Corrected 10:40 a.m. | Advocates and some lawmakers are hoping to add provisions for the uninsured to a Senate bill that would cap insulin copays for some insured patients — and to do so before the chamber votes on the measure, possibly this month.

The critics endorse the $35-per-month cap on insulin copays for Medicare beneficiaries and the privately insured that’s in the Senate bill but think Congress has a chance to do more for the uninsured, who pay as much as $1,288 out of pocket for insulin products each year. The House passed a bill last week that has the same cap on copays. 

Both advocates and some lawmakers think legislation is needed to bring down the price of insulin from the manufacturer, calling the lack of such a provision a shortcoming in the bills, sponsored by Rep. Angie Craig, D-Minn., and Sen. Raphael Warnock, D-Ga. Some are even hoping they can bring down other drug prices.

“I think it is something that is going to save lives, no matter what passes, and hopefully we can make it so that it’s going to have the biggest impact for the most people,” said Shaina Kasper, policy manager for T1International, a nonprofit that advocates for people with Type 1 diabetes. 

Sens. Jeanne Shaheen, D-N.H., and Susan Collins, R-Maine, are among the lawmakers working on the effort as they draft legislation that Senate Majority Leader Charles E. Schumer said could be merged with Warnock’s bill. It’s unclear whether Senate Democrats can find 10 Republicans to support Warnock’s measure or any more ambitious bill. The House bill got 12 Republican votes.

Shaheen and Collins haven’t released text, but their bill is expected to be similar to one they released in 2019 that would eliminate the rebates drug manufacturers pay to insurers and pharmacy benefit managers if a drug company reduces insulin list prices to 2006 levels. The view is that those rebates are among the reasons insulin prices remain too high for many patients.

The uninsured are about 17 percent of roughly 10 million diabetics who need insulin. Their $1,288 in annual out-of-pocket insulin costs are more than twice the $613 cost for privately insured people, according to a Commonwealth Fund study released last year. The study found that 68 percent of uninsured diabetics pay the list price.

Neither the Craig bill nor Warnock’s would address list prices, leading to criticism from some advocates and insurance companies that it lets pharmaceutical companies off the hook for high prices. 

The Pharmaceutical Research and Manufacturers of America, or PhRMA, which did not respond to a request for comment, hasn’t taken a position on the bill. But the industry group has advocated for copay caps in the past. 

Drug companies say insurers and pharmacy benefit managers demand rebates in exchange for coverage by health plans, which manufacturers say forces them to raise list prices. 

Eliminating the rebates could in theory lead to a drop in list prices and make insulin more affordable for uninsured patients, experts say. But some advocates question whether drug companies would play along. They worry that the companies would hold prices where they are even if legislation removed the rebates.

“It’s very difficult for us to conceive that drug companies would voluntarily lower their prices,” said David Mitchell, president and founder of Patients for Affordable Drugs, which advocates for comprehensive changes to the way the U.S. pays for prescription drugs. “History tells us you can’t rely on pharma to do the right thing.” 

Supplying insulin, linking to inflation

Lawmakers have offered other options to help the uninsured that are also now being considered. Sens. Tina Smith, D-Minn., and Kevin Cramer, R-N.D., introduced a bill in 2019 that would offer a 90-day supply of insulin for uninsured or underinsured people, penalize drug companies for increasing prices faster than the rate of inflation, and shorten patent exclusivity for insulin and other biologics from 12 years to seven years. Smith is still advocating her proposal.

The Warnock and Craig bills would affect significant numbers of people. A Kaiser Family Foundation analysis found that among enrollees in the individual and small-group markets taking insulin, more than 25 percent paid more than an average of $35 per month out of pocket in 2018. 

High costs can lead to patients rationing the use of insulin, with about 26 percent of Type 1 diabetics doing so in 2017, according to a survey by T1International. Rationing insulin can lead to medical complications, including loss of a limb, or even death.

Insurers say they would like Congress to focus on other drug pricing changes, such as preventing drug prices from rising faster than the rate of inflation, or changing the payment structure in Medicare Part D so drugmakers contribute more in the catastrophic phase.

“We have to understand that this approach will not do anything about the cost of insulin,” said Ceci Connolly, president of the Alliance of Community Health Plans, referring to the caps in the Craig and Warnock bills. “And they potentially will move costs over other aspects of your health care. This is the old problem, the health care of squeezing on the balloon.”

The Congressional Budget Office estimated that the House bill would cost $20.4 billion over a decade. The reason is that premiums would rise in the individual marketplace, thus increasing subsidies the government pays to low-income people to help them afford insurance.

The bills would also potentially lead to higher premiums in employer-based coverage, which could lead to decreased wages and less tax revenue for the government.

Modeling premium rises

The Trump administration in 2020 launched a Medicare Part D model capping out-of-pocket insulin prices at $35. Premiums for these “enhanced” plans were nearly twice as high as the premium for plans that did not participate in the model, according to a Kaiser Family Foundation analysis published in November.

The House bill would offset those costs by extending a delay on a Trump administration Medicare prescription drug rebate rule that CBO estimated would drive up spending. Republicans have called that a budget “gimmick.” 

Democrats have cheered the insulin bill as they hope to boost members at risk of losing seats in the midterms, but they say they’re not taking their eyes off broader drug pricing reform. 

The insulin bills were plucked out of language in President Joe Biden’s social spending agenda that Congress was considering last year, until those efforts were tanked by Sen. Joe Manchin III, D-W.Va.  That package also included provisions that would allow Medicare to negotiate prices of some drugs. 

Those two provisions “are not mutually exclusive,” said Senate Finance Chair Ron Wyden, D-Ore.  

“We are working on the next iteration going forward on the domestic issues, and we’ve worked hard to get an agreement among Senate Democrats,” Wyden said.

Supporters of changes to drug prices say their effort won’t be futile even if the Senate doesn’t have 10 Republicans to back it. They hope to return to the issue in reconciliation later this year.

“Figuring out the policy to cover the uninsured is extremely well-spent time,” said Alex Lawson, executive director of Social Security Works. “You only get so many chances to work on something, and we need to change that part of the reconciliation bill that deals with insulin.” 

This report was corrected to properly identify the Alliance of Community Health Plans and the group’s president.

Ariel Cohen contributed to this report.