Insurance and Financial Issues

A bone marrow, stem cell, or cord blood transplant is an expensive medical procedure. Depending on the transplant center, the length of time you must be hospitalized, and complications that arise, the cost can easily exceed $100,000 and, in some cases, exceed a half million dollars.

Most transplant centers have a financial coordinator who will work with you and your insurance company. It is important that you tell the financial coordinator upfront about all of your insurance policies so that he or she can maximize your benefits and minimize your out-of-pocket expenses. The financial coordinator, not you, will request pre-authorization from your insurance company for your transplant.

If you do not have health insurance, your center may advise you on how to apply for coverage or will require a significant deposit from you before beginning treatment.

Appealing a Denial of Coverage

If your insurance company denies coverage of your transplant, it’s important to understand what they are denying: the transplant itself or the medical center where you plan to receive treatment.

Many insurance companies have a 'Centers of Excellence' network that includes transplant programs that meet their standards. They usually require their plan enrollees to be treated at one of these centers.

If the insurance denial is for the transplant itself or part of the medical treatment associated with the transplant, you may be able to file an appeal. Sometimes, the issue is as simple as a wrong diagnostic code being used. Other times, insurance may question whether the treatment is ‘investigational’ or ‘experimental’ rather than the standard of care for your disease. The medical team at your transplant center should be able to provide information to your insurer to address these concerns.

Appeals usually need to be filed within a particular time period to avoid losing further rights to appeal. Your transplant team may appeal   
the denial of coverage for you, or help you file the appeal yourself. You may want to hire an attorney experienced in this area of   
law to help you.

TriageCancer is a not-for-profit organization that can help you understand your legal rights. 

Cancer Insurance Policies

Some patients have a cancer policy and expect the policy to cover the full cost of the transplant. Cancer policies are not intended to replace full insurance plans and do not provide sufficient benefits to cover the cost of a transplant. Rather, they help cover things like deductibles and co-pays on your main health insurance policy and lost income.

In most cases, cancer policies need to be purchased before you are diagnosed with cancer in order for you to qualify for a payout.

Health Insurance Cost-Sharing Ministries

Some patients belong to a health insurance cost-sharing ministry. These arrangements are not considered insurance by most transplant centers. They are pooled funds organized by a religious organization or social group. People voluntarily pay into the fund, and the dollars are used to pay for members’ medical expenses.

The drawback with these ministries is that you have no legal protection or guarantee that your medical bills will be paid. Consequently, most transplant centers do not consider them true health insurance and will require a significant deposit from you up-front before beginning treatment.

Insurance Coverage for Clinical Trials

Some patients enroll in a clinical trial that is testing a new drug or treatment during transplant. While the cost of the investigational portions of care provided during trial are usually covered by the clinical trial sponsor, the rest of the services associated with the clinical trial are considered standard-of-care and are billed to the patient or the patient’s insurance.

Medicare has a special coverage policy for clinical trials, and the Affordable Care Act (ACA) requires most commercial insurance plans to cover standard-of-care services provided during the clinical trial. When insurance plans authorize standard-of-care services, patients may owe the same type of deductibles or co-payments as they owe for treatments that are not part of a trial.

It is rare for a clinical trial to cover all of the treatment costs, so ask your physician or trial coordinator which services are paid for by the clinical trial sponsor and which services are your responsibility.

Financial and Fundraising Assistance

Several organizations provide financial aid or fundraising assistance for transplant patients.

BMT InfoNet's Financial Assistance Program offers eligible patients help with expenses such as transportation, food, and lodging.

NMDP offers financial help for patients who will be transplanted with cells from an unrelated donor.

Bone Marrow & Cancer Foundation offers financial assistance for a variety of expenses associated with transplant

The Leukemia & Lymphoma Society provides financial assistance to patients with a blood disorder.

HelpHopeLive helps patients raise funds for transplant and manages payment of medical bills. 

Children’s Organ Transplant Association helps families raise funds for a child's transplant.   

BMT InfoNet’s Resource Directory lists other organizations that provide financial help to some patients.

Ask the social worker or financial counselor at your transplant center if there are any local funds that may provide you with assistance.