Join a bone marrow donor registry; you just might save a life
April 28, 2014 | by Nicole White
For many patients with hematological cancers, transplantation is their best – and sometimes only – chance at a cure.
These lifesaving hematopoietic transplants use bone marrow, stem cells or cord blood cells to replace a patient’s faulty cells, which are critical to a healthy and functioning immune system.
Each year, thousands of patients rely on the generosity of anonymous donors to provide the cells they need for transplantation, as family members are not always a match. At City of Hope, between 500 and 600 bone marrow transplants are performed each year, and in almost half the cases, an unrelated donor is needed.
“Thousands of patients each year would benefit from a transplant from an unrelated donor, but unfortunately, many of these patients still do not have a match,” said Jill Kendall, program director for Be the Match at City of Hope. “It’s important to increase the number of people on the bone marrow registry and add diversity. There’s an increased need for people of mixed ethnic background and minorities to join the registry as they are underrepresented.”
More than 6,500 bone marrow, stem cell or cord blood recipients, their families, caregivers and donors are poised to convene at the Bone Marrow Transplant Reunion on May 9, City of Hope’s 38th celebration of these patients and the people who gave them a lifesaving gift.
Be the Match offers the following guidelines and information for people interested in potentially becoming hematopoietic cell donors.
What’s the first step?
The first step to becoming a bone marrow donor is to join the Be the Match Registry, operated by the National Marrow Donor Program, a nonprofit organization based in Minneapolis that operates the largest and most diverse registry of volunteer hematopoietic cell donors and umbilical cord blood units in the U.S. Potential donors provide a swab of cheek cells using a kit either at an in-person drive or through the mail if you join online at cityofhope.org/bethematch.
What’s the commitment?
Donating is always voluntary. As a member of the registry, you are asked to keep your contact information updated, inform the registry if you have significant health changes or if you change your mind. In addition, please respond quickly if you are contacted as a potential match. Agree to donate to any searching patient who matches you, and stay on the registry until your 61st birthday – or until you ask to be removed. Respond immediately if you do not wish to donate, so the search for another donor can continue without dangerous delays for the patient.
How old must you be to donate?
According to the Be the Match Registry, donors between age 18 and 44 provide the greatest chance for transplant success. The point of the guidelines is not to discriminate, but to provide the best possible outcomes for patients. However, anyone between the ages of 18 and 60 who meets the health guidelines and is willing to donate to any patient in need may join the registry. However, as we age, the chances of complications resulting from any medical procedure increases.
If I’m a match, then what?
First, it’s important for the potential donor to respond as quickly as possible if approached to donate cells or marrow. About one in 500 members of the registry go on to donate.
Donating peripheral blood stem cells is a nonsurgical procedure, called apheresis. For five days leading up to the donation, the donor receives injections of a drug to increase the number of blood-forming cells – or blood stem cells – in the blood stream. On the day of the donation, the donor’s blood is removed through a needle in one arm and passed through a machine that will collect only the blood stem cells. The remaining blood is them returned through a needle in the other arm – a process similar to donating blood platelets. Three-quarters of all of these types of donations are completed in a single apheresis session, which may take up to eight hours. The rest are completed in two sessions of four to six hours each.
Donating bone marrow is a surgical procedure performed in an operating room. Depending on the hospital, the donor may leave the same day or may spend one night in the hospital. The marrow is collected from the back of the pelvic bones. Typically, the donor will lie on his or her stomach, and the surgeon will make one to four small incisions through the skin over the back of the pelvic bones.
The incisions are less than a quarter-inch long and do not require stitches. Then, a hollow needle is inserted through the incisions and a syringe is attached to the needle to draw out the marrow.
Does it hurt?
For those donating by apheresis, the procedure is no more uncomfortable than donating platelets. For those undergoing a surgical procedure, donors receive anesthesia to block the pain. If a general anesthesia is used, the donor is unconscious during the donation. A regional anesthesia – spinal or epidural, such as what’s used for c-sections or to relieve labor pains – may also be used, blocking all sensation to the affected area. General anesthesia is more commonly used in those donations facilitated through Be the Match.
Are there side effects to donating bone marrow?
While the donor experiences no pain during the donation process, discomfort and side effects vary from person to person. Common side effects are back or hip pain, fatigue, headache, muscle pain and bruising at the collection site. Most people are back to their usual routines within a couple of days. More than 98.5 percent of bone marrow donors on the Be the Match Registry feel completely recovered within a few weeks of donating.
Will my immune system be weaker if I donate?
No. The amount of bone marrow donated will not weaken the donor’s immune system. The average amount of marrow and blood donated is about one quart.
Do race or ethnicity play a role in matching?
These are important factors because patients are most likely to match someone of their own race or ethnicity – and diversity among the donor registry is lacking. Greater diversity among those registered to donate increases the likelihood that all patients will find a match. Patients especially need donors who are black, American Indian, Alaska native, Asian, Pacific Islander, Hispanic and multiple race.
Finally, donating is always free to the donors. Be the Match reimburses travel costs, and may reimburse other costs, also. All the medical costs are covered by the registry or by insurance.
If you’re not eligible to become a donor yourself, there are other ways to help through fundraising, hosting a drive, volunteering or just spreading the word.
Two bone marrow recipients will get the chance to meet their donors at City of Hope's Bone Marrow Transplant Reunion on May 9. One is genre-defying musician George Winston; the other is 17-year-old Kayla Saikaly.
Winston wants to say "thank you" in German. Watch his story.
Kayla has questions, many questions for her donor. Watch her story.