News | May 2019

dQ&A® Diabetes Research Confirms that Insulin Rationing is Common in the USA – Even for People with Private Insurance

A staggering one in every six people with Type 2 diabetes in the dQ&A Patient Community have rationed insulin in the last six months in order to save money.

SAN FRANCISCO, California, May 30, 2019 — dQ&A Market Research Inc., the leader in diabetes patient research, released surprising results from a specially conducted study of insulin rationing in the diabetes community, showing that rationing for cost reasons is widespread.

Insulin pricing has been making headlines, with multiple sources noting the rise of prices over the last decade, and even reports of patients losing their lives through rationing of insulin for cost reasons. The Subcommittee on Oversight and Investigations of the House Committee on Energy and Commerce held congressional testimony in April from patient advocates and insulin manufacturers to gather data on the human costs and commercial drivers of the problem. During this testimony it was asserted anecdotally that insulin rationing is a widespread phenomenon. But is it?

dQ&A decided to obtain a definitive answer to this question, via a poll of 3,000 people with diabetes who take insulin. The question asked was “In the last six months, have you had to use less insulin than recommended by your doctor in order to save money and make your insulin last longer?”

The top level results from the study are sobering. Overall, 9% of those with Type 1 diabetes and 17% of those with Type 2 diabetes on insulin reported that they have self-rationed insulin because of cost. There were significant differences across different parts of the diabetes community (see table).

Percentage of respondents who have rationed insulin in the past 6 months in order to save money Type 1 Diabetes (n=1,698) Type 2 Diabetes, taking insulin (n=1,435)
Adults with Type 1 diabetes 10%
Parents of children with Type 1 diabetes 4%
Type 2 diabetes: long-acting insulin only 12%
Type 2 diabetes: premix insulin only 18%
Type 2 diabetes: long-acting and rapid-acting insulin 19%
Type 2 diabetes: insulin pump 16%

 

Respondents with Type 2 diabetes are significantly more likely than those with Type 1 diabetes to have rationed insulin in the past six months. Within Type 1 diabetes, adults are much more likely to ration than children. People with Type 2 diabetes taking basal insulin only are less likely to ration than other patients. We might hypothesize that patients using more insulin (MDI and pump) or lower income patients (more associated with premix) are more likely to feel cost pressure from their insulin regimen.

Unsurprisingly, dQ&A found that insulin rationing is inversely correlated with annual household income:

Annual household income Percentage of respondents who have rationed insulin in the past 6 months in order to save money
<$50,000/year (n=943) 21%
$50,000-$99,000/year (n=817) 13%
≥$100,000/year (n=672) 6%

 

One of the 2,384 dQ&A community members who left a written comment stated: “I do not have insurance right now and I knew I wouldn’t for a few months this year (I just started a new job). So I hoarded insulin as much as possible for the past year because otherwise it would be a struggle to just pay for it. For years I have had an insane amount of stress over whether or not I would run out of insulin or have to pay $450 for one single vial.” The full set of verbatim responses is available on request for dQ&A clients. They make troubling reading.

The dQ&A study also showed that:

  • A staggering 39% of respondents without health insurance have had to ration their insulin in the past six months.
  • Those on Medicare (20%) or Medicaid (16%) are more likely to ration than those on private insurance. But even one in eight (12%) of those on private insurance have rationed insulin – presumably because of high deductibles or co-pays.
  • The median out of pocket price for insulin is $40/month for those with private insurance, but $100 for the uninsured (and not eligible for Medicare and Medicaid).

“This large-scale study on insulin rationing was highly troubling,” said Richard Wood, dQ&A’s CEO. “We learned that the top decile of the uninsured pay over $500/month out of pocket for insulin alone – how can they afford it? But even 7% of those with private insurance pay over $250/month – in addition to the cost of any other drugs they may take. It’s clear that we need to change the way patients get access to this life-saving drug.”

More detail and additional results from the insulin rationing study are available here. Please contact dQ&A’s CEO Richard Wood at info@d-qa.com with any questions about this piece of research, or for inquiries into dQ&A’s industry-leading services.

dQ&A would like to express its sincere gratitude to all of the community members who participated in these research studies.

More Information For People Taking Insulin

For people having trouble affording insulin, especially those without insurance, there are some steps you can take that might help. Walmart offers affordable regular and NPH insulin (see https://www.walmart.com/ip/Novolin-ReliOn-Insulin-N/167672445). Insulin manufacturers offer patient assistance programs (see https://diatribe.org/how-to-get-diabetes-drugs-free). In recent months, insulin manufacturers have been announcing upgrades to their patient programs, such as Lilly (https://diatribe.org/lilly-sell-generic-humalog-half-price-13735-vial) and Sanofi (https://diatribe.org/sanofis-valyou-savings-program-sets-monthly-insulin-price-99).

About dQ&A

dQ&A is a social enterprise that’s committed to making life better for people with diabetes. We harness patient voices to help develop better products, services and policies, answer key business questions and improve health outcomes for people with diabetes. For ten years, we have focused exclusively on understanding what life is like for those with diabetes. We are trusted by patients because of our independence and commitment to them. And we are endorsed by industry leaders because we deliver high quality answers quickly and efficiently, through the use of our proprietary community. Our team has decades of experience in quantitative and qualitative research and a deep knowledge of diabetes. Many of our lives have been touched by diabetes, so we have a personal stake in our work.

 

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