Childhood Cancer

Finding one’s way through the insurance maze can be a difficult task. However, understanding the benefits and claims procedures can help you get the bills paid without undue stress. The following sections outline some steps to help prevent problems with insurance.

Understand your policy

As soon as possible after diagnosis, read your entire insurance manual. Make a list of any questions you have about terms or benefits.

  • Learn who the “participating providers” are under the plan and what happens if you see a non-participating provider. It is possible you will be penalized financially or that your claims may be denied if you go outside the network.
  • Determine whether your physician needs to document specific requirements to obtain coverage for expensive or extended services.

With our insurance, neuropsychological tests, outpatient occupational therapy, speech therapy, and physical therapy are covered, but the phrasing must be that it is a “medical necessity” due to diagnosis and treatments.

  • Find out what your insurance co-pays are for different levels of service (e.g., office visit, outpatient surgery, outpatient testing).
  • Find out what your outpatient prescription drug benefits are for generic and nongeneric drugs.
  • Find out what your deductible is.
  • Find out if there is a point at which coverage increases to 100 percent.
  • Determine if there is a lifetime limit on benefits.
  • Find out when a second opinion is required.
  • Learn when you have to precertify a hospitalization or specialty consultation. Many insurance companies require precertification, even for emergencies.

I had called the insurance carrier to see if they could tell me if they’d sent a precertification for our out-of-town follow-up visits on Monday, but it was Friday afternoon, and they had closed early, so I left a voice message. About 5:30, I got a call from someone from the insurance company who’d said she was the person who reviewed precertifications, and that she thought she remembered doing one for my daughter, but she wasn’t sure. She said that since I had obviously made an effort to get the certification, she would give me an authorization number when I called on Monday. Then she asked some very nice questions about Mary Margaret, expressed shock and sympathy, realized we would still be out of town for doctor visits on Monday, and told me not to worry about it, that I could call on Tuesday to get the number. Then she told me she’s the CEO of the company and anything they could do to help, they’d be glad to! Completely shocking. Somebody from an insurance company who is helpful and pleasant!

  • Get a copy of every form you may need to submit—claim forms for inpatient care, outpatient care, or prescriptions. If your insurance provider allows it, you can cut down on paperwork by filling in all the subscriber information on one of each type of form (except date and signature) and making many copies. Then you will have a form ready to send in with each bill.
  • Determine whether your policy has benefits for counseling. If so, find out how many visits are covered, the payment structure, and the level of training required.
  • Find out the names of approved providers for home infusion supplies (e.g., IV medications, central venous catheter supplies, and home nutrition) and home nursing care. These are often separate companies. Determine policy coverage for these services.

Find a contact person

We changed to a new pediatrician, and he asked me if I thought it would be easier on my son to have visiting nurses come to our home to do the chemotherapy injections and some blood work. Since he had very low counts, it made a lot of sense not to have to go out. It also lessened his fears to be able to stay at home and have the same nurse come to do the procedures. It was a pleasant surprise to find these services covered by our insurance.

As soon as possible after diagnosis, call your insurance company and ask who will be handling your claims. Explain that there will be years of bills with frequent hospitalizations, and it would be helpful to deal with the same person each time. Some insurance companies may assign your child’s account to a case manager, who will review your child’s plan of care in detail and make suggestions designed to make proper use of your policy benefits. Ask the case manager for answers to any questions you have about benefits. Try to develop a cooperative relationship with your case manager, because she can really make your life easier. Also, your employer may have a benefits person who can operate as a liaison with the insurer.


My employee benefits representative was Bobbi. She was just wonderful. The hospital would send her copies of the bills at the same time they sent mine. Since I found so many errors, she would hold the bills a week until I called to tell her that they were correct before she paid them. She was very pleasant to deal with.

Don’t be afraid to negotiate with the insurance company over benefits. Often, your case manager may be able to redefine a service your child needs to allow it to be covered.

Challenging a claim

I did have to fight to get my HMO to cover Michael at an out-of-plan pediatric brain tumor center for surgery. I wrote a long letter, sent lots and lots of backup documentation, got help and support from the Cancer Advocacy Group, and in the end, my local, fantastic hometown neurologist called the director of the HMO, pushed hard on them and helped me out, but we got approval and Michael’s medical costs were covered fully in plan for all services.

The key to obtaining the maximum benefit from your insurance policy is to keep accurate records and challenge any denied claims, sometimes more than once. Some tips for good record-keeping follow:

  • Make photocopies of everything you send to your insurance company, including claims, letters, and bills.
  • Pay bills by check or credit card, and keep all your canceled checks and/or credit card monthly summaries of charges.
  • Keep all correspondence you receive from billing companies and insurance.
  • Write down the date, name of person contacted, and content of all phone calls concerning insurance.
  • Keep accurate records of all medical expenses and claims submitted.

Policy holders have the right to appeal a claim denied by their insurance company. The following are suggested steps to contest a claim:

  • Keep original documents in your files and send photocopies to the insurance company with a letter outlining why the claim should be covered. Make sure to request the reply in writing and keep a copy of the letter for your records.

We were making inquiries into hospice care, feeling it was time to explore that option. I found out that the only pediatric hospice provider in the state of Georgia was not on the preferred provider list. Our insurance company would pay for benefits, but at a reduced rate; not a good thing since the lifetime maximum for hospice care was $7,500. With these benefits, we would get 78 days of hospice care. I felt like my only options were reduced pediatric care or full benefits using adult services. I wrote a letter of appeal stating that medically and ethically, neither of these were good choices. Well, we got a better outcome than I asked for. Not only will they cover the pediatric provider, but they have waived the lifetime maximum!

  • Contact your elected representative to the U.S. Congress. All Senators and members of the House of Representatives have staff members who help constituents with problems. You can also contact your state insurance board with concerns and complaints.

When I ran into insurance company problems, I wrote a letter to the insurance company detailing the facts, the decisions the insurance company made, and a logical explanation about why the procedure needed to happen. I also noted on the letter that a copy was going to our state insurance commissioner, and I sent both letters by certified mail. Within 2 days, the insurance company all of a sudden decided to cover the procedure. I later found out that the insurance commissioner’s office started an investigation against them. Letters help, especially when sent by certified mail.

  • If none of the above steps resolves the dispute, take your claim to small claims court (which does not require you to hire an attorney), find an attorney who will represent you for free (called pro bono), or hire an attorney skilled in insurance matters to sue the insurance company.

It may not feel comfortable being so persistent, but sometimes it is necessary to ensure you get the support you and your child are entitled to.

When I finally got an advocate assigned for my child within our insurance company, I fretted to her one day that every single claim was initially rejected. She replied that the agents were trained to reject all claims the first two times they were submitted as a cost-saving strategy. She said, “Very few subscribers are tenacious enough to come back three times, so we save millions of dollars each year just because they give up.”