Diabetes Community Survey Shows Drug Costs Still Ranks Highest Access Concern

This content originally appeared on Beyond Type 1. Republished with permission.

By Beyond Type 1 Team

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

Health Insurance

In the United States, 66.4% 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%.

Of the remaining third of respondents:

  • 8.1% received 2020 health coverage through Medicaid
  • 7.7% through Healthcare.gov / State Marketplace
  • 5.8% through Medicare
  • 5% reported no insurance coverage in 2020,
  • and 4.6% 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% 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% of respondents stated they have paid more than $100 out-of-pocket in any month for any diabetes medication
  • 64% of respondents paid more than $100 out-of-pocket in any month for diabetes supplies

Global Issues

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

  • 55% of respondents could not get supplies
  • 18.3% of respondents had run out of medications or rationed due to cost
  • 23% 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% of respondents did not see a healthcare professional or have lab work completed in 2020 due to fear of contracting COVID-19
  • 38.4% of respondents experienced mental health issues related to the COVID-19 pandemic
  • 7.8% 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% ran out of medications or rationed due to cost
  • 15.0% skipped specialist visits or other healthcare to pay for diabetes care or supplies
  • 16.8% did not see a medical professional due to cost
  • 14.1% “borrowed” insulin or other diabetes supplies because of cost
  • 20.1% utilized a copay card for any diabetes medication
  • 22.8% 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% lived in the United States, 85% were white, and 83% were female. Just 3.2% were 65+. All respondents had access to the internet and were either already following or in some way connected to Beyond Type 1 channels.

Source: diabetesdaily.com

Are CGM Users Aware of Time in Range?

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Rebecca Gowen

dQ&A surveyed 2,540 CGM users with type 1 or type 2 diabetes to find out how aware they are of their own time in range: 87% of respondents knew how much time they spend in range daily

Time in range is the percentage of time that a person spends in their target blood glucose range (70-180 mg/dl). This measurement of diabetes management along with time below range and time above range helps people assess patterns and trends throughout the day to inform daily treatment decisions in a way that A1C cannot. It is also becoming more well-known and accepted in the world of diabetes as a good indicator of diabetes management.

dQ&A, a market research company, wanted to measure people’s awareness of their own time in range. They surveyed 2,540 people with type 1 or type 2 diabetes who use continuous glucose monitors (CGM). The following question was posed to respondents: “Do you know roughly what percentage of your day (on average) you typically spend with your blood sugar between 70-180 mg/dl?” For those people who answered yes, dQ&A then asked them what percentage of time they typically spend in the target range (70-180 mg/dl) each day. It is important to note that the majority of people included in this survey were White, had type 1 diabetes, and were using an insulin pump.

Important survey results included:

  • 87% of all respondents knew roughly how much time they spent in range each day, while 13% did not. These results were generally consistent across several factors including people with type 1 and type 2 diabetes, adults and children, and people with type 2 diabetes who were or were not taking insulin.
  • 29% of respondents reported that they typically spend 71-80% of their day in range. 30% of the people surveyed reported a time in range above 80% while 41% of respondents reported a time in range lower than 71%.
  • People with type 2 diabetes who are not taking insulin are significantly more likely to report spending 91-100% of their day in range (36%), compared to adults with type 1 diabetes or people with type 2 diabetes on insulin (9% and 11%, respectively).
  • Time in range was higher in older age groups. The group with the lowest self-reported time in range was people under the age of 18: only 44% of people 18 years or younger spent more than 70% of the day in range, compared to 56% of people ages 18-44, 62% of people ages 45-65, and 68% of people over the age of 65.

Our takeaways from this data:

  • Among people who use CGM, the majority acknowledge time in range as a measurement of their glucose control. However, we believe more people can be educated on how to understand and act on their time in range data.
  • The majority of people with type 1 and type 2 diabetes report achieving the  time in range target of more than 70% and this was particularly true for those in older age groups.
  • An important focus should be placed on helping young people find strategies to improve their time in range and incorporate it into their self-management.

To learn more about time in range click here.

Source: diabetesdaily.com

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