Insulin Cost Caps in the United States Are Not Delivering Intended Results

Study Exposes Limitations of State-Level Insulin Cost Caps in the United States and Calls for Targeted Policy Reform

A first-of-its-kind study conducted by researchers at the University of Colorado has revealed significant shortcomings in state-level insulin out-of-pocket cost caps in the U.S., a measure widely hailed as a solution to insulin affordability. Despite their promise, these caps have not significantly increased insulin access for individuals with Type 1 diabetes, or those managing Type 2 diabetes with insulin, raising questions about the efficacy of current policies.

According to the American Diabetes Association, in 2023, there were approximately 8.4 million insulin users in the United States. The U.S., with its commercial health insurance model, faces insulin prices that are far higher than those in the rest of the world. This has severely impacted families and young people who rely on insulin. The out-of-pocket cost caps were a hard-won victory after decades of advocacy aimed at easing this financial burden, but the new study suggests that these caps may not be delivering the relief that was intended.

The study, published in Health Affairs, examined the impact of state-mandated insulin cost caps across various states, payers, and over time. Researchers found that these caps did not lead to a meaningful rise in insulin use among people needing it. This outcome is partly because most individuals with commercial insurance—who are primarily affected by these caps—were already paying out-of-pocket costs below the capped amounts prior to the caps being enforced.

Dr Kelly E. Anderson, PhD, MPP, the study’s lead author and an assistant professor at the University of Colorado Skaggs School of Pharmacy and Pharmaceutical Sciences, emphasised the study’s implications. “Our findings suggest that while these caps are well-intentioned, they are not effectively reaching those who need them the most.” Anderson stated.

The study’s results come at a crucial time, as the current administration considers expanding commercial out-of-pocket caps nationwide. However, the research suggests that a more targeted approach may be necessary to address the persistent issue of insulin affordability. Advocates argue that focusing solely on commercial enrollees may overlook the populations most at risk of underusing insulin due to cost constraints.

Furthermore, the study highlights the need for broader policy measures that go beyond insulin. Only 20-30 percent of individuals with Type 2 diabetes use insulin, and many rely on other expensive medications, such as GLP-1s and SGLT-2s, to manage their condition. Expanding cost cap policies to include these medications could significantly increase the number of patients who benefit from such measures.

For diabetes advocates, this study serves as a critical piece of evidence in the ongoing fight for more effective policies. The findings underscore the need to push for reforms that specifically target the uninsured and those in high-deductible plans—populations most likely to underuse insulin due to financial barriers. Additionally, there is a growing call to expand policy frameworks to cover a broader range of diabetes management tools, ensuring that more patients can access the medications they need without financial hardship.

Advocacy Action: As the conversation around insulin affordability continues, diabetes advocates within the United States and worldwide are urged to use these findings to lobby for comprehensive policy solutions. By pushing for targeted reforms, advocates can help ensure that no one with diabetes has to compromise their health due to the cost of their medications.