A person is diagnosed with a blood cancer in the United States every 3 minutes. In 2019, blood cancer is expected to make up 10% of all new cancer cases diagnosed in the country. While chemotherapy remains the standard of care for blood cancer patients, hematopoietic stem cell transplant (also called bone marrow transplant) has improved the survival rate for some of these cancers from 0% to nearly 80%. Bone marrow transplant is a complex procedure where the patient’s damaged hematopoietic stem cells are completely removed with radiation and chemotherapy, and replaced with healthy stem cells from a matched bone marrow donor.
Be The Match is a national bone marrow registry that connects thousands of patients suffering from blood cancers and blood disorders with their potential donors. The registry is operated by the National Marrow Donor Program and has over 20 million registered donors in the US. Through its international partnerships and associations, it has access to 13 million additional donors worldwide.
Bone marrow donors are selected by how well 10 of their human leukocyte antigens (HLA) loci match with those of the recipient. HLAs make up proteins of the Major Histocompatibility Complex on the cell surface, and are responsible for distinguishing of self from non-self. A minimum of 6 out of 10 loci match of HLA antigens between donors and recipients is extremely important for the success of the transplant, and to avoid transplant rejection and host versus graft disease. While the highest chances of finding matched donors are within family member between siblings, parents, and children, around 70% of patients do not find matched related donors. In such cases, the only chance patients have of receiving lifesaving bone marrow transplants are unrelated donors through registries like Be The Match.
bethematch.org: How does a patient's ethnic background affect matching?
Currently the biggest challenge the registry faces is its lack of ethnic representation. The likelihood of a white patient finding a matching donor from the registry is 77%, whereas that of a Native American and African American patient is just 57% and 23% respectively. These numbers improve as more people with diverse ethnic backgrounds sign-up, since Individuals within an ethnic group tend to have similar HLA types compared to those outside of it.
Signing up for the registry is easy. You can start the process online by creating an account at https://join.bethematch.org and answering a few questions about your medical history. Within a week, you receive a cheek swab kit in the mail, which consists of two swabs and a return envelope, and instructions on how to collect your DNA using the swab and return it to the registry. Collecting a cheek swab is easy and involves rubbing the inside of your cheek with the tip of the swab for a minute. Once the registry receives your samples you are notified via email that you are part of the registry.
If you are recognized as a potential donor for a patient through the registry, you are contacted for additional blood tests to confirm the match and safety of the transplant. You will then be asked to confirm your willingness to move forward and sign consent forms. Depending on the patient’s requirement and doctor’s recommendation, you would be asked to donate in one of two ways. In certain cases, you would donate peripheral blood stem cells in a nonsurgical procedure, after receiving injections of a drug called filgrastim that temporarily increases blood stem cells. This process is similar to regular blood donation. In other cases, you could be asked to donate bone marrow through a surgical procedure where liquid marrow is drawn from the back of your pelvic bone. Marrow donation is performed under anesthesia and involves a day long hospital stay. While the entire cost of the transplant is covered for the donor, the procedure requires a commitment of 20-30 hours. While some registrants are contacted within days of signing-up, a significant number remain on the registry till they turn 60 years old, without ever being requested for a donation.
Be The Match and similar donor registries are saving lives by connecting patients with potential donors, and their success depends on willing and healthy individuals signing up and being a part of the program. By joining the registry, you could offer hope to one of the 18,000 patients with blood cancer, beta-thalassemia, and sickle cells disease that need a lifesaving bone marrow transplant every year.