1. The family is informed their child is diagnosed with one of 80 different cancers, leukemias, lymphoma, aplastic anemia or related life-threatening blood diseases that a marrow or stem cell 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 news of diagnosis, the parents feel hopeful when told a bone marrow, stem cell 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. Seventy percent of the time, a compatible donor IS NOT found within the family. The next step is a search for an unrelated donor nationally and internationally. The parents can expect to incur the following kinds of expenses:
Needs & Services Sometimes Not Covered by Insurance
- Lab testing to find a matched unrelated or related donor or cord blood unit
- Donor costs
- Transplants for a rare diagnosis
- Travel and lodging expenses to and from the transplant center for patient and/or caregiver
- Food costs while staying near transplant center
- Prescriptions for post-transplant discharge or outpatient medications
- Office visits coverage
- Home health care
- Psychiatric coverage
- IV Neupogen injections
- Procurement of cells from the donor
- Harvest/storage fees prior to transplant
- Backup collection of cells
- Clinical trials
- Sperm/egg storage
- Insurance premiums when patient is not employed
- Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
- Change in cost of living after transplant (different food needs, for example)
- Child-care costs
If your physician has recommended that your child needs a bone marrow, stem cell 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.