Meet Bonnie Barber from Regina, SK, a resilient mother of seven, valued JDRF donor, and longstanding volunteer leader helping to champion JDRF Canada’s $100M Campaign to Accelerate. Bonnie shares her journey navigating the challenging early moments of her two children’s type 1 diabetes (T1D) diagnoses, how this relentless disease has impacted her family, and what led them to JDRF.
The $100M Campaign to Accelerate is JDRF’s bold fundraising plan to speed up research toward a world without T1D. Our campaign is divided into six key support pillars to help accelerate cures while improving lives. Thanks to devoted JDRF donors and volunteers like Bonnie, this major gift campaign has raised over $78M, funding more T1D research than ever before.
Bonnie’s son, Bryn, was diagnosed with T1D in 1990, shortly after his 5th birthday. There was no known diabetes in their family, and she didn’t know the early signs and symptoms. Bryn hadn’t been feeling well for quite a while and had very little energy. He loved running and playing with his friends at daycare, but Bonnie noticed he was having difficulty keeping up – it was then that she knew something was wrong.
After bringing Bryn to the doctor’s office, they had to go to the lab for a blood test. Bonnie says, “I was really freaked out for this poor little guy. I realized that we had to find out [whether he had T1D], but I just felt so bad for him and, as a mom, challenged to get him through a blood test.”
The doctor called Bonnie to inform her that Bryn’s blood glucose levels were very high. She immediately had to pack an overnight bag and check Bryn into the hospital. At the time, children diagnosed with T1D were typically hospitalized for about one month. Bonnie didn’t want to leave young Bryn on his own, so every morning, she would gather her three other children and head straight to the hospital in pyjamas. Eventually, they all moved into Bryn’s hospital room, trying to make it a fun adventure for the kids. Using the hospital’s playroom and watching TV were little things that went a long way in helping their family get through a difficult time.
“The first little while was very rough,”Bonnie says.“I was just so overwhelmed that I couldn’t take it. I didn’t know how to survive because I thought, ‘This child is going to need all this special care and meals and so much.’ I was treading water as it was with four little ones, and it was a lot.”
Bonnie and her family went home after two weeks, feeling very proud of Bryn. Yet there would be many firsts to face as a mother of a child with T1D – like the first time Bonnie accidentally gave Bryn too much insulin. She panicked, thinking it was all over. Bonnie says there are many traumas she faced in the beginning, but their family slowly got used to life with T1D.
Bonnie’s daughter, Jillian, was also diagnosed (at age 16), but they caught it much sooner because Bonnie knew the symptoms of T1D. Yet, a year later, Jillian was feeling unwell again. They couldn’t figure out why until she was diagnosed with celiac disease, another autoimmune condition that is more common in people with T1D.
Bonnie’s family became involved with JDRF through the JDRF Walk to Cure Diabetes in Regina, SK, two years after Bryn’s diagnosis. As their family learned more about JDRF, they wanted to become more actively engaged as volunteers and supporters. They realized that advancements like insulin pumps, which had made Bryn’s T1D management easier, were made possible in part by JDRF-funded research.
“Thanks to JDRF’s contributions to research, our family is a happy success story,” Bonnie says. “But we still have more work to do. That’s why I decided to join JDRF Canada’s $100M Campaign to Accelerate by helping to fundraise for global research and thanking JDRF’s incredible donors through the Stewardship Cabinet.”
JDRF also informed Bonnie’s family about studies like TrialNet, which allowed them to screen their five other kids for T1D auto-antibodies. They discovered that their youngest child, Burke, was at a high risk of developing T1D. Thankfully, he is still T1D-free today at age 28 and may have the chance to delay its potential onset with emerging disease-modifying therapies.
Bonnie’s children are doing well today and have made her a proud grandmother. With fifteen grandkids, Bonnie would like to build on existing research to catch T1D early, keep it at bay, and stop it before it can start so they can live in a world without the disease. She hopes the research will advance so Bryn and Jillian no longer experience highs and lows (blood glucose) or need to monitor their blood glucose levels constantly. Whether through technology like hybrid closed-loop insulin pumps, stem cell transplants or immunotherapies, Bonnie believes we are close to cures.
“We’re on the verge; let’s make it better,” Bonnie says.“The cure for diabetes may not be the common definition of ‘cure,’ but we are so close to people with T1D being able to live independently of technology and insulin. Please know that with your financial assistance, we’ll quickly push this [T1D cure research] over the edge.”
Leadership gifts (of $5,000 or more) towards our campaign ensure groundbreaking research advancements to help improve the lives of people with T1D, like Bryn and Jillian, parents like Bonnie, and countless others impacted by this disease.
To learn more about how you can make a meaningful investment through ou
“Alone we can do so little; together we can do so much.”
– Helen Keller, Disability rights advocate
Since our founding 50 years ago, JDRF Canada has helped fuel almost every advancement in type 1 diabetes (T1D) care and cure research by bringing together the T1D community, donors, researchers, and funding partners to work towards the same vision – a life without T1D.
Through our partnership with the federal government, the Canadian Institutes of Health Research (CIHR) matches all donor investments 1:1 toward high-impact Canadian T1D research grants, meaning donations to this partnership make double the impact on critical T1D research.
3X Match
Over 50 days, double the impact will become triple the impact thanks to the incredible generosity of one of our dedicated board members, who is matching all Campaign to Accelerate gifts ($5,000 and up) to the JDRF-CIHR Partnership to Defeat Diabetes up to $1M. With donor support help, we can turn $1 million into $3 million for groundbreaking research in Canada.
This 3X Triple Match funds innovative projects in cell therapies, precision medicine, mental health, and nationwide T1D screening that advance care, early treatment, and promising pathways to T1D cures.
To learn more or make a 3X match leadership gift, contact Kim Lacombe.
Dr. James Shapiro is exploring whether a person’s own blood cells (reprogrammed into islet-like cells for transplant) can be used as the basis for therapy instead of donor tissue.
“I’m very excited about the progress of T1D research, especially within the last five years. But I believe that a cure is really within all our grasps. It’s going to require intense collaborative scientific effort and a lot of funding, but I firmly believe this is possible and will happen,” says Dr. James Shapiro, University of Alberta.
Dr. Cristina Nostro is testing gene-edited stem cell-derived islets for transplant that would not require the immunosuppressive drugs typically needed in cell replacement procedures.
“In the last 20 years, we’ve learned how to differentiate stem cells [into beta cells], and now we’re moving them to the clinic, and they’re giving us the results we want. The future is bright. I’m super excited,” says Dr. Cristina Nostro, University of Toronto.
In T1D Management
Dr. Farid Mahmud recently published his trial results showing that a drug called Dapagliflozin can improve glucose control and kidney health in youth with T1D. Dr. Mahmud is also leading the EVERYONE study, which examines the impact of diversity on diabetes management in youth, intending to personalize care for better outcomes.
“We’re looking at how we can optimize care and prevent complications. We work with patient partners – families and parents – and all our studies are designed with these partners to develop the best ideas relevant to care,” says Dr. Farid Mahmud, SickKids.
In Mental Health
Dr. Holly Witteman is creating a research-based national peer support program led by people with T1D to improve the mental health and quality of life of the T1D community.
“As a scientist who has lived with type 1 diabetes since childhood, I know how important it is to be able to connect with others who really understand life with T1D. The CommuniT1D project aims to provide helpful, sustainable peer support for people living with T1D and their families across Canada so that no one has to feel alone,” says Dr. Holly Witteman, Université Laval.
In Early Detection
JDRF and the CIHR launched a nationwide T1D screening research consortium last year, hoping to implement general population screening to help eliminate life-threatening diagnosis complications and introduce future early intervention therapies to delay T1D onset.
“This project is near and dear to my heart because my son was diagnosed with type 1 diabetes when he was just two years old. He was extremely sick, and his body was weak. Life changed, and I had no idea there was even a possibility of T1D in our family, being affected by the 60s Scoop. I hope to identify barriers and provide resources while giving diabetes support and fostering relationships between Indigenous communities and researchers,” Sasha Delorme, Diabetes Action Canada, Indigenous research lead, JDRF-CIHR CanScreenT1D.
Collectively, the projects donors fund through the JDRF-CIHR Partnership make a profound impact now while supporting future T1D breakthroughs.
JDRF is working with its Campaign to Accelerate volunteer leaders to maximize this remarkable triple-match opportunity, which will drive significant advancements in Canadian research and positively affect the lives of nearly 300,000 people living with T1D nationwide.
The JDRF Canada Clinician Investigator Fellowship is open to medical residents that are pursuing an additional research degree (Master, PhD, or postdoctoral training) in the field of type 1 diabetes research. Residents must be part of their university’s Clinician Investigator Program (CIP) which is guided by The Royal College of Physicians and Surgeons of Canada. The major goal of the CIP is to assist in the career development of clinician investigators in Canada. At the end of the research component of the program, the resident will be expected to have acquired the knowledge, skills, and attitudes fundamental to embarking on a career in health research.
Dr. Ahsen Chaudhry is the first recipient of the JDRF Canada Clinician Investigator Fellowship. He completed his medical degree at the University of British Columbia in 2019 and became a Fellow of the Royal College of Physicians of Canada as a certified physician in 2023. Ahsen will now be pursuing a research-based master’s degree via the UBC Clinician Investigator Program.
Dr. Timothy Kieffer, who will supervise Dr. Chaudhry’s research, emphasized the importance of this fellowship: “Ahsen has demonstrated a passion for the role of a clinician-scientist and has a strong aptitude for integrating research into his clinical practice. This program will provide Ahsen with the skills necessary to facilitate the further development of his academic endocrinology career, with a special focus on cell therapy for diabetes. It is important that we build additional capacity and encourage promising fellows like Ahsen to pursue this area of research, to maintain our world leadership in [the type 1 diabetes cell therapy] field.”
JDRF had the pleasure of connecting with Dr. Chaudhry to congratulate him on his new fellowship and discuss his research.
Tell us a bit about your background:
“I grew up in Prince George, BC, where I completed my undergraduate degree in Biochemistry and Molecular Biology at the University of Northern British Columbia. I moved to Vancouver to attend medical school at UBC, where I then completed my residency in Internal Medicine and sub-specialty training in Endocrinology.”
What drew you to medicine in general and to diabetes?
“Medicine is a gratifying field that combines the rigour of science, the art of patient care, and the spirit of compassion. The ability to make a tangible difference in someone’s life by combining these aspects is what motivated me to pursue medicine. My interest in diabetes developed early from exposures in my undergraduate studies and medical school, where I was fortunate to join research on diabetes and pancreatic beta-cell physiology. I was humbled by the fascinating cellular processes and web of interacting systems that underpin this disorder, and how much we still have to learn. As I progressed further through my medical training, I witnessed the heavy burden and human cost that diabetes has. It is a chronic condition with a number of serious complications and impacts on quality of life, and it is sincerely a privilege to work with patients on a long-term basis to help them manage their diabetes and maintain their health.”
Why do you want to do research in this area?
“Although the field has come very far since the momentous discovery of insulin, there is still much work to be done to improve diabetes care and help relieve the many challenges faced by people living with diabetes. Thankfully, we are at the cusp of an exciting revolution, particularly for Type 1 Diabetes (T1D), with the advent of stem-cell therapy that has the potential to make beta-cell and islet replacements a functional cure for T1D. By pursuing both clinical and basic science training in diabetes and islet/stem cell transplant, I hope to help contribute to this exciting area by helping the discoveries made at the bench progress through clinical trials and then eventually to clinical practice.”
What will you investigate during your Clinician Investigator Fellowship?
“My main project will focus on investigating the use of miRNA-based biomarkers for characterizing graft cell death in patients who have undergone stem cell derived pancreatic progenitor implants as well as cadaveric islet cell transplants, under the mentorship of Dr. Timothy Kieffer. The aim is to develop a non-invasive method for tracking the viability and natural history of these cells, which could help impact future clinical trials and patient management by giving insight into where protocol changes and optimizations need to be made. I will also be assisting with and recruiting for clinical trials of patients receiving novel stem cell-based beta-cell replacement therapies. Additionally, I will be receiving clinical training in islet transplantation and transplant endocrinology during my fellowship.”
How will the JDRF Fellowship support your research?
“The fellowship provides crucial funding that will support me in my clinical and research training, assisting me to become an independent clinician-scientist focused on translational research in diabetes and transplantation. Moreover, by enabling the opportunity to work at the JDRF Center of Excellence in UBC, I am privileged to be able to collaborate and network with leading experts, as Vancouver is home to amazing scientists who are world-leaders in several aspects of T1D research. This is so meaningful in helping my research benefit from and contribute to the broader diabetes research community. We are also rapidly expanding clinical activity and infrastructure in islet transplantation and clinical trials in Vancouver that are informed heavily by a lot of research that has been done here. JDRF’s support is instrumental to cementing this growing collaboration between researchers and clinicians in Vancouver that can help it become a key center for islet transplantation, cell therapy, and innovation in T1D. Ultimately, we hope this will translate to the most important goal of all, improving the lives and outcomes of our patients.”
JDRF Canada thanks Dr. Chaudhry for his time and congratulates him on the fellowship award. We wish him the best of luck with his research work, and we will share research updates when they become available.
Miguel Alvarez, who has been living with type 1 diabetes for over 55 years, aims to complete two bike rides of over 100 miles each.
To mark his 55th ‘Diaversary’ – the date when someone was diagnosed with type 1 diabetes (T1D), Vancouver, BC resident Miguel Alvarez will be attempting two 100-mile bike rides: the first in Coeur d’Alene, Idaho in September, and the second in Death Valley, California the following month in October. Training for these rides requires dedication, discipline and perseverance, much like daily life with T1D. Miguel will need to put in many hours on the bike but believes if he can help further progress to find a cure for T1D, it will be worth the effort. It’s why he rides.
JDRF was recently able to talk with Miguel, learn more about his five plus decades living with T1D, what drives him to set these ambitious bike ride challenges, and what he hopes to achieve with his fundraiser.
***
I’m originally from Ontario. I’ve worn a few hats in my life. I used to be a professional musician as a drummer and played in the Toronto area in a number of bands and pretty much every music venue throughout Southwestern Ontario. I’ve also worked as a motorsports photographer, and I presently work in technology, after moving to Vancouver.
I was three years old, in 1969, when I was diagnosed with type 1 diabetes. This is now my 55th year living with T1D. One of my earliest childhood memories is being in the hospital, after being diagnosed. It was a traumatic experience. Having visitors was a difficult thing back then, family visits were limited and nobody under the age of 12 was allowed to visit, so my sister couldn’t come to see me. I remember being continually poked with needles, having my blood drawn, things like that. Suffice it to say, these are not nice memories, especially being so formative and some of my first.
And I remember growing up trying to be ‘normal’, but T1D was always present, getting in the way. Much as I tried not to let it affect me. Back then, there was very little in terms of management. We only had one type of insulin. Diet was critical because that was the way to control it. But it was very restrictive. I remember going trick or treating at Halloween and not being allowed to eat any of the candy (it went to my sister) or going to friends’ birthday parties and not being allowed to have any birthday cake. These might not seem like big things, but they were just something else that singled me out as different.
One thing I do feel very fortunate about it is that I was always able as a child to know when I was having a low (hypoglycemia), and I really believe this is one of the reasons I was able to survive 55 years with this condition. I always knew and could communicate to my parents to let them know I wasn’t feeling well, or that I was feeling ‘off’. That I knew I was going low. I’m very lucky that I have always had symptoms of low blood sugar. Many people cannot and that is serious. With the lack of available tools to manage T1D, this was a huge advantage, if you can say that about having this chronic condition.
Over time, it is human nature, you learn to live with it (having T1D). I always try to express to people that I’ve basically lived through almost all the advancements of diabetes management, to date. There was no home glucose testing, no different types or better types of insulins, devices like insulin pumps, advanced glucose monitors like CGMs. All the progress in T1D management has directly impacted my life for the better. So, in some way, I feel that I’m a reflection of the best that has come forward in diabetes management, and I can say with certainty that they have not only improved my life but prolonged my life as well.
I’ve always been very open talking to people about diabetes, what it’s like and educating people along the way. The reality is, when I’m asking for money for my fundraiser – I explain that through the research that’s being done, I am a beneficiary of it. It’s not abstract, it’s very concrete. I am one of the few that can say that your donations over the years have benefited me personally.
I’ve found that for people without any personal knowledge of T1D, there is often a misconception that you take insulin and you’re fine. They don’t understand the daily, even hourly management it takes. It’s far more than many people would be able to manage. But it’s something we have to do, every single day. This isn’t about sympathy, it’s just the reflection and reality of living with a chronic disease that affects your everyday life.
And the mental burden, people don’t always have an appreciation for it. That’s the other aspect. It doesn’t affect just me; it affects everyone around me. My family, my wife, when I’m on a bike ride, I need to be extra vigilant, far more than the average person. It’s not just dealing with one thing; this condition is multi-faceted. And those facets change every day. As much as you try and be consistent, and apply what you think works, there is no explanation when things change or don’t work. No two days are the same. You are always behind the ball. Some days are good, some days are bad. But it’s so hard to juggle all the variables, because you don’t really have control over that. And then there is the tendency to beat yourself up when your control (blood glucose levels) isn’t as good as you want it to be. Then you feel bad. We can be very hard on ourselves too.
Every single day, I think about the potential T1D-related complications, from my eyes to my kidneys to my feet, I’m always thinking about it. And that weighs on me. It’s one thing to live with a chronic condition. But knowing that there are long-term complications that can happen, it’s hard to live with. I’m very concerned about my eyesight. I’m an artistic person. I use my eyes for my work and my creativity. But there is no choice. We do what we must do. And it’s another reason why I am so driven to fundraise to help support critical T1D research.
I’ve been doing these bike rides since 2017, in fact, I hadn’t really connected with JDRF until 2016. And when I did, it was the first time in my life that I met people who understood and knew what I was dealing with. It was a huge deal for me. I had never known anyone else with T1D. I grew up alone with this. I didn’t want to just go and ride my bike for the sake of riding, I wanted to do something with it, use it as a tool. I could make a difference, do the thing I love to do, being healthy and riding my bike, and I could raise money for such an important cause and connect with a community, everyone single-mindedly working towards the same goal. I’ve met so many other people now who know what this (life with T1D) is about. I started making friends in the T1D community in the US, and now I go pretty much every year. Working towards these events and raising money – my donors, I keep going back to them, and they keep supporting me. They appreciate that I am doing something so tangible towards T1D research. I do a lot of training to be able to ride 100 miles, and I’m doing it twice in 2024. Which is physically exhausting, but it’s so empowering and so uplifting. It’s quite amazing.
To anyone thinking of becoming involved with JDRF, please know that it makes a difference. And when I say that I use my personal experience knowing what that difference is, and how profound. Everyone’s time and efforts, whether volunteering or fundraising, does have an enormous impact. This is an investment, the results might not be immediate, but we are investing in future generations and in humanity.
So, towards that end, I’m also in the early stages of participating in a clinical trial, potentially early next year (2025). It seems like I’m a strong candidate. This particular study will implant beta cells (the cells responsible for producing insulin). Essentially, it’s a package of beta cells that are implanted through a surgical procedure. If it works, I wouldn’t need to inject insulin. It’s still early days, but they are interested in me participating. It won’t be easy as I have to be prepared for multiple surgeries. But I know I will get excellent medical attention through the process. I see it as putting my money where my mouth is. I am going to participate directly in finding a cure.
What would a cure mean to me? On the one hand, living with this all my life, it’s become part of my identity. So, if I am no longer diabetic, who am I? It would be a huge mental shift. But not having to manage T1D anymore, would be a whole new life. I would be confident that the future would mean living a less complicated life. My father always used to tell me that they would find a cure in my lifetime, and I want to prove him right. I want to see that happen for us both.
I would love to go for a bike ride and not worry about going low (blood glucose levels). Not needing to take extra food with me every time. Not having to check my Dexcom (CGM device) constantly. Just going for a ride for the pure pleasure of riding. I want to experience that. That’s something I want to try.
The American Diabetes Association’s 84th Scientific Sessions were held from June 21- 24th 2024. This annual conference brings together researchers and scientists to both present and learn about the latest in type 1 diabetes research and technological advancements. Many of the presentations features study results from researchers funded by Breakthrough T1D (formerly JDRF International) and JDRF Canada. The work presented at ADA will advance research and ultimately improve outcomes for people with diabetes (T1D).
Updates in Cell Therapy Research:
Cell therapy aims to replace the insulin-producing beta cells that are destroyed in people with type 1 diabetes so that they can produce their own insulin again.
Vertex Pharmaceuticals presented an update on their VX-880 product, a stem cell-derived replacement therapy with immunosuppression. Of the 12 patients who have been dosed, nearly all (11 of 12) have has a reduction or elimination of exogenous insulin use (via pump or injection). All patients have achieved an HbA1C below 7.0% and time-in-range above 70% on continuous glucose monitoring with the reduced or eliminated insulin administration. There have been no serious adverse events reported. The trial is expanding recruitment for 37 participants to progress towards pivotal development.
This research was made possible by years of funding by JDRF and the T1D Fund to Doug Melton, Ph.D., and Semma Therapeutics—a biotech company founded by Melton to develop a stem cell-derived islet therapy for T1D—which was acquired by Vertex Pharmaceuticals in 2019.
Cristina Nostro, University Health Network, presented an overview on her JDRF-funded work designing an optimal beta cell surrogate. Her work ranges from establishing optimized stem cell products to the use of microvessels for the purpose of increasing cell engraftment after transplantation.
Alice Tomei, University of Miami and Diabetes Research Institute is funded by Breakthrough T1D (formerly JDRF International) to examine immune protection strategies for immune protection of transplanted beta cells. She presented an update on research that looks to co-deliver immunomodulators via biomaterials along with transplanted beta cells to provide local, specific immune protection.
Jeffrey Millman, Washington University, presented work on his research looking into making stem cell-derived beta cells more functional so that they produce insulin levels similar to healthy human beta cells. To date, stem cell-derived beta cells have underperformed compared to healthy human beta cells.
Katy Digovich from Minutia presented ongoing research funded by an Industry Discovery & Development Partnership grant from Breakthrough T1D. They are developing nanoparticle trackers that provide real-time monitoring to assess and modify beta cell transplant health post-engraftment in patients with T1D.
Harald Stover from Allarta Life Science(Hamilton, ON) presented ongoing research funded by an Industry Discovery & Development Partnership grant from Breakthrough T1D. Their work focuses on synthetic gel coatings that are designed to both support (with nutrients and oxygen transfer) and protect (with immune evasion) beta cells during transplantation.
These provide guidelines for monitoring children, adolescents, and adults who test positive for T1D autoantibodies, along with recommended monitoring frequencies and actions for healthcare professionals when the risk of progression toward symptomatic T1D is high.
The guidance also includes recommendations for educational and psychosocial support for positive T1D antibody individuals, including their families and caregivers, and may also lead to primary care doctors screening more frequently since there is actionable monitoring guidance available to them.
For the first time, individuals, families, and healthcare professionals have concrete next steps to monitor early stage T1D progression and catch symptoms early to prevent DKA.
This guidance was developed with over 60 international experts, representing 10 countries and endorsed by 11 national and international societies.
Medtronic MiniMed 780G, especially the importance of initiating it as soon as possible following diagnosis (which is now recommended in the ADA Standards of Care for both children and adults), citing the CLVer trial, which found clinically meaningful and sustained improvements in blood sugar management following early AID initiation.
Medtronic MiniMed 780G in high-risk youth with T1D, with 80 participants aged 7-25 years, who demonstrated an average HbA1c reduction of 2.5% (from an average baseline HbA1c of 10.5% to 8%), improvement in time-in-range, and a reduction in low blood sugar events.
SGLT2i Shown as Potential Solution to Help Manage Renal Complications and Improve Glycemic Control for Young Individuals Living with Type 1 Diabetes
Findings from Dr. Farid Mahmud’s JDRF funded ATTEMPT study, showed that a low-dose of SGLT2 inhibitor could safely be given to youth and adolescents with type 1 diabetes (T1D) to improve kidney function and glycemic management. ATTEMPT is the first of its kind, landmark trial designed to evaluate the effectiveness of SGLT2 inhibitors to optimize diabetes control and prevent early subclinical kidney complications in an at-risk pediatric population with T1D.
This medication was evaluated alongside safety protocols to mitigate the risk for diabetes ketoacidosis. It is not approved for T1D by Health Canada.
Updates in Psychosocial Aspects of Living with T1D
BETTER presentation
Maya Nehme, RD/Dt.P, Research Center CHUM presented results from a cross-sectional study that explored Diabetes Distress among Persons Living with Latent Autoimmune Diabetes of Adults in the Canadian Cohort BETTER. Initially funded through the JDRF-CIHR Partnership to End Diabetes, JDRF Canada has extended funding for the BETTER projectfor an additional 3 years.
The BETTER project includes a Canadian registry of people living with T1D, called the BETTER registry, in which people living with T1D (or LADA for Latent Autoimmune Diabetes in Adults) – or who have a child living with T1D – can share their experience through online questionnaires in order to enrich research and knowledge about T1D.
The study found that emotional burden is significantly greater in persons with LADA than in persons with type 1 diabetes. JDRF Canada is pleased to continue to support the BETTER project and enable such studies to shed light on the daily challenges of those living with T1D.
Throughout June nearly 50 communities gathered across Canada to raise funds for type 1 diabetes research.
The JDRF Walk to Cure Diabetes is the largest fundraising event in Canada that brings together the type 1 diabetes (T1D) community to raise funds for T1D research. A fun-filled family and community celebration, the Walk has raised more than $140 million to date in its more than 30-year history – making it one of the longest running and most successful fundraising events in Canada.
Funds raised will go towards research into curing T1D, while improving the lives of people living with it today. This year is the 50th year of JDRF in Canada, and we celebrated the decades of progress, momentum and breakthroughs that have taken place since then, while recognizing the time is now to push forward towards screening, prevention and cures for this disease.
June was once again designated as Walk Month and to date more than $2.6M has already been raised in support of the most promising diabetes research. Additional Walks took place in May with a number of communities still planning Walks in September.
The Walk is so much more than just a fundraiser. It’s a chance for families living with T1D to meet, share their stories and gain support from each other. Many Walks had a tent and activities designated specifically for new families, supported by JDRF Volunteers to provide the most up to date information and resources on navigating life with T1D. As well, trained Research volunteers were on-hand at several sites to provide participants with information on the latest updates in T1D research, and at the Toronto Walk how to access JDRF’s Clinical Trial Finder tool, and several Walk sites had information on the stages of T1D as part of our Awareness Corner activities.
Games were set up for the kids and emcees helped keep the energy fun and exciting with music. Each Walk location had their own unique spin to make the day one to remember for the T1D community.
At the Toronto Walk, we were once again joined by JDRF ambassadors Max Domi and Kaleb Dahlgren, who met with families, took photos and helped to lead the warm-up. Max took time with every child who wanted to meet with him, signed autographs, spoke from the stage and brought hope and inspiration to everyone in attendance.
We would like to express our sincere gratitude to all our sponsors. With their support, we were able to offer an incredible day of community spirit with valuable resources for T1D families while innumerable connections were made. Across Canada, the Walk was an acknowledgment of 50 years of progress in T1D research, with the recognition that there is much work to be done.
Thank you so much to our Walkers, volunteers, donors, vendors, and our local, regional, national partners. We could not have done it without you. Together we walked, and with each step we took, we got one step closer to a world free from T1D.
Content warning: This story is about a young man who tragically died from diabetes complications and experienced mental illnesses
In May 2024, Evan Hunt laced up his running shoes and took the first of approximately 50,000 steps in the BMO Vancouver Marathon. He thought of his brother Brendan, who had undergone the pre-run ritual countless times. For Evan, the marathon was a labour of love for Brendan, who tragically passed away from type 1 diabetes (T1D) complications in 2022 at age 28.
In 2023, Brendan’s parents, Steve and Trish Hunt, contacted JDRF on a mission to turn their unfathomable loss into a means of helping others. They learned about JDRF’s Mental Health Strategy for T1D and wanted to support it however possible. They made a gift – the first from many donors across Canada – to help establish the Brendan Hunt Diabetes and Mental Health Fund at JDRF, which will launch once $1M is raised. The Fund will support JDRF’s Mental Health Strategy for T1D and other mental health research, such as four interventional research studies matched by the Canadian Institutes of Health Research (CIHR).
Trish Hunt explains why JDRF’s Mental Health Strategy for T1D is so important:
“As was our experience with our son Brendan, we know that T1D can be the root cause of subsequent serious mental health challenges and the evolving diabetes distress that can have a profound impact on quality of life and longevity. Having spent an entire career in health care, we need to empower existing systems of care, providers, and teams to increase understanding of the mental health impacts of diabetes and provide evidence-based tools and support for individuals with T1D and their loved ones. This must become a holistic approach, as once youth age out of pediatric care, they still need consistency, coordination, and support in their care. JDRF supports major advancements in this crucial area.”
Trish and Steve believe Brendan could have benefited from mental health support that better understood what it means to live with a chronic disease like T1D.
Brendan had been a relatively carefree kid until his T1D diagnosis at age 14. As a youth with severe needle phobia, Brendan’s diagnosis sent him into a state of fear, panic, and shame – made worse by preexisting mental health challenges. Depression took over his life.
Though his diabetes care teams provided good, specific care, it was not holistic. His endocrinologist was concerned with his blood glucose. His psychotherapist worked with him on his needle phobia. There was no one to bridge the gap between his physical and mental health, and peer support options were limited. A few years later, alcohol became a coping mechanism.
Brendan voluntarily committed more than three years of his young adult life living in residential treatment centres to improve his mental health. Though they were some of the most difficult years of his life, Brendan became a leader in the Vancouver facilities he resided in. He started running clubs and made many friends, showing great kindness and compassion to his fellow residents. He worked hard and ultimately overcame his addictions in treatment centres and demonstrated tremendous resiliency.
Over the next several years, he worked different jobs, was always quick to fix a computer or car, and was equally passionate both out on a 10km run or inside playing a video game. He was upgrading his math courses and working towards an IT diploma when he tragically passed away from T1D complications early in 2022.
“The combination of challenges Brendan dealt with, physical and mental, robbed him of the stability one needs to thrive in our conventional society,” shared Steve Hunt during Brendan’s celebration of life. “With courage, he worked around those challenges and had great success as a runner, a cyberspace warrior and community member, a friend, brother, and son. Brendan did a lot in his 28 years. It went too fast, but we are forever grateful for having him in our lives.”
The Hunts and JDRF are rallying support from individuals, corporations, and foundations across Canada to help establish the Fund, which has reached over $650,000 towards its $1M goal. Once established, the Fund will remain a mechanism for funding any of JDRF’s mental health strategy initiatives as they arise.
JDRF looks forward to celebrating the fund’s donors once $1M is raised to launch the Brendan Hunt Diabetes and Mental Health Fund at JDRF.
Most recently, Evan Hunt raised nearly $16,000 from various donors for the Fund through his marathon run in Brendan’s honour.
“JDRF is deeply committed to creating mental health resources for the millions of Canadians impacted by diabetes,” Evan shared on his crowdfunding page. “Running for 3 hours and 53 minutes around Vancouver and getting to the finish line was truly a highlight of my life. Despite the pain in the final stretch, it was so rewarding and only increased my drive to keep running and honouring Brendan’s legacy.”
To support the Brendan Hunt Diabetes and Mental Health Fund at JDRF through a leadership gift, contact Jen Bavli, Director of Leadership Giving, at jbavli@jdrf.ca or 604-292-2777.
If you or a loved one are experiencing diabetes distress or other mental health challenges, you may find a mental health provider near you at https://directory.breakthrought1d.ca/
Devin Myers is a health writer as well as a registered nurse. She has experience in various areas of nursing including critical care and hemodialysis. She has worked with many people with type 1 diabetes (T1D) throughout her career and has relatives with T1D.
Her passion is sharing health information on a large scale to help people live healthier lives.
When not writing or working as a nurse, you can find her spending time with her husband and son, hiking, boating, and spending time at the family cottage.
What I, a nurse, want patients with type 1 diabetes to know before their next healthcare appointment.
The three things I want you to know are:
I am listening.
I care.
I want to work WITH you to find solutions.
I know many people with type 1 diabetes (T1D). My sister was diagnosed at the age of 5, my brother was diagnosed at the age of 16, and I have other close relatives who have been diagnosed. I am also a registered nurse with eight years of experience and have cared for many people with T1D over the course of my career. I see the daily challenges and how every aspect of life can be impacted. So many people with T1D often feel misunderstood and judged by healthcare providers.
I spoke with my sister, Jane, who has had T1D for 32 years. When I asked about her experiences with healthcare providers, she said that when she was first diagnosed at 5 years old, she remembers that all the healthcare providers were very nice. When she got older, she remembers feeling ashamed when going to appointments.
Some of the more unpleasant interactions stick out in her mind. She said, “A doctor once told me I was her worst diabetic”. She also stated that a healthcare provider asked her when she ate her last chocolate bar. During another visit a healthcare provider said, “I am a diabetic too, so I know how this works” and proceeded to tell her a list of things she had to do. Because these specific things were working for him, he said they “should” work for her too. Jane states, “It’s hard because you’re the one living with it and you try your best”, but often she feels unheard during these appointments.
I have heard similar stories from other people with T1D that I have met with in my practice, as well as my other family members. I think it is safe to assume that you may have had at least one encounter with a healthcare provider that made you feel shame, guilt, or unheard.
So, imagine you are due to have your next appointment with your doctor. You are worried your A1C, the measurement of your blood sugar average over 3 months, will be high. The last few weeks have been stressful. You know you didn’t eat as well as you “could” have, and you have been exercising but “not enough”. You are ashamed that your blood sugar level isn’t where you need it to be, and you don’t want to feel even worse about it when you speak with your healthcare provider.
You arrive for your appointment. You walk into the building, and you see me, your nurse. I greet you, get you situated, and then we begin. Remember the three things I want you to know:
I am listening.
I genuinely want you to tell me what you are thinking and feeling. I want to know how your life has been since your last visit. What have you been struggling with? What has been going well? What do you need help changing, or maintaining, with your blood sugars, schedule, insulin, and diet? Share as much as you feel comfortable sharing. The more information I have about how things are truly going, the better care I can provide.
Also, remember that we are all human. Healthcare providers can say the wrong thing. It is unfortunate but it is the reality. We all have our biases that we may not even notice. If something I say upsets or offends you, tell me. I want to know so that I don’t do it again. If you have had a negative experience in the past with another healthcare provider, tell me. I don’t need to know the specific details, but knowing your general experiences will help me support you in ways that another healthcare provider was not able to.
I care.
I want to help people be healthy. I don’t want to speak for all healthcare providers, but it is a safe bet that most healthcare providers want that too. I care about your health, and I genuinely want to spend my time helping you be the healthiest version of you.
I want to work WITH you.
It is your life. Your daily routines, diet, hobbies, interests, joys, challenges, and supports are all different from mine, and everyone else. What works for my sister, my brother, and my other patients in terms of insulin, exercise, and diet might not work for you. Everyone is so different and so many things affect your blood sugar and how your body uses insulin; diabetes management is not a one size fits all.
My goal is to find solutions that are going to work for you. It is a collaborative effort when coming up with a plan that will help you be as healthy as you can be. If your conversation doesn’t feel collaborative, speak up.
I, unfortunately, will not be with you during your next appointment. You may not get to speak with a nurse before you see your family doctor, an endocrinologist, a dietician, a lab tech, or anyone else on the healthcare team. But please remember that I am listening, and I care. I want to work with you and all other individuals with diabetes, and other healthcare providers do too. Go into your next appointment with this mindset. See if it helps you share a little bit more, or address something that was said that made you feel shame. Collaborate with your healthcare provider to set a realistic goal for your next appointment that you feel might fit with your life. Open communication is the key to good care. You can do it. We are listening.
If you need some more resources, a peer support group, or other educational material, the JDRF has supports in place.
Suzanne Reisler Litwin has been fundraising for JDRF, quite close to the organization’s founding and has a goal of raising $50,000 for this year’s Montreal JDRF Walk to Cure Diabetes to support type 1 diabetes research.
Suzanne Reisler Litwin, born and raised in Montreal, is a mom and an educator at Concordia University in the Continuing Education department. She also teaches creative writing courses at the Cumming Centre. She holds creative writing workshops depending on where the need is and writes a bi-monthly column in The Suburban newspaper.
JDRF recently had the chance to talk with Suzanne about her more than 40 years of fundraising for the organization and her hopes for the future.
JDRF: Tell us about your time with JDRF and why you’ve been so committed to the cause for so many years.
Suzanne: It started 43 years ago, when I was 18 years old, in 1981. I think I was 17 and I had a little crush on Jimmy Garfinkle’s brother David (brothers who live with type 1 diabetes and are members of JDRF’s Montreal-based founding families). So when he asked me to do the Bike-a-Thon (one of the first JDRF fundraising events), I obliged. I took a few girlfriends with me, and we were all eager to help and support the type 1 diabetes (T1D) community. It was very grassroots, the way in which we got donors, you had to go door-to-door and ask for support. It was a 50km bike ride, and people would donate 10 cents or 25 cents a kilometer. We had sponsor sheets, and once the event was completed, we went back to the donors to collect the proposed funds. Everything was in coins and dollars. I had to go to the bank, roll the coins, and make a cheque for the foundation.
As for me and David? David and I were not to be. But I ended up marrying Jimmy’s best friend, so we stayed very close, raising our families together and being forever friends.
For me, raising donations for the Bike-a-Thon was fun. A sponsor would offer a dollar a kilometer, and it was amazing. In the first year, I raised about $100, then a bit more, and then a few years later I raised $1000 and became an Executive Rider. That provided us with an executive rider tent. At that point, the event had moved from Hampstead to a larger location because it was getting too big for the original location. We would ride a 5km route, and do it 10 times, riding through the city of Montreal.
At this point as well, I was given more tools to reach out to more people who had already sponsored me. In 1987, I started sending letters to my sponsors. The organization was called JDF (Juvenile Diabetes Foundation) at the time. They gave me the JDF letterhead, and I used it to type out my personalized text, and we ran it through the printers. Everything was done by hand; nothing was digital yet. I didn’t realize it then, but these 20-25 letters would become the cornerstone of my fundraising efforts.
Those JDF sponsor letters produced $2, 3, 4K – and then I got creative. I decided the best way to get funds was to give a ‘gift’ or a ‘gift with purchase’. In 1997, I wrote a rap, in 1998 I wrote a ‘cheer; in 1999 I ‘sent a penny’ as our team’s lucky charm. I gave everyone a penny hoping to raise more money, the next year I increased it to a nickel. Then I started to give items from the dollar store, like a mirror, for our theme “mirror mirror on the wall’, asking our sponsors to look into the mirror and see an amazing fundraiser.
For my 20th year JDRF fundraising anniversary, I sent a wedding anniversary invitation. The following years, I would send Blackjack playing cards, lottery tickets, post-its, anything that was flat, light and inexpensive, went into the letters. People started anticipating a theme. I’d get stopped in the grocery store and people would ask me, what’s this year’s theme?
In 2004, we switched from the Bike-a-Thon to the Walk (JDRF Walk to Cure Diabetes). During the ride, four years in a row, we had terrible weather. Rain, snow, people were freezing, the Bike-a-Thon, now called the Cyclothon was in May, which can still be dicey weatherwise in Montreal. We looked at each other and said there had to be a better way. So, we switched to doing the Walk (which takes place in June).
It was around this time, I started focusing on annual fundraising themes, and then in 2013, I made the switch to digital media. I was able to work with super talented graphic designers. When I turned 50, the theme was, “50 Shades of Suzie”. The gift with the letter was a 50 cent coin! At this point, all my sponsor letters and fundraising went digital and the campaigns were raising $15K to $20K, went to $25K, The campaigns were really consistent with these big numbers and everybody was still receiving gifts. The campaign themes were becoming entertaining, which caused some curiosity.
Today, I cap the sponsor letters at 250. It’s just enough so I can keep costs down, and still raise a significant amount of funds. (JDRF note: Suzanne doesn’t charge anything back to JDRF and everything is done out of pocket).
After the pandemic, I realized the strength of social media and how powerful it can be. With social media, I was able to create ‘interactions’ with my sponsors and media followers. I think it was in 2022, I’m just learning how to do these things, as I’m no spring chicken, ya know. I had my face photo shopped into Rosie the Riveter. Instead of the statement ‘We Can Do It!’ we wrote, ‘We Can Cure It’. We sent our sponsors a red bandana and asked them to take a photo wearing it and making the hallmark fist pump. The photos got posted to social media everywhere. That’s when the campaign got traction. People would ask me for a bandana. We had so many photos of people, babies, children, dogs doing Rosie the Riveter. We raised a lot of funds for this campaign and I realized the power of social media and interaction. People wanted to be part of this “Fun-raising”. Anyone who asked me for a bandana, I would say sure, but I would also ask for a donation to JDRF.
Last year (2023), we sent our sponsors round colourful glasses, based on the 1960’s and a groovy theme. The campaign created wonderful interest, curiosity and amazing participation. We raised over $44,000 trucking down the JDRF highway!
This year (2024), we sent big $ dollar sign rhinestone gold necklaces and feathers. Our theme and slogan is ‘Viva Las Curas’ (Live the Cure), which is based on the glamour and high rollers of Las Vegas. I really had to think hard this year – How was I going to spin Vegas into a diabetes cure? The idea took months, what were we going to send, how can we mail it? We landed on FEATHER$$ and Viva Las Curas.
Today, we are so far so good. I am receiving Viva Las Curas pictures, and we are on track. Every month, I need to raise about a third of my goal leading up to the Walk. I believe there is a good chance I might get close to $50K. We hope everyone participates. It’s all about the T1D community, having fun; I call it ‘FUN-raising’. It’s also about awareness, and helping more people learn about T1D and its impact on people who live with it.
But… I must emphasize – I don’t do this on my own. I have a team of people who work with me every year. Excellent printers, graphic designers, artists, friends and family and we regroup every year, and think about how we can do it again, even better, next year. The JDRF Staff/friends (Staffriends) are the most amazing people to work with. JDRF and its staff are simply the most BEAUTIFUL and THE BEST! We couldn’t do what we do without this amazing organization and peeps.
Even my Mom, who will be 90 years old, is a huge participant in the complete process. It’s a family thing, and it ends up being a very big part of my life, our lives.
It’s not just a fundraising campaign, it’s part of the landscape of who I am. And I have two personal feelings about it – I like to finish everything I start in my life. I feel I started this, and it’s not finished, so I continue. My other personal quest is, if it should happen, if there is a cure for T1D realized in my lifetime, we, our team, would be a part of that success. That my time here on earth was useful, not just for my family and my career, but for mankind. I don’t ever want to give up that opportunity of a T1D ground breaking success. Even if it doesn’t happen in my lifetime, I can still rest knowing that we have tried, in my life, to change the trajectory of mankind, and that we never gave up.
Even when I see people using their CGMs (continuous glucose monitors that measure blood glucose levels in people with diabetes), I feel we helped contribute to that. Non nobis solum, Latin for ‘not for ourselves alone’. Not just for us, but for everyone. We go through life as yourselves, and those closest to us. I ask, what is your footprint in this world? This is our opportunity to maybe create a life changing footprint. For this, we are not willing to give up. I believe something will be realized soon (when it comes to cures for T1D). If not in my lifetime, perhaps in my children’s lifetime. This is the wonderful opportunity that we work with and love.
JDRF gives me almost carte blanche to do what I want. Other organizations don’t provide that type of freedom, I share the campaign theme with my JDRF co-workers, I get the OK and I can exercise my creativity. Then we run with it. We trust each other.
It’s a gift for me, that I can continue to do this year over year. I love it. It’s a tremendous, creative space for me. The Walk brings people together in an enthusiastic way. This year I have so many more requests from people who want to join our team, Suzie’s Sweethearts, who will embrace our Vegas showgirls and showguys theme. We will all be wearing special T-shirts and FEATHER$$ at the Walk this June.
This year, while walking, we will give away our feathers and necklaces to children walking near us. By the time we finish, we don’t usually have what we started with as we share the joy while Walking to Cure T1D.
After the Walk, team Suzie’s Sweethearts goes back to my home, to relax and enjoy the accomplishment. Then I get into bed around 3pm, and I sleep for hours in the most content sleep. When I wake up I usually say, ‘OK, what’s next’?
Other organizations have tried to poach saying, ‘you’ve done so much for JDRF, maybe come to us for one year’.
But I always go back to my original promise I told Jimmy and David, as long as you have diabetes, we will do this. I committed to them, and they committed to me. Sadly, there is growth in the T1D community, so we can’t stop now, we mustn’t stop!
Our fundraising takes up to 10 months of the year, it’s constant work. I take the month of July off after the Walk. In August, we send out really amazing thank you letters to our sponsors. Then, the process starts again in September, October to come up with the next theme, the slogans, gifts, and the graphics, to keep the momentum going. (We have a thought for 2025 😉)
We will keep going until the day we have cures for T1D, and I have kept my promise to Jimmy and David.
Breakthrough T1D Canada has been clarifying elements of Bill C-64 – National Pharmacare Act with the government and we wanted to share what we’ve learned. We will continue to update as we learn more and share with our T1D community and stakeholders:
Frequently Asked Questions
Q: If I currently have private health insurance that covers insulins NOT on the national pharmacare list, will I still be covered for those? A: Yes, the national pharmacare plan will NOT replace existing private or public insurance coverage. It is meant to be additive.
Q: If I currently have private health insurance that covers insulins on the national pharmacare list, do I need to switch to the government-funded plan? A: No, you can choose to remain on your existing private health insurance for this coverage.
Q: If I am currently on a public provincial plan that covers insulins NOT on the national pharmacare list, will I still be covered for those? A: Yes, the national pharmacare plan will NOT replace existing public or private insurance coverage. It is meant to be additive.
Q: If private and public insurance will NOT be replaced by national pharmacare, what is the benefit of a new pharmacare program? A: The national pharmacare plan will potentially augment existing provincial plans. It can also benefit those who are uninsured, underinsured or those who have a co-pay with private insurance and national pharmacare makes access more affordable.
Q: If I have private or public insurance and I am using an insulin on the national pharmacare list, who will pay for it? A: If you are using an insulin on the national pharmacare list, you will have the choice of remaining on a publicly-funded plan or your private insurance plan.
Q: Is the backgrounder list of insulins a final list of what pharmacare will cover? A: The backgrounder is meant to be a minimum starting point. The goal is to expand this list through negotiations with provinces and territories.
Q:Will the national pharmacare insulin list be the same across all provinces and territories? A: The list provided is for discussion with Provinces and Territories for specific coverage within that Province and Territory. There may be some differences across provinces, depending on what is negotiated in agreements between provinces and territories and the federal government.
Q:Will my device be covered under the diabetes devices and supplies fund? A: The federal government is consulting with provinces, territories, and stakeholders to identify gaps in coverage to focus on related to the special devices fund. More information will be provided following those discussions.
March 8, 2024
The last week of February 2024, Breakthrough T1D Canada (then JDRF) staff joined Health Minister Mark Holland in Ottawa as the federal government officially announced the tabling of a framework for a National Pharmacare plan (Bill C-64). This is the first major step towards a national universal pharmacare plan for Canada and a historic milestone for all Canadians living with type 1 diabetes (T1D) as the government announced that one of the first drugs that will be covered is insulin. The announcement also included a specific intention from the government to provide universal, single-payer coverage for diabetes devices.
While this is all good news for Canada’s T1D community, families hoping to take advantage of this coverage will have to wait as several steps must take place before pharmacare gets implemented.
Now that this legislation is tabled, what happens next?
Legislative Process
Bills (like Bill C-64, An Act respecting pharmacare) are proposed laws (not in effect) and must be introduced in either the House of Commons or the Senate. Like all bills under Canadian federal law, Bill C-64 (Pharmacare Act) must follow the legislative process of debate, review, and voting before officially becoming law.
Tabled on February 29, 2024 Bill C-64 entered and completed the first stage of this process on the same day. Known as first reading, the bill was formally tabled in the House of Commons.
A closer examination and debate over the principles of the bill will then take place during second reading, culminating in parliamentarians voting on whether the bill continues the process.
Should that vote succeed, the bill is then sent to the committee stage where a smaller group of parliamentarians will study the bill in detail, section-by-section, and often inviting government officials and/or experts (sometimes even advocates) as witnesses, and vote on amendments before delivering its findings in a report back to the chamber.
At the report stage, parliamentarians can debate on the amendments from committee or suggest new changes to the bill before it becomes finalized in the next stage.
At third reading, parliamentarians debate and vote on the final form of the bill. If the bill fails this vote or if a decision is not made before a session of Parliament ends, the bill stops going through the legislative process and is officially lost. Should the bill pass the vote at third reading, it is then sent to the Senate where it must succeed at every stage of the process again (from first reading to third reading) before receiving Royal Assent.
Once the bill has passed through the House of Commons and the Senate in identical form, the bill is given to the Governor General for Royal Assent and at that point it officially becomes law.
Despite the contents of the bill, provincial and territorial governments are still responsible for the management, organization, and delivery of health care services in Canada. Should Bill C-64 pass the legislative process and receive royal assent, the federal government then has to work with willing provinces and territories (PTs) to implement coverage for specific diabetes medications through bilateral agreements, per the legislation.
Funding will augment, rather than replace, existing PT spending on public drug benefit programs. The governments of each PT must negotiate and enter into an agreement with the federal government before national pharmacare can be expected to roll out.
As the Bill and pharmacare itself are still in early stages, it is yet to be determined what would happen with PTs that elect not to participate in the program. Following the news of a reached agreement between the federal Liberals and NDP on national pharmacare, media has reported that the governments in Alberta and Quebec have announced their intention to opt out of this plan. The Ontario government also has not committed to a national pharmacare plan and has opted to assess the details first. While compensation is on the table, further discussions are expected to take place in the coming weeks now that the Bill has been tabled and its contents made public.
What do we know right now?
If passed, bill C-64 will ensure that following agreement with provinces and territories, people living with T1D in Canada will have access to insulin. Insulin can cost in the range of $900-$1,700 per year per individual, depending on the type and dosage required.
The Government will be launching discussions with PT on providing universal, single-payer coverage based on this list of diabetes drugs and insulins:
Drug Class
Brand Names
Generic Names
Combination Formulations
Synjardy
Empagliflozin & metformin
Jentadueto
Linagliptin & metformin
Komboglyze
Saxagliptin & metformin
Insulins
Trurapi, Kirsty
Aspart biosimilar
Apidra
Glulisine
Admelog
Lispro biosimilar
Humulin R, Novolin ge Toronto
Regular, Human
Entuzity
Concentrated Regular, Human
Hypurin Regular Insulin Pure
Pork regular insulin
Hypurin Nph Insulin Isophane Pork
Insulin Isophane, Pork Pure
Humulin-N, Novolin GE NPH
Isophane Human, NPH
Levemir
Detemir
Basaglar
Glargine biosimilar
Semglee
Glargine biosimilar
Humulin 30/70, Novolin 30/70
Reg-Isophane, NPH Human
Insulin Secretagogues
Diamicron MR
Gliclazide
Glyburide
Biguanides
Glucophage
Metformin
SGLT2 Inhibitors
Forxiga
Dapagliflozin
Separate from Bill C-64, the federal government is announcing its intention to establish a fund to support access to diabetes devices and supplies (such as continuous glucose monitors). Further details regarding this fund will be provided following discussions with PT partners, who will be essential partners to the roll out.
Next Steps
Bill C-64 is still in its early stages, and we expect it to continue to evolve and develop as the government consults with provinces, territories, Indigenous peoples, and other partners and stakeholders. As it makes its way through the House of Commons and then the Senate, you can read the debates and follow its legislative process on the federal government’s website here.
In its current state of the bill at first reading, should the bill receive Royal Assent:
The Health Minister will establish a committee of experts within thirty days that will make recommendations concerning the options for operating and financing a national, universal, single-payer prescription drug insurance plan.
Ministerial outreach will commence on next steps, including discussions with provinces and territories regarding bilateral agreements.-
The Health Minister will request that within one year on which this Act receives royal assent, the Canadian Drug Agency:
Prepare a list of essential prescription drugs and related products to inform the development of a national formulary
Develop a national bulk purchasing strategy
What is Breakthrough T1D Canada’s role?
Our work is not done. We will still have a role to play in advocating to ensure that the right list of essential type 1 diabetes devices and treatments are part of the national formulary, as well as ensuring the special fund for provinces on devices does provide equitable and affordable access. Patient choice will be paramount in our advocacy strategy around pharmacare.
Alison Hunt is celebrating her 28th DiaVersary by walking 28km to raise funds for JDRF and T1D research
I was born and raised in Sudbury, Ontario and moved to Ottawa, Ontario in 2010 to start my undergraduate degree. I graduated with an Honours Bachelor of Social Sciences in International Development and Globalization from the University of Ottawa in 2014, and stayed in Ottawa where I currently reside with my husband J-F and our one-year-old Doberman, Rogue. In my spare time I enjoy travelling, going to sporting events and concerts, baking, playing board games with friends, and walking and snuggling with my dog!
A DiaVersary is the day that you were first diagnosed with type 1 diabetes (T1D). Can you tell us a little more about what you remember from that day and why you have chosen to make it a positive with this fundraiser?
I was diagnosed with T1D in August 1996, a couple of weeks before starting my first year of school. Having just turned four years old, I don’t remember much about my hospital stay when I was initially diagnosed. I do remember my older brother coming to visit me in the hospital and playing a Space Jam arcade game in the hospital’s playroom, and going for walks along Ramsey Lake where I painted rocks.
I also remember that by the time I left the hospital, I had quite the collection of finger puppets knit by hospital volunteers, which served as a welcome distraction from the many finger pricks (blood tests to test blood glucose levels)!
My mom learned to administer needles on an orange and counting carbohydrates was more challenging back then as not all food items had nutrition labels like most do now. Being an avid dog lover for as long as I can remember, one of my fondest post-diagnosis memories was receiving an enormous stuffed animal dog from the owner of my dad’s place of work, which I at first thought was real, and later named Mutsy.
Growing up with T1D I played numerous sports including soccer, tennis, rowing, dance, horseback riding, swimming, and badminton, enjoyed sleepovers and birthday parties with friends, and went on many school field trips and family trips. My family never let my T1D get in the way of enjoying all the things that a child without T1D would enjoy – it just became our new life routine, and I owe the positive attitude I have around T1D today to them. While it took a lot more planning, particularly around insulin dosing and carbohydrate counting, they never let that stop me from trying new things or making new memories.
What changes have you seen in T1D management since your first ‘DiaVersary’?
I was on multiple daily injections from 1996 until 2016 when I switched to an insulin pump (Animas and later Tandem) and not long after, started on a continuous glucose monitor (CGM) (Dexcom).
Having a CGM truly changed my life as I had developed hypoglycemia-related anxiety by adolescence, and, as a result, chose to miss out on activities as well as keep my blood glucose levels a bit higher than they should have been in an effort to prevent lows. I now have the best control I’ve ever had, but it is not solely because of these medical devices.
If I could teach the public one thing about T1D, I would want them to know that while diabetes technology has come a long way and has definitely facilitated some aspects of diabetes management, the onus for management still lies on the individual with T1D, and it is not as simple as counting carbohydrates and taking insulin.
I owe my great diabetes control to my unrelenting hard work, perseverance, and dedication, as do many other T1Ds – all things I have learned to take great pride in. While some days it’s easy to think, “Why me?”, I’m a firm believer in making the most of the cards you’ve been dealt. As a result, I’ve made the conscious decision to prioritize my health in order to ensure I have the lowest chance of developing complications from things that are within my control. I know that I am the most self-disciplined, patient, and resilient version of myself as a result of my diagnosis and for that I am very grateful.
What has fundraising for JDRF meant to you personally?
T1D is a very isolating condition – you are constantly counting carbohydrates, treating lows, reviewing your Dexcom graphs for patterns, bolusing (insulin administration) for food, correcting highs, planning and making adjustments for exercise, experiencing many sleep deprived nights, coping with the stress of it all…the list goes on. There are truly no breaks – it is on your mind 24/7, 365 days a year. At the same time, it is also a very invisible condition as you likely wouldn’t know someone has it unless you know what an insulin pump or continuous glucose monitor is, and you can visibly see it (or if you see an adult chugging a juice box and know what that means!!).
Fundraising for JDRF makes me feel incredibly loved and supported by all my friends and family who either donate, join my team and walk with me, or even reach out with a kind message of support. It always reminds me that I am not alone in this fight, however isolating it may feel at times, and for that I am so appreciative. I know that I am also greatly benefiting from the investments in research that are being made as a result of the funds raised.
In honour of my 25th “diaversary”, I decided to walk 25KM over two days, and did this again the following year, walking 26KM. I took the year off in 2023 as I was busy preparing for our wedding but am once again participating in the JDRF Walk to Cure Diabetes this year and will be walking 28KM over two days in honour of my 28th “diaversary” in August. I hope to continue doing this for many years to come.
What are your hopes for the future?
I am not certain that we will turn type one into type none in my lifetime, but I hope T1Ds like myself will continue to benefit from advances in technology – things such as being able to give a bolus from your cell phone (making dress-wearing a lot easier!), more advancements to closed-loop systems, and even smaller and longer lasting CGM sensors. I also hope that there will be increased public education around T1D, which is so commonly mistaken for T2D.
I spent many years feeling ashamed of my diagnosis and often tried to hide my condition because I never wanted to stand out. But as I grew older, I gained more confidence and my mindset changed from wanting to hide to wanting to educate and inspire others, and I hope that reading my story has done just that.
JDRF’s Mental Health and Diabetes Strategy – where we are now
May is Mental Health Awareness month, a national movement to raise awareness of the importance of mental health, and the structural gaps that exist in accessing treatment and support.
There is no physical health without mental health. JDRF has long recognized the need to prioritize both – particularly as it relates to our mission to improve the lives of people living with type 1 diabetes (T1D).
T1D affects a person’s emotional, social, and mental wellbeing throughout their lifetime, known collectively as psychosocial health. Psychosocial health is directly related to physical health, and to health outcomes like glycemic control in T1D. JDRF’s Mental Health Strategy, launched in 2021, aims to better support this critical need that has long been underappreciated and undertreated in people with T1D.
T1D is a lifelong disease that involves constant blood glucose monitoring, counting carbs, fear of T1D related complications, and taking insulin every day just to stay alive. The stress around diabetes management can manifest in depression, anxiety, and “diabetes distress” – a term describing the powerlessness, stress, guilt, relentless worry and denial that accompanies living with diabetes and the burden of self-care.
But for too long, healthcare practitioners almost exclusively focused on the physical aspects of T1D without addressing mental health. T1D can also be an isolating condition, and many living with it don’t have appropriate social or community support.
It is for this reason that JDRF Canada developed a three-pronged approach to its mental health strategy:
Why it matters so much:
I was diagnosed with type 1 diabetes when I was ten years old, and now I’m 19. Even after nine years of living with this disease, I still have daily challenges and struggles. However, I wouldn’t be who I am today without my battle with type 1. I just completed my first year at UBC to gain a bachelor’s degree in psychology. My dream is to become a psychologist for children with chronic illnesses. I believe my personal experience as a child with a chronic illness could benefit and support others in similar situations. I’m so thankful for the inspiring donors who support JDRF, which is working hard to find a cure for all of us affected by T1D. –Shay, diagnosed at age 10
Research Update
The Mental Health + Diabetes Training Program: Preparing a new generation of providers
Dr. Tricia Tang and her team at UBC will also evaluate our model to train the next generation of clinical counsellors, clinical psychologists, and social workers to connect with and work effectively with the diabetes patient population across Canada and to access and navigate the Mental Health + Diabetes Directory.
This study will help to understand the impact of the Mental Health + Diabetes Training Program by carefully compiling evidence-based outcomes and feedback from mental health providers and their patients.
JDRF Canada – Brain Canada Addressing Mental Health in Type 1 Diabetes Team Grants A randomized controlled trial of the REACHOUT intervention
Dr. Tricia Tang, University of British Columbia (UBC)
Dr. Tang and her team at UBC are using a virtual care platform to deliver peer-led mental health support to adults and youth with T1D in rural BC through a mobile app called REACHOUT. After hosting focus groups last year, the team redesigned the REACHOUT app to better meet the needs of the community. More than 75 Peer Supporters (i.e., adults with type 1 diabetes trained to deliver mental health support to others with type 1 diabetes) were recruited to support the REACHOUT intervention.
Teaching adolescents with T1D self-compassion to reduce diabetes distress
Dr. Marie-Eve Robinson, Children’s Hospital of Eastern Ontario (CHEO)
Dr. Robinson and her team are testing the effectiveness of a mindful self-compassion program on improving diabetes distress, anxiety, depression, diabetes-related disordered eating, and suicidal ideation experienced by youth aged 12-17 years with T1D. The program focuses on teaching self-kindness, mindfulness, and the idea that negative experiences are not personal failures, but part of the common human experience. Study recruitment began in October 2022 and was completed in March 2023, with 141 participants enrolling. The first results are expected in June 2024. The study methodology was published in JMIR Research Protocols.
Dr. Peter Selby, The Centre for Addiction and Mental Health (CAMH)
Dr. Selby and his team are bringing experts in mental health and T1D care together with those who have lived experience of T1D to co-develop a tech-based solution for diabetes distress for adults between the ages of 18 and 29, a group disproportionately vulnerable to diabetes distress.
JDRF-CIHR Mental Health Grants
Supporting youth with T1D during transition from pediatric to adult diabetes care
Dr. Sonia Butalia, University of Calgary
Dr. Butalia and her team are researching the transition from pediatric to adult diabetes care – a crucial and tenuous time for many living with T1D. Dr. Butalia completed a successful pilot intervention that supports teens through texts, emails, phone calls, and social media groups, which saw improved blood glucose levels among those involved in the program. Currently, she is expanding the program to five sites in Alberta and evaluating its impact on participants’ mental health and diabetes management. Her team is also designing a free toolkit for other locations to implement the program.
Adaptation and pilot evaluation of a digital intervention before and during pregnancy
Dr. Deborah Da Costa, McGill University
Diabetes-specific distress and poor mental health during the preconception and pregnancy period can adversely impact mother and baby health, yet research in this field has not been prioritized, and limited interventions exist. Dr. Da Costa and her team previously developed a successful digital intervention for pregnant, birthing, and postpartum women. They will now use the JDRF-CIHR grant to collaborate with diabetes experts – primarily those living with T1D and T2D – to adapt their platform for women with pregestational diabetes.
Peer mentorship to increase physical activity and quality of life in adolescents with T1D
Dr. Jonathan McGavock, University of Manitoba
Though physical activity is a crucial component of T1D management, essential for optimal quality of life, and a significant factor in mental health, daily physical activity levels remain low in adolescents with T1D. Dr. McGavock and his team are conducting a 12-week program of group-based exercise led by mentors with T1D living healthy, active lifestyles. This program will seek to impart to the participants a sense of mastery, relatedness, and connection with peers, and a sense of autonomy to improve their quality of life through healthy, active lifestyles.
Find Your CommuniT1D: Customized Virtual Peer Support for People Living with T1D
Dr. Holly Witteman, Université Laval
Dr. Witteman and her team are creating a virtual peer support program and community led by people with T1D and with support from research team members who bring expertise in mental health, diabetes care, psychology, and social support. This program will consist of small group meetings intended to connect people with T1D and their caregivers based on their individual characteristics, hobbies, interests, language requirements, etc., while continuously adapting to the community’s needs. The research focuses on the feasibility and acceptability of the program as well as its impact on diabetes distress, quality of life, well-being, diabetes management, and use of resources.
Training Mental Health Providers
JDRF Canada and Diabetes Canada collaborated to launch the Mental Health + Diabetes Training Program in English and French in March 2023. The course consists of two streams: one for mental health providers in Canada – including registered psychologists, clinical counsellors, psychotherapists, social workers, psychiatrists, and mental health nurses – and one for the diabetes community and healthcare providers, caregivers, family members, friends, and anyone who wishes to take the general stream of the course.
Despite the large number of people living with the condition, only a handful of mental health providers in Canada have in depth knowledge of the unique psychosocial challenges that come with living with diabetes. The goal of the Mental Health + Diabetes Training Program is to prepare mental health providers to have sufficient knowledge and skills to assess and treat their patients living with type 1 or type 2 diabetes.
Training Program and Directory Stats
(as of April 2024)
557 mental health providers enrolled in the program
873 others (people with T1D, family members, etc.) enrolled in the program
124 mental health providers approved to be listed in the directory
Approved as a sponsor of continuing education for psychologists by the Canadian Psychological Association, valid for 10 credits
Approved by the Order of Social Workers, Family, and Marriage Therapists of Quebec (Ordre des travailleurs sociaux et des thérapeutes conjugaux et familiaux du Québec) and the Ordre des Psychologues du Québec to provide continuing education to their members
As a contributor to JDRF’s Mental Health + Diabetes Training Program, Lujane shared experiences that impacted her mental health, which highlight gaps in care:
“One night, I was experiencing some troubling symptoms with my T1D and called the endocrinologist on-call at the hospital to ask what I should do. He immediately advised me to go to the hospital. When I went in, the ER doctor looked agitated and tired and questioned why I even came that night. This experience was both positive and negative. I had one physician who cared for my health and listened, and I had another physician who didn’t listen and who made me feel shame.
There is a disconnect in the healthcare system, and people with diabetes often fall between the cracks by being told to take their health seriously and having the onus put on them to make good choices, but at the same time, not having that seriousness and care shown to them. Experiencing this disconnect, on top-of the 24/7 self-management of T1D and fear of complications, takes a toll on your mental health.” –Lujane, diagnosed at age 18
Mental Health + Diabetes Directory
Mental health providers who complete the Training Program can apply to be listed in our bilingual, publicly accessible Mental Health + Diabetes Directory, allowing healthcare providers and people living with diabetes to be referred or self-refer to trained providers who can offer specialized support to youth and adults living with diabetes.
As of April 2024, 124 mental health providers are accepting new clients via our Mental Health + Diabetes Directory across Canada, including Vancouver-based Clinical Counsellor Shalet Rosario, who shares:
“I’ve walked the path of type 1 diabetes since I was 12 years old, and I intimately understand the ups and downs that come with it. I’ve faced the unique challenges and triumphs of this journey, and I’m here to lend an understanding ear and a helping hand to individuals, couples, and families affected by diabetes and who grapple with diabetes-related burnout, psychological trauma, depression, and anxiety.”
Engagement, Education and Support
Our mental health strategy’s engagement, education and support activities focus on health care providers as well as people who live with T1D and their families and caregivers.
Donor funding helps us produce new educational materials for healthcare providers and the T1D community that cover the mental health aspects of diabetes. These include electronic briefs, webinars and events, a dedicated hub on our website, and promotion of the Mental Health + Diabetes Directory among healthcare providers as a referral source for their patients.
Let’s Talk T1D Education Series
A Let’s Talk T1D Education Series webinar on mental health was held in English and French in May 2023 with the aim that it become an annual event to promote Mental Health Awareness Month. There is a second Education Series on Diabetes and Mental Health featuring mental health providers that specialize in diabetes with Dr. Michael Vallis and Zosia Anders, taking place on May 30, 2024, along with future plans for a webinar on disordered eating and T1D.
Raising Awareness about T1D and
Disordered Eating
In December 2023, we co-hosted a webinar about T1D and Disordered Eating in partnership with the National Eating Disorder Information Centre (NEDIC). More than 500 healthcare providers nationwide and beyond signed up for the English webinar and 80 for the French webinar, highlighting the gaps in knowledge that exist among healthcare providers.
Aude Bandini bravely shared her experience with T1D and bulimia. She went into diabetes ketoacidosis (DKA, a potential life-threatening condition when blood glucose levels are dangerously high) when she was 17, and it wasn’t until age 36 that she noticed her healthcare professionals were finally starting to acknowledge the mental health impacts of T1D.
“Most of the time, I left the physician’s office crying,” Aude shared. “With my diabetes team, the approach was exclusively focused on numbers and glycemic control. I think they thought that through punishment and threats and guilt, I would behave, and of course, it did not work that way.”
Mental Health and T1D Community Grants
As part of JDRF Canada’s Mental Health Strategy for T1D and a key fundraising pillar of the $100M Campaign to Accelerate, in May 2023 we opened the JDRF Canada Mental Health and T1D Community Grants Program as a new funding opportunity. This incubator initiative is designed to provide seed funding to organizations ready to transform innovative ideas into successful projects to support the mental health and wellness of the T1D community.
Each project was awarded up to $20,000 and will be up to 18 months long, supporting:
The addition of mental health content to established programming for adults with T1D
A virtual mental health training program in Edmonton for people living with T1D
A bilingual webcomic focused on psychosocial issues for children aged 7-12 newly diagnosed with T1D
A French video series that educates and combats stigma around mental health and T1D
In-person programming for people with T1D of all ages at a busy community health centre
With our Mental Health Advisory Council’s input, we will continue to expand our mental health website content, build awareness of our Mental Health + Diabetes Directory so individuals feel empowered to self-refer, and develop new approaches to further educate and connect the community.
JDRF Canada extends our gratitude for the support of our Advisory Council, Cabinet Members and philanthropic partners, including charitable partners Brain Canada and Diabetes Canada.
New funding investments and partnerships are still needed as we go forward. For more information, please emailJen Bavli at jbavli@jdrf.ca.
Looking for more information on available mental health support? Visit our Mental Health + Diabetes Directory to connect with a mental health provider or visit our website for more information.
JDRF also informed Bonnie’s family about studies like TrialNet, which allowed them to screen their five other kids for T1D auto-antibodies. They discovered that their youngest child, Burke, was at a high risk of developing T1D. Thankfully, he is still T1D-free today at age 28 and may have the chance to delay its potential onset with emerging disease-modifying therapies.
Leadership gifts (of $5,000 or more) towards our campaign ensure groundbreaking research advancements to help improve the lives of people with T1D, like Bryn and Jillian, parents like Bonnie, and countless others impacted by this disease.
