More than three dozen healthcare and consumer advocacy groups on Monday applauded recently passed legislation to expand access to lifesaving insulin—but with more than a million people in the U.S. still forced to ration the diabetes treatment due to skyrocketing costs, the groups said U.S. Senate Majority Leader Chuck Schumer must take further action to ensure no more Americans risk their health, or even die, due to insulin prices.
With the Senate expected to advance a packages that will address high drug prices, groups including Public Citizen, Metro New York Health Care for All, and Patients for Affordable Drugs told the Democratic leader, who represents New York, that any legislation must pass "the Alec Smith test."
Alec Smith died at the age of 26, less than a month after he aged out of his parents' insurance plan. He made just enough money to not qualify for any insurance subsidies or patient assistance programs and so was forced to pay for insulin for his Type 1 diabetes out of pocket—$1,300 per month. Unable to afford the medication on top of housing costs, bills, and other essentials, Smith rationed his insulin supply and died of ketoacidosis in 2017.
"Any insulin legislation that would not have prevented this tragedy fails the Alec Smith test," wrote the groups. "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."
"Insulin legislation advanced through the Senate should put an end to perverse arrangements between drug corporations and middlemen that stifle potential savings from lower-priced insulins and put patients' lives at risk."
The groups said the legislation must include three key elements, including:
- Ensuring people with private insurance and those without insurance, who are most vulnerable to rationing, have access to the insulin they need;
- Stopping insulin manufacturers from charging excessive prices, which they have raised as much as 1100% since the 1990s despite the products remaining the same and companies benefiting from low production costs; and
- Preventing anti-competitive tactics from drug corporations and middlemen from interfering with patient access to lower-priced insulin products, including biosimilars.
"As pharmacy benefit managers (PBMs) demonstrated preferences for covering insulin products with higher list prices to secure larger rebates, insulin manufacturers responded by raising prices in lockstep," wrote the groups. "Patients who pay out of pocket for all or a portion of list prices that have been sharply increased by drug corporations suffer under this scheme."
"Insulin legislation advanced through the Senate should put an end to perverse arrangements between drug corporations and middlemen that stifle potential savings from lower-priced insulins and put patients' lives at risk," they added.
The organizations credited the Democratic Party with passing medication price reforms in the Inflation Reduction Act and the American Rescue Plan, guaranteeing access to insulin for Medicare recipients for no more than $35 per month and lifting a cap on Medicaid rebates.
A recent study published in the Annals of Internal Medicine, however, showed that 1.3 million people in the U.S. are still forced to ration insulin, including 29.2% of people without insurance and nearly 20% of those with private insurance.
"Hopefully soon, some of these patients will feel improvements in access and pricing due the policies that have been enacted," wrote the groups, "but many require further relief—the Senate's work is far from complete."