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

Embracing Community in Times of Crisis

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

By Erin McShay

Sometimes in life, it takes something bad to happen for us to pause and appreciate how good things once were. I used to think of our lives as before and after our Sam was diagnosed with type 1 diabetes. Fast forward twelve years: he’s a senior in high school and the Corona virus is sweeping the country. The cacophony of chaos in the world is now pulling our attention into dark territory, channeling voices of fear and uncertainty. It’s almost as if time has slowed down to a crawling pace; giving us the chance to inhale and catch our second wind.

Community

Image source: Beyond Type 1

Always a Battle

Dealing with any chronic illness is an arduous job packed with hundreds of additional decisions to make a day. Ordering supplies, planning and packing become essential, life-saving chores. We take the burden in stride, but then become our harshest critic when thing go wrong. From personal experiences, I’ve learned that dwelling on our missteps serves no one. Remember that Billy Joel song? “We’re only human, we’re supposed to make mistakes.”

Just last year I made a doozy when we sent our two teenagers to Houston to visit family – I forgot to pack additional insulin pump cartridges for our son. Halfway into the trip, Sam called to say he ran out of cartridges. We’ve taken dozens of trips throughout the years, driven and flown across the country, camped in remote areas, and I’ve never forgotten anything. I told him to check again. We went over the list together; extra insulin, needles, blood sugar meter, back up meters, test strips, infusion sets, ketone strips but no cartridges. In a cupboard, I found the sandwich baggie of them that somehow got left behind. Anyone who’s ordered these types of supplies knows that you can’t just walk into a pharmacy to get more; in fact, you only have a few options and they all take twenty-four hours to ship. It didn’t matter how many times my son and husband told me it was okay: two thousand miles away, I spent the entire night consumed with guilt and worry, crying on my husband’s shoulder. Sam spent the night waking up every two hours to do blood sugar checks and give himself shots. He learned a hard lesson and so did I, but meanwhile we still had to find cartridges.

Community

Image source: Beyond Type 1

Somehow, on a hunch and a prayer I managed to look up a Facebook/Beyond Type 1 friend whom I’ve never met – and asked for help. It was a miracle really. I was a complete stranger to her, she could have said, ‘Sorry,’ but instead this angel went to extraordinary measures for us by reaching out to her community to find me the specific cartridges I needed for Sam’s pump. Her son had a different pump, but a friend of her’s (another angel) met Sam and my sister-in-law to give them an exceeding amount, beyond what he needed. I paid her back when I got her address, but at the time I don’t think they knew the depth of my gratitude. Not to mention the many thanks to my sister-in-law for driving Sam to another county, and our family in Houston for taking such good care of him.

When You Need Help, Ask

The chances are in your favor in the type 1 community with a million out-stretched hands, and general well-wishers ready and willing to offer not only advice, but whatever you need to help you get by.

I’m embarrassed to say I ran out of supplies once before the Houston trip. Not long after Sam was diagnosed, we depleted our infusion sets before our new order arrived. Luckily a neighbor, whom I met through a friend, had the same insulin pump as Sam, and gave us a few loaners. Another neighbor, a type 1 diabetes (T1D) dad who lived around the corner from us, went out of his way to offer advice and help us when Sam was first diagnosed. We were so scared in those early years and his helpful words still bring me comfort years later.

Get to Know Your Neighbors

Once, I bonded with a fellow writer at a conference, where I divulged that I had a son with type 1 diabetes. We became fast friends after she told me she had developed late adult onset T1D. One night, when my son’s pump stopped working, I called her in tears. My husband was out of town and I couldn’t get Sam’s pump to prime. She drove over to my house at ten at night – because these problems never happen in the middle of the day – and got the pump working again.

I wouldn’t have known these angels to receive help from them, had I not been as forthcoming about Sam’s disease. Nor would I have met them if I wasn’t on Facebook or involved with my community. You don’t realize these tiny miracles for what they are, until after the fact. If not for their help, I would probably be in a strait-jacket staring at a cement wall somewhere. Instead, I am now willing and able to pay it forward anyway I can.

Sibling

Image source: Beyond Type 1

As a writer and avid reader, I peruse tons of articles and social media sites a day, and if there is one thing I’ve learned, it’s to think before you say or post something. Negativity helps no one. I’ve found that depressing, bleak posts can linger in your psyche long after you’ve read them. Your views can really impact others. On the other hand, knowing how meaningful certain tweets can be, spreading love and encouragement, cannot only change a person’s day but has the power to alter their lives.

One kind word can mean the world to someone. Life is hard, especially with a chronic illness and there is no question diabetes stinks, but what a wonderful support system we have in place within the T1D community! People can be quite beautiful, and they have a wealth of knowledge on a much deeper level sometimes than our medical professionals.

Pay It Forward

I heard once that Jackie Kennedy Onassis said that motherhood was the most important job on earth and if you mess that up, whatever else you do doesn’t matter very much. My son and daughter are edging their way to adulthood now, and I hope that they’ve learned from my mistakes and watched how I forgive myself. I hope they’ve learned from the tiny mercies shown to us, and that when someone’s in need, you offer a helping hand or an encouraging word without blinking. I hope they stand up to injustice when they see it, and become advocates for the less fortunate, like those struggling to afford insulin.

As I reflect in this trying time, I see that through Sam’s diagnosis, we’ve learned and grown so much because of it. It’s made us who we are – all of us. And though this is a flawed, imperfect world, we truly have a family beyond our own. No amount of social distancing can diminish how interconnected we truly are. The silver lining through this all is that we have each other.

Source: diabetesdaily.com

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Source: diabetesdaily.com

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Source: diabetesdaily.com

Surviving with Diabetes in Venezuela

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Source: diabetesdaily.com

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Source: diabetesdaily.com

Shot Through the Heart: Dear Derek, Love Liz

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Source: diabetesdaily.com

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