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Insulin prices have created financial hardships for many people with diabetes. Kerem Yucel/AFP/Getty Images
  • The cost of insulin is causing financial hardship for millions of people in the United States with diabetes who take daily doses of the substance to stay alive.
  • California has launched a program for the state to manufacture its own insulin to help reduce the cost.
  • Right now, 20 states have laws on the books that cap some co-payments on insulin.
  • The White House as well as congressional leaders have proposed legislation to cap insulin costs at $35 per month, but those bills have stalled in the Senate.

Insulin is taken by more than 7 million people daily in the United States for diabetes. Many of those people have difficulties paying for the substance that is keeping them alive.

Organizations and states are making moves to ease the price burden with California perhaps taking the most dramatic step.

This month, Governor Gavin Newsom announced that because of skyrocketing price increases, California will become the first state to produce its own insulin, a move he hopes will reduce prices by as much as half.

“It’s simple. People should not go into debt to get life-saving medication,” Newsom said in a video posted on Twitter.

“Nothing epitomizes market failures more than the cost of insulin. Many Americans experience out-of-pocket costs anywhere from $300 to $500 per month for this life-saving drug. California is now taking matters into our own hands,” he said.

Newsom said $50 million will go to the development of low-cost insulin products, and another $50 million will be used to begin the construction of a California-based insulin manufacturing facility.

It’s unclear when the state’s insulin would be available or how much it would cost.

Nationwide, 20 states and the District of Columbia have addressed high insulin prices by passing legislation that caps the price of insulin in their locales.

In 2019, Colorado became the first state to cap insulin co-payments for people with private insurance.

George Huntley, the chief executive officer of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition, has type 1 diabetes. He has three other family members also living with the condition.

Huntley told Healthline that states are looking at how to address insulin prices but are somewhat limited by the scope of legislative reach. In addition, few states have the kind of budget California has for manufacturing and delivering medicine independently.

“Several states look at this issue each year and we expect the number to grow in 2023 and beyond,” said Huntley, who noted that a new area of state activity is in what is called “rebate pass-through legislation.”

“West Virginia was the first in the nation to require rebates to be passed through to insured patients at the point of sale,” said Huntley.

He added that the cost of insulin and all branded drugs in the United States is inflated by rebates charged by pharmacy benefit managers (PBMs).

These are the middle managers who negotiate drug prices on behalf of private corporations, health insurers, Medicare, private unions, and other clients.

“The top three PBMs control over 75 percent of the U.S. drug market. In the case of insulin, the rebate can exceed 80 percent of the list price meaning that a $300 vial of insulin only costs insurance plans around $60,” Huntley said.

There are other bills that focus on PBM transparency and fair-trade practices, Huntley said, but they don’t typically address immediate relief for patients.

Diana Isaacs, PharmD, an endocrine clinical pharmacy specialist and patient advocate at the Cleveland Clinic Diabetes Center, provides education and support for people with diabetes who are taking insulin.

However, Isaacs has grown increasingly concerned with the health and safety of the people she sees in her clinic because of the cost of the drug.

“The cost of insulin in this country is crazy compared to other countries,” said Isaacs. “They can pay up to $600 for a five-pack of insulin. It’s a serious problem.”

Isaacs also places much of the blame on the PBMs.

“Where does all the money go and how much of it stays with the PBMs?” Isaacs asks.

“There needs to be more transparency in the pricing structure. Even if insulin is marked down, the question is which part of the chain will get less and what impact will it have on the consumers?” she added.

Isaacs is aware that drug companies provide discounts on insulin, but she wishes the drug companies would do more to let consumers know about these discounts.

Isaacs said she sees people in her clinic every day who have resorted to rationing their insulin, a potentially dangerous activity because it means they are not taking the recommended doses.

“It’s unacceptable,” she said.

In March, in his State of the Union Address, President Joe Biden discussed capping insulin prices at $35 a month. He also mentioned lowering the prices of prescription medicines overall.

That same month, the Affordable Insulin Now Act was passed by the House by a margin of 232-193.

The legislation would cap insulin copays at $35 a month under the Medicare prescription drug benefit.

In a statement in April, the American Diabetes Association endorsed the bill.

“It’s time to pass a national co-pay cap to bring economic relief to millions of Americans forced to stretch beyond their means every month to pay for their insulin,” said organization officials.

However, Build Back Better legislation — which included a $35 copay cap — was stalled by Sen. Joe Manchin (D-West Virginia) in the Senate.

And the stand-alone $35 copay cap bill that passed the House didn’t have enough Republican support to secure 60 votes in the Senate.

Sen. Susan Collins (R-Maine) and Sen. Jeanette Shaheen (D-New Hampshire) last month unveiled a bipartisan bill that they say is the result of several months of work and compromise.

The legislation is designed to reduce the price of insulin and provide protections for people who use it.

Its future in Congress, however, is uncertain at this moment.