Story updated in January 2020.

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In 2012, Leslie Becker threw caution to the wind and scheduled ankle surgery without knowing the cost.

She was 23, fresh out of college and covered by her employer’s high-deductible insurance plan. She did her best to anticipate how much she’d have to pay for the procedure. When she asked about the cost during a pre-surgery visit, a nurse told her it could be anywhere from $5,000 to $25,000.

“I pressed her for more information but didn’t really get any,” says Becker, now 31 and working as an art director in Milwaukee. “Just that they wouldn’t know the final cost until all the paperwork shook out.”

Becker was lucky: Her insurance picked up the balance of the $28,000 bill after she met her $2,500 deductible. But she was still confused after the bill was settled. “The cost of surgery didn’t seem to be based on anything logical,” she says. Why would such seemingly uncomplicated surgery for a common ankle injury be billed at the highest end of the range the nurse gave her?

Becker’s story highlights how patients can be thrust into a stressful new position as consumers — required to shoulder more of their health expenses than ever before, and without a clear idea of what their care will cost.

The days of handing over a modest co-pay and letting the insurance company pick up the rest of the tab are a distant memory for a growing number of patients with high-deductible health plans. For these consumers, it’s up to the individual to keep an eagle eye on the cost of office visits and lab tests, and to sift through billing statements and find time for lengthy phone calls with insurance providers and hospital billing departments.

“In the past, oftentimes consumers knew very little about their health insurance,” says Robin Gelburd, founding president of FAIR Health. “The consumer was almost in the chorus line in the back, while the employer and the insurer were stars of the play. Now consumers [are] the stars of their own insurance play, and there’s no script. They’ve been asked to ad lib really important decisions.”

The lack of price transparency in healthcare can leave patients feeling powerless, at the mercy of a frustratingly opaque system. Unlike with other types of purchases, it’s not easy to shop around, compare prices and make informed decisions about healthcare. Even if a patient visits an in-network hospital, they could end up seeing an out-of-network doctor and receiving a massive bill; Congress has attempted to curb this kind of surprise billing, but lawmakers reached an impasse as of late 2019.  

Despite these challenges, there are steps you can take to rein in costs and navigate the messy world of medical billing. We talked to experts about what patients can do before, during and after a visit to advocate for themselves and keep their healthcare costs in check.

Before your visit

The most important thing you can do before an appointment is confirm that your provider is part of your insurance network. Most insurance companies offer tools that patients can use to search online for in-network providers by name, location or specialty. (Third-party websites, including Zocdoc, can offer these services too.) Sometimes insurers’ provider databases are out of date, though, so it’s wise to double check with the doctor’s office. 

“When we work with patients who receive a big bill, it’s almost always due to something being out of network,” says Caitlin Donovan, director of outreach and public affairs at the National Patient Advocate Foundation.

Even if you visit an in-network facility, there’s no guarantee that every provider you see will actually be in your network. “If you’re going for surgery at a hospital, that will include not just your surgeon but your anesthesiologist or your radiologist,” Donovan says. Your surgeon might be in-network, but your anesthesiologist might not be. To cover your bases, note on your intake forms that you only want to see in-network providers. Doing this can help you build a case to present to your insurance company if you need to appeal a claim later.

But sometimes, you may want or need to visit an out-of-network provider. If you decide to take your care out of network, online cost estimate tools can give you a leg to stand on when negotiating prices with the hospital or doctor’s office — a totally legitimate move when you’re facing an exorbitant bill, even though many patients don’t realize they can negotiate, Donovan says.

Tools like the FAIR Health cost estimator aggregate data from billions of insurance claims around the country, allowing patients to look up common procedures and find the average cost for in- and- out-of-network services in their area. If your doctor’s office quotes $10,000 for an out-of-network procedure but FAIR Health data shows an average of only $6,000 for the same procedure, you can use that data to try to negotiate a lower price before you go in for the procedure, Gelburd says.

When you’re making an appointment, also be mindful of where you schedule it. There might be vast price differences, for example, between seeing your primary care provider for a sick visit (in person or via telehealth) versus going to the ER or urgent care when you don’t feel well. “There are so many different venues for care, and some venues may offer similar services,” Gelburd says.

During your visit

Research shows that increasing price transparency doesn’t affect a physician’s decision to order (or not order) a procedure, which means the onus is on the patient to ask questions about what their care will cost.

Nervous to talk about money with your doctor? Don’t be, Donovan says. And don’t wait until your doctor is halfway out the exam room door to approach the subject: “Say right off the bat, ‘I’m worried about finances. Can you talk to me about how we can lower costs?’”

In many cases, your doctor can provide treatment that fits your budget without sacrificing your quality of care. For cancer patients, for example, it can be more affordable to receive IV chemotherapy at the doctor’s office than to take a chemo pill at home.

“Many doctors would presume a patient would be more comfortable taking a pill at home, but not every type of insurance covers the pill at the same level as they cover chemo,” Donovan says. In that case, it’s important for a patient to tell their doctor that affordability is a bigger priority than convenience.

Even if your doctor doesn’t have the answers to all your questions, Donovan says, they can usually point you in the right direction toward a financial assistance department or billing office. “There are some unsung heroes in billing offices,” she says. “They can be very, very good at fighting for you.”

During your visit, also pay close attention to any referrals your doctor makes to other specialists. Ask them not to choose anyone outside your plan’s network.

“Providers should care what patients’ choices are,” Gelburd says, “and [help them] understand what their insurance may provide for.”

After your visit

Don’t rush to pay your bill without giving it a second glance. NPAF estimates that about half of all medical bills have some type of error, Donovan says, and they’re usually not errors that work in the patient’s favor.

Always request an itemized bill, and if you notice that something wasn’t covered, ask your insurance company why; your next step may be to appeal the denied claim. It’s also not uncommon for patients to be billed for the wrong treatment, or even for a treatment they never received.

After Donovan gave birth to her daughter, a breastfeeding consultation that should have been covered by the Affordable Care Act was accidentally recorded as “laceration” instead of “lactation.” She was billed by her insurance company for the mistake, and it took more than a year — and countless phone calls — before it was resolved.

“Be persistent,” she says. “A lot of times, these places rely on people to give up.”

If you’re stunned by the total at the bottom of your bill, remember: This cost isn’t necessarily set in stone. You can attempt to negotiate with the billing department, especially if you’re uninsured or received out-of-network care and your insurance company hasn’t already negotiated the price down.

“Ultimately, the hospital wants to get paid,” Donovan says. “So by saying, ‘I am working with you in good faith, I’d like to pay. This is what I’d consider a reasonable rate; what would you consider a reasonable rate?’ These are conversations you can have with the billing department.”

Regardless of whether insurance covers your claim, if you notice a major difference between the amount your hospital billed and the average amount reported by the FAIR Health cost estimator or other sources, it’s worth calling the billing department to ask if the price can be adjusted.

“The worst they can say is no,” Donovan says. “It’s not like they can raise the price after you ask.”

The future of price transparency

There have been some moves toward demystifying the cost of care for patients, including a federal mandate requiring hospitals to post their prices online starting in 2019.

But the mandate hasn’t done much for patients in the short term. Even when hospitals post their sticker prices online, those numbers don’t reflect what insured patients will owe after their insurance kicks in. The price lists also aren’t standardized across hospitals, which makes it challenging for patients to compare prices for the same services at different hospitals.

Still, Gelburd sees the move as a step in the right direction.

“Imperfect and confusing as those lists may initially be, it really sends a signal,” she says. “Any step toward clarity is positive. We’re at the beginning of the arc.”

Some states have also created laws to protect patients from surprise billing, and there have been bipartisan efforts to implement similar protections at the federal level. Surprise billing, also known as balance billing, occurs when patients inadvertently receive out-of-network services. This can happen when a patient is sent to an out-of-network provider at an in-network facility, or when a patient is taken to an out-of-network emergency room while they’re unconscious.

In late 2019, Congress came close to making a deal that would provide federal protections against surprise billing. But the deal fell apart when lawmakers from the Ways and Means committee issued a counterproposal in December 2019 that effectively killed the deal. 

Policymakers are at odds over the best way to curb surprise billing: Some favor implementing set rates that insurers must pay providers for services; others want an arbitration approach that requires insurers and doctors negotiate each claim on a case-by-case basis. Physicians have lobbied in favor of arbitration, but insurers say it’s arduous and expensive. Patient advocates believe setting flat rates for services will do more to curb surprise bills than arbitration, which would put more money in the hands of doctors and hospitals.

Now, it’s up to Congress to push legislation forward in 2020, but some patient advocates worry that the effort to eliminate surprise  billing will fall to the wayside during a contentious presidential election year.

Despite efforts to improve price transparency, it’s ultimately up to patients to ask questions, comb through bills and be vigilant for errors or odd charges. For patients diagnosed with chronic, debilitating conditions, organizations like the Patient Advocate Foundation can provide case managers to work with hospital billing departments and insurance companies on a patient’s behalf. You can also ask a family member, spouse or friend to contact the billing department or insurance company on your behalf if you’re struggling to do it alone, Donovan says.

It takes persistence, but it’s possible for patients to regain some power and make more informed decisions about their care, even as price transparency reform is slow to progress. The key, Gelburd and Donovan agree, is to ask questions, speak up for yourself and refuse to shy away from talking money with your provider — taboo as it may seem.

“It’s not only permissible, but it’s totally appropriate to enter a conversation about healthcare pricing with your provider,” Gelburd says. “Patients should feel empowered to raise these questions.”

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