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. The report included questions focusing on the price of insulin and supplies, rationing statistics, healthcare coverage, the impact of COVID-19, and much more. The results of this survey shine a light on the out-of-pocket costs that people with type 1 diabetes face worldwide. Our 2020 survey featured a total of 1,066 respondents from 64 countries.

While the data is new, the story remains the same: dangerous and potentially fatal insulin rationing remains a worldwide reality, a trend shown in our survey year after year.

A staggering 25% of all respondents reported having rationed insulin at least once in the previous year. For individuals with type 1 diabetes, a lack of insulin can quickly lead to diabetic ketoacidosis and death. Also in a continuing trend, residents from the United States reported some of the highest out-of-pocket costs in the world, averaging $490 per month.

Elizabeth Pfiester, T1International Founder and Executive Director, shared her thoughts about the latest results: ‘‘Time after time, our survey confirms that diabetes-related costs are too high and that rationing insulin is far too common among those with type 1 diabetes. Worldwide, one out of every four respondents reported having underused their insulin in the past year due to cost. This is outrageous. Insulin was discovered 100 years ago, and yet people are still dying because they cannot access it.”

Just as disturbing were findings related to the impact of COVID-19 on those with type 1 diabetes. 63.2% of participants reported the disruption of their insulin supplies and 25.3% reported an increase of insulin prices related to the COVID-19 pandemic. “The pandemic has made it difficult to access the doctors I need to get prescriptions,” responded a resident in the United States. “I have insulin insecurity, and I frequently [choose] to not eat so I won't waste insulin on food. I worry me not having insulin would be a financial burden on my family and friends.” Even in the wealthiest nations on earth, disruptions related to the global pandemic are having an outsized impact on those with chronic conditions.

“I am very fortunate now. It was not always the case. We have spent all of our savings over the years on diabetes supplies,” reported a patient in Canada, the country where insulin was discovered in 1921 and the patent sold for a single dollar. Fredrick Banting, who would win the Nobel Prize for his discovery, was famously quoted, “insulin does not belong to me, it belongs to the world.”

When you shift to the data on the other side of the world, much of the story remains the same. “Yes, In Ghana here we are really suffering,” an individual quoted for our study. “The cost of medication is not easy and the government has not made the mind to come to the help of [us] the Diabetics.” In addition to frequent insulin rationing, T1International’s data showed that 69% of respondents from Ghana reported rationing test strips at least once per week.

For too long, data surrounding type 1 diabetes and the global insulin crisis and supply has been extremely limited. The picture of what has been a shameful reality is getting clearer and clearer: that millions of people who depend on insulin to survive are being robbed of their health and wellbeing by a healthcare system that favors profits over people. Despite statements and half-hearted PR stunts from the insulin manufacturers, the trends remain the same. Costs for people living with diabetes are going up, and the amount of insulin being used is going down.

T1International encourages everyone to read our publication and use the findings from this survey to fuel your advocacy. Those who need insulin most can’t afford to lose any more time, they’ve already waited 100 years.

More data, information, and comments from the 2020 survey can be found at: t1international.com/access-survey.