Donor Search Fees for the 75 Percent 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 with 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, this initial cost is $4,000. Depending on the formal search results, this cost can be tens of thousands of dollars until the best compatible donor is identified.
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 outpatient cost occurs for all families with a family donor or an unrelated donor that are not covered by insurance.
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. This cost can be covered by Kids Beating Cancer’s “Fund the Match” program.
Compatibility Testing: Once a potential donor is identified, additional testing will be performed and prices for these tests vary depending on many factors. The variables or costs are 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 or more. 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, co-payments add up over the weeks and months along with other out-of-pocket expenses that can bankrupt and destroy the family.