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

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.

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.

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.

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!

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.”