When you face a serious health crisis that requires a hospital stay, there are two traumas– the trauma of the actual condition and the administrative and billing trauma that usually coincides with recovery.

When Joe and his wife Jenn (READ: The Long and Winding Road to Diagnosis) learned their son, Matteo, had a benign brain tumor, they had already been through weeks of trying to figure out what was wrong with their two-year-old son. Now, finally with an answer and a treatment pathway, they were ready to focus on healing. After weeks of uncertainty while searching for a diagnosis, they finally had an answer. They received the shocking news that their two-year-old son had a very large benign tumor on his brain.

After an ambulance transfer to an academic medical center, an 8-hour surgery, and a 10-day hospital stay–they were ready to rest at home and nurse their boy. They had reached the stage of transition to home and recuperation. However, it wasn’t long for the bills to start coming, and they didn’t come in any order or “with instructions.” Hospital billing comes in drips. It’s the old saying of death by a thousand cuts.

Here’s Joe: “Something hits and you’re like, Oh, that’s not that bad. And then three other bills come from the same biller or the same provider, and you’re kind of shocked.”

Create a Billing Tracking System from the Beginning

The billing and the lack of transparency was a major surprise to Joe. He had the presence of mind to put a system in place. He opened the bills the day they arrived and entered everything into a spreadsheet and took stock. It was an eye-opening situation. The disarray and magnitude of the billing can be a very big surprise to anyone navigating the US healthcare system.

Here’s Joe: “At that point, you feel beaten down by the universe. It’s not the time when you’ve got a ton of fight in you. But it is basically the time when you need as much fight as you can muster up because otherwise you will get pushed around.”

Protip: Everything is negotiable, and don’t assume all the billing is accurate. Open the bills when they come; enter them into a spreadsheet (see resources for a template), and set up a system that works for you. Review the bills, and look for duplicate billing where insurance was not applied. The first step is to take stock and know what you have.

When Managing Billing: Clarify, Negotiate, and Ask Questions

When you are in the hospital, you may see a number of providers on any given day. Some of these doctors that examine you on their rounds may not be in-network. Here’s Joe: “When you are in the middle of a health crisis, are you supposed to ask the doctor in the PICU (pediatric Intensive care unit) – are you in network? Before you will allow them to examine your child?”

Protip: Once the bills are in order, prioritize and negotiate. You can negotiate the total amount and payment terms. Review your situation with the billing representative. Be sure to get a name, and take notes about your agreement. Enter those notes into your spreadsheet, including the date, time and name of the person; get email addresses for follow up communications. Keep clear records of these conversations for future reference.
Protip: Before you get started with your negotiations, make sure you have your Explanation of Benefits statements from your insurance company – known as the EOB. This document will describe the services received, what the provider billed your insurance, what your insurance paid, and what you owe the provider–if anything. The EOB also will show how much of your deductible was applied to the bill, and if you have reached your deductible yet or not. Compare this statement to any statements from your providers. If you have any questions about what’s listed on the EOB, call your insurance provider.

Joe took the direct approach to get the clarification he needed when it came to that pile of bills.

Here’s Joe: “And when you get a bill, and it looks like it’s wrong or it looks like it is a bill that shouldn’t be, you have to ask questions because in our experience we found that there were mistakes.”

Protip: Ask a family member, trusted friend, or hire a bookkeeper to help manage and assess the bills as they come in. Have a partner, and try not to go it alone. Once you’ve assessed that your insurance was properly applied (see EOB) then work with the provider to negotiate a reduction in the balance and a payment plan. You can get both. Be sure to take careful notes and record all the details in a central notebook or digital document like a spreadsheet.

Here’s Joe: “Believe me, the first inclination is to run from it. But then I realized, I’m not embarrassed. There is no stigma. I made the calls.”

Assessing the bills can be eye-opening and the relative value vs. the cost can defy logic. The bill from the neurosurgeon although a very large amount seemed reasonable to Joe, given that the man had saved their son’s life. Here’s Joe: “But then seeing that compared to the most ridiculous mundane things where you think, well that’s robbery.”

When asked for one word to sum up his experience with the US healthcare system, Joe again talked of two systems. For the facility, doctors, and nurses, his word was life-saving. For the administrative, accounting, and insurance side of the system, his words were intentionally misleading.

“Insurance-wise there is a foundation for a system that could really work. At the end of the day, it got done but it was really hard and took an immense amount of effort and constant corrections.”

His final words when asked who were the greatest advocates or supporters during this time? Nurses won that award. The nurses were the ones that got them through the process. They focused on their son and his care and also Jenn and Joe and what they needed as parents living in this moment to moment hyper-surreal experience.

Joe's rating of the system for the doctors, nurses, and facility


Joe's rating for the administrative, accounting, and insurance


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