SCTs are expensive. Some transplants are considered standard of care, so insurers cover the procedure without problems. However, you will need to work with the transplant center coordinator to find out whether your insurance company considers the type of transplant proposed for your child to be experimental, and possibly not covered. All transplant centers have coordinators who will help obtain insurance approval for your child’s transplant. Most insurance plans have a lifetime cap on benefits, and many only pay 80% 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 an SCT.

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

Most insurance companies will assign your child’s care to a case manager who is responsible for making arrangements with the transplant center and helping with financial issues. Case managers 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.

Right at the beginning, our doctor explained the different treatment options, including a stem cell transplant. The insurance company denied coverage for the transplant because they considered it experimental, even though our oncologist wrote several appeals. Social workers and the doctor dealt with the insurance company but we felt the stress of it. You shouldn’t have to stress over that when your kid is so sick!

At the time this book was written healthcare policy was in flux. So if you don’t have insurance, you may be able to go to www.healthcare.gov to see whether your family is 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.

We were one of the fortunate families because I had excellent insurance from the hospital where I worked (the coverage isn’t as good now). We did not pay anything out of pocket for the transplant, and the hospital was in our town so we didn’t have to travel. The insurance company assigned a case worker who called every week to check that the billing was correct and that things were okay. Most families we know are not so lucky. Community members held two fundraisers for us, and we didn’t need to touch that money. So, we donated it to nonprofits that help kids with cancer.

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 an SCT. Travel, accommodations, and related costs are paid by parents.