Washington, D.C. – In anticipation of the Senate advancing a much-needed legislative package to address high drug prices, today more than 30 state and national organizations are urging Senate Majority Leader Chuck Schumer (D-N.Y.) to do more to further expand access to insulin for the millions of people living with diabetes in the United States – far too many of whom are forced to ration the life-saving medicine due to cost.
In a letter today, national and New York-based organizations including Public Citizen, T1International, New York State Council of Churches, Metro New York Health Care for All and more urged Sen. Schumer to advance vital policies to ensure access to insulin for everyone regardless of insurance status, as well as lower prices charged by manufacturers. The groups are also asking Sen. Schumer to stop anticompetitive tactics from drug corporations and pharmacy benefit managers (PBMs) that block access to lower-cost insulin products.
The letter applauded the American Rescue Plan and Inflation Reduction Act for exerting pressure on drug companies to lower insulin prices, but noted that further action is required to provide relief to the more than one million Americans who ration their insulin due to cost. “While the reforms advanced by the 117th Congress and concessions by insulin manufacturers can support insulin access for some patients with diabetes, they do not go far enough,” says the letter.
A recent study published in the Annals of Internal Medicine found that 1.3 million people in the United States ration insulin. Another recent survey showed as many as 1 in 4 people with type 1 diabetes ration insulin. People without insurance were most likely to ration insulin (29.2% ration insulin), followed by those with private insurance (18.8%). Rationing is disproportionately high for Black Americans, of whom 23.2% ration insulin, compared with 16% of Hispanic and White Americans.
The letter cites the tragedy of Alec Smith, who was 26 years old when he aged out of his parents’ health insurance, who, like many people without insurance, was forced to pay the full price for his insulin out of pocket. As a result, Alec rationed his insulin supply to wait to afford more, but within days, he died of ketoacidosis.
“Any insulin legislation that would not have prevented this tragedy fails the Alec Smith test,” said the letter, adding: “It is vital that affordable insulin access is provided to everyone, including those who do not have insurance, in addition to those who are privately insured.”
Since the 1990s, insulin manufacturers have raised prices many times over for U.S. patients, as much as 1100%, despite their products remaining largely unchanged, and low production costs.