American Diabetes Association® Releases White Paper by Insulin Access and Affordability Working Group at Hearing of Senate Special Committee on Aging


Michelle Kirkwood

May 8, 2018

Working Group included experts in medical, economic and health policy fields who examined the insulin supply chain and the processes and factors that impact the costs of and access to insulin 

Today, the American Diabetes Association’s (ADA’s) Chief Scientific, Medical and Mission Officer William T. Cefalu, MD, testified before the U.S. Senate Special Committee on Aging (Committee) at 10:00 a.m. ET. Dr. Cefalu addressed the Committee and answered questions about the rising costs of insulin, which impacts millions of Americans with diabetes who rely on this life-sustaining medication. He also shared the findings of the ADA’s “Insulin Access and Affordability Working Group: Conclusions and Recommendations” white paper, which was simultaneously published online today in the journal Diabetes Care.

More than 30 million Americans have diabetes, and approximately 7.5 million of them rely on life-sustaining insulin, including more than 1.5 million individuals with type 1 diabetes. Insulin is a matter of life and death; there is no alternative medication that can be substituted for insulin. Of great concern to the ADA is the recent surge in insulin prices—the average price of insulin nearly tripled between 2002 and 2013¹. The rising cost of and access to insulin ultimately impacts everyone and especially people with diabetes and their families, health care providers, insurers and employers. Current estimates project that diabetes is the most expensive chronic illness in the U.S. at a total of more than $327 billion per year, including $15 billion for insulin².

The ADA’s Make Insulin Affordable strategic initiative was launched in November 2016, and includes a petition that, to-date, has been signed by more than 311,000 individuals. The petition calls for all entities in the supply chain to provide transparency, and to ensure that all people who use insulin have affordable access to the medication. The petition also asks Congress to hold hearings to identify the reasons for the dramatic increases in insulin prices. Since the campaign launch, our diabetes advocates have held more than 400 Congressional meetings, and we have collected more than 800 patient, caregiver and provider stories regarding access to affordable insulin.

The ADA’s Board of Directors convened the Insulin Access and Affordability Working Group (Working Group) in the spring of 2017 to ascertain the full scope of the insulin affordability problem, to advise the ADA on the execution of strategies and to provide high-level direction to the ADA related to this issue. The Working Group is comprised of ADA leaders, medical specialists in endocrinology and epidemiology, and experts in health policy and economics from leading institutions and organizations across the U.S. The Working Group held meetings throughout 2017 and early 2018 with stakeholders at all levels of the supply chain to learn how each entity affects the out-of-pocket cost of insulin for the consumer and compiled existing public information about insulin prices and patient cost-sharing. More than 20 stakeholders who were representatives of pharmaceutical manufacturers, wholesalers, pharmacy benefit managers (PBMs), pharmacies, pharmacists, distributors, health plans, employers, and people with diabetes and caregivers shared their perspective with the Working Group. Each stakeholder interviewed responded to a set of standard questions focused on learning the role each entity plays in the supply chain, the issues each entity faces, and their recommendations for change.

Based upon the information gathered, the Working Group confirmed there is a lack of transparency throughout the insulin supply chain, making it difficult to fully understand each entity’s profits or their ability to influence and impact the final cost. It was noted that the insulin supply chain mirrors that of many other prescription medications, however, it was not possible to pinpoint any specific reasons for the surge in prices. The Working Group’s white paper addressed other crucial factors in the rising costs of insulin, including the regulatory framework for developing biosimilar insulins, prescribing patterns of providers, and the role of formulary lists in determining which medications, including insulin, are covered and at what out-of-pocket cost to the individual. 

Some of the recommendations proposed by the Working Group focus on providers and pharmacists communicating openly with patients regarding insulin costs, as well as the suggestion that providers prescribe the lowest price insulin required to effectively and safely achieve treatment goals. Additional suggestions by the Working Group highlight steps toward developing viable, long-term solutions to improve insulin access and affordability, and focus on health plans, research, PBMs, advocacy, and more.

“The cost of insulin is a complex and multifaceted issue, yet it is imperative that we continue to advocate for affordable access to this lifesaving medication for people with diabetes and focus on approaches and recommendations to help lower costs,” said ADA’s Chief Scientific, Medical & Mission Officer William T. Cefalu, MD. “Many people with diabetes are experiencing increased burdens due to the high out-of-pocket costs for insulin, which can negatively impact their lives and health. Identifying factors that determine the costs of insulin is the first step toward ensuring that people with diabetes have affordable access to this critical, life-sustaining medication. We are grateful to Senators Collins and Casey and the Special Committee on Aging for the opportunity to address this severe problem.”

The Working Group’s detailed white paper is featured in the article, “Insulin Access and Affordability Working Group: Conclusions and Recommendations,” published online at at  10:00 a.m. ET, on May 8, 2018 and in the June print issue of Diabetes Care.

About Diabetes Care®

Diabetes Care is a monthly journal of the American Diabetes Association dedicated to increasing knowledge, stimulating research, and promoting better health care for people with diabetes. To achieve these goals, the journal publishes original articles on human studies in the following categories: clinical care, education and nutrition; epidemiology, health services; and psychosocial research; emerging treatments and technologies; and pathophysiology and complications. The journal also publishes the Association’s recommendations and statements, clinically relevant review articles, editorials and commentaries. Topics covered are of interest to clinically oriented physicians, researchers, epidemiologists, psychologists, diabetes educators and other health professionals. Diabetes Care is the highest-ranked, peer-reviewed journal in the field of diabetes treatment and prevention.

About the American Diabetes Association

Nearly half of American adults have diabetes or prediabetes; more than 30 million adults and children have diabetes; and every 21 seconds, another individual is diagnosed with diabetes in the U.S. Founded in 1940, the American Diabetes Association (ADA) is the nation’s leading voluntary health organization whose mission is to prevent and cure diabetes, and to improve the lives of all people affected by diabetes. The ADA drives discovery by funding research to treat, manage and prevent all types of diabetes, as well as to search for cures; raises voice to the urgency of the diabetes epidemic; and works to safeguard policies and programs that protect people with diabetes. In addition, the ADA supports people living with diabetes, those at risk of developing diabetes, and the health care professionals who serve them through information and programs that can improve health outcomes and quality of life. For more information, please call the ADA at 1-800-DIABETES (1-800-342-2383) or visit Information from both of these sources is available in English and Spanish. Find us on Facebook (American Diabetes Association), Twitter (@AmDiabetesAssn) and Instagram (@AmDiabetesAssn). 

1 Hua X, Carvalho N, Tew M, Huang ES, Herman WH, Clarke P. Expenditures and prices of antihyperglycemic medications in the United States: 2002-2013. JAMA 2016;315: 1400–1402.

2 Economic Costs of Diabetes in the U.S. in 2017. Diabetes Care 2018;41:917–928.