After years of political pressure, insulin prices are finally starting to come down, and as a result, some New Yorkers are paying less at the pharmacy.

Federal lawmakers and major insulin manufacturers have recently taken steps to keep patient costs down. A federal price cap on insulin for seniors on Medicare went into effect in January, capping the amount they pay for a 30-day prescription to $35. Similarly, three major insulin makers Novo Nordisk, Eli Lilly and Sanofi have pledged to drastically cut their prices this year.

Yet not all diabetics are benefiting from these new price limits. The amount a patient pays out of pocket may still depend on whether he insures him, the type of insulin he takes, and whether he is aware of 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 received less attention.

All those small fees, all those drug expenses, especially for Medicare patients, add up, said Dr. David Lam, an endocrinologist and medical director of Mount Sinai Health Systems Clinical Diabetes Institute. However, Lam said he’s been encouraged by recent efforts to make insulin more affordable.

But gaps in public awareness can cause patients who are entitled to savings to miss out. In May, New York Attorney General Letitia James announced deals with Eli Lilly and Sanofi that require them to implement a $35-a-month cap on uninsured patients in New York for at least five years and make the information about their drug discount programs. Her office said 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 no of the hormone. Some type 2 diabetics also use insulin as part of their treatment regimen, though doctors say it’s often a last resort.

Rising prices have contributed to insecurity about insulin access in the United States in recent years. Annual insulin spending among seniors on Medicare quadrupled between 2007 and 2020, according to 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 hadn’t yet met their health plans’ annual deductible, according to Danny Dang, owner of Esco, a drugstore in Hells Kitchen. Subsequently, he said, their copays typically fell below $35.

Even though Medicare recipients now pay less for their insulin, they don’t always see drug costs decrease overall, Dang said. A patient’s annual deductible, the amount he must pay out of pocket before his insurance takes effect, could now apply to another high-cost drug.

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

The limit also applies only to insulin products covered by patient insurance. Like other health plans, individual Medicare Advantage plans often change covered drugs, depending on prices negotiated by drug intermediaries. Often plans will substitute one drug for another that is deemed clinically similar.

But patients’ bodies sometimes react differently, and a patient might seek permission from their doctor to continue taking their existing medications, Lam said. This could mean that some diabetic patients are left out when it comes to price controls.

What about New Yorkers who don’t have Medicare?

For New Yorkers on Medicaid, the public health plan for low-income people, drug fees are already capped at a few dollars. But for those who have commercial insurance or are uninsured, cost can be an issue.

Self-imposed price cuts from Novo Nordisk, Eli Lilly and Sanofi could potentially reduce costs for insurers, though it’s unclear whether those savings will trickle down to patients.

To help patients benefit, Eli Lilly and Sanofi have promised to cap the out-of-pocket cost of a monthly supply of insulin to $35 for people with commercial insurance, which has been excluded from federal legislation intended for Medicare patients. Eli Lilly’s price cap took effect immediately, while Sanofis will take effect in January 2024.

But even among patients taking an Eli Lilly insulin, not everyone is aware of the price cap or clear how to take advantage of it. The cap is also only available at participating pharmacies.

Kristina Olsson was diagnosed with type 1 diabetes five years ago and takes fast-acting insulin with meals as part of her regimen. She said she uses Humalog-brand insulin, made by Eli Lilly, but she pays $35 for a single pen, which lasts her a week, meaning she spends $140 a month on just 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 drug class from insulin. All come with their own taxes.

I’m really thankful that I have insurance and a good job, Olsson said, but added, I pay a lot out of pocket a month. It’s a pretty big line item in my budget. It’s not cheap to be sick.

Asked about how patients can access the $35 price cap on insulin prescriptions, Eli Lilly spokeswoman Kristiane Bello pointed to a website where patients can download a savings card to present at the pharmacy counter. She said about 85% of pharmacies will comply with the card, but she declined to say which ones.

Even uninsured New Yorkers can access drug rebate programs, but New York Attorney General James has expressed concern that not everyone who qualifies is aware of them. Dang of Hells Kitchen Pharmacy said she often has to educate patients about available savings, some of which are income-based.

As part of the deal with James, the insulin makers have agreed to hire third-party messaging companies to message pharmacists and remind them of available discounts each time they fill an insulin prescription for a cash-paying patient.

Life-saving drugs should be affordable and accessible to all New Yorkers, regardless of their income or insurance status, James said in his announcement of the deals.

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

Even if they succeed, there are many diabetic patients who will not benefit from them. About 1.58 million New Yorkers, more than one in 10, had diabetes in 2020, according to the state Department of Health. But the vast majority between 90% and 95% had type 2 diabetes. And doctors say insulin is not the go-to drug for those patients.

Insulin is often where we end up in the end, said Stephanie Casper, a Bronx diabetes educator at the Institute for Family Health. I do my best not to have to go on insulin. It’s a burden having to inject insulin every day.

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