I decided to create a simple map of how to appeal an insurance denial. Instead, I found an incomprehensible labyrinth.

Have you ever had a medical claim denied by your insurance company? Have you tried appealing? Did you end up confused, frustrated, exhausted, defeated?

I’ve been a health reporter for over 40 years. And when I tried to figure out how to appeal insurance denials, I ended up the same way. And I didn’t even try to file a real 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 insurance maze. (A team of reporters from ProPublica and the Capitol Forum has been investigating all the ways insurers deny health care payments. If you have a story to share, tell them here.)

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

The core problem: There are many types of insurance in the US and they have different processes for appealing a denial. And no legislator or regulator in the state or federal governments has forced all insurers to follow a simple standard.

I tried to create a worksheet that would guide readers through the appeals process for all different types of insurance and circumstances. When a patient needs urgent care, for example, the resource takes a different path. But with each day of reporting, with each expert interviewed, everything became more and more confusing. There was a time when I thought I was drowning in exceptions and caveats. Some nights were filled with the feeling that I was trapped in an impossible maze, with signs pointing to paths that left me more and more lost.

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

First, people need to know exactly what type of insurance they have. You might think that UnitedHealthcare is your insurance company because that’s the name on your insurance card, but that card doesn’t tell you what type of plan you have. Your real insurer may be your employer. About 65% of workers who get coverage through their employers are on what’s known as self-funding plans, according to the KFF (formerly Kaiser Family Foundation). This means that the employer pays the medical costs, although it may hire an insurance company such as UnitedHealthcare to handle the claims.

The other main type of insurance that companies offer their workers is known as a fully insured plan. The employer hires an insurance company to assume all risks and pay claims. With this type of plan, the name on your card is actually your insurance company. Why is this difference important? Because the path you take to dispute an insurance denial can vary depending on whether it’s a fully insured or self funded plan.

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

It’s a little scary because people honestly don’t really know what they have, said Karen Pollitz, a KFF senior fellow who specializes in health insurance research. I’ll just warn you that if you set up the decision tree with 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 medication denials is different from the one for the rest of my healthcare. And this is different from the process that people with Medicare Advantage plans must follow.

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

And let’s not forget Medicaid and the Child Health Insurance Programs, which together covered 94 million enrollees in April, more than a quarter of the US population. The federal government sets minimum standards that each state Medicaid program must follow, but states can complicate things by requiring different avenues of redress for different types of health care. So the process can be different depending on the type of service that was denied, and this can vary from state to state.

And don’t even get me started on how disconcerting it can be if you’re one of the 12.5 million people covered by Medicare and Medicaid. As for which appeals path you should take, Abbi Coursolle, senior counsel for 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 of the California Health Consumer Alliance, which works with legal aid programs across the state. On a Zoom call, he looked over an Excel spreadsheet created 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 after spending all night correcting what I had done and adding tons of caveats.

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

Christianne Heck, a neurologist specializing in epilepsy at Keck Medicine at the University of Southern California, said her health care system has a team of professionals dedicated to appealing denials and making prior authorization requests where you need to call your insurance company and get approval to a procedure beforehand.

It’s a big problem, Heck said. Several attempts are usually required. We have to play this horrible, horrible game, and the patients are in the middle.

It’s especially tricky 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 based on the theory that all patients should do is show up and we should take care of everything else because people who are sick just can’t handle insurance. That’s not possible, she said.

McAneny told me he spends $350,000 a year on an assigned team of denial fighters, whose only job is to request prior authorization for cancer treatment, an average of 67 requests a day, and then appeal the denials.

For starters, she said bluntly, we know that everything will be denied. It is almost certain, she said, that the insurer will lose the first batch of records. We often have to send the records two or three times before they finally admit that they actually received them. They play all these types of delay games.

McAneny thinks that for insurers, it’s all about the money.

His theory is that insurers save money by delaying expenses as long as possible, especially if the patient or doctor withdraws the claim, or if the patient’s condition deteriorates rapidly in the absence of treatment.

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

I asked James Swann, a spokesman for AHIP, the trade group formerly known as Americas Health Insurance Plans, what his organization thought of comments like this one. He declined to address this directly, nor did he respond to my question about why the industry has made appealing denials so complex. In a written statement, Swann said doctors and insurers need to work together to provide evidence-based care and avoid inappropriate, unnecessary and more costly treatments. Most of the time, a claim that is not immediately approved simply requires the provider to submit additional information to properly document the claim, 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 recourse available to both the patient and their provider.

Swann described some of the appeal steps available, including a review by a physician who was not initially involved in the denial of the claim, the opportunity to provide additional medical justifications, and a review by an entity independent of the insurer. He also noted that the Medicare Advantage and Part D programs have multiple levels of appeal before they are closed in court, including a step that requires a review by an external, independent organization.

Domna Antoniadis is a health care advocate in New York and co-directs the non-profit organization Access to Care, which educates patients and health care providers about their health insurance rights. She spent hours helping me navigate the various appeals systems.

She had an important tip for anyone using commercial insurance: Get the full plan document for your policy and read it. It will be about 100 pages long and will tell you what medical services are covered and will 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, ask your doctor for help. Sometimes an insurance company turns down a claim because a doctor’s office has filed it with the wrong code, and this can be fixed quickly.

Antoniadis recognized the challenges, but believes that consumers have much more power than they realize. They may retreat to defend themselves.

The appeals process is not always handled properly by plans, which is why consumers need to report and complain to relevant government regulators when they believe they have been unfairly denied, she said. This is essential to change the system.