Paying for the transplant

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Stem cell transplants are expensive. Some transplants are considered standard of care, so insurers cover the procedure without problems. However, you will need to research carefully whether your insurance company considers the type of transplant proposed for your child to be experimental and therefore not covered. Most insurance plans have a lifetime cap, and many only pay 80 percent of the costs of the transplant up to the cap. Often, transplant centers will not perform the procedure without all of the money guaranteed. With time being of the essence, this can cause great anguish for families who struggle to raise funds or mortgage all of their belongings to pay.

Most insurance companies will assign your childs care to a transplant coordinator or case manager, whose responsibility it is to make arrangements with the transplant center and handle financial issues. Getting to know your coordinator and letting that person know your needs and concerns may provide an additional valuable resource for you during this stressful time.

Our first quote from the transplant center was $350,000, but we were able to negotiate for a lower price.

My son died soon after the transplant. I hate to talk about the money, because I don't want people to think I begrudge spending it. I know that I would feel differently if the transplant had been successful, but I honestly think that we were misled about the real chance of success for his type of disease. We spent the equity on our house, plus took out a second mortgage. We will be paying it off the rest of our lives.

If you are having difficulty getting your insurance company to pay for the transplant, the Blood and Bone Marrow Newsletter provides a free referral service to attorneys and not-for-profit organizations who may be able to help you. Fill in the form at http://www.bmtnews.org or phone (847) 433-3313.

You can also contact the Medical Care Management Corporation, which arbitrates disputes between insurers and medical centers. You can contact this organization by phone: (301) 652-1818 or on the Internet at http://www.mcman.com.

When our son needed a transplant for AML, the insurance company kept refusing to pay because they said it was "experimental'.' So my wife became good friends with the catastrophic caseworker. The caseworker was extremely helpful. When it was disallowed again, she was upset and called my wife and said, "I'm going to tell you how to get this thing approved." She dictated two letters to my wife: one for unrelated transplant and one for cord blood. The doctor sent them in, and they quickly approved the unrelated transplant but denied the cord blood again as experimental, although our doctor thought cord blood was his best hope. With some more coaching from the caseworker, a third attempt at a cord blood approval was successful. The caseworker even called my wife with the good news before she alerted the hospital. Her help most likely saved my son's life.

If you are not insured (or are underinsured) and must raise all or part of the necessary funds, you can contact the organizations listed in Appendix C that provide financial assistance. They may be able to offer financial help and can provide advice on how to raise funds quickly and effectively. Before working with any of these organizations, ask for all printed information available about them and ask questions about any fees or costs associated with their services. Make sure that when the treatment is completed or the child dies, remaining funds will be applied to outstanding medical debts.

In Canada, each province and territory has a provincial health plan that covers the medical costs of transplantation. However, there are still expenses that will need to be covered by the family. Children will often have to travel long distances to facilities that are capable of performing a transplant. Travel, accommodations, and related costs have to be paid for by the parents. Stem cell transplants place financial burdens on all families, even if their country has a standardized healthcare system.

Our HMO refused to pay for our daughter's bone marrow transplant because it required an unrelated donor, which they considered to be "experimental'.' Her oncologist and several doctors from the transplant center gathered data and presented it to the insurance board. The HMO reversed its position and paid for the transplant, but not for the donor search, donor fees, donor harvest, or having the marrow transported from London. It cost us approximately $25,000.

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