STEP-BY-STEP DIAGNOSIS TO TRANSPLANT
1. The Family is informed their child is diagnosed with one of 72 different cancers, leukemias, lymphoma, aplastic anemia or related life-threatening blood diseases that a marrow transplant is the only treatment and the best hope for a cure. Depending on the disease it may be the preferred treatment upfront or this news may come after the child’s disease has returned, i.e., a relapse.
2. After the initial devastation of the new of diagnosis, the parents feel hopeful when told a bone marrow or cord blood transplant might treat their child’s disease. Then the parents are informed of the potential out of pocket costs and the financial reality sets in: even with insurance coverage the treatment may be too costly for the family to bear.
3. The child (the patient,) their siblings, (if there are any) and parents are HLA typed. This may or may not be fully covered or have limits of coverage under insurance or Medicaid.
4. 75% of the time a compatible donor IS NOT found within the family. The next step is a search for an unrelated donor, the parents can expect to incur the following kinds of expenses:
DONOR SEARCH COST FOR DONOR IDENTIFICATION & TRANSPLANT COST
• Donor search fees for the 75% of patients needing an unrelated donor to proceed with transplant: A preliminary search of the Be The Match Registry, other small registries and cord blood registries is done free of charge by the National Marrow Donor Program (NMDP). A Formal Search more specific typing, is not free and is only initiated at a Transplant Center that is F.A.C.T accredited and contracted with NMDP.
• Cord Blood unit donor expenses: For a Transplant facility that is not contracted with the NMDP or F.A.C.T accredited, a cord blood search for a compatible donor can be obtained through a few Cord Blood Centers that also operate independent of the NMDP. If a compatible Cord Blood unit is identified at an independent Center the total fee for one cord that includes testing and shipping runs around $35,000. In some cases a double cord is needed for engraftment changing this cost to $70,000. This fee is for the donor unit only, as other out of patient cost occurs for all families with a family donor or an unrelated donor that are not covered by insurance. (See sample list below)
The patient’s Transplant Center will assist the parents in determining if their insurance will cover the testing of donors. If you don’t have this coverage, they will be told of their financial responsibility. It may range from $10,000 to $25,000 initially.
• Compatibility testing: Once a potential donor is identified, additional testing will be performed and prices for these tests vary depending on many factors. One that cost variables is when a patient has several siblings, as each will need to be tested at the same time. Some centers require advance payment to cover these compatibility tests. Frequently more than one test is done. These fees may or may not be reimbursed by insurance or government agencies.
• Donor typing of family and friends: There is a fee for each HLA lab test done. This is due to the cost of the sophisticated DNA lab work necessary to identify the best possible matching donor. Siblings are tested first and then other family members may wish to be tested. Insurance companies will generally cover testing of siblings, parents and the patient, but not cover additional family members.
• Marrow Stem Cell harvest and donor expenses: The cost of the actual collection of cells from the adult unrelated or family related donor, his/her medical tests, and possible travel expenses may be high. Usually there is a fixed fee for the collection and delivery of marrow stem cells. The average rate is about $3,500–$5,000 if it’s a related donor. The average rate for an unrelated donor is $15,000–$50,000. Donors are not paid for any part of their stem cell donation.
• The actual transplant: The procedure is very expensive. Total cost can run up to $450,000. Insurance companies vary widely on coverage. It is possible that much of the patient’s transplant, if not the entire cost, will be covered by insurance or Medicaid.
• Post-transplant: It’s difficult to predict a family’s expenses after the transplant. Much will depend on the child’s recovery time, which may range from six months to a year. The patient’s insurance company will probably cover testing and may also cover follow-up visits and procedures. However, there are many out-of-pocket expenses. Medications can be very costly, especially if the patient does not have prescription coverage. Even with coverage, with co-payments, these add up over the weeks and months along with other out of pocket expenses that can bankrupt and destroy the family.
Kids Beating Cancer’s “Fund the Match” Program – Provides search assistance funds to help pay the costs to identify a compatible donor. The Request for Funding is through the Kids Beating Cancer Pediatric Transplant Center to begin the donor search process so you can move forward with your transplant as soon as possible.
To be eligible:
Your Physician must have started a preliminary search by first HLA typing the siblings of the patient. If lab results show their is no compatible HLA matches within the family your Physician will start a preliminary search for an un-related donor from the Be The Match Registry and/or search for an umbilical cord blood donor. Your transplant must be facilitated at the Kids Beating Cancer Pediatric Transplant Center.
Your transplant coordinator has gone over your insurance with you and determined you do not have enough coverage to cover the donor search costs. You do not have the financial resources to pay for these costs on your own. Your transplant coordinator must submit your application to Kids Beating Cancer.
Patient First Steps
If your Physician has recommended your child needs a bone marrow or umbilical cord blood transplant (also called a BMT) to treat your child’s disease, you have many things to think about. You'll want to try to prepare yourself and your family for the challenges ahead.
It is a good idea for your family to make plans about how to manage your household while your child is in the hospital and during your child’s recovery.
You can also organize information at home to make things easier for family and friends who want to help. That way you can focus on your child getting better during their transplant and worry less about what needs to be done at home.
A transplant can be a stressful treatment. You will need emotional support as you plan for and go through your child’s transplant. Talk with your family and friends about your feelings.
If you have other children, let them know what to expect during and after the ill child’s treatment. It may help to talk to a social worker or counselor who has worked with other transplant patients and their families. You may want to talk to other parents who have a child who is going through a transplant or who have already had a transplant.
The transplant process begins with your child’s pre-transplant medical evaluation and treatment before your child receives the donated cells. After your child receives the transplant, the early months of recovery are also an important part of the process.
Your child’s Physician and support staff will go over what to expect before, during, and after the transplant. The following are important steps:
Evaluating the patient’s health before transplant
Getting a Central Line and entering the Hospital
The Preparative Regimen
Receiving the Stem Cells
Waiting for engraftment: Days 0-30
Early recovery: Days 30-100