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.

Our insurance company covered 100 percent of maintenance drugs only if the patient needed them for the rest of their lives. Christine's 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.

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.

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 facts we can persuade our employer to help resolve the issue that is causing all the grief.

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