Unfortunately, problems with billing are common for parents of children with cancer. Here are two typical experiences:

Insurance was an absolute nightmare. It almost gave me a nervous breakdown. After all we go through with our children, to have to deal with the messed-up hospital billing was just too much. We would stack the bills up and try to go through them every two or three months. Our insurance was supposed to pay 100%, but the billing was so confusing that they refused to cover some things because it wasn’t clear what they were being billed for. The hospital frequently double billed, especially for prescriptions. We just stopped getting our prescriptions there. We would call the hospital billing department to try to get the mess straightened out, but the billing department was just as confused as we were. They kept sending our account to collections. We did everything in our power to get it straight, but we never did.

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We had two distinctly different experiences at the two institutions we dealt with. The university hospital where my daughter received her radiation gave me a folder the first day. It included, among other things, a sheet from a financial counselor giving all the information needed for preventing and solving billing problems. I never needed to call her because the hospital billing was clear, prompt, and organized. The children’s hospital where my daughter was a frequent inpatient and clinic patient was another story altogether. They billed from three different departments, put charges from the same visit on different bills, frequently over-billed, continuously made errors, and constantly threatened to send the account to collections. I never spoke to the same billing clerk twice. It was a never-ending grind and a constant frustration.

It is impossible to prevent billing errors, but it is necessary to deal with them. Here are step-by-step suggestions for solving problems:

• Keep all records filed in an organized fashion.
• Check every bill from the hospital to make sure there are no charges for treatments not given or errors such as double billing.

During maintenance, my daughter went to the clinic every three months. She had identical treatments every visit—port accessed, vincristine given, physical exam, and intrathecal methotrexate given via spinal tap. Each bill was different, differing by hundreds of dollars, for identical visits! There were errors on each bill, including numerous charges for IV Benadryl® that she never received. I would get the errors removed, then they would reappear on the next bill.

• Check to see whether the hospital has financial counselors. If so, make contact early in your child’s hospitalization. Counselors provide services in many areas, including help with understanding the hospital’s billing system, understanding explanations of benefits, managing hospital/insurance correspondence, dealing with Medicaid, working out a payment plan, designing a ledger system for tracking insurance claims, and resolving disputes.
• If you find a billing error, immediately call the hospital billing department. Write down the date, the name of the person you talk to, and the plan of action.

I often couldn’t even get through to the billing representative; I was just put on hold forever. Then I tried to discuss the problems with the director of billing, but she was never in. After about 20 phone calls, I finally said to her secretary, “You know, I have a desperately sick child here, and I’ve been as patient and polite as I can. What else can I do?” She said, “Honey, get irate. It works every time.” I told her to put me through to somebody, anybody, and I would. She connected me to the person who mediates disputes, I got irate, and we went through all the bills line by line.

• If the error is not corrected on your next bill, call and talk to the billing supervisor. Explain the steps you have already taken and how you would like the problem fixed.

The hospital billing was so bad, and I had to call so often, that I developed a telephone relationship with the supervisor. I always tried to be upbeat, we laughed a lot, and it worked out. She stopped investigating every problem and would just delete the erroneous charge.

• If the problem is still not corrected, write a brief letter to the billing supervisor explaining the steps you have taken and requesting immediate action. Keep a copy of each letter that you write and all written responses.
• Every time you receive an explanation of benefits (EOB) from your insurance company, compare it to the hospital bill. Track down discrepancies.

My system for insurance record keeping was to keep all of the EOBs and bills from the hospital and check them against each other by date of service. If they matched, we paid our part. I also kept an Excel spreadsheet by year that had columns for date bill received, date of service, amount charged, date EOB received, date paid, and check number. At the end of every year, I’d send it to our accountant to review for tax purposes. I also kept files for papers (EOBs and bills). My advice to parents is to not pay until you are sure what you owe. Every time the hospital sent our case to collections, I’d be able to say, “What’s the date of service and the charge?” and then I’d look at my spreadsheet and say that we didn’t get that bill or it was paid on a certain date and I could supply the check number.

• If you are inundated with a constant stream of bills and there are major discrepancies between the hospital charges and what is being paid for by your insurance, ask both the hospital billing department and your insurance company, in writing, to audit the account. Insist on a line-by-line explanation for each charge.

Within five months of my daughter’s diagnosis, the billing was so messed up that I despaired of ever getting it straight. When the hospital threatened to send the account to a collection agency, I took action. I sent certified letters to the hospital and the insurance company demanding an audit. When both audits arrived, they were $9,000 apart. I met with our insurance representative, and she called the hospital, and we had a three-way showdown. We straightened it out that time, but every bill that I received for the duration of treatment had one or more errors, always in the hospital’s favor.

• If you are too tired or overwhelmed to deal with the bills, ask a family member or friend to help. That person could come every other week, open and file all bills and insurance papers, make phone calls, write all necessary letters, and even scan your records into your computer for storage.
• Do not let billing problems accumulate. Your account may end up at a collection agency, which can quickly become a nightmare.

Our insurance was constantly months behind in paying our bills to the children’s hospital. The hospital sent our account to collections, despite my assurances that I was doing everything I could to get the insurance to pay. We were hounded on the phone constantly by the collection people, often until we were in tears. We finally just took out a second mortgage and paid off the hospital, but now I don’t know if we will be reimbursed by insurance.

Not all stories are so grim. People who are in a single payer healthcare system, in some managed care systems, or on public assistance may never see bills. Many people with insurance encounter no problems throughout their child’s treatment.

Our insurance paid 80% of everything, no questions asked, and always paid us within a month. People shouldn’t have to worry about finances or their insurance program at a difficult time like this.

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We have a low income, so we are on the state plan. They give us coupons for each child, and we just hand over a coupon at each visit. I have never seen a bill.