On May 8, the Senate Special Committee on Aging held a hearing to discuss the skyrocketing cost of insulin, which has tripled in the past 15 years, and how to reduce costs through federal policy changes. In her opening statement, Senator Susan Collins (R-ME), who is also co-chair of the Senate Diabetes Caucus, stated that:
“The rising cost of insulin presents a barrier to care for a growing number of Americans with diabetes. We have heard stories from people across the country who have had to ration or skip doses altogether to make their insulin supply last longer. Some have sought medication from other countries, while others have turned to the black market. Still others have raised funds for their insulin using the Internet. These measures can result in major risks that can compromise health and even life.”
At the hearing, William Cefalu, MD, chief scientific, medical and mission officer of the American Diabetes Association, testified about the financial burden of insulin costs on patients and called on transparency across the supply chain to better understand the key contributors to this growing problem. Given the trend towards high-deductible plans, out-of-pocket costs for insulin are cost prohibitive and many individuals have had to take drastic measures to access this lifesaving drug. An example comes from a father of a type 1 diabetes patient, Paul Grant, who testified that he has used credit cards to afford his son’s insulin and has even borrowed from friends when the costs were prohibitive; he now purchases insulin from a pharmacy Canada.
Jeremy Greene, MD, PhD, a professor of medicine and the history of medicine at Johns Hopkins University, testified that the top barrier for medication adherence among his patients was the lack of affordability, in part because no generic exists even though insulin has been around for nearly 100 years. In a survey of people living with type 1 diabetes, more than half rationed insulin monthly, weekly, or daily due to cost. These individuals were more likely to come from low income households, have variable insurance coverage and to have more uncontrolled blood sugar levels. Greene further stated that more than one-quarter of life-threatening hospitalizations for diabetes in U.S. inner-city minority patients could be contributed to the lack of insulin affordability.
Addressing the rising cost of insulin is a top priority for the Endocrine Society, which has been working with the Congressional Diabetes Caucus for more than a year on potential solutions. The Caucus requested information from the Society on the impact of insulin pricing on patients with diabetes last year. The Society responded with several recommendations, including:
- Integrating formulary and cost information into electronic health records;
- Including insulin on preventive drug lists;
- Ensuring patients receive rebate benefits at point of sale; and
- Making patient assistance programs more accessible and less restrictive.
After receiving these recommendations, the Congressional Diabetes Caucus expanded its inquiry, requesting additional information from manufacturers, pharmacy benefit managers, and insurers. They also issued a request for information into whether value-based contracting could be applied to insulin. The Caucus is expected to release a white paper later this summer with its key findings.
In the days following the Senate hearing on insulin pricing, President Trump also announced his long-awaited plan to address high drug costs in a blueprint called, “American Patients First.” The proposal outlines policies to promote competition, get generics to the market faster, lower fees to “middlemen,” improve bargaining power in Medicare Part D drug plans, and block foreign countries from negotiating drug prices. While there is no timeline for implementation, initial reactions to the proposal were lukewarm given the lack of specificity and the likelihood of many of the outlined policies to be enacted.
The Endocrine Society will continue to work across the supply chain to mitigate the impact of rising drug costs on patients with endocrine conditions. We are submitting testimony to the record on rising insulin prices to the Senate Aging Committee and will provide feedback on President Trump’s drug pricing proposals. Additional information on the Society’s work can be found at endocrine.org/insulin.
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