For Mark, a 32-year-old machinist from rural Alabama, one of the hardest parts of treatment with a bone marrow transplant was the time he had to spend away from his home and his three children. During his treatment, he also managed problems with eating, tolerating his pain medication and loss of energy and strength. As he began to recover, Mark faced another challenge — managing the extra costs that came with his transplant. He had always been able to pay his own bills and did not want to ask for help. The good news is that the help was there when he asked.
Mark was first diagnosed with chronic lymphocytic leukemia. He was treated with chemotherapy, but his disease developed into myelodysplastic syndrome (MDS). His doctors advised him a transplant was his best treatment option. They began to search for a suitable donor or cord blood unit for him. In early 2004, Mark received an unrelated donor transplant facilitated by the National Marrow Donor Program® (NMDP). He also received help for his post-transplant bills through financial aid programs through Be the Match®, which is operated by the NMDP.
Uncovered costs of transplant and recovery
Like many transplant patients, Mark faced costs connected with his transplant that seemed overwhelming. He had health insurance to cover his treatment costs, but there were many other costs insurance did not cover. The closest transplant center was the University of Alabama in Birmingham, 140 miles from his home.
Mark and his wife, Beth, were in Birmingham for the 30 days of Mark's stay in the hospital and another 37 days of outpatient treatment. During that time they had to cover costs for two households — Mark and Beth in Birmingham and their children at home, where they were cared for by Beth's mother.
- In Birmingham, they had costs such as rent, food, hospital parking fees and long-distance phone calls.
- At home, there were the usual household bills.
- Once Mark and Beth returned home, there were still co-pays for doctor visits and the many medicines he had to take.
The family faced these extra costs without their usual income from Mark's work. He received disability pay, but it was not as much as his usual wages. It was not enough to cover all their extra expenses. Beth had her hands full with nursing school and caring for him and their children. Mark was eager to start earning an income again. By nine months after his transplant, Mark's recovery was going well. He felt ready to work again. But his job as a machinist required long hours on his feet. Mark's doctors advised him it was in his best interest to wait a full year before going back to work.
Asking for help
In the meantime, Mark and his family needed a way to pay the bills. Mark felt uncomfortable asking anyone for money, but he says now that learning to ask for help was an important part of his recovery. And when he asked, the help was there. His family's many friends from work, church and the community rallied to help with funds. (For fund raising tips, see Fund Raising for a Friend or Family Member.)
Mark also received financial support from financial aid programs available from the Be The Match Foundation®. Mark's transplant center told him about two financial aid programs available through Be The Match and applied for funds on his behalf.
Transplant assistance fund
The Transplant Assistance Fund is a financial aid program to support patients like Mark who need help with certain transplant-related costs. Transplant center coordinators or social workers from NMDP transplant centers submit applications for their patients who need financial help.
The Transplant Assistance Fund can help with post-transplant costs, such as lodging near the transplant center, food, drug co-pays and insurance premiums.
Search assistance Fund
The Search Assistance Fund can help cover costs of the search for an unrelated donor or cord blood unit before transplant. Like many patients, Mark found his insurance did not pay for testing unrelated donors to find the most suitable match. However, through his transplant center, he received help covering these search costs from the Search Assistance Fund.
Applications for these financial aid programs must be submitted to Be The Match through your transplant center. Please speak with your transplant center coordinator or social worker if you would like to apply. For more information, see Financial Assistance for Transplant Patients
Focus on recovery
The funds from the Transplant Assistance Fund and the Search Assistance Fund, along with the financial support of the community, helped Mark's family avoid going deep into debt. Avoiding severe financial hardship gave Mark more time and energy to focus on regaining his health. At nine months after his transplant, Mark said he was doing well. He was glad to be home with his family, where he was regaining his energy and his appetite. He was also eager to return to work and grateful for the resources that helped his family manage expenses during the long months of his recovery.