As insulin costs soar, diabetics say a $35 cap on co-pays is not enough

WASHINGTON — Lacy Mason was a 21-year-old graduate student in Atlanta when she started rationing her insulin. As a Type 1 diabetic, she needs to take insulin every day for survival. But when the cost surged to $960 a month, Mason could no longer afford it.

She had aged out of Medicaid and her student health insurance didn’t help. So she counted the vials she had stored in her refrigerator and did the impossible math of trying to figure out how to make her supply last until graduation. She was a year short.

“Things started kind of getting desperate, honestly,” Mason said.

Mason is one of many diabetics who have rationed the life-saving medicine as the cost of the four most popular types of insulin tripled over the last decade, according to the American Diabetes Association. In the United States, 1 in 4 people with diabetes have resorted to rationing their insulin, according to the group.

Congress in response is considering legislation that would cap insulin co-pays at $35 for Americans with private health insurance. The House passed a bipartisan bill in March, and aides for lawmakers working on the issue say it is a placeholder for what will be a bipartisan Senate compromise. They hope the Senate can vote on it as a standalone bill this summer.

But the House bill does not address what happens to people without health insurance, or do anything to curb the spiraling cost of insulin, health analysts say. 

Mason, for example, worked weekends and connected with other diabetics in a “black market” for survival — she met people in parking lots to buy insulin, used expired insulin, and accepted leftover insulin from friends’ deceased relatives. 

She is now able to afford insulin through a combination of employer insurance, coupons from insulin manufacturers and her full-time work. 

But Mason wants the federal government to step in, so that she and all others whose lives depend on insulin do not have to worry if they can afford it in the future.

“The main thing that really bothers me with my story is it doesn’t really seem to matter what demographic or area you are in life, you can still fall into an underinsured or uninsured category and be left in a position where it is really hard to afford, and that is still happening,” Mason said.

Sen. Warnock bill has backing of American Diabetes Association

The issue has gained some momentum on Capitol Hill. Sen. Raphael Warnock, a Georgia Democrat, introduced a bill in February that would cap insulin co-pays at $35. It has the backing of the American Diabetes Association and 35 Democratic cosponsors. Warnock has promoted the issue with events in Georgia and Washington, D.C.

His proposal could provide financial relief to at least 1 out of 5 insulin users with various kinds of private health insurance, according to an analysis of insurance claims data from the Peterson Center on Healthcare and Kaiser Family Foundation. 

But the legislation would offer no additional relief for the uninsured, according to health policy analysts.

The House of Representatives passed its version of the bill, which Rep. Angie Craig, a Minnesota Democrat, introduced, at the end of March with unanimous support from Democrats and backing from 12 Republicans. 

Now it sits in the gridlocked Senate. Senate Majority Leader Chuck Schumer has said he will try to advance the issue and placed the House bill on the Senate calendar at the end of May. 

The procedural move does not guarantee that the Senate will ever vote on it but allows legislation to come to the Senate floor without going through the full committee process first. 

Warnock sent Schumer a letter June 6, saying he was “deeply disappointed” the legislation had not received a vote and thanking him for this procedural step forward.

“The time is now to finally act on this critical issue, and we can’t afford to wait any longer,” Warnock wrote. 

Bipartisan bill working its way through U.S. Senate

Separately, Sens. Jeanne Shaheen, a New Hampshire Democrat, and Susan Collins, a Maine Republican, are co-chairs of the Senate Diabetes Caucus and the lead negotiators for a bipartisan effort in the Senate. 

“Reducing the surging costs of insulin is a critical area where Democrats and Republicans find common ground. I’m glad to partner with Senator Collins on this effort, and we will continue working to finalize our proposal to bring it to the Senate floor for a vote,” Shaheen said in an email to States Newsroom.

Shaheen and Collins asked Senate colleagues to provide input in April as they worked to finalize a bill. Their outline includes the $35 copay limit. They have also said they want to encourage insulin manufacturers to reduce list prices by limiting rebates for insurance plans and pharmacy benefit managers. 

They are getting estimates from the Congressional Budget Office about how much their proposals would cost, according to staff.

“Congress has a crucial opportunity to address the high costs of prescription medication and help working families — we must seize it,” Shaheen said.

Legislation faces hurdles, including 2022 election, manufacturers and health insurance companies

But the legislation faces major hurdles, as lawmakers volley issues ahead of the 2022 election — one that will be hotly contested for Warnock, who won in a special election in 2020 and is up again this year, facing Republican Herschel Walker. Republicans may be hesitant to give Warnock a win.

And the proposals can get thorny as some insulin manufacturers and patient advocates call for different approaches.    

An earlier and separate attempt to address prescription drug prices as part of the Build Back Better Act cleared the House but stalled in the Senate. 

Leaders of the three major companies that manufacture insulin — Eli Lilly, Sanofi and Novo Nordisk — have shifted the blame away from themselves on high insulin prices. They told lawmakers in congressional hearings in 2019 that they could not lower the prices of insulin because of the way health insurance companies and pharmacy benefit managers operate.

Entrenched rebate systems reduce the price health plans pay for insulin by 70 percent or more sometimes, but those savings are not always shared directly with patients. 

“To truly address insulin affordability, you have to address the rebate system,” said Brian Newell, a spokesperson for the Pharmaceutical Research and Manufacturers of America, or PhRMA, the major drug industry research and lobbying firm.

The Federal Trade Commission, the agency that enforces consumer protection laws, is also looking into the rebates and fees that go to pharmacy benefit managers, and how those are driving up costs for insulin and other drugs. The FTC was expected to discuss the issue at its next meeting. 

A spokesperson for Lilly said in an email that the company has not endorsed the current legislation that would cap co-pays, but that Lilly would like to see some solutions to limit out-of-pocket costs or pass on rebates directly. A Sanofi spokesperson said the company supports efforts to cap monthly co-pays, requiring rebates to be shared or requiring insurers to cover insulin without applying a deductible.

Warnock said he is working to break through the partisan gridlock to advance the legislation in the Senate.

“I’ve been able to build a coalition to support this legislation that stretches from grassroots activists to the White House,” Warnock said in an email. “I am working with my Senate colleagues on a bipartisan solution that will not only cap insulin costs, but will also address the high list prices of insulin.”

High prices remain for the uninsured

A co-pay cap helps the insured. But lawmakers have yet to settle on how to address the rising insulin prices for all that need it. 

“The cap on insulin out-of-pocket costs does not change how much society pays for insulin or how much health plans pay,” said Krutika Amin, who tracks health care costs for the Kaiser Family Foundation.

Insulin prices have increased far beyond inflation rates — more so in the United States than the rest of the world.  Americans pay 10 times more on average for insulin than people in other developed countries, according to an analysis from the federal government.

Monthly co-payments on insulin or other diabetes supplies are already capped in 20 states: Alabama, Colorado, Connecticut, Delaware, Illinois, Kentucky, Maine, Minnesota, New Hampshire, New Mexico, New York, Oklahoma, Oregon, Rhode Island, Texas, Utah, Virginia, Vermont, Washington and West Virginia.

In nine of those states, the cap is $35 or lower. But depending on the specifics of the state’s laws, the patient’s insurance and their individual medical needs, the caps do not always help all patients get the particular kinds of insulin that work best for them.

Laura Marston, the co-founder of the advocacy group The Insulin Initiative, says a co-pay limit alone falls short of what is needed. Her group is pushing for a cap on the list price, how much insulin companies can charge. She wants a federal limit to reduce the price for everyone, including the uninsured. 

“If the uninsured are not included, they are left to pay the full list price or essentially die trying,” Marston said.

Marston, a lawyer and Type 1 diabetic, saw firsthand how challenging insulin payments can be when a former employer died and their office closed, suddenly leaving her without health insurance or the ability to afford her insulin.

“In the blink of an eye I went from being fine to not having insurance and not having any way to get insulin,” Marston said. “That is the tightrope we walk on when the price of a vial of insulin is allowed to be $300.”