A new survey shows that 44% of Americans that use insulin to treat their diabetes have struggled to afford their insulin in the last year.
The survey is also the first research we are aware of to probe the influence of the COVID-19 pandemic on insulin affordability.
Titled “Insulin Affordability in the US,” the survey was conducted recently by Diabetes Daily, a leading online diabetes resource. About 1,800 people responded, including patients with both Type 1 and Type 2 diabetes. That nearly half of Americans with diabetes struggle to afford insulin was just one of a series of distressing findings in a study intended to gauge the extent of the on-going insulin affordability crisis. Other jaw-dropping takeaways:
- 68% alter their insulin use habits to save money (including skipping/reducing doses)
- 48% neglect basic necessities (such as food, rent, utility bills) to be able to afford insulin
- 55% refrain from filling other prescription medications due to the high cost of insulin
The insulin affordability crisis had become a very hot topic in American politics by the beginning of 2020, and was frequently commented upon by major political figures and candidates. In March, riding a wave of legislative interest in the subject, five states passed laws capping insulin co-pays. That was the same month, however, that the coronavirus pandemic definitively arrived in the United States. Ever since, COVID-19 has dominated public health discourse.
Although the spotlight has turned elsewhere, it should be no surprise that, in an economy with unprecedented unemployment levels, the affordability crisis has only gotten worse. The Diabates Daily survey found that 18% of respondents reported that the pandemic had hindered their ability to afford insulin, a majority of whom lost some income or lost their job entirely.
The major insulin manufacturers have improved access to aid programs during the pandemic, but only a minority of respondents were able to take advantage of one of these programs. 47% were unaware that such discount programs existed; many others (about 25%) applied but were told that they did not qualify.
With insulin so difficult to afford, more than two-thirds claim to have employed strategies to conserve insulin. Such strategies vary: some are healthy (exercise more; eat fewer carbs) and others quite dangerous (reducing or skipping insulin doses).
Other results speak to the confusion and frustration that is seemingly inherent in the American healthcare system. About 80% claimed that at some point they had no idea how much their insulin would cost until they were actually at the pharmacy cash register. About 70% of those have gone home empty-handed, unable to pay for their insulin prescription on the spot.
All of these survey results are perhaps even more concerning when we recall that the Diabetes Daily community is not a perfectly representative sample of Americans with diabetes. Patients who are engaged enough with their condition to opt into an online community and research panel can probably be expected to be somewhat more engaged generally with diabetes news and strategies. This idea is bolstered by the fact that survey respondents had an average A1c of 7%, indicating a population with above-average glycemic control. The general population of people with diabetes may well be even less able to afford insulin.
Dr. Maria Muccioli, a biologist with Type 1 diabetes, analyzed and presented the survey results for Diabetes Daily. The report is well-worth reading in its entirety on the original website. Along with the data, the report also includes many quotes from the answers of survey respondents, some of which are extremely affecting:
“My son and I both use two types of insulin which makes copay costs high, so often I will fill his prescriptions and not my own. I reduce my insulin intake and suffer but it is what a mother does for her child.”
Last year, Dr. Muccioli engaged the same research panel on the question of how people tend to achieve (or fail to meet) glycemic targets. With over 17,000 responses, Diabetes Daily created one of our favorite recent examples of data-driven journalism: “Survey Reveals How to Get a Great A1c.”