After years of political pressure, insulin prices are finally starting to drop, and some New Yorkers are paying less at pharmacies as a result.

Federal lawmakers and major insulin manufacturers have recently taken action to keep patients’ costs down. A federal cap on insulin prices for seniors on Medicare went into effect in January, limiting the amount they pay for a 30-day prescription to $35. Likewise, three major insulin manufacturers — Novo Nordisk, Eli Lilly and Sanofi — issued pledges this year to slash their price tags.

Yet not everyone with diabetes is benefiting from these new price caps. The amount a patient pays out of pocket can still depend on their insurance, the kind of insulin they take and whether they’re informed about the latest drug discount programs from pharmaceutical companies. And many New Yorkers continue to pay high prices for other diabetes drugs and devices that have gotten less attention.

“All of those little copays, all of those drug expenses, especially for Medicare patients, they add up,” said Dr. David Lam, an endocrinologist and medical director of Mount Sinai Health System’s Clinical Diabetes Institute. Still, Lam said he was encouraged by recent efforts to make insulin more affordable.

But gaps in public awareness can lead patients who qualify for savings to miss out. In May, New York Attorney General Letitia James announced settlements with Eli Lilly and Sanofi that require them to implement a $35 a month price cap for uninsured patients in New York for at least five years and to make information about their drug discount programs more conspicuous. Her office stated 464,000 New Yorkers rely on insulin every day.

Insulin helps regulate the body’s blood-sugar levels, and accessing it is a matter of life and death for Type 1 diabetics, whose bodies produce little or none of the hormone. Some Type 2 diabetics also use insulin as part of their treatment regimen, though clinicians say it is often a last resort.

Rising prices have contributed to insecurity around insulin access in the U.S. in recent years. Annual out-of-pocket spending on insulin among seniors on Medicare quadrupled between 2007 and 2020, according to the health policy nonprofit KFF.

What the Medicare price cap means for New Yorkers

Previously, many seniors had to pay hundreds of dollars out of pocket for their first insulin prescription of the year because they had yet to meet their health plan’s annual deductible, according to Danny Dang, owner of Esco, a pharmacy in Hell’s Kitchen. After that, he said, their copays typically dropped under $35.

Even though Medicare recipients are now paying less for their insulin, they aren’t always seeing their medication costs go down overall, Dang said. A patient’s annual deductible — the amount they have to pay out of pocket before their insurance kicks in — might now be applied to another high-cost drug.

People with Type 1 diabetes also often need multiple types of insulin, which ups their maximum monthly costs.

The cap also only applies to insulin products that are covered by a patient’s insurance. Like other health plans, individual Medicare Advantage plans frequently switch out which drugs are covered, depending on the prices negotiated by pharma middlemen. Often plans will swap one medication for another that’s deemed clinically similar.

But patients’ bodies sometimes react differently and a patient might seek permission from their doctor to remain on their existing medication, Lam said. That could mean some diabetes patients are left out when it comes to price controls.

What about New Yorkers who aren’t on Medicare?

For New Yorkers on Medicaid, the public health plan for people with low incomes, drug copays are already usually limited to just a few dollars. But for those who have commercial insurance or are uninsured, cost can be an issue.

The self-imposed price reductions from Novo Nordisk, Eli Lilly and Sanofi could potentially lower costs for insurers, although it’s unclear whether those savings will trickle down to patients.

To help patients benefit, Eli Lilly and Sanofi promised to cap the out-of-pocket cost of a monthly supply of insulin at $35 for people on commercial insurance, who were left out of the federal legislation targeting Medicare patients. Eli Lilly’s price cap took effect immediately, while Sanofi’s will go into effect in January 2024.

But even among patients on an Eli Lilly insulin, not everyone is aware of the price cap or clear on how to take advantage of it.

Kristina Olsson was diagnosed with Type 1 diabetes five years ago and as part of her regimen, she takes a fast-acting insulin with meals. She said she uses a Humalog-brand insulin, which is manufactured by Eli Lilly, but pays $35 for a single pen, which lasts her one week – meaning she spends $140 a month for that prescription alone.

Olsson, who has an Aetna plan through her employer, said she also uses a glucose monitor and has a prescription for a long-acting insulin and the anti-obesity drug Ozempic, which is in a different class of medications than insulin. All come with their own fees.

“I feel really grateful to have insurance and a good job,” Olsson said, but she added, “I'm paying a lot out of pocket a month. It's a pretty major line item in my budget. It's not cheap to be sick.”

Asked for information about how patients can access the $35 price cap on insulin prescriptions, Eli Lilly spokesperson Kristiane Bello said it is automatically applied at the checkout counter at about 85% of pharmacies. If a pharmacy tries to charge more than $35, she said patients can download a savings card online that all pharmacies should accept.

New Yorkers without insurance can also access drug discount programs, but New York Attorney General James has raised concerns that not everyone who qualifies is aware of them. Dang of the Hell’s Kitchen pharmacy said he often has to educate patients about the savings available, some of which are based on income.

As part of the settlement with James, insulin manufacturers agreed to hire third-party messaging companies to text pharmacists and remind them about the discounts available every time they process an insulin prescription for a patient paying in cash.

“Lifesaving medication should be affordable and accessible for all New Yorkers regardless of their income or insurance status,” James said in her announcement of the settlements.

Federal lawmakers are currently debating the best way to lower insulin prices more broadly, given the complexities of the health system.

Even if they succeed, there are many diabetes patients who won’t benefit. About 1.58 million New Yorkers – more than one in 10 – had diabetes as of 2020, according to the state Department of Health. But the overwhelming majority – between 90% and 95% – had Type 2 diabetes. And clinicians say insulin is not the go-to drug for those patients.

“Insulin is oftentimes where we end up at the very end,” said Stephanie Casper, a diabetes educator in the Bronx at the Institute for Family Health. “I try my hardest not to have to go to insulin. It's a burden to have to inject yourself with insulin every day.”

This story was updated to correct details on how patients can access to Eli Lilly's price cap.