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T1International Out-of-Pocket Expense Survey

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Background

In 2016, T1International carried out our first global out of pocket cost survey for people with type 1 diabetes. We asked respondents to answer questions regarding insulin utilization, insulin delivery methods, and out-of-pocket costs for insulin, test strips and other diabetes management tools. 

In 2018, we improved the survey, learning more the situation for people with type 1 diabetes around the world, and growing our response rate. The majority of the data can be viewed in the visualizations and graphics at the above links.

In 2020, our third iteration of the survey, we added additional questions about the impact of COVID-19, and focused on US rationing and healthcare coverage results as they compare to those of other countries. Results were published as a research paper in the Journal of Diabetes Research and Clinical Practice. 

In 2022, we continued investigating out of pocket expenses, rationing of insulin and diabetes testing supplies, and more. Our results compared Canada, Germany, India, Panama, Sweden, the United Kingdom, and the United States. Results were published in Frontiers in Clinical Diabetes and Healthcare in 2024.

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Why does this data matter?

This study highlights the significant financial burden that people with T1D face in the absence of full healthcare coverage and associated rationing of insulin and other diabetes supplies. Even in this sample of participants from mostly high-income countries, a significant number rationed insulin and glucose testing supplies.

We know that patients are spending an unsustainable amount for the medicine and supplies they need to simply stay alive. That's why we're Fighting for Five. Our community is advocating globally for a world where the cost of insulin and glucose testing supplies represents no more than 5% of a person’s income in any given country.

Utilising data from T1International’s 2022 survey, we calculated estimated monthly costs for insulin and glucose testing supplies, separately and combined. We used the World Bank’s 2020 data on net national income per capita as an approximation for each country’s average monthly income. Then we calculated the percentage of approximate monthly income for both insulin and glucose testing supplies in each country.

  • In Zimbabwe, people can spend around 87% of their income on insulin and glucose testing supplies
  • In India, people can spend approximately 81% of their income on insulin and glucose testing supplies
  • In Pakistan, people with diabetes face costs of 47% of their income to buy insulin and glucose testing supplies
  • In Panama, some people must spend 26% of their income on insulin and glucose testing supplies