When most people think about getting screened for breast cancer they think about one test: The mammogram. And under the Affordable Care Act, women over 40 who are at average risk for breast cancer are supposed to be able to get that test once every year or two for free.

Yet, many women who go for what seem to be routine breast cancer screenings are told by their health care providers that they need an additional test such as an ultrasound or MRI without being told it can trigger high out-of-pocket costs.

For Brooklynite Cara Barrese, the nearly $800 bill she got following her most recent breast cancer evaluation at NYU Langone in August has her questioning whether to follow her doctor’s recommendation to get an ultrasound in addition to her annual mammogram. Barrese submitted her charges to the interactive database Gothamist has set up in collaboration with WNYC and ClearHealthCosts to help readers share and search health care prices as part of its project PriceCheckNYC.

“I can’t really afford to keep doing this every year if it’s not completely necessary,” says Barrese, 45, who has a family history of breast cancer. “But it’s such a shame I even have to have this conversation.”

Barrese says her doctor first told her to get an ultrasound in addition to a mammogram in 2016 when she was living in California because she felt a lump in her breast. It ended up being a cyst, which was benign, but she says her doctor recommended she continue to get an annual ultrasound in addition to a mammogram for at least the next few years. The fact that she has dense breasts also factored in. This common characteristic, which affects as many as half of women aged 40 to 74, is associated with a higher risk of breast cancer and can make mammograms harder to read, sometimes prompting radiologists to order additional tests.

In an effort to promote early detection of breast cancer, New York law requires health plans to provide no-cost coverage of tests that are ordered beyond the standard mammogram. But there are some exceptions.

Barrese is insured through her husband, who works for Reuters. Like many large companies, Reuters is self-insured, meaning the health insurance it offers employees is regulated by federal rather than state law.

“In [Barrese’s] particular case, the service in question was covered by the plan but not considered preventive,” explained a spokesperson for Cigna, which administers the Reuters health plan.

An NYU Langone spokesperson said the only reason Barrese hadn’t been charged when she got an ultrasound and a mammogram in 2017 was because it was inaccurately coded as preventive care during the billing process.

Of course, billing errors aren’t always so fortunate. And the fact that health care providers don’t always make it clear whether they’re providing a potentially costly diagnostic test or a free screening can leave patients confused as to whether their charges are legitimate.

Isabelle Jetté, 43, is covered by an EmblemHealth plan that is subject to state law, yet still received a bill for $522.37 after getting tested for breast cancer at Lenox Hill Hospital in July. When she went for her first breast cancer screening a couple of years ago, she says she wasn’t charged. But that time she only got a mammogram, whereas this time she was told she needed an ultrasound as well because she has dense breasts. Jetté sensed that she shouldn’t have to pay but wasn’t sure.

“Once the ultrasound question came up, no one specifically said to me, ‘You might get hit with a bill later,’” Jetté said. “It didn’t come up and I didn’t think to ask because it was presented to me as a preventive care measure.”

Jetté says she spent months trying to contest the bill with the hospital and insurer, seemingly without making headway. It wasn’t until Gothamist inquired about the bill in early February that EmblemHealth acknowledged there had been an error, at which point the insurer said it had already been resolved. Emblem said Jetté’s balance had been cleared in mid-January, although she hadn’t been informed.

The insurer blamed the hospital; the hospital blamed the insurer.

EmblemHealth claimed the error was a result of the fact that, “The service was billed for a diagnosis code rather than one as part of a routine exam.”

A spokesperson for Northwell Health, which owns Lenox Hill, said, “We did not code this wrong. This was an error on Emblem’s part. Emblem acknowledges this. The initial claim erroneously applied payment to a deductible which was remediated 1/16/2020.”

Meanwhile, Jetté, who moved to the U.S. from Canada in 2005, says the whole debacle just made her miss the health system back home. “I was surprised, saddened, and frustrated,” she said. “This is supposed to be basic preventive health care for women and here I am having to go fight this, having to spend the time and effort without knowing if I’m going to be successful.”

What You Can Do About It

Here are some action steps that can help you avoid unexpected bills for breast cancer screenings, developed in collaboration with ClearHealthCosts:

If you're heading into a mammogram, make sure you confirm with the doctor, hospital and insurer that this is a regular screening mammogram (the term “diagnostic” is a red flag that it’s not). Get this in writing if possible; if you need to argue on the back end, this will make it easier.

New York is one of several states where the law requires no-cost coverage of tests beyond the standard mammogram. If you live in one of these states, find out if you have a health plan that’s subject to state law. If you have employer sponsored health insurance, check if your plan is self-insured. If it is, there may be out-of-pocket costs associated with tests beyond a standard mammogram. This may also be the case if your plan is based in another state.

If you live in New York and you have a plan that’s subject to state law and you still got charged for breast cancer tests, you can file a complaint with the state Department of Financial Services saying the plan may not be in compliance (and let us know!).

If you are told you need a test beyond the standard mammogram, discuss the costs and benefits with your doctor. As the American Cancer Society notes, ultrasounds and MRIs can detect some cancers that a mammogram cannot. But they can also detect more irregularities that are benign and may lead to unnecessary testing and biopsies.

If you’re insured, it’s important to know that sometimes you can get a better price by shopping around or putting away your insurance card and asking for the cash rate for an ultrasound, MRI or other procedure. This is particularly true if you have a high-deductible plan or high co-insurance. Here’s a handbook on how to find health care prices, and here are some tips on paying cash. Also, an MRI or an ultrasound is likely to cost more at a hospital than at a standalone radiology center or women’s health center. Don’t be shy about shopping around

And finally, if you already got a shady bill and the insurance company tells you the hospital “coded it wrong," find out exactly what codes they are talking about and let us know what's up. This is one of the most impenetrable answers we hear: The insurer says, "They coded it wrong" and the health care provider says, "No, we didn't." This leaves the patient in the middle--and we’re trying to help people slash through the underbrush.

You can share information about what you have paid for recent medical services—and search for the cost of a given medical procedure at different health care providers in your area below. You can also email us your tips at [email protected] and read our other #PriceCheckNYC coverage here.

Support for this work was provided by the New York State Health Foundation (NYSHealth). The mission of NYSHealth is to expand health insurance coverage, increase access to high-quality health care services, and improve public and community health. The views presented here are those of the authors and not necessarily those of the New York State Health Foundation or its directors, officers, and staff.