Sens. Smith, Cramer Lead Bipartisan Group of Senators in Introducing “Insulin Affordability Data Collection Act”

WASHINGTON, D.C. [11/14/19]—In association with World Diabetes Day, U.S. Senators Tina Smith (D-Minn.) and Kevin Cramer (R-N.D.) today introduced bipartisan legislation—along with Sens. Tammy Baldwin (D-Wis.), Dick Durbin (D-Ill.), Cindy Hyde-Smith (R-Miss.) and Roger Wicker (R-Miss.)—to create a national study to more fully understand the scope of the insulin affordability crisis in America.

Earlier this year, Sens. Smith and Cramer introduced bold, bipartisan legislation to bring down the cost of insulin and hold manufactures accountable for excessive increases in the price of the life-sustaining medicine. Now, the senators and a bipartisan group of their Senate colleagues are working to expand the scope of studies on insulin affordability and its impacts on rationing. 

The bipartisan Insulin Affordability Data Collection Act would direct the U.S. Department of Health and Human Services (HHS) to study rates of diabetic ketoacidosis—which took the life of Minnesotan Alec Smith two years ago after the high cost of insulin forced him to ration his doses. It would also direct HHS investigators to look into how high insulin prices make it more difficult for people with diabetes to adhere to their insulin prescriptions, and to calculate the amount of money Federal health programs could save if they didn’t have to treat Americans who need additional care because they are unable to afford their proper doses.

“We know that thousands of people are rationing their insulin and that some are paying with their lives like Alec Smith because we’re hearing tragic stories firsthand, and seeing Facebook groups pop up dedicated to helping Americans access insulin. We need to do more than just gathering piecemeal information and have the federal government fully behind addressing this crisis,” said Sen. Smith, a member of the Senate Health Committee. “Our bipartisan bill is about continuing to elevate this issue, fully understanding the scope of what we’re dealing with, and then developing solutions to help the Americans struggling to afford their life-saving insulin.”

“50,000 North Dakotans need insulin to live, yet we struggle to understand why it is becoming so expensive and what we can do to change that. We need answers,” said Sen. Cramer. “This legislation is an investment in fixing the insulin affordability crisis.”

“I’ve heard from countless Wisconsinites who are struggling to afford the prescriptions they need—including insulin,” said Sen. Baldwin. “In recent years, the price of insulin has skyrocketed and it’s clear these steep price increases are resulting in patients lacking access to this life-saving medication. Our bipartisan reform is a first step towards understanding this serious issue and delivering solutions that will bring down the price of insulin, which patients and families need.”

“As the pharmaceutical industry drives insulin prices through the roof, the millions of Americans with diabetes are suffering because of it. Our bipartisan bill will help us understand how Big Pharma’s insulin pricing scandal is impacting patients so we can find more solutions for people struggling to afford this life-saving drug,” Sen. Durbin said.

“A more comprehensive understanding of insulin pricing should help policymakers better understand why the market is out of whack. The growing need for insulin in Mississippi and elsewhere makes the affordability question very important,” Sen. Hyde-Smith said.

“Too many Mississippians are burdened by the high cost of their insulin,” Sen. Wicker said. “This bipartisan legislation would help policymakers understand the real cost of this lifesaving treatment as we consider solutions to improve access and affordability.”

The Insulin Affordability Data Collection Act would require the HHS Secretary through the Assistant Secretary for Planning and Evaluation (ASPE) to conduct a study that examines the impact of the affordability of insulin on individuals who are insulin-dependent. Specifically, this study will investigate the impact of the affordability of insulin products on: 

  • Adherence to insulin prescriptions;
  • Rates of diabetic ketoacidosis;
  • Downstream impacts of insulin adherence (e.g. rates of dialysis treatment and end-stage renal disease);
  • Spending by Medicare, Medicaid, and other Federal health programs on acute care episodes that could be averted by adhering to an insulin prescription; and
  • Other factors, as appropriate.

This bill would further separate instances of insulin affordability by an individual’s insurance status. Under this legislation, ASPE would be required to submit this report to Congress within two years of enactment. The bill is supported by the American Diabetes Association (ADA), the Juvenile Diabetes Research Foundation (JDRF), and T1International.

Sen. Smith has made bringing down the high cost of prescription drugs a top priority, and Minnesotan Nicole Smith-Holt has long been a partner in that fight. Smith-Holt tragically lost her son, Alec, when the high price of insulin forced him to ration his supply. Last year, Sen. Smith invited Smith-Holt to take part in a hearing in Washington, D.C. titled “America Speaks Out: The Urgent Need to Tackle Health Care Costs and Prescription Drug Prices” because Sen. Smith believes it’s important for her colleagues to hear directly from Minnesotans. In May of this year, a number of measures championed by Sen. Smith were included in a bipartisan package to address the rising cost of health care released by the Senate Health Committee—on which she serves—including her efforts to help bring lower-cost insulin and generic drugs to market. Both her bipartisan Protecting Access to Biosimilars Act and the Ensuring Innovation Act were added to the package, which was passed out of the Committee. In June, Sens. Smith and Cramer Also in June, Sen. Smith introduced comprehensive legislation to hold large pharmaceutical companies accountable for high prices and bring down costs for Americans. Her Affordable Medications Act is a comprehensive set of reforms that would promote transparency by requiring pharmaceutical companies to disclose just how much money is going toward research and development, as well as marketing and pay for executives. The bill would also end the restriction that prevents the federal Medicare program from using its buying power to negotiate lower drug prices for its beneficiaries, and curb drug company monopoly practices that keep prices high and prevent less expensive generics from coming to the market.

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