Through December 31, 2026, people living with diabetes—or supporting someone who does—are invited to share their experiences of the real costs of care, including insulin, supplies, other medications, and the impact of rationing.
Now in its tenth year, this global, patient-led survey continues to play a critical role in documenting what people are facing and strengthening advocacy efforts worldwide. This year’s theme, “We Count. We Lead.”, reflects both the importance of lived experience in shaping the data and the leadership of people with diabetes in driving this work forward.
The most comprehensive survey to date
The 2026 survey is the most expansive survey T1International has conducted to date. For the first time, it is open to people living with all types of diabetes. It includes a broader range of medications, such as GLP-1s, statins, and other commonly used supplies and medicines. It is also available in more languages than in previous years, allowing for broader global participation; this year it is available in English, Arabic, French, Portuguese, Russian, Spanish, Swahili, and Uzbek. These updates are designed to ensure that the data more accurately reflects the diverse experiences of people living with diabetes across different contexts and health systems.
As Brittany, a T1International Research Fellow, PhD student studying the history of insulin access, and person living with type 1 diabetes explains: “I want my research to be for people living with diabetes. This survey connects what people are experiencing right now to research, policy, and advocacy, and helps turn that into action.”
Turning lived experience into evidence
A central goal of the survey is to translate individual experiences into evidence that can be used to inform policy and advocacy.
The cost of diabetes care, and the consequences thereof, are often underrepresented or misunderstood in formal data systems. By systematically collecting this information, the survey helps fill a critical gap.
“Without clear data, it is difficult to show how widespread and urgent this crisis really is,” said Jamie, a healthcare researcher and T1International Research Fellow based in Massachusetts, who has been living with type 1 diabetes for over 30 years. “This survey turns individual experiences into evidence that policymakers and healthcare providers can act on.”
Importantly, this research is independent and patient-led. T1International does not accept funding from pharmaceutical companies, ensuring that the data reflects the experiences and priorities of people living with diabetes.
Supporting advocacy and policy change
The data collected through previous years’ surveys has been used by advocates and organizations around the world to support efforts aimed at improving access to insulin and diabetes care.
In Panama, T1International Research Fellow Pilar has worked with communities to build strong participation in the survey and apply the findings directly in advocacy. “We have used this data to advocate for change directly with decision-makers,” she said. “It reflects what people are actually experiencing and gives us something concrete to bring into those conversations.”
This kind of evidence can strengthen engagement with policymakers by clearly demonstrating the financial burden and access challenges people face.
Naming and measuring rationing
The survey also plays an important role in documenting insulin rationing and other cost-related challenges.
These experiences are often overlooked or described in ways that obscure the underlying issue of affordability. By directly asking about rationing, the survey helps ensure that these realities are both named and measured.
“We cannot solve a problem if we cannot say it exists,” said Jenny, a T1International Research Fellow and person living with type 1 diabetes in Washington State. “This survey helps us document rationing and the real costs people face in a way that cannot be dismissed.”
Making global experiences visible
Across different countries and health systems, people living with diabetes face a wide range of challenges related to cost and access. In some contexts, insulin may be unavailable or unaffordable; in others, gaps in coverage or high out-of-pocket costs create ongoing barriers.
Sobia, a T1International Research Fellow and person living with type 1 diabetes in Pakistan, emphasized the importance of making these experiences visible: “When there is no data, it becomes easy for the system to ignore us. This survey turns hidden struggles into evidence that communities can use to demand change.”
By bringing together responses from around the world, the survey helps highlight both shared challenges and important differences in access across settings.
Every response strengthens the data
Participation in the survey is critical to its impact. The goal for 2026 is to collect enough responses globally, for sufficient representation across countries and U.S. states to allow for meaningful analysis and reporting. Importantly, the survey is designed to capture a wide range of experiences—not only those of people who have faced the most severe challenges.
“Every story helps show policymakers what policies are actually delivering care and what policies are not,” said Chris, T1International’s Global Advocacy Manager, a person living with type 1 diabetes. “We need the full range of experiences to understand where systems are working—and where they are failing.”
Whether someone has experienced rationing, struggled with costs, or had consistent access to care, each response contributes to a more complete and accurate picture.
Take part and share
People living with diabetes, or in households supporting someone who does, are encouraged to take part in the survey and to share it within their networks.
It takes approximately 30 minutes to complete and is available in multiple languages. Taking and sharing the survey through social media, email, or direct outreach helps ensure that a broader range of experiences are included.
By participating, individuals contribute to a growing body of evidence that supports advocacy, informs policy discussions, and strengthens efforts to improve access to diabetes care worldwide.
We count. We lead. And together, we build the evidence needed for change.