NEW YORK (AP) – Two-year-old Bain Brandon is living with Type 1 diabetes, requiring insulin for survival. Despite having health insurance, the cost remains significant. Recently, Bain's family paid $194 for a one-month supply of insulin vials and a three-month stock of backup pens. His mother, Marlee Brandon, a 29-year-old, expresses concern about future affordability once Bain is no longer covered under their insurance. “One day, Bain will be an adult, and he won’t be able to be on our insurance anymore,” she stated, highlighting the challenges many families face concerning the high cost of diabetes management.
In response to the urgent need for affordable insulin, a bipartisan group of senators is advocating for the INSULIN Act, which aims to cap the cost of insulin at $35 per month for Americans with private insurance plans. This bill, introduced by Senators Jeanne Shaheen (D-Maine), Raphael Warnock (D-Ga.), Susan Collins (R-Maine), and John Kennedy (R-La.), also proposes a pilot program to increase affordable insulin access for uninsured individuals in ten states. Previously, a similar measure was part of the 2022 Inflation Reduction Act, which successfully capped insulin costs at $35 per month for Medicare beneficiaries.
Despite the support behind this legislation, it faces numerous challenges, including concerns over costs and other competing congressional priorities. Nonetheless, this presents a unique opportunity for bipartisan support on healthcare affordability, especially as rising healthcare expenses are a concern for voters across party lines.
In the United States, approximately 8.1 million individuals rely on insulin, including over 2 million diagnosed with Type 1 diabetes, who depend on regular access to insulin to survive. The cost of insulin varies significantly among patients, with some individuals with private insurance incurring minimal out-of-pocket expenses, while others may face monthly costs totaling hundreds of dollars — in addition to other diabetes-related expenses such as pumps and blood glucose monitors.
Following the 2022 legislation that lowered out-of-pocket insulin costs for Medicare participants, more than half of U.S. states have implemented their own co-pay caps for insulin, ranging from $25 to $100 per month, benefiting those with state-regulated insurance. Major insulin manufacturers, including Eli Lilly, Sanofi, and Novo Nordisk, have also made efforts to reduce insulin prices through various strategies, such as lowering list prices and capping out-of-pocket costs. However, a significant portion of patients remains uncovered, particularly those with self-insured plans or the uninsured.
Dr. Leslie Eiland, an endocrinologist at the University of Nebraska Medical Center, indicates that the burden often falls on patients to navigate these financial challenges independently. Sanofi’s head of general medicines for North America, Oliver Bogillot, asserts that “no one should struggle to afford their insulin,” while also promoting the company's savings program aimed at individuals without health insurance. Novo Nordisk has stated its commitment to improving access without raising list prices for insulin in the near future. However, there are ongoing concerns that pharmacy benefit managers and insurers create barriers that prevent patients from accessing necessary medications.
The INSULIN Act aims to provide relief for many but faces barriers, as previous attempts to pass similar measures have been unsuccessful; notably, efforts in 2022 to cap insulin costs for those with private insurance were thwarted in the Senate. Diabetes advocates and patients maintain hope for the passage of the new bill. Breana Glover, a 23-year-old who relocated to Texas for more affordable living conditions due to her diabetes expenses, describes her financial balancing act. She limits her carbohydrate intake to make her insulin supply last longer, and believes that a $35 cap would be a significant step towards making essential medicines more accessible and easing financial burdens.
Manny Hernandez, CEO of The Diabetes Link, notes that young adults, who often face barriers to obtaining comprehensive health insurance, would particularly benefit from the proposed legislation. While he sees potential for the bill, he fears that competing priorities may impede its progress. “There’s many distractions and there’s many important things going on,” he commented, but maintains a hopeful outlook for the future of insulin affordability.
