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Childhood Cancer

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Don't be afraid to negotiate....

Coping with Insurance

The following excerpt is taken from Chapter 20 of Childhood Cancer: A Parent's Guide to Solid Tumor Cancers , 2nd Edition by Honna Janes-Hodder & Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Finding one's way through the insurance maze can be a difficult task. Understanding the benefits and claims procedures can help parents get the bills paid without undue stress. The following sections outline steps that will 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 on terms or benefits.
  • Learn who the "participating providers" are under the plan, for, in today's managed healthcare climate, there may be a limited network of providers and hefty penalties or no benefits if the patient goes outside the network.

  • Find out what your deductible is.

  • 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 non-generic drugs.

  • Find out if there is a point where 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 notify the company about hospitalizations--many firms require pre-notification except in the case of emergency.
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.
  • Get a copy of every form that you may need to submit-claim forms for inpatient care, outpatient care, or prescriptions. 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 then making many copies. 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 and the level of training required. (Sometimes only counseling by persons with an MA or PhD degree is covered.)

  • Find out the names of approved providers for home infusion supplies (IV medications, central venous catheter supplies, and home intravenous nutrition) and home nursing care. These are often separate companies. Determine 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 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.

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 always deal with the same person. Insurers may be able to provide a contact person for claim review or special needs. Ask the contact person to answer any questions that you have on benefits. Try to develop a cooperative relationship with your contact person, because he can really make your life easier. 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. 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 as 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 contact person may be able to redefine a service that your child needs to allow it to be covered.
My husband works for a small city that contracts out health insurance. A year into our child's treatment, the contract was being renegotiated. He brought home a copy of the proposed contract, and I was horrified to see that they had halved the benefit for transplants, from $200,000 to $100,000. I called the members of the committee negotiating the contract, the union representative, the city insurance liaison, and the city attorney. I was very polite, but I told them that if my child needed a bone marrow transplant, the new contract would bankrupt us. We would lose our home and have to sell all of our belongings to pay our part of the procedure. Then I called two transplant centers, and had them fax me the estimated cost of a routine bone marrow transplant (about $220,000). I sent copies of the fax to everyone that I could think of, and followed it up with phone calls. They changed the new contract back to $200,000. One person can make a big difference.

Challenging a claim

The key to obtaining the maximum benefit from your insurance policy is to keep accurate records and to challenge any denied claims. Some tips on good record keeping are:
  • Make photocopies of everything you send to your insurance company, including claims, letters, and bills.

  • Pay bills by check, and keep all of your canceled checks.

  • Keep all correspondence from billing companies and insurance.

  • Write down the date, name of person contacted, and conversation of all phone calls concerning insurance.

  • Keep accurate records of all medical expenses and claims submitted.
Policyholders have the right to appeal a claim denial 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 get the reply in writing.

    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. They 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!

  • If the insurance company is refusing coverage because they claim the procedure is "investigational" or "experimental" and therefore not covered, contact the Childhood Cancer Ombudsman Program for assistance. This organization offers a free service to help families maximize benefits or resolve disputes.

  • Contact your elected representative to the US Congress. All Senators and members of the House of Representatives have staff who help constituents with problems.

  • If all of the above steps do not resolve the dispute, take your claim to small claims court, or hire an attorney skilled in insurance matters to sue the insurance company.
Above all, don't be afraid to ask questions, and be persistent!

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