November’s National Diabetes Awareness Month spotlights the impact of type 1 diabetes on over 300,000 Canadians. As the prevalence of T1D rises, Breakthrough T1D (formerly JDRF) aims to drive forward research, support, and access to care for individuals of all ages affected by this lifelong condition. We chatted with Jessica Diniz, president and CEO of Breakthrough T1D Canada, to learn more. —Noa Nichol
What inspired the decision to rebrand JDRF Canada to Breakthrough T1D, and how does this new name align with the organization’s goals?
As the global leader in type 1 diabetes (T1D) research and advocacy, we focus on what the T1D community needs now and in the future. Our mission is to break barriers, helping people better manage T1D and live full, healthy lives while working toward a cure. This includes supporting research to prevent, treat, and cure T1D and ensuring access to devices and treatments for the T1D community today.
After two years of research and feedback from the T1D community, we realized our name should reflect both our past and future. We learned that our name needed to represent the life-changing work we do every day and our commitment to all those affected by T1D—children, youth, and adults. What once was thought to primarily affect children, over 70% of new T1D diagnoses in Canada occur in adults, and more than 80% of Canadians living with T1D are over 18.
The name Breakthrough T1D was chosen to better reflect our focus on breakthroughs for every age and stage of T1D. It also honours our 50+ years of research, advocacy, and community engagement, carrying our momentum into the future.
This rebrand, based on a data-driven process and guided by our global headquarters, solidifies our position as a leader in T1D research, advocacy, and community support. We remain dedicated to providing support for the T1D community, including mental health resources, as it drives towards cures and a world free from T1D.
How does Breakthrough T1D plan to address the unique challenges faced by the adult T1D population, given that the majority of diagnoses occur in adulthood?
Part of the decision-making behind our new name is that it will help us continue our work serving the full breadth of the T1D community supporting individuals at any age and at every stage of their journey with the disease.
We have always served the adult T1D community, providing resources to support adults whether newly diagnosed or having lived with T1D for years. But we have learned that many people don’t know this, and our new name will help us better reach out to this group.
Just some of the ways we support adults living with T1D include our Adult Care Kit – a resource providing information and tools to educate and support newly diagnosed adults with T1D or our Breakthrough T1D Education Series, a free webinar that brings experts into your home on a variety of topics important to the T1D community. Our Connection Series offers unstructured opportunities to connect with other adults affected by T1D from across the country. We also have newsletters, events, fundraisers and government initiatives that impact the T1D community. And our Mental Health + Diabetes Directory, which connects people to mental health providers specially trained in diabetes.
What are some of the key research initiatives Breakthrough T1D is supporting to move Canada closer to a future without T1D?
Our top priority is funding cure research focused on enabling the body to naturally produce insulin again, restoring its pre-T1D function. We also support early screening and prevention initiatives, aiming to detect T1D before insulin therapy is required so that interventions can prevent the disease’s progression.
Stem cell-based therapies are advancing rapidly, with several clinical trials in Canada showing promise. These therapies aim to replace the lost insulin-producing cells, potentially eliminating the need for insulin therapy and reducing the risk of complications.
In addition to cure-focused research, we support initiatives that improve T1D management, mental health, and complication prevention until cures become available. We also advocate for better access to diabetes devices, medications, and care, providing essential support for Canada’s T1D community.
This is an exciting time in diabetes research, and we’re optimistic about Canada’s leading role in driving future breakthroughs.
With the growing number of Canadians affected by T1D, what are some of Breakthrough T1D’s strategies to improve access to care across the country?
Treatment options for T1D have significantly improved, particularly with advancements in technology like advanced glucose monitors and insulin pumps.
In the coming years, devices will become even smarter and more automated, reducing the time and effort people with T1D spend on tasks like glucose monitoring, insulin administration, and carb counting. New therapies that complement insulin are also emerging, helping to better manage blood glucose levels and reduce complications like kidney and heart disease.
A promising pipeline of disease-modifying therapies aims to halt the autoimmunity that causes T1D or regenerate pancreatic islets.
Here at Breakthrough T1D, we prioritize patient choice, advocating that every Canadian with T1D should have access to the latest devices, treatments, and technologies. Through our Access for All program, we work with the community to ensure they have a voice in government decision-making on T1D access and support.
How is Breakthrough T1D supporting the mental and emotional well-being of individuals and families impacted by T1D?
At Breakthrough T1D, we recognize that physical health is inseparable from mental health, especially for those affected by T1D. The disease impacts emotional, social, and mental well-being, collectively known as psychosocial health, which directly influences physical health outcomes like glycemic control. In response, we launched our mental health strategy in 2021 to address the underappreciated and undertreated psychosocial needs of people with T1D, acknowledging the lifelong stress associated with blood glucose monitoring, insulin use, and fear of complications. This often manifests as depression, anxiety, and “diabetes distress”—feelings of powerlessness, stress, guilt, and worry.
Historically, healthcare providers have focused almost exclusively on the physical demands of T1D, often overlooking mental health needs, despite the isolation many feel and the need for community support. Breakthrough T1D’s mental health strategy addresses this gap with a three-pronged approach:
- Training Mental Health Providers: In partnership with Diabetes Canada, we launched the bilingual Mental Health + Diabetes Training Program in 2023. The program includes two streams: one for Canadian mental health providers (psychologists, clinical counsellors, social workers, psychiatrists, etc.) and another for the T1D community, healthcare providers, caregivers, family members, and friends. This program equips providers with the knowledge and skills to better assess and treat individuals with T1D and T2D.
- Engagement, Education, and Support: Our engagement, education, and support efforts extend to both healthcare providers and the T1D community. With donor funding, we create educational materials for healthcare professionals and the T1D community, covering the mental health aspects of diabetes.
- Mental Health and T1D Community Grants: A vital part of our mental health strategy and the $100M Campaign to Accelerate, the Breakthrough T1D Canada Mental Health and T1D Community Grants Program was launched in May 2023. This incubator initiative provides seed funding to organizations developing innovative projects to support the T1D community’s mental health and wellness. Partnering with organizations across Canada, we’re increasing the diversity and reach of mental health support for individuals and families affected by T1D.
Through these initiatives, Breakthrough T1D aims to improve the mental health and overall quality of life for those impacted by T1D, ensuring support extends beyond physical care to embrace the holistic needs of this community.
What do you see as the biggest barriers to accessible and affordable T1D care in Canada, and how is Breakthrough T1D working to overcome these?
Breakthrough T1D’s Access for All advocacy program, launched in 2019, aims to make T1D technology and treatments affordable and accessible for all Canadians. Given the financial, physical, and mental health challenges of T1D, we work to improve access to financial support (like the Disability Tax Credit), new therapies, and increased T1D research funding. Universal access to diabetes devices reduces healthcare costs and improves outcomes.
In 2022, we commissioned a study to show the cost-effectiveness of advanced glucose monitors over traditional methods. The study found that, while initially more expensive, continuous and flash glucose monitors save long-term costs by reducing complications, potential hospitalizations, and additional medical interventions. These devices also enhance peace of mind, support better blood glucose control, and improve quality of life, mental health, and daily T1D management.
Access to advanced diabetes devices also helps address socioeconomic disparities in T1D care. Also, out-of-pocket costs remain high, posing a significant financial burden on many Canadians with T1D. Over half of people with T1D experience costs exceeding 3% of family income, and many may forego necessary treatments due to financial constraints.
Alongside volunteers and advocates, Breakthrough T1D engages with all levels of government to advocate for affordable T1D care and improved access today, while advancing research toward a cure for tomorrow.
Looking toward the future, what are Breakthrough T1D’s goals for raising awareness and advocating for the T1D community beyond National Diabetes Awareness Month?
Working with and for the T1D community doesn’t begin or stop with National Diabetes Awareness Month, this just provides an opportunity to shine a spotlight on the reality of life with this disease for the estimated 300,00 Canadians who live with it and recognize the amazing researchers who are working tirelessly to improve lives today while working towards cures for tomorrow.
Our North Star is curing T1D, it always has been and continues to be, and it’s what drives every day as an organization. We have seen amazing breakthroughs—and it’s never been a more promising time in T1D research, we are on the cusp of breakthroughs that could get us to cures and to a world free from T1D.
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