Childhood Cancer

Childhood Leukemia

Coping with Insurance

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 policy. 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 copays are for different levels of service (e.g., office visit, outpatient surgery, outpatient testing, hospitalization, emergency room visits).
  • Find out what your outpatient prescription drug benefits are for generic and non-generic drugs.
  • Find out what your deductible is.
  • Find out whether there is a point at which coverage increases to 100%.
  • Determine whether 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 realized that my daughter had been treated for over four months, and I had never called the insurance company. When I read the manual, I was horrified to find out that I had not pre-notified them about three scheduled hospitalizations. There was a $200 penalty for each lapse. I called in tears, and they only charged me for one mistake, not all three.

  • Determine whether your policy has benefits for counseling. If so, find out how many visits are covered and how much of the cost is covered.
  • 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. Find out the policy coverage for these services.

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 my son 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.

Find a contact person

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. Your insurance company may assign your child’s account to a case manager who will help you understand and use of your policy 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 specialist 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.


Do not 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.

Our insurance company covered 100% of maintenance drugs only if the patients needed them for the rest of their lives. Christine’s maintenance drugs were only needed for two years but were extremely expensive. I asked my contact person for help, and she petitioned the decision-making board. They granted us an exemption and covered the entire cost of all her maintenance drugs.

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Some of us have employer-paid health insurance benefits. If we are not comfortable with the level of service that the insurance contractor is providing (particularly when it comes to not resolving a bill for months or even years), that’s an employee satisfaction and compensation issue. Remember, those of us with employer-paid health insurance get this instead of additional cash. Non-cash compensation has significant advantages for the employer. Sometimes, with a little luck, the right presentation, and the facts, we can persuade our employer to help resolve the issue that is causing all the grief.

Appeal a denial

Policy holders have the right to appeal a denial by their insurance company. The following are ways to appeal a denial of payment.

  • 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 a written reply 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. 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 in the letter that a copy was going to our state insurance commissioner, and I sent both letters by certified mail. Within two 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). You can also 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 needed to ensure you get the support to which you and your child are entitled.

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 certain types of 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.”