A Hidden Price of Survival: One in Three Adults With Type 1 Diabetes Report Skipping Care Because of Cost
For people with type 1 diabetes, insulin is not an optional treatment or a long-term lifestyle aid—it is a biological necessity. Yet a new study suggests that the financial strain of staying alive with the disease is pushing many adults into dangerous compromises. In a survey of 130 adults with type 1 diabetes, nearly one-third reported at least one cost-related behavior such as using less medication, stretching supplies, delaying a prescription, or postponing diabetes care. More than three-quarters also reported elevated “financial toxicity,” a term borrowed from cancer research to describe the combined objective and emotional damage caused by medical expenses. The findings, published in the Journal of General Internal Medicine, expose a paradox at the center of the US healthcare system: even people with health insurance may be forced to choose between diabetes management and ordinary household expenses.
Type 1 diabetes occurs when the immune system destroys the pancreatic beta cells that produce insulin. Without replacement insulin, glucose accumulates in the bloodstream while the body begins breaking down fat for fuel, producing acidic compounds called ketones. If this process accelerates, it can lead to diabetic ketoacidosis, a potentially fatal emergency. Daily treatment also requires far more than insulin alone. Patients may depend on continuous glucose monitors, insulin pumps, infusion sets, syringes, glucose meters, test strips, ketone tests, glucagon, clinic visits, laboratory tests and emergency supplies. The costs can arrive as premiums, deductibles, copayments and uncovered purchases, while diabetes itself can consume time and productivity. The result is a financial burden that is both measurable in dollars and experienced psychologically as fear, uncertainty and loss of control.
The researchers analyzed baseline survey data from a larger randomized trial designed for adults with diabetes who had unmet social needs and suboptimal glucose control. The original project contacted 6,055 potential participants; 666 consented to take part and 600 completed the surveys. The analysis focused on the 130 participants who had type 1 diabetes. Their average age was 41.1 years, with ages ranging from 19 to 74, and they had lived with diabetes for an average of 24.1 years. The group’s mean hemoglobin A1c, a marker of average blood-glucose exposure over roughly two to three months, was 8.0 percent—above the usual target for many adults. Although 56.9 percent had private insurance and 54.6 percent reported annual incomes of at least $60,000, the sample was specifically drawn from people already experiencing social or financial challenges, so it does not represent every person with type 1 diabetes.
To measure financial toxicity, the investigators used the diabetes-adapted Comprehensive Score for Financial Toxicity, or COST-FACIT. The instrument asks about both practical hardship—whether a person can meet monthly expenses or afford treatment—and emotional distress, including worry about future medical costs. Scores range from greater financial wellbeing to more severe toxicity; a score of 26 or lower is considered indicative of elevated financial toxicity. By that standard, 78.5 percent of participants were experiencing elevated financial toxicity. People who reported cost-related nonadherence had a mean score of 17, compared with 21 among those who did not report it. Because lower scores indicate greater toxicity, the difference was statistically significant. In other words, the people most likely to alter or postpone their care were also reporting the greatest combination of financial pressure and anxiety.
Cost-related nonadherence was defined broadly but concretely. Participants were counted as affected if, during the previous year, they sometimes or often took less medication to make it last longer, skipped doses, delayed filling a prescription, decided not to fill one, delayed seeing a diabetes clinician, or did not see a clinician because of cost. Overall, 32.3 percent endorsed at least one of these behaviors. That figure is alarming because insulin reduction is not equivalent to skipping a minor preventive treatment: in people with type 1 diabetes, insufficient insulin can cause glucose levels and ketones to rise rapidly. Over time, inadequate treatment can also increase the risk of damage to blood vessels, nerves, kidneys, eyes and the cardiovascular system. The study did not find a statistically significant difference in average A1c between people who reported cost-related nonadherence and those who did not, but the authors caution that a single cross-sectional measurement may not capture the delayed or episodic effects of rationing.
The burden was not distributed evenly. Participants with annual incomes of $30,000 or less, those who were unemployed or outside the workforce, and those with government insurance reported significantly greater financial toxicity than their counterparts. Emotional strain tracked the financial strain as well: people with moderate or high diabetes distress, as measured by the Diabetes Distress Scale, had higher levels of financial toxicity, as did those with severe depression or anxiety on the four-item PHQ-4 screening tool. Yet these same social and emotional variables did not significantly distinguish who reported cost-related nonadherence. The only clear difference in the simple comparisons was age. Among participants aged 30 or younger, 44.4 percent reported cost-related nonadherence, compared with 25.9 percent of those older than 30.
The age finding points to a life stage that may be especially hazardous for people with type 1 diabetes. “Emerging adulthood,” generally defined here as ages 18 through 30, often involves leaving home, entering the workforce, moving between locations, managing bills independently and transitioning from parental insurance to another form of coverage. In the United States, many young adults also confront a major insurance transition around age 26, when eligibility for a parent’s plan typically ends. These changes can disrupt prescriptions, clinical relationships and access to diabetes technology even when income or insurance status looks similar on paper. In the study’s regression model, young adults were 2.25 times more likely than older participants to report cost-related nonadherence, although the result narrowly missed conventional statistical significance. The authors describe this as an important exploratory signal rather than proof of a definitive age effect.
The strongest statistical predictor was financial toxicity itself. In a multivariable logistic regression model that included financial toxicity, age category, employment and insurance type, participants with elevated financial toxicity had 7.29 times the odds of reporting cost-related nonadherence compared with those without elevated toxicity. The 95 percent confidence interval ranged from 1.96 to 27.16, reflecting both a substantial association and considerable uncertainty caused by the small sample. Private insurance was also associated with higher odds of cost-related nonadherence—2.88 times those of participants with government insurance. That result may seem counterintuitive because people with government coverage reported greater overall financial distress. The researchers suggest that private insurance can expose patients to high premiums, deductibles and copayments, while offering less protection against unexpected bills. Government insurance may be linked to lower income and greater general hardship, yet private coverage can still leave patients with more direct responsibility for each prescription or supply.
The study has important limitations. It was a cross-sectional analysis, meaning that the data capture one point in time and cannot establish that financial toxicity caused patients to ration care. All participants had insurance, had suboptimally controlled diabetes and had been recruited through one health system and an intervention study involving unmet social needs. The sample was modest, predominantly non-Hispanic White, and included relatively small Medicare and Medicaid groups that had to be combined. All information about costs and treatment behavior was self-reported, and people who experienced the most severe insulin insecurity may have been less likely to enter or remain in the study. Even so, the pattern is difficult to dismiss: financial toxicity affected nearly four in five participants, while almost one in three reported changing care because of cost. The findings suggest that clinicians cannot identify financial risk simply by asking whether a patient has insurance or by looking at income alone. Policies that lower insulin prices but leave pump supplies, glucose sensors, copayments and deductibles unaffordable may also fail to solve the problem. The researchers argue that future work should track financial distress and cost-coping behavior across the lifespan, with particular attention to young adults whose risks may be hidden by conventional social determinants of health. For people dependent on insulin every day, the price of treatment is not merely an economic statistic—it can become a direct threat to health and survival.
