How can I make sure that bills for my child’s BMT are accurate and processed correctly?

There are several important steps you can take to make sure that you receive the maximum insurance benefits are received for covered BMT expenses. First, ask the transplant center to always send you  itemized bills for all charges, as this is not done routinely.   Also ask that the insurance company assign a case manager to your child’s case, if this has not already been offered. Children covered by WA Medicaid will be assigned a case manager. S/he can serve as a single point of contact for handling all of the claims and insurance-related matters related to the BMT process. Case managers can also help to request exceptions to limits of coverage, troubleshoot denial of claims and work pro-actively to coordinate coverage for services from multiple providers to ensure that your child receives the maximum benefits from the plan. Be sure to get the direct toll-free phone number and/or e-mail address of the case manager.

Are unrelated BMT donors and recipients allowed to meet?

In the US, the identity of unrelated BMT donors and recipients is kept confidential for at least one year following the transplant. During this time, both parties may exchange non-identifying correspondence and small gifts  through the registry serving the recipient (and the registry serving the donor, if different).  The NMDP allows its own donors and their recipients in the US to learn each other’s identity after one year has passed, if both parties agree. In the case of minors, parental consent is needed. Some countries outside the US require longer waiting times, and a few never allow donors and recipients to make contact. at all.

These regulations were developed to protect confidentiality, in accordance to cultural norms in specific countries, as well as to address the emotional impact of the BMT process on both parties. Donors receive extensive counseling, including on the sensitive issue of death of the patient. The reality is, that even though the donor’s  stem cells were well-matched for transplantation, not all  BMT recipients survive,  due to factors including relapse of their disease, complications, infections, etc. While it is not the donor’s fault that a recipient does not survive,  donors may still feel responsible for the outcome.

The identity of cord blood donors is presently kept confidential permanently. However, due to the newness of use of cord blood for BMT, as well as to the fact that most current cord blood donors are themselves now minor children, it is possible that in the future, the confidentiality guidelines may change.

Many donors and recipients have reported that they feel a special connection with each other, or between families, even in cases where the recipient did not survive. Due to the variability of human nature, not all donors and recipients choose to have or to maintain contact. It is widely reported that those who do are united by a special bond that grew from the act of trying to help save the life of another human being.

What should I do if the request for approval of the BMT is denied?

It is important to inform yourself about the appeal procedure for your insurance plan. All plans sold in WA are required to have an appeal process and to tell their customers in writing how to go about making an appeal. You will need to get the help of the transplant center to make an appeal. Sometimes the matters can be resolved by having the attending physician write a letter telling why a BMT, or a specific BMT protocol or procedure, is needed for your child’s treatment, along with references to relevant published medical literature. Other times, it will be necessary to quickly begin the formal appeal process. You may also contact the Office of the Insurance Commissioner (OIC) for WA to ask for advice on filing an appeal, and to request that the OIC conduct their own inquiry.

Will my child’s insurance plan pay for the donor search?

Often, but not always. As each plan is different, you need to find out right away what coverage if any, your public or private insurance plan offers for HLA testing for your child and any siblings or other relatives, as well as for a search for an unrelated donor.  While most, but not all, plans cover donor search, the coverage may be limited by dollar amount or by number of searches allowed for unrelated donors. Some patients have found that their insurance company will not cover testing if a transplant has not been approved, but the approval cannot be requested until after the doctor knows if transplant can be a treatment option based on availability of potential donors. If coverage is denied, request a reconsideration and/or formally appeal the decision quickly, asking for help from your child’s  your oncologist or transplant center.

You also may be able to receive financial assistance for donor search from a special fund of Be the Match (NMDP) that was created for this purpose. For more information, contact BTM’s Office of Patient Advocacy.