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:
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:
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.