PBSCTs are expensive. Some transplants are considered the standard of care, so insurers cover the procedure without problems. However, you will need to carefully research 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 on benefits, 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. Coordinators can be valuable resources during this stressful time, especially if you get to know them and share you needs and concerns. If the insurance company does not assign a case manager, you can request to have one assigned or you can speak with a benefits manager about coverage and costs.

If you do not have health insurance, check www.healthcare.gov to see whether you are eligible for government-sponsored insurance plans. Another option is the National Cancer Institute (https://ccr.cancer.gov), which offers transplants free of charge to children 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, many other expenses will need to be covered by the family. Children often have to travel long distances to facilities that can perform a transplant. Travel, accommodations, and related costs have to be paid by parents.