Every three minutes someone is diagnosed with a life threatening blood disorder. Every 9 minutes, someone dies, which is 160 people each day. Patients are searching for a cure. It could be you. Thousands of these patients depend on the Be The Match registry to find a cure to save their life.
Patients need donors who are a genetic match (HLA). Even with a registry of millions, many patients cannot find a match. Donors with diverse racial or ethnic backgrounds are especially needed.
SAMAR is a network partner of the Be The Match Registry and coordinates blood stem cell drives to add more volunteer donors to the registry, thereby increasing the chances of patients in need finding a matching donor. SAMAR focuses on registering all committed life-saving donors, from Caucasians and other ethnically diverse communities.
A blood stem cell transplant is a life-saving treatment for patients diagnosed with leukemia, lymphoma and other life-threatening blood diseases like sickle cell disease and thalassemia. First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor’s healthy blood-forming cells are given directly into the patient’s bloodstream, where they can begin to function and multiply.
For a patient’s body to accept these healthy cells, the patient needs a donor who is a match. Seventy percent of patients do not have a donor in their family and depend on the Be The Match Registry to find an unrelated bone marrow donor or umbilical cord blood.
Registrants must be between 18 and 44 years (as of October 1,2021) and in good general health. The Medical Evaluation section of the digital registration form will determine your eligibility. If you are medically deferred and ineligible to be added to the registry, you will be given the opportunity to support the mission by coordinating a registration event or making a financial donation.
You will however be on the registry till the age of 61.
There are no travel restrictions to register.
Research shows that cells from younger donors lead to more successful transplants, as younger donors produce higher-quality cells than older donors.
HLA (Human Leukocyte Antigens) are markers on the surface of white blood cells. HLA forms the basis for recognizing and rejecting foreign tissues i.e. it recognizes self from nonself. Therefore a genetically (HLA) matched donor greatly increases the likelihood of a successful transplant. HLA genes are inherited and play an important part in matching.
- Racial and ethnic heritage are very important factors. Patients are most likely to match someone of their own race or ethnicity. Today, there simply aren’t enough registry members of diverse racial and ethnic heritage. Adding more diverse members increases the likelihood that all patients will find a life-saving match. Thus, the greatest chance of finding a matched blood stem cell donor exists within the patient’s own racial group.
You can also request to conduct stem cell registry drives at various venues, including conferences, conventions, corporate offices as lunch and learns, religious institutions, university/college campuses, birthday & anniversary parties, picnics or even at a private residence.
SAMAR will provide all the materials needed, free of charge and train you and your volunteers, to become SAMAR Authorized Volunteers. The materials provided are giveaways, brochures, banners, laminated posters and patient fliers.
At the time of your registration, you will not have to give a blood sample. But, if you do match a patient, blood will be drawn from your arm for confirmatory testing and infectious disease markers.
A representative from SAMAR or Be The Match will call you to inform you of a preliminary match and confirm that you are willing to donate. After informing you of the patient’s age, gender and diagnosis along with answering your questions, you will be asked to complete a Health History Questionnaire over the phone or online. The representative will also schedule for you to have blood work done at a local lab which is typically scheduled early in the morning as to avoid conflict with work or school. The blood work is for confirmatory testing to make sure you are a good match with the patient and infectious disease markers to make sure you do not have any illnesses that can be passed along to the patient.
If the confirmatory test determines the compatibility with the patient, the donor goes through a counseling session with an extensive explanation of the donation procedure. A complete physical examination is performed to ensure that the prospective donor is medically eligible to donate. The donor has to make a final commitment to proceed with the donation. Arrangements are made for the actual collection only after the donor has made a final decision to donate and has passed the physical exam.
The patient’s doctor will determine which source of blood stem cells is best for the patient and decide on the Marrow Donation or the Peripheral Blood Stem Cell donation.
Marrow Donation: This is a surgical outpatient procedure that takes place at a hospital. You will receive anesthesia and feel no pain during the extraction.. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone (hip bone). The marrow replaces itself completely within four to six weeks. Your body is not affected by the missing marrow. This procedure is done about 20-25% of the time.
Peripheral Blood Stem Cell (PBSC): This is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For five days leading up to donation, you will be given injections of a drug called Filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. The procedure is done about 75-80% of the time.
More than 100,000 unrelated donor-patient transplants have been performed in the United States. To date there have been no reported long term adverse effects to any donor.
After anesthesia subsides, Marrow Donors can expect to feel some soreness in the region where the procedure took place for a few days.
PBSC Donors may experience a headache, bone/muscle aches, fatigue and nausea which are common side effects of the Filgrastim injection. These effects disappear shortly after collection.
There is NO COST to the registrant for enrolling in the registry.
There is no cost to the donor. Medical examinations and hospital expenses are paid by the recipient’s insurance.
In most cases, the donor will not have to travel to the location of the patient to donate. The procedure will be done at a transplant center closest to the donor which might include minimal travel. All costs will be covered by Be The Match.
Confidentiality is very important to SAMAR and Be The Match. Your status as a donor will never be disclosed to anyone including immediate family members as well as the contacts you listed unless authorized by you.
We understand that family members can greatly influence a donor’s choice of whether or not to donate. Educate your family members about the process and how important the transplant is for a patient. SAMAR can set up meetings with Donors, Recipients and Family Members if this will assist the decision making process.
Time is critical for the patient. If you are unsure even at the registration process, please take the time you need to make an informed and committed decision. If you are unwilling or unable to donate, or you are not sure of your commitment and come up as a preliminary match, please tell the representative during the initial call. You have the right to decide but, the later in the process the decision, the more detrimental it can be to the patient.
Donating marrow is a very personal choice and for some religious beliefs, it plays an important role in their decision. The following links provide more information about what different religions say about organ and tissue donation:
You may register yourself as a marrow donor; however, you will be temporarily deferred until you have fully recovered. If you have already registered and were pregnant at the time of registration, please update your information once you have delivered and are fully recovered.
If you have been called as a possible match and are currently breastfeeding, you may want to contact your local donor center to discuss your options.
If you are currently pregnant or planning on becoming pregnant, please consider donating your baby’s umbilical cord blood after your baby is born.
The confidentiality of both donors and patients is very important to SAMAR and Be The Match. Prior to donation, you will only be told the age and sex of the patient as well as the disease affecting him or her. In most cases, direct contact between donors and patients is allowed one year after transplant if both parties agree. Some transplant centers may allow anonymous communication prior to direct contact. However, some countries do not allow for contact between patient and donor.
The age guidelines are in place to protect donors and provide the best treatment for patients:
• Donor safety: As one ages, the chances of a hidden medical problem that donation could bring out increases, placing older donors at increased risk of complications. Since there is no direct benefit to the donor when they donate, for safety reasons we have set age 60 as the upper limit. It is important to note that the age limit is not meant to discriminate in any way.
• To provide the best treatment for the patient: Research shows that cells from younger donors lead to more successful transplants. That’s because younger donors produce higher-quality cells than older donors.
An individual must be 18 to donate because donation is a medical (for PBSC donation) or surgical (for marrow donation) procedure and the individual must legally be able to give informed consent. A parent or guardian cannot sign a release or give consent for someone under age 18.
On average, one in every 460 members of Be The Match Registry in the United States will go on to donate bone marrow or peripheral blood stem cells to a patient. We cannot predict the likelihood that an individual member will donate because there is so much diversity in the population. However, if you are between the ages of 18 and 44, you are 10 times more likely to be called as a marrow donor than other members of the Be The Match Registry. That’s because research shows cells from younger donors lead to more successful transplants. We need committed donors!
We need committed, lifesaving, compassionate donors! A large percentage of donors are saying no when matched, which has detrimental effects on patients. Ethnically diverse communities only have a 29 – 60% chance of finding an available donor on the registry.
When you register with SAMAR to join the Be The Match Registry, you make a commitment to:
- Be listed on the registry until your 61st birthday, unless you ask to be removed
- Consider donating to any searching patient who matches you
- Keep us updated if your address changes, you have significant health changes, or you change your mind about being a donor
- Respond quickly if you are contacted as a potential match for a patient
Unfortunately, 50% of donors who match a patient in critical condition are not committed and say no. Donating is always voluntary.
If you are unable to donate, let us know right away. That way we can continue the search for another donor without dangerous delays for the patient.
Be The Match Registry is the new name for the National Marrow Donor Program® (NMDP) Registry. If you joined the NMDP Registry, either in person or online, you are a member of the Be The Match Registry and do not need to join again. The name has changed, but the goal is still the same. As a member of the Be The Match Registry, you could be the one to save a life.
If you receive emails or letters in the mail from Be The Match, then you are still on the registry. If you do not, we would recommend that you register again. You can register by texting the word SAMAR21 to 61474 or click https://join.bethematch.org/SAMAR21
If you are unsure whether you joined, you can contact us at 1 (800) MARROW-2.
We hope we have answered many of your questions. The next step is up to you. Thank you for taking the time to consider this very important step and potentially registering as a committed and lifesaving blood stem cell/marrow donor.
**As per www.marrow.org