Frequently Asked Questions
Q: What is Swab a Cheek, Save a Life?
A: We are a campaign of the Gift of Life Bone Marrow Foundation (“GOL”), which changed the odds of Jewish patients finding matches from less than 5% in the early 1990s to greater than 70% today. Borrowing from GOL’s model, the mission of Swab a Cheek, Save a Life is to increase the racial and ethnic diversity in the bone marrow registry by:
- Recruiting potential donors for those groups who are underrepresented in the bone marrow registry (African American, Hispanic, Asian, multiracial patients, etc.).
- Keeping donors enrolled in the registry by: (1) educating donors so they understand what they are committing to; and (2) keeping track of donors, as they relocate, so that they remain in the registry and available to anyone who is in need of a bone marrow transplant.
Q: Why should I join the registry?
A: Since tissue-type is inherited from our ancestors, like eye and hair color, the best chance of finding a genetic match is with people of similar race or ethnicity. Currently, groups such as African Americans, Hispanics, Asians and people of mixed race are severely underrepresented in the worldwide registry, making it that much more difficult for people with life-threatening illnesses such as leukemia, aplastic anemia, lymphoma and sickle cell anemia to find a life-saving match.
Q: What is a breakdown of donors in the national bone marrow registry, by race?
- 73% White
- 9% Hispanic or Latino
- 8% African American or Black
- 7% Asian
- 3% Bi- or Multi-racial
Q: Can I register again if I have registered before?
A:If it has been more than ten years since you last registered, or if you were registered by way of a blood sample, or if you have never received any mail from the bone marrow registry, it is recommend that you re-register.
Q:What do I have to do to join the registry?
A:Prospective donors must be between the ages of 18-60 and in general good health. Testing is simple, and involves a swab of cells from the inside of the cheeks. Swabbing takes less than 5 minutes. The donor is then entered into the bone marrow registry.
Q:How long will I be in the bone marrow registry?
A:You will remain in the bone marrow registry until age 61. If you ever move from your home, you should call our registry and tell us what your new address is, so we can find you if you are a match. If at any time you decide you would not want to make the commitment to donate if called upon, you can call our registry and withdraw your name (561 982-2919).
Q:What happens to my sample?
A:The completed kit is returned to our office along with the consent forms/health history screening form. The forms are scanned into a computer database for tracking purposes. The health history form is reviewed to ensure that the donor meets the eligibility requirements to be in the registry. If the donor meets the requirements, the swabs are sent to the lab for testing/typing. If the donor does NOT meet the requirements, the swabs are sent to the lab for destruction and disposal.
Q:Will my privacy be protected?
A:All donor records are secured in the office under lock and key (an electronic badge system is required for entry). Access is limited to those who require access to the records, and access control is tracked and logged through the computer system. All staff must go through annual privacy training. The computer system is validated and compliant with FDA Part 11.
Q:Is there anyone else who can have access to or use my DNA for purposes other than for bone marrow donation?
A:Access to samples is strictly controlled. Once envelopes are sealed, they remain sealed until they arrive at the lab, in order to preserve the chain of custody.
Q:If I were to get sick, won’t one of my relatives be my perfect match?
A:Not necessarily, but testing would most likely be done on brothers and sisters first, to determine if they are a match. Only 30% of patients have a relative who is a match; the remaining 70% must search the bone marrow registry.
Q:If identified as a match, what are the steps in donating?
A:There are three basic steps:
1. Confirmatory Typing
If identified as a match, the next step involves collecting a blood sample which will be evaluated by the patient’s transplant center to see how well the patient and donor match and to determine if the donor is in good health. Donors will be contacted by telephone or mail if they are a potential match.
2. Medical Work Up:
If results from the confirmatory typing show that the individual is a match, the transplant center may request a physical exam and health history evaluation. This begins with an information session, and is followed by tests to make sure the donor is healthy enough to proceed with the donation.
3. Donation – Bone Marrow vs. Stem Cells: If the donor is medically cleared based on the results of a health history screening and a physical exam, he or she is scheduled for the donation. Depending on the request from the transplant center, the donor will be asked to donate either bone marrow or blood stem cells.
Donating blood stem cells is considered to be a more contemporary/cutting edge form of donation, which is utilized in more than 80% of transplants.
Q:What are blood stem cells?
A:Blood stem cells circulate in the blood and produce new blood cells.
Q:How are blood stem cells collected?
A:Currently in the United States 80% of the donor requests are to collect stem cells from the blood rather than the bone marrow. This is done in a similar manner to donating blood or platelets. In order to collect a sufficient quantity of stem cells, injections are given to mobilize stem cells to travel from the bone marrow into the circulating blood. The stem cells are collected through a procedure where a cell separating machine filters out the stem cells. No anesthesia is used or required during this procedure.
Q:What is bone marrow?
A:Bone marrow is found in the hollow cavities of the body’s large bones. In adults, marrow produces new blood cells.
Q:How is bone marrow collected?
A:Bone marrow is collected from the rear of the donor’s pelvic bone. There is no cutting or stitching, as the procedure involves a needle aspiration, performed under an anesthetic. Typically, the donor enters a medical center’s outpatient facility in the morning and goes home in the afternoon. In the United States, this procedure is used less than 20% of the time.
Q:Can I choose the procedure I prefer (bone marrow vs. stem cells)?
A:The transplant physician decides which stem cell product is the best for his or her patient. There are clinical reasons why one may be better than the other for a particular patient.
Q:What are the risks to my health?
A:Like any invasive procedure, there will always be risks, no matter how small. All risks are explained in an information session if you are match, and outlined in the consent forms that a donor signs at the time of workup, and for the actual procedure. Generally, risks associated with donation through the hip would be those pertaining to general anesthesia (like any procedure requiring anesthesia). Other risks might include infection at the needle site, nerve damage, etc. Adverse events are unlikely and have only occurred in less than 1% of donations.
Q:How fast does my marrow or stem cells regenerate?
A:Bone marrow regenerates within 4-6 weeks. Donors can give marrow many times throughout their lifetime.
Q:If I am a match, where will I donate my marrow or blood stem cells?
A:There are regional collection centers throughout the country.
Q:What if I am a match for someone who lives in another country?
A:You will not be required to travel out of the country to do your donation. Your donation will take place at U.S. collection center, and the sample will then be transported to the patient.
Q:How long will I be away from work, and will I be compensated?
A:The average person who donates through the arm will be back at work or school the next day. The average person who donates through the hip will be back to work or school in a day or two. Donors are not compensated for their donation (in fact, paying a donor is illegal). However, our policies allow for us to reimburse a donor for lost wages (with appropriate documentation such as pay stubs) up to $1,000. Most employers give donors the time off they need for the donation, but not all.
Q:Will it cost me money to donate?
A:No. You will not have to pay for any medical tests or the donation process. The patient’s insurance company pays for the procedure. All donors are covered by an insurance policy that Gift of Life takes out for them, in case of any unforeseen medical needs.
Q:How long will it be until I hear if I am a match for a patient?
A:You may receive the call that you are a possible match for a patient very soon after joining the registry, or years later. As long as you remain in general good health, you may be available as a donor in the registry until your 61st birthday.
Q:If I become a donor, will I be able to meet the recipient?
A:After donation, there is a one year waiting period before you can meet the donor. This has been the policy in the U.S. since 1987. After the waiting period is over, in order to meet, both the donor and the recipient must sign consent forms – it is a mutual process.