PBSCTs are expensive. Some transplants are considered the 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 need to take out a second mortgage to pay for a PBSCT.

Most insurance companies will assign your child’s care to a transplant coordinator or case manager who is responsible for making arrangements with the transplant center and handling 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.

If you are having difficulty getting your insurance company to pay for the transplant or coverage has been denied, BMT InfoNet provides a free referral service to attorneys and not-for-profit organizations that might be able to help you. To get this help, fill in the form at www.bmtinfonet.org/services/insurancehelp or phone (888) 597-7674.

If you do not have health insurance, check www.healthcare.gov to see if you are eligible for government-sponsored insurance plans. The National Cancer Institute (http://bethesdatrials.cancer.gov) offers transplants free of charge to patients who qualify for one of its research studies.

In Canada, each province and territory has a provincial health plan that usually 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 can perform a transplant. Travel, accommodations, and related costs have to be paid by the parents.