after Vertex shared incredibly promising data in the earlier phases of the trial, including 11 of 12 participants reducing or eliminating the need for external insulin.
The upcoming trial will expand to 50 people who will get a single, target dose of VX-880. The primary endpoint will be insulin therapy independence without severe hypoglycemic events after one year. This is the final clinical testing stage before Vertex can seek FDA approval.
Breakthrough T1D has a decades-long relationship with Vertex and the leading scientists behind stem cell-derived islet therapies, an advancement that would not have been possible without Breakthrough T1D funding and support. The T1D Fund had invested in Semma Therapeutics, which was acquired by Vertex Pharmaceuticals in 2019, eventually leading to the active clinical development of VX-880 in T1D.
Why this matters: This is the first time a scalable cure for T1D is entering phase 3 clinical trials—a significant win and a huge step toward accelerating the delivery of cell therapies to members of the T1D community!
Tegoprubart: Transplant Survival Without Standard Immunosuppressive Drugs
Tegoprubart, an anti-CD40L immunotherapy that limits the immune response, is being tested in a Breakthrough T1D-funded study in people with T1D and severe hypoglycemia who have received deceased donor islets. Eledon Pharmaceuticals announced promising initial results in which two of three people achieved insulin therapy independence. According to the study, tegoprubart is safer for both people and transplanted cells in comparison to broad immunosuppressants, with milder side effects and greater islet survival. To further support this effort, the T1D Fund: A Breakthrough T1D Venture invested in Eledon.
Cell Pouch: A Home for Transplanted Islets
Breakthrough T1D has been supporting the development of Cell Pouch, an implantable device from Sernova that provides a safe, immune-protected environment for transplanted islet cells. In phase 1/2 clinical trials, all six people who received donor islets within the Cell Pouch achieved sustained insulin therapy independence with immunosuppressants, including long-term islet survival and function over five years without harmful side effects.
Why this matters: Standard of care immunosuppressive drugs that help avoid transplant rejection come with unwelcome side effects, such as increased risk of infection and malignancy and toxicity to kidneys, nerves, and islet cells themselves. Breakthrough T1D is focused on finding alternative ways to keep transplanted islet cells alive and healthy so that cell replacement therapies can become more tolerable and accessible.
In a major effort spearheaded by Breakthrough T1D, the first internationally recognized clinical guidelines for those who test positive for T1D autoantibodies have been published. These include guidance on monitoring frequency, education, and psychosocial support in addition to recommended actions for healthcare professionals (HCPs) when the risk of T1D progression is high. The guidelines were cooperatively developed with over 60 international experts spanning ten countries.
Why this matters: Previously, there had been no consensus on monitoring guidelines for people who test positive for T1D autoantibodies. Standardization of clinical recommendations means that individuals, families, and HCPs have tangible next steps to monitor early T1D progression and catch life-threatening complications sooner.
Why this matters: T1D early detection is critically important to prevent life-threatening complications at diagnosis and to give people necessary resources to make informed decisions about their health. Integrating T1D screening into the U.S. healthcare system will increase access to care.
The past year has seen some important advances in glucose management therapies and devices:
Why this matters: While advancements in glucose management have been pivotal in improving health outcomes for people with T1D, access remains a challenge. AID systems are globally underutilized, and not everyone has the necessary technology to connect devices. Breakthrough T1D is working to not only support advances in glucose management but also increase access.
Related content: While Breakthrough T1D consistently strives to improve the lives of those living with T1D, as an organization we have made incredible progress in the development of AID systems, also called the artificial pancreas systems. Read a historical perspective written by Breakthrough T1D volunteer Doug Lowenstein that covers conception to FDA approval of the first artificial pancreas systems, which changed the lives of people with T1D.
An inquiry spearheaded by the Breakthrough T1D affiliates in the U.K. uncovered risks of developing T1D eating disorders (T1DE), including bulimia, anorexia, or insulin restriction to lose weight. There is a significant gap in education and clinical guidelines for HCPs, a lack of internationally recognized criteria for T1DE diagnosis, and insufficient care integration, leading to preventable complications and healthy years of life lost. Breakthrough T1D recognizes the importance of spreading awareness and support for T1DE, and much work is needed to improve the lives of those living with T1DE.
Why this matters: There is an urgent need to change the way T1DE is approached, including integrated physical care with mental health services to get people with T1DE the access to care that they need.
In a study that included people with T1D, finerenone (Kerendia®) has been shown to improve cardiovascular outcomes in adults with heart failure. The drug is already approved in the U.S. to treat kidney and cardiovascular disease in people with T2D. Based on these results, Breakthrough T1D is supporting a clinical trial (FINE-ONE) in conjunction with Bayer to investigate the use of finerenone for T1D with the hopes of reducing kidney complications.
Why this matters: Kidney and cardiovascular disease remain significant challenges for those with T1D, especially given the FDA’s recent rejection of an SGLT inhibitor to lower blood glucose in people with T1D and chronic kidney disease. Yet, a new clinical trial (SUGARNSALT) will better assess the benefits versus risks.
Breakthrough T1D is advocating for the regulatory approval of C-peptide, a biomarker for insulin production by beta cells, to be used as an endpoint in clinical trials. An endpoint can accurately predict a meaningful benefit in clinical trials for disease-modifying therapies (DMTs; treatments that can slow, halt, or reverse T1D). To support this endeavor, Breakthrough T1D scientists and an expert consensus panel published research with evidence supporting C-peptide as an endpoint. Breakthrough T1D is continuing to engage with regulators, coordinate with industry, and assess more clinical trial data to drive this effort forward.
Why this matters: Current clinical trial endpoints (HbA1c, hypoglycemia, and complications) are not the best way to gauge the clinical benefits of T1D therapies. If C-peptide gets regulatory approval to be used as an endpoint, clinical trials could be smaller and shorter while still accurately assessing the advantages of a DMT. This means that drug development can move more quickly, and people with T1D will be able to access therapies sooner.
Related content: Two years ago, the T1D community received the incredible news that Tzield® had become the first FDA-approved disease-modifying therapy that can significantly delay T1D onset. Breakthrough T1D volunteer Doug Lowenstein recounts the life-changing drug’s journey nearly 100 years after the discovery of insulin.
The T1D Index is a data simulation tool that measures the global health impact of T1D, bridging gaps in our knowledge of public health statistics. T1D Index 2.0 has new and improved functionality, including advanced simulation capabilities, validation of data, and enhanced user experience. Breakthrough T1D contributed to both the development and improvement of the T1D Index.
Why this matters: The T1D index is critical in defining the intercontinental scope of T1D, driving us toward country-specific solutions and improved global health outcomes.
Earlier this year, JDRF rebranded to Breakthrough T1D. While our mission remains the same, our name needs to better reflect who we are and where we’re going. Our new brand aligns with our mission to accelerate life-changing breakthroughs for those of every age living with T1D as we work toward a world without it.
Why this matters: The proof is in the name—each day we strive to increase and accelerate breakthroughs in T1D, and it’s critical for our brand to accurately reflect our mission.
It’s certainly been an exciting year! While we still have more work to do, it’s crucial to celebrate our wins, both big and small, to see how far we’ve come in our push to make T1D a thing of the past.
Together, we’re accelerating breakthroughs for people with T1D, and the support of the T1D community drives our mission forward every single day, leading the way to lifechanging therapies and cures. Let’s see what 2025 has in store!
People with type 1 diabetes (T1D) have a 3-4-fold higher risk of developing disordered eating behaviors than their peers without diabetes. What’s more is that eating disorders—such as dietary restriction, vomiting, or misusing insulin for weight control—increases the risk of severe diabetes complications, including DKA, earlier onset of diabetic kidney disease, and a 3-fold increase in premature death.
Existing treatments for eating disorders are less helpful for individuals with T1D. This is because these treatments are not tailored to the unique experiences of living with T1D, such as insulin therapy (which causes weight gain), careful dietary management, and diabetes-related distress.
Developing and evaluating interventions that prevent eating disorder symptoms and behaviors and eating disorder onset, as well as interventions that treat eating disorders in this high-risk population, is a key Breakthrough T1D priority. This is an underfunded area of research where Breakthrough T1D’s funding can have a substantial impact on a vulnerable population who currently doesn’t have efficient treatment options available.
In 2022 and 2023, Breakthrough T1D funded three projects to address eating disorders in T1D, as well as funded a study—out now—which highlights the risks of T1D eating disorders and current barriers to effective and safe treatment. Let’s have a look.
Rhonda Merwin, Ph.D., Duke University
Dr. Merwin’s project aims to test the efficacy of an Acceptance and Commitment Therapy (ACT)—iACT, combining face-to-face sessions with interventions delivered by mobile app—for reducing eating disorder symptoms, improving glycemic management, and improving diabetes distress.
Previously, Dr. Merwin piloted a clinical trial of iACT in 23 participants with eating disorders and T1D. iACT was associated with large improvements in eating disorder behavior, diabetes management, and diabetes distress, and many individuals improved their HbA1c.
In the current Breakthrough T1D-funded study, Dr. Merwin will test this intervention with a larger sample of individuals, namely 128 individuals between the ages of 16-45, who will be randomized to either iACT or control. The goal is to establish an effective treatment for eating disorders in T1D to reduce suffering and preserve longevity and quality-of-life.
Heather Stuckey, D.Ed., Penn State College of Medicine
Dr. Stuckey’s project aims to create a guide for healthcare professionals so they can know the warning signs of an eating disorder and know how to better communicate with that person to prevent problems.
First, she is going to interview 30 people who have T1D and a history of insulin restriction to identify the warning signs of a potential eating disorder. Second, she is asking healthcare professionals questions that relate to how comfortable they are in identifying someone who might be reducing or omitting insulin treatment and what education they would like to receive that would help them feel more confident.
The result will be a resource for diabetes professionals to use in helping to identify an eating disorder and an educational section on questions to ask in the event of a suspected condition.
Line Wisting, Ph.D., Oslo University Hospital
Dr. Wisting’s project aims to investigate the efficacy of a novel virtual eating disorder prevention program, termed Diabetes Body Project, in young women with T1D. In the preliminary clinical trial, they tested it on 35 young women, aged 16-35, and showed that it produced significant reductions in eating disorder symptoms and behaviors and diabetes distress.
Now, in the Breakthrough T1D-funded clinical trial, they will recruit 240 adolescent and young women with T1D, in Oslo, Amsterdam, Boston, and San Francisco, and evaluate whether the intervention significantly reduces eating disorder behaviors, reduces diabetes distress and HbA1c, and reduces future eating disorder onset. If successful, it could be widely implemented to reduce T1D-related eating disorder behaviors and complications associated.
With Breakthrough T1D support, The Right Honorable Sir George Howarth MP and The Right Honorable Theresa May MP, who served as Prime Minister of the United Kingdom from 2016 to 2019, launched a parliamentary inquiry into eating disorders in T1D in June 2022. It gathered evidence from experts—those with direct lived experience, clinical leaders, researchers, and volunteer leaders.
George Howarth and Theresa May both have a T1D connection; Howarth had a daughter with T1D, who died unexpectedly from diabetes complications in 2011, and May has T1D herself.
The inquiry, out now, puts a spotlight on eating disorders in T1D and assesses the current T1D eating disorder services in the UK, with the aim of helping to prevent T1D eating disorders and support those living with these conditions.
Several barriers to effective care for people with T1D eating disorders were identified, including the lack of an internationally recognized diagnosis criteria and no clinically approved pathway to prevent and treat it. Ultimately, further research is needed to improve treatments at every stage of the condition.
In summary, developing and evaluating interventions that prevent eating disorder symptoms and behaviors and eating disorder onset in this ultra-high-risk population is a key public health priority.
Conclusion
Collaboration among the fields of diabetology and eating disorders will not only enhance clinical care but also foster ongoing research, including ways to modify diabetes care education in ways that may decrease the development of eating related disease in those with T1D.
Editor’s note: Written by guest blogger, Grace Bennett, Social Media Manager at Breakthrough T1D. The opinions expressed by the author are her own and are not necessarily those of JDRF, its leadership, employees, or supporters.
Life with T1D means you don’t only observe your birthday, holidays, and anniversaries. You also usually in some way mark your “Diaversary” or the day your life with T1D began.
I’ve always felt a bit conflicted about my Diaversary. While I feel like I should do something to recognize a day that completely changed my life, it’s obviously not something I necessarily want to celebrate.
Who in their right mind would celebrate being diagnosed with a condition that adds significantly to one’s mental load (and that’s just the tip of the iceberg!)?
I tend to quietly acknowledge my Diaversary with my family and then move on. That changed a few weeks ago, when I realized that life with type 1 diabetes (T1D) has taught me a lot of life lessons that I might not have learned otherwise. So, here are the 19 things I’ve learned over the 19+ years I’ve lived with T1D.
As Breakthrough T1D’s Social Media Manager, I can confidently say that the T1D community has a tremendous amount of wisdom about life with T1D to share beyond the points I’ve listed here. Don’t forget to go check out the comments on our Social Media channels for more advice from this incredible group of folks!
I’m just going to say it: I’m in love with Jill Weissberg-Benchell. Why? Well, she’s a brilliant child’s psychologist. She understands what it’s like to be diagnosed with type 1 diabetes (T1D). She understands the burdens of the disease, and the burdens of the therapies and technologies that it comes with. She understands that what children need differs from what teenagers need, and what partners want for their spouses differs from what parents want for their children.
She wants people—both those with type 1 diabetes and their families—to not feel isolated, but instead to feel supported and empowered to be able to manage diabetes.
Dr. Weissberg-Benchell was among the first to be involved in the Breakthrough T1D psychosocial program, a Breakthrough T1D initiative charged with:
With Breakthrough T1D support, we have already “doubled the number of trained psychologists that are expert in the psychosocial aspects of diabetes in the country,” Dr. Weissberg-Benchell says, “which has been amazing.”
Hear Dr. Weissberg-Benchell talk about her research—and get introduced to many more Breakthrough T1D-supported investigators—by watching the video below, and by visiting our site: Meet the Scientists.
Breakthrough T1D’s funding enables promising scientists, like Jill, to focus their talent, ambition, and passion on improving life for those with T1D. Learn more about the researchers we fund, and learn how you can support their work to prevent, treat, and—one day—find cures for T1D.
Breakthrough T1D today launched a Center of Excellence at the University of Michigan, to expand the University’s already stellar Elizabeth Weiser Caswell Diabetes Institute to tackle some of the most critical challenges in diabetes research. The goal: To yield safer day-to-day management and improved health for people with type 1 diabetes (T1D) by developing a comprehensive understanding of T1D metabolism.
Current treatment strategies assume that blood sugar is the sole driver of short- and long-term complications, like low or high blood-sugar levels; eye, kidney, heart, and nerve diseases; and psychosocial stress. The University of Michigan team, however, has shown that protein and fat metabolism may play a role in the development of type 1 diabetes complications.
With $7.37 million from Breakthrough T1D and $6.5 million from the University of Michigan, over the next five years, scientists and clinicians will have the stability to engage in longer-term projects, with the ability to make meaningful advances in developing cures and improving the lives of people with T1D. The Center of Excellence will undertake four projects that will:
The Center brings together experts in the fields of eye, kidney, heart, and nerve diseases, transplantation, hypoglycemia, and engineering. Many of the scientists have received Breakthrough T1D early-career grants that prompted them to make T1D research the focus of their life’s work.
This is the second Center of Excellence launched by Breakthrough T1D, the first one in Northern California with Stanford University and the University of California, San Francisco. The Northern California Center will focus on the interaction of immune cells with insulin-producing beta cells; generating islets and immune cells from stem cells for next-generation therapies; and developing ways to transplant insulin-producing cells into people with T1D without requiring immunosuppression.
To learn more, read our press release.
During a recent Breakthrough T1D Facebook Live event, Shaina Hatchell, Bachelor of Science in Nursing (BSN), Registered Nurse (RN) and Certified Diabetes Educator (CDE) discussed her forthcoming children’s book “Shia Learns about Insulin” and how it can help children living with type 1 diabetes (T1D) share their experiences with peers.
“I have been passionate about diabetes and education for what feels like my entire life,” Hatchell said.
She shared how she pursued her dream of becoming a CDE, and how her brother’s T1D diagnosis influenced her.
“I remember being 12 years old thinking ‘What can I do to learn about how I can help him?’ and ‘How can I help my family as we continue to manage diabetes in our home?’,” Hatchell added.
During her presentation, Hatchell covered:
The creative strategy behind developing Shia.
How her book and books similar to it could help normalize T1D conversations for children—with their parents, but also, importantly, with their peers.
Healthcare disparities that disproportionately burden Black people living with diabetes and how education and representation can help.
Hatchell wrapped up the event by answering user-submitted questions.
Watch the full, recorded livestream:
Thanks to the coronavirus pandemic, families are feeling the pinch of a cruel summer. School is out and remote learning is done for now, but the closure of most day and overnight camps means kids are going to be missing out on some of their usual summer fun.
But with a little time and creativity, parents and caregivers can give kids with type 1 diabetes (T1D) a taste of the summer camp experience at home.
Below are some ideas to help you create the spirit of summer camp while still practicing safe social distancing.
