Diabetes Community Survey Shows Drug Costs Still Ranks Highest Access Concern


Editor’s Note: Beyond Type 1 believes that high quality, modern insulin must be available to people with diabetes regardless of employment or insurance status, across all demographics, without barriers and at an affordable and predictable price point. If you or a loved one are struggling to afford or access insulin, you can build custom plans based on your personal circumstances through our tool, GetInsulin.org.

In early 2021,  Beyond Type 1’s advocacy division surveyed almost two thousand people living with or caring for someone with diabetes to determine key healthcare access issues faced by members of the Beyond Type 1 community throughout 2020. While other surveys on access have been conducted within the diabetes community, it was important to Beyond Type 1 to hear directly from the community they serve on issues faced, both throughout the COVID-19 pandemic and generally.

The survey follows ongoing advocacy work from Beyond Type 1 addressing the rising cost of insulin and other healthcare access issues such as implicit bias and equitable technology access, Medicare and Medicaid access, drug pricing and rebate reform, and more.

The survey ran in English and Spanish, was anonymous, and included survey respondents both within and outside of the United States. The survey was run independently by Beyond Type 1 and specific methodology can be found at the bottom of this article.

Key Learnings

Access + Cost

A majority of respondents (56%) ranked access to affordable insulin and diabetes drugs as their most important access issue. This aligns with data reported from studies such as the 2018 Yale report showing that one in four insulin-dependent people ration insulin due to cost, while also nodding toward the high cost of other diabetes medications like SGLT2 inhibitors and GLP-1 receptor agonists.

Almost half of respondents (40 percent) ranked access to diabetes supplies as the second most important access issue (8.5 percent of respondents ranked access to supplies as their most important access issue), while nearly the same amount of respondents (36 percent) ranked access to affordable healthcare coverage as their third most important access issue. Just 6 percent of respondents ranked access to new therapies that cure, treat, or prevent diabetes as their top access issue (75 percent of respondents ranked it as their least important access issue).

Health Insurance 

In the United States, 66.4 percent of respondents indicated they used employer-based health insurance to access healthcare in 2020. This is slightly higher than the 2019 U.S. population health insurance coverage data provided by the Current Population Survey Annual and Social Economic Supplement (CPS ASEC) and the American Community Survey (ACS), which calculated 55.4 percent.

Of the remaining third of respondents:

  • 8.1 percent received 2020 health coverage through Medicaid
  • 7.7 percent through Healthcare.gov / State Marketplace
  • 5.8 percent through Medicare
  • 5 percent reported no insurance coverage in 2020,
  • and 4.6 percent indicated ‘other’, which could include either a combination of coverage options, catastrophic care plans, COBRA and/or other temporary plans

While two-thirds of respondents reporting employer-based health insurance could be seen as a positive—that access to healthcare is the norm rather than the exception—40.4 percent of respondents indicated they incur a deductible of more than $1500 per person for their insurance coverage. This indicates that over a third of respondents are covered by High-Deductible Healthcare Plans (HDHPs), a rising trend across American healthcare that, for those with chronic health needs, creates excessive financial burden.

HDHPs create a scenario in which a person often must pay full price for medications or supplies until the healthcare plan’s deductible is met, creating a significant out-of-pocket cost at the start of every calendar year. For people living with chronic conditions such as diabetes, this economic burden can create avoidance of healthcare treatment, unaffordability of life-essential medications, and inability to purchase or utilize supplies needed.

Out of Pocket Costs

Survey respondents reported excessive out of pocket expenses not only for medications, but for diabetes supplies (such as insulin pump or glucose monitoring supplies).

  • 55 percent of respondents stated they have paid more than $100 out-of-pocket in any month for any diabetes medication
  • 64 percent of respondents paid more than $100 out-of-pocket in any month for diabetes supplies

Global Issues 

While the American healthcare system often creates undue financial burden for people living with diabetes, access abroad remains a major issue as well.

  • 55 percent of respondents could not get supplies
  • 18.3 percent of respondents had run out of medications or rationed due to cost
  • 23 percent of respondents made a decision between bills and diabetes supplies

The Impact of COVID-19

Of course, the COVID-19 pandemic exacerbated healthcare issues across the globe. For those living with diabetes or caring for individuals with diabetes,

  • 30.7 percent of respondents did not see a healthcare professional or have lab work completed in 2020 due to fear of contracting COVID-19
  • 38.4 percent of respondents experienced mental health issues related to the COVID-19 pandemic
  • 7.8 percent of respondents experienced employment discrimination due to COVID-19 in relation to diabetes during 2020

The bottom line

Living with diabetes creates a major financial burden for many—the added medical cost of living with  diabetes in the United States has been estimated at an average of $9,071 annually per individual—and the financial decisions that many are forced into making create short- and long-term consequences. Among survey respondents:

  • 21.6 percent ran out of medications or rationed due to cost
  • 15.0 percent skipped specialist visits or other healthcare to pay for diabetes care or supplies
  • 16.8 percent did not see a medical professional due to cost
  • 14.1 percent “borrowed” insulin or other diabetes supplies because of cost
  • 20.1 percent utilized a copay card for any diabetes medication
  • 22.8 percent made a decision between bills and diabetes supplies

These survey responses will continue to shape ongoing work being done by Beyond Type 1 ensuring everyone impacted by diabetes—type 1, type 2 and beyond—has a right to the best care possible for their unique situation. To learn more about Beyond Type 1’s advocacy work and to lend your voice to legislative actions, click here.

Details on Methodology

The Beyond Type 1 Diabetes Experiences Survey was created on Formsite, a secure platform for processing and hosting sensitive survey data in both English and Spanish versions. Both versions were identical in ranking questions, response offers, and language. The survey was logic mapped to offer additional questions for those who identified as individuals living outside the United States.

Questions were created by employees of Beyond Type 1 living with diabetes, with careful attention paid to plain, inclusive language in demographic self-identification inquiries.

The Beyond Type 1 Diabetes Experiences Survey was shared online through different avenues from mid-January to mid-February in English and mid-January to mid-March in Spanish through the Beyond Type 1 website (English and Spanish), the Beyond Type 2 website (English and Spanish), a targeted email from Beyond Type 1, and both organic and paid posts on Twitter, Facebook and Instagram. There was no paper version available to print out; it was online responses only.

Respondents self-identified as people living with diabetes or caring for an individual living with diabetes.

The survey was completely voluntary; no one was paid to provide responses. All responses were mandatory for a survey to be deemed complete. If an individual did not click submit at the bottom of the survey, no results were recorded.  A statement before the beginning explained that the survey results were anonymized, and only aggregate data and key learnings would be shared publicly.

1924 individuals fully completed the survey, with 1850 identifying as living in the United States.

Noted Limitations 

The sample size of 1924 individuals is a small section of the global diabetes population, although larger than many similar surveys in the space. Additionally, respondents cannot be assumed as indicative of all people living with diabetes—93—of respondents lived with or were caretakers of someone with type 1 diabetes, 91 percent lived in the United States, 85 percent were white, and 83 percent were female. Just 3.2 percent were 65+. All respondents had access to the internet and were either already following or in some way connected to Beyond Type 1 channels.

WRITTEN BY Beyond Type 1 Team, POSTED 07/12/21, UPDATED 12/04/22

This piece was authored collaboratively by the Beyond Type 1 Editorial Team.