It’s a great feeling to know that you have the power to save a life. Thankfully you won’t need to leap tall buildings in a single bound to be a superhero! Instead, you’ll need a cheek swab, a kind and compassionate personality, and the dedication to be someone’s hero when, some day, you receive the call that you are a match! Are you ready to save a life? The first step to join the registry and to get swabbed.
Joining is as simple as spending five minutes to complete a cheek swabbing kit, and returning it in a prepaid envelope. The cheek swabs will go to a laboratory for tissue typing, and that information will be entered in the international registry. Transplant centers can search the registry to find matching donors for their patients. This process, from why donors are needed to cheek swabbing to transplantation, is explained in this section of our website, and we always welcome your questions.
For many blood cancers, immune system disorders, and some inherited conditions, chemotherapy and radiation therapy are not enough to bring about a cure. When no other treatment works, a physician may recommend a bone marrow or peripheral blood stem cell (PBSC) transplant to save a patient’s life. Transplants are the only cure for some diseases.
For the transplant to work, the donor and the patient need to have matching immune system factors, called Human Leukocyte Antigens (HLA). The process of identifying these factors is called tissue typing. With thousands of possible HLA combinations, finding a perfect match can be difficult and some people never find a match. The more people who join the registry, the more people will find matches and be saved.
Even though HLA are inherited, only 30 percent of patients have a matching sibling, therefore 70 percent of patients must search the public worldwide registry for a volunteer donor who is a match. This registry contains HLA data for more than 40 million people, but they are only a tiny fraction of the world’s 8 billion people. Some patients find multiple matches, but some patients do not find any match. This does not mean that a match doesn’t exist, but that any potential match is with someone who has yet to join the registry.
Considering all the donors in the registry, about 1 in every 250 donors is called as a match during any given year. Being called as a match means you are a close HLA match for a patient, but this does not always result in a transplant. First it must be determined exactly how closely aligned your HLA are with the patient’s.
If you are requested by the transplant center for the next step, Confirmatory Typing, there is a 20 percent chance of going forward to Work Up, which is the preparatory process for actual donation. There is no cost to donors; any needed medical exams, and the donation itself, as well as travel and accommodations, are covered by Gift of Life.
If there is more than one match for a patient, which happens in some cases, the transplant center and physician evaluate the matches based on what they feel will work best for that particular patient. Gift of Life does not control which donor is selected.
In accordance with national guidelines and consistent with the medical needs of the patients, Gift of Life has updated the registration requirements for new donors to the ages of 18 to 35 (inclusive). This is due to clinical reasons that improve transplant outcomes. Statistically, over 90 percent of transplants take place with donors in this age category.
Donors who are between the ages of 36 to 60 (inclusive) may still join the registry but will either need to cover the $60 cost of the test or be placed in the queue for processing after the donors in the other category are tested. Unfortunately, neither the government nor insurance covers the cost of testing new donors to grow the registry; recruitment must be conducted with the greatest effectiveness to meet the needs of the patients. All donors will remain in the registry until their 61st birthday unless medically deferred or withdrawn by request.
We recognize that many volunteers are passionate about joining the registry and helping to save a life. However, purely from a biological standpoint and in the interests of what is best for the patients in need, transplant physicians have asked the worldwide registries to recruit younger donors (over 18).
The factors used to match donors with recipients are inherited, like hair and eye color. This means that the best chance of finding a match is between two people with a shared ethnicity. There is an urgent need to diversify the registry, so that all patients can find a donor when one is needed. Currently, many ethnic groups are underrepresented, making it difficult to find matches. For multiracial individuals, this is a particularly difficult challenge. No matter your ethnic background, we encourage you to join the registry, as you could have the amazing opportunity to save someone’s life.
There are two primary ways to join the registry: Order a cheek swab kit or visit a donor recruitment drive in your area.
Your swab kit will arrive in the mail within five business days. Each kit contains several cheek swabs and has instructions printed on the inside. Complete all the information on the swab kit’s upper flap. Please double-check your information for completeness and legibility. Your telephone number and email address are essential for contacting you if you are a match. Use all the swabs in the kit by scrubbing them against the inside of your cheek, then place the swabs back inside the kit and seal it. Do not remove the flap. The kit will also have a postage paid return envelope. Do not discard the return envelope.
Place the entire kit inside the postage paid return envelope. If you have misplaced the envelope, please call our office to have a new postage paid return envelope sent to you. Or, you can place your kit inside an envelope and mail it to our office. The swab kit is processed at Gift of Life, then sent to a laboratory. The laboratory will test the swabs in a process called tissue typing to determine your Human Leukocyte Antigen (HLA) profile, the immune system factors used to match donors and recipients.
Once the tissue typing is completed, that information will be entered in the worldwide registry. Only your unique donor number and HLA factors are shared in the database; your personal information is held in strict confidence by Gift of Life, which follows rigorous security procedures.
If there is a donor drive happening near your location, you can register at the drive. To find a drive near you, click here. To save time, you can pre-register for the drive on the event web page for that drive – just click the drive you want to attend. Once on the registration page, click the “PRE-REGISTER FOR THIS DRIVE” button.
A donor drive will have swabbing stations set up to help people complete their swab kits. Drive volunteers will return all the kits from that drive to Gift of Life in a batch, so there will be no need for you to mail your kit. Drives may be held as part of a larger event, for example, a community health fair, or may be privately organized for many reasons – to celebrate a wedding, family reunion or special occasion, at an office or workplace, a place of worship, or for any other reason.
Patient drives are held to find a matching unrelated donor for a specific patient who does not currently have a match in the worldwide registry. Gift of Life offers support for those organizing patient drives to determine a strategy that offers the best possibilities of finding a matching donor.
If you’re interested in organizing a donor drive, we are happy to help you get started.
Gift of Life uses robust electronic security measures to safeguard the registry’s database. Facilities are secured using limited and locked access for authorized personnel only. Just as your identity is kept strictly confidential, so is that of your recipient; we know only your recipient’s age, sex, and diagnosis. Cheek swabs are tested for HLA markers to see if you match patients in the registry or future patients who need lifesaving transplants. We do not test your DNA for any other purpose.