Health insurers reject millions of claims for treatment every year in America. Corporate insiders, recordings and internal emails expose the system and its harm.

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Have you ever had a health care claim denied by your insurer? Ever tried to appeal it? Did you wind up confused, frustrated, exhausted, defeated?

I’ve been a health care reporter for more than 40 years. And when I tried to figure out how to appeal insurance denials, I wound up the same way. And I didn’t even try to file an actual appeal.

ProPublica came to me earlier this year with what might have seemed like a simple proposition. They wanted me to create an interactive appeals guide that would help readers navigate their insurers’ maze. (A team of reporters at ProPublica and The Capitol Forum has been investigating all the ways that insurers deny payments for health care. If you’ve got a story to share, let them know here.)

Over the next several weeks, I spoke with more than 50 insurance experts, patients, lawyers, physicians and consumer advocates. Nearly everyone said the same thing: Great idea. But almost impossible to do. The insurance industry and its regulators have made it so complicated to file an appeal that only a tiny percentage of patients ever do. For example, less than two-tenths of 1% of patients in Obamacare plans bothered to appeal claims denied in 2021.

The central problem: There are many kinds of insurance in the U.S., and they have different processes for appealing a denial. And no lawmakers or regulators in state and federal governments have forced all insurers to follow one simple standard.

I tried to create a spreadsheet that would guide readers through the appeals process for all the different types of insurance and circumstances. When a patient needs care urgently, for instance, an appeal follows a different track. But with each day of reporting, with each expert interviewed, it got more and more confusing. There was a point when I thought I was drowning in exceptions and caveats. Some nights were filled with a sense that I was trapped in an impossible labyrinth, with signs pointing to pathways that just kept getting me further lost.

Here are some of the issues that make it so confusing:

First, people have to know exactly what kind of insurance they have. You may think that UnitedHealthcare is your insurer because that’s the name on your insurance card, but that card doesn’t tell you what kind of plan you have. Your real insurer may be your employer. Some 65% of workers who get their coverage through their employers are in what’s known as “self-funded plans,” according to KFF (formerly Kaiser Family Foundation). That means the employer pays for medical costs, though it may hire an insurance company like UnitedHealthcare to administer claims.

The other main type of insurance that companies provide for their workers is known as a “fully insured plan.” The employer hires an insurer to take all the risk and pay the claims. With that kind of plan, the name on your card really is your insurer. Why does this difference matter? Because the route you follow to challenge an insurance denial can differ based on whether it’s a fully insured plan or a self-funded one.

But all too often people don’t know what kind of plan they have and aren’t really sure how to find out. I’m told that some employers’ human resources departments don’t know either — although they should.

“It is a little scary, because people honestly don’t really know what they have,” said Karen Pollitz, a senior fellow at KFF who specializes in health insurance research. “I’m just going to warn you that if you set up the decision tree with an A: yes, B: no, or C: not sure, you’ll find a lot of people clicking not sure.”

Government insurance is its own tangle. I am a Medicare beneficiary with a supplemental plan and a Part D plan for drug coverage. The appeals process for drug denials is different from the one for the rest of my health care. And that’s different from the process that people with Medicare Advantage plans have to follow.

A spokesperson for the Centers for Medicare & Medicaid Services, the federal agency that oversees Medicare, wrote in an email that the agency “has been actively engaged in identifying ways to simplify and streamline the appeals process and has worked with stakeholders and focus groups to identify ways to better communicate information related to the appeals process with the beneficiaries we serve.”

And we can’t forget about Medicaid and the Children’s Health Insurance Programs, which together covered 94 million enrollees as of April, more than a quarter of the U.S. population. The federal government sets minimum standards that each state Medicaid program has to follow, but states can make things more complicated by requiring different appeal pathways for different types of health care. So the process can be different depending on the type of care that was denied, and that can vary state to state.

And don’t even get me started on how baffling it can be if you’re one of the 12.5 million people covered by both Medicare and Medicaid. As far as which appeals path you have to take, Abbi Coursolle, a senior attorney with the National Health Law Program, explains: “It’s Medicare for some things and Medicaid for others.”

I sought help from Jack Dailey, a San Diego attorney and coordinator for the California Health Consumer Alliance, which works with legal-aid programs across the state. On a Zoom call, he looked at an Excel spreadsheet I’d put together for Medi-Cal, California’s Medicaid program, based on what I had already learned. Then he shook his head. A few days later, he came back with a new guide, having pulled an all-nighter correcting what I had put together and adding tons of caveats.

It was seven single-spaced pages long. It detailed five layers of the Medi-Cal appeals process, with some cases winding up in state Superior Court. There were so many abbreviations and acronyms that I needed to create a glossary. (Who knew that DMC-ODS stands for Drug Medi-Cal Organized Delivery System?) And this was for just one state!

Dr. Christianne Heck, a neurologist specializing in epilepsy with Keck Medicine of the University of Southern California, said her health system has a team of professionals dedicated to appealing denials and making prior-authorization requests — where you have to call the insurer and get approval for a procedure beforehand.

“It’s a huge problem,” Heck said. “It usually takes multiple attempts. We have to play this horrible, horrible game, and the patients are in the middle.”

It’s especially complicated in oncology, said Dr. Barbara McAneny, a former president of the American Medical Association who runs a 6,000-patient oncology practice in Albuquerque, New Mexico.

“My practice is built on the theory that all the patients should have to do is show up and we should manage everything else … because people who are sick just cannot deal with insurance companies. This is not possible,” she said.

McAneny told me she spends $350,000 a year on a designated team of denial fighters whose sole job is to request prior authorization for cancer care — an average 67 requests per day — and then appeal the denials.

For starters, she said bluntly, “we know everything is going to get denied.” It’s almost a given, she said, that the insurer will lose the first batch of records. “We often have to send records two or three times before they finally admit they actually received them. … They play all of these kinds of delaying games.”

McAneny thinks that for insurance companies, it’s really all about the money.

Her theory is that insurance companies save money by delaying spending as long as possible, especially if the patient or the doctor gives up on the appeal, or the patient’s condition rapidly declines in the absence of treatment.

For an insurance company, she said, “you know, death is cheaper than chemotherapy.”

I asked James Swann, a spokesperson for AHIP, the trade group formerly known as America’s Health Insurance Plans, what his organization thought of comments like that. He declined to address that directly, nor did he answer my question about why the industry has made appealing denials so complex. In a written statement Swann said that doctors and insurers “need to work together to deliver evidence-based care and avoid treatments that are inappropriate, unnecessary, and more costly. Most often, a claim that is not immediately approved just requires the provider to submit additional information to appropriately document the request, such as the diagnosis or other details. If a claim is not approved after correct and complete information is submitted, there are several levels of appeal available to the patient and their provider.”

Swann outlined some of the appeals steps available, including a review by a doctor who wasn’t involved in denying the claim initially, the chance to submit additional clinical rationale and a review by an entity that’s independent of the insurer. He also noted that Medicare Advantage and Part D programs have multiple levels of appeals before winding up in court, including a step that requires a review by an outside, independent organization.

Domna Antoniadis is a health care attorney in New York who co-runs the Access to Care nonprofit, which educates patients and providers on their health insurance rights. She spent hours helping me navigate various appeal systems.

She offered up one important tip for people who use commercial insurance: Get the full plan document for your policy and read it. It’ll be around 100 pages and will tell you what medical services are covered and detail all the steps needed to appeal a denial. Don’t rely on the four-page summary, she said. It probably won’t help.

Likewise, Medicare, Medicare Advantage and Medicaid denial letters should explain the steps to appeal the decision.

When you can, enlist the help of your medical provider. Sometimes an insurer says no to a claim because a doctor’s office submitted it under the wrong code, and that can be fixed quickly.

Antoniadis acknowledged the challenges but believes that consumers have a lot more power than they realize. They can push back to advocate for themselves.

“The appeals process is not always handled properly by the plans, which is why consumers need to report and complain to their relevant government regulators when they believe they’ve been unfairly denied,” she said. “That’s integral to changing the system.”