Donate
T1International’s 2022 Out-of-Pocket Cost Survey: An Easy Way to Advocate

T1International’s 2022 Out-of-Pocket Cost Survey: An Easy Way to Advocate

Facebook Google LinkedIn Twitter

Why is diabetes access research important?
T1International’s advocacy approach includes building the evidence-base to support real change for people living with diabetes through patient-led research. While research can sometimes seem dry or far-removed from the challenges and needs of actual people, it doesn’t have to be, especially if patients are able to use research to tell their stories. T1International believes that patient-led diabetes research is fundamental to achieving #insulin4all because:

  • It can highlight inequities and identify needs around the world
  • It makes the problem easier to understand for decision-makers
  • It can build the evidence base that is necessary to rally unified action around an issue
  • It helps us establish a baseline so that we can measure progress towards our goal

T1International’s Out-of-Pocket Cost Survey for people with diabetes
In 2016, T1International launched its first Out-of-Pocket Cost Survey, the largest patient-led survey of its kind examining the true costs to individuals with type 1 diabetes (T1D) of insulin and other essential diabetes supplies. In 2020, the survey showed that 1 out of every 4 respondents worldwide reported having underused their insulin within the last year due to high cost. You can read the full publication and learn about all of the findings here.

In May of this year, our 4th Out-of-Pocket Cost Survey went live. It will run until the end of September. The data it collects is VITAL to helping us tell our collective story and showing decision-makers the full scope of the problem. The survey will paint a picture of where the greatest needs are when it comes to insulin and diabetes supplies access. It may also help justify policy solutions, but only if we get enough people from many different countries around the world to take it.

For anyone who has carried out research, you know that getting people to complete surveys is no easy task! That’s why we need your help to promote this survey to your networks. In 2020, 1,066 people from 64 countries took part in the survey. This year we have set a goal of having more participants from more countries than ever before. We can only reach this goal with your help!

We are asking you to take action in support of this effort:

  1. Take the Survey! The survey is for individuals over the age of 18 with type 1 diabetes. A parent or caregiver can take the survey for those under the age of 18. Caregivers can also take the survey for spouses or partners. The survey is anonymous and is completely optional.
  2. Share the Survey! Send the link (https://t1international.com/survey2022) with your network, letting them know that this anonymous survey is an easy way (takes about 20 minutes) for people with type 1 diabetes and their caregivers to show their support for #insulin4all. Be sure to let people know that the survey is completely optional.

How will we use this research?
We recently selected our 2022 - 2025 Global Advocacy Priority, that the average combined monthly out-of-pocket cost of insulin and blood glucose testing supplies represents no more than 5% of median income in any given country for people with diabetes by 2025. We will begin by focusing on countries represented in our Global Advocacy Network to provide a model that can be used for other countries too.

To accomplish this, we will first carry out a background assessment, which will include data from the Out-of-Pocket Cost Survey. Our aim is to establish a baseline understanding of the average costs related to median income of insulin and test strips. This will result in an accessible brief report and give us a starting point that we can use to measure progress towards our goal. Full results from the Out-of-Pocket Cost Survey will be analyzed in depth and will result in a scientific research publication that we will promote through our networks in multiple formats.

Accessibility Goals for the Future
We have been working to make the survey more accessible through improving its format and the methods through which people can complete it. We recognize there is much more that we could do to improve accessibility if we can increase survey funding and expand our capacity. In 2024, we hope to be able to offer the survey in more languages and more formats, including paper versions, and employ an on-the-ground research team.

Patients and the general public are so often excluded from the research process and unable to access research results. Our hope, by conducting patient-led and patient-centered research, is to give patients the power to communicate their stories to decision-makers in the language of research. T1International will continue to work to help patients reclaim their data and thus transform the current, exclusive research framework into one that is accessible and effective to support the changes that patients know are critical. 

Related posts:

The Realities of Diabetes Burnout

The Realities of Diabetes Burnout

For too long, understanding the precise relationship between burnout and diabetes has been a mystery, and more data must be uncovered. Working with T1International, we are sharing a new survey on the impacts and implications of burnout for those with type 1 diabetes. Read more

Press Release: Human Rights Watch Calls Out Unaffordable Insulin as Human Rights Crisis

Press Release: Human Rights Watch Calls Out Unaffordable Insulin as Human Rights Crisis

A report from Human Rights Watch powerfully illustrates the human impact of sky-high insulin prices through the testimony of 18 insulin-dependent people living with diabetes in the United States.

Read more

T1International Publishes Survey on Type 1 Diabetes, COVID, and Insulin Rationing

T1International Publishes Survey on Type 1 Diabetes, COVID, and Insulin Rationing

In September 2021, T1International’s latest out-of-pocket cost survey was published in the Journal of Diabetes Research and Clinical Practice. Conducted every two years, this study is the most comprehensive patient-led out-of-pocket cost survey for people living with type 1 diabetes. Read more

T1International Launches 100 Years: From Gift to Greed Campaign

T1International Launches 100 Years: From Gift to Greed Campaign

On Monday, May 17th - 100 years after Banting, Best and Macleod begin their first experiment trying to extract insulin in Toronto - T1International and its advocates around the world launch their year-long campaign. 100 Years: From Gift to Greed will tell the story of insulin’s discovery and how it went from being a gift to the world to a profit machine for the pharmaceutical industry. The campaign will be led by a combination of social media education and a variety of actions. Read more