1. WHY IS THERE A NEED FOR PEOPLE TO REGISTER WITH SAMAR AND JOIN THE BE THE MATCH REGISTRY?
Every three minutes, one person is diagnosed with a blood cancer. Every 10 minutes, someone dies from a blood cancer. That’s more than six people each hour, or 148 people each day. Patients are searching for a cure. It could be you. Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases depend on the Be The Match Registry® to find a match 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 an official partner of the Be The Match Registry and coordinates marrow registry drives to add more volunteer donors to the registry, thereby increasing the chances of patients in need finding a matching donor. SAMAR’s focus is minorities with an emphasis on South Asians.
2. WHAT IS A MARROW TRANSPLANT?
A marrow transplant is a life-saving treatment for people with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases. 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 close 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.
3. IS THERE AN AGE RESTRICTION TO BECOME A MARROW/BLOOD STEM CELL DONOR?
Registrants must be between 18 and 44 years and in good general health.
4. WHY ARE YOUNGER DONORS PREFERRED?
If you are between the ages of 18 and 44, patients especially need you. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. That’s because younger donors produce more and higher-quality cells than older donors. If you are over the age of 44 and want to register, you can do so online at www.marrow.org
5. WHAT IS HLA?
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 non self. Matching marrow recipients and their donors for their HLA type has been shown to greatly increase the likelihood of a successful transplant. HLA genes are inherited. There are millions of marrow types in the general population, and population genetics has shown that there is a great likelihood of these genes being confined to a race/ethnic group. Thus, the greatest chance of finding a matched marrow donor exists within the patient’s own racial group. There is a good possibility for South Asians in finding a match in their own community because they are so diverse in their roots due to cross race. A large number of potential donors must be educated and registered to increase the chances of our patients finding a match.
6. DOES RACE OR ETHNICITY AFFECT 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.
Members of these backgrounds are especially needed:
• Black or African American
• American Indian or Alaska Native
• Asian, including South Asian
• Native Hawaiian or other Pacific Islander
• Hispanic or Latino
• Multiple race
SAMAR is proud to mention that with some lobbying from our end, the Be The Match is now printing informative brochures in five different South Asian languages: Hindi, Gujarati, Punjabi, Bengali and Urdu. We also have some materials in Spanish, Korean, Vietnamese, Japanese and Chinese.
7. HOW DO I REGISTER AS A MARROW/STEM CELL DONOR?
You can register as a volunteer marrow/blood stem cell donor at any SAMAR marrow registry drive. To find a drive near you, visit our drive calendar.
You can also request to conduct marrow registry drives at various venues, including conferences, conventions, offices, 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 even train you and your volunteers, so that you will become SAMAR Authorized Volunteers.
8. WHAT DOES THE REGISTRATION PROCESS ENTAIL?
The registration process is fairly easy. You have to fill out the Donor Registration and Consent for HLA Typing form and also the SAMAR Retention Questionnaire. This typically takes less than ten minutes.
Then each donor then has to brush the swab against the inside of their cheek using four buccal swabs (cotton-tipped applicators or large Q-tips) for ten seconds each using the same force used to brush your teeth. Buccal swabs are used to collect cheek cells from inside the mouth. These cheek cells provide DNA for HLA testing, which is used to determine a match between a donor and patient.
After each swab is done, place the swab in the holder provided, place the holder in the envelope and seal it. The registration process is now complete.
SAMAR will process the forms and ship to the Be The Match Registry for data entry in order to be added to the registry. The swabs are sent to the lab for testing and the results will be placed in the registry to be searched by the thousands of patients in need.
The Registry conducts computerized searches to identify potential donors to match the HLA type of the patient. Please keep in mind this is only the registration process and not a donation to a patient.
9. DOES THIS MEAN I WILL NOT HAVE TO GIVE A BLOOD SAMPLE?
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.
10. WHAT HAPPENS WHEN A PERSON COMES UP AS A PRELIMINARY MATCH TO BE A POTENTIAL MARROW/BLOOD STEM CELL DONOR?
A representative from SAMAR or the 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. You will be asked to sign a Confirmatory Testing consent form which will have to be faxed or emailed back to the representative.
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.
11. WHAT IS THE PROCEDURE FOR DONATING?
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 donation. 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 does is not effected by the missing marrow. This procedure is done 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 75% of the time.
12. WHAT ARE THE RISKS AND SIDE EFFCTS?
More than 50,000 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.
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.
13. HOW LONG DOES IT TAKE FOR A MARROW DONOR TO RESUME NORMAL ACTIVITIES?
Recovery times vary depending on the individual and type of donation. Most donors are able to return to work, school and other activities within one to seven days after donation.
14. IS THERE A COST ASSOCIATED WITH JOINING THE REGISTRY?
The total cost to add a new member to the Be The Match Registry is about $100. This includes the cost of the testing needed to match donors to searching patients and related costs.
SAMAR relies on financial contributions to help cover the costs of adding members to the registry. Others have contributed toward the costs for you to join today. However, there are not always enough funds to cover the numbers of donors needed, so sometimes new members are asked to pay some of the registration costs when they join. SAMAR makes every concerted effort to use the funds we have for where the greatest need is without having to charge new registrants.
Your contribution will make it possible for more people like you to join in the future. Every gift helps make life-saving transplants a reality for more patients — make a tax deductible contribution today!
15. IS THERE A COST TO DONATE MARROW OR BLOOD STEM CELLS?
There is no cost to the donor. Medical examinations and hospital expenses are paid by the recipient.
16. WILL I HAVE TO TRAVEL TO THE LOCATION OF THE PATIENT?
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.
17. WHO WILL BE TOLD I AM A 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 otherwise authorized by you.
18. WHAT SHOULD I DO IF MY FAMILY IS NOT ALLOWING ME TO DONATE?
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.
19. HOW LONG DO I HAVE TO DECIDE WHETHER I WANT TO DONATE?
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 not to donate at any time, but the later in the process the decision, the more detrimental in can be to the patient.
20. DOES MY RELIGION ALLOW FOR DONATION?
Donating marrow is a very personal choice and for some religious beliefs plays an important role in their decision. The following links provide more information about what different religions say about organ and tissue donation: http://www.organdonor.gov/about/religiousviews.html
21. CAN I REGISTER IF I AM PREGNANT?
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 are currently pregnant or planning on becoming pregnant, please consider donating your baby’s umbilical cord blood after your baby is born.
22. WHEN CAN I MEET THE RECIPIENT?
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.
23. IF I’M OVER 60, WHY CAN’T I JOIN?
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 more and higher-quality cells than older donors.
24. WHY DOES A PERSON HAVE TO BE 18 TO JOIN? CAN’T MY PARENT SIGN THE CONSENT FOR ME?
An individual must be 18 to donate because donation is a medical (for PBSC donation) or surgical (for marrow donation) procedure and the person undergoing the procedure must legally be able to give informed consent. A guardian or parent cannot sign a release or give consent for someone under age 18, because unrelated marrow donation is a voluntary procedure and is not directly beneficial or life-saving to the volunteer donor.
25. IF I JOIN THE BE THE MATCH REGISTRY, HOW LIKELY IS IT THAT I WILL DONATE TO SOMEONE?
On average, one in every 540 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.
26. WHAT IS MY COMMITMENT IF I JOIN?
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
You have the right to change your mind about being a donor at any time. Donating is always voluntary.
If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous delays for the patient.
27. I’M ALREADY ON THE NMDP REGISTRY. DO I NEED TO JOIN THE BE THE MATCH REGISTRY, TOO?
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.
28. I THINK I MAY HAVE ALREADY JOINED. HOW CAN I VERIFY THAT I AM ON THE REGISTRY?
Be The Match Registry is the new name for the National Marrow Donor Program (NMDP) Registry. Whether you joined the NMDP Registry or Be The Match Registry, online or in person, you are part of the same registry and do not need to join again. If you have previously given a blood sample or cheek cell sample to be tested for the registry, you do not need to join again.
If you are unsure whether you joined, you can contact us at 1 (800) MARROW-2.
29. SHOULD I SIGN UP AND BE TESTED TO BECOME A POTENTIAL MARROW DONOR?
Deciding to become a potential marrow donor requires careful deliberation. 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.
**As per www.marrow.org