By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
The second in a four part series.
Unlike the American Cancer Society or the Red Cross, the National Marrow Donor Program doesn’t have a strong national presence. One reason may be attributed in part to the general public’s strong association of pain with the procedure–a prospect that causes instant rejection for most people.
Another reason may be the waiting period to become a donor, which varies depending on one’s human leukocyte antigen typing. While some can become donors right away if there is a patient with the same HLA typing on the registry, others may have to wait indefinitely. By that time, many potential donors are no longer available due to any number of reasons, including pregnancy, sickness, or having second thoughts.
Additionally, once selected as a potential donor, check-ups and blood samplings must be performed, usually from three to five times, depending on the situation. Taking a half-day off from work or school schedule that many times may discourage some potential donors.
In fact, 60 percent of registered Asian donors decline donation after being selected as potential donors, according to Asians for Miracle Marrow Matches (A3M).
A3M advises that registered donors have the right to decline donation at any time until the procedure day, but patients have been battling against time and many have received a medication in preparation for their procedure, so not only the patients’ health concerns, but their mental burden needs to be considered. A3M also implores potential donors who are looking to back out to decline early whenever possible.
To help ease the potential donors’ burden, a bill supporting employment leave for organ and bone marrow donation was introduced by Sen. Mark DeSaulnier of Concord, Calif on Feb. 19.
Existing law requires that employees of the state who have exhausted all available sick leave be permitted to take a leave of absence with pay, not exceeding five days for bone marrow donation, as prescribed.
This bill, SB 1304, consists of four provisions: it requires a private employer to permit employees to take paid leaves of absence, similar to those currently available to public employees, for the purposes of organ and bone marrow donations; it requires a private employer to restore any employee returning from leave for organ or bone marrow donation to the same position held by the employee when the leave began or to an equivalent position; it prohibits a private employer from interfering with an employee taking organ or bone marrow donation leave; and it creates a private right of action for an aggrieved employee to seek enforcement of these provisions.
According to Be the Match, as of 2008, a total of 11 states have a similar law. Patients who have been waiting for a donor are hoping that this action will lead more people to register in California.
A Phone Call After 15 Years
Born in South Korea and living in the U.S. since the age of nine, Palos Verdes resident Tony Kim suddenly received a phone call two years ago from Be the Match telling him, “You might be a possible match. Would you like to take some blood tests?” Kim didn’t understand why he received such a phone call at first and tried to put the pieces of the puzzle together.
Fifteen years ago, while he was still in college, one of his fellow Asian church members was diagnosed with leukemia and needed a bone marrow transplant.
“The Father asked us if all the church members could donate blood to see if there was a match,” Kim recalled.
Kim volunteered to submit his blood sample, “Because I knew Asians are likely matched for Asians and Caucasians are matched for Caucasians. So I did it and forgot about it.”
At that time, potential donors registered by providing a blood sample. Today a sample is collected with a cotton swab by collecting cheek cell samples.
His first reaction to the phone call was, “Maybe you have the wrong person.” To clarify, he went to a clinic for a blood test, which confirmed the personal information they had for him was correct.
He started researching bone marrow transplants, diseases, procedures, and side effects. He said he learned “basically what I’m going through for five hours is nothing compared to what patients go through. They do chemo everyday, lose their hair, and get so many shots and tests after tests… There is so much pain and waiting and hoping for a match. For me to think otherwise is just selfish.”
Kim’s test results indicated a 99.9 percent match. They asked him what he wanted to do.
“I really didn’t need to think about it. The research I did made me want to become a donor even more,” he said.
Recipient is a 14-year-old Japanese Girl
A then-14-year-old Japanese girl was Kim’s match. His doctor chose peripheral blood stem cell transplantation (PBSCT), a non-surgical outpatient procedure to collect blood-forming cells, for donation. About 75 percent of the procedures performed in the U.S. are now PBSCT.
In preparation, Kim received injections of a drug called filgrastim to move more blood-forming cells out of the marrow and into the bloodstream. Although the number of injections varies per donor, Kim received the injection four times, three prior to and one on procedure day.
The procedure requires Kim’s blood to be removed through a needle in one arm and passed through a machine that removes the stem cells from the blood. The rest of the blood is then returned to Kim through his other arm, taking five to six hours.
“After the procedure, I felt a little dizzy, but the pain was just like a flu shot. It didn’t hurt,” he explained. The only discomfort he felt was in his arms because he had to hold them straight for five to six hours. Other than that, “Everything was just fine.” He was released from the hospital an hour later.
Kim, who works as a restaurant manager at Hama Sushi in Venice for his mother-in-law, Esther Chaing, has held several charity events for the Leukemia and Lymphoma Society, to encourage people to register.
“It’s a really simple procedure,” he explained. “It doesn’t hurt. It’s just a little discomfort for us, but it’s a lifesaving experience for the patients.”
Kim’s employees are from diverse backgrounds—Japanese, Korean, Latino, Caucasian, and racially mixed. Kim intends to ask A3M to come to the restaurant and have his staff registered in the near future.
Donors receive follow-ups about the recipients’ conditions and a year after the procedure, donors and recipients are allowed to meet in person if both sides agree. It’s been two years since Kim’s procedure, but he hasn’t heard anything about the recipient.
According to A3M, this kind of situation sometimes occurs when a recipient lives overseas because each county has its own regulations on privacy. In Japan, donors and recipients are never allowed to meet. They can only exchange letters, leaving out any personal information.
“I just want to make sure that she is OK,” Kim said. “I still wonder how she is doing. If you think about it, she is part of me. I don’t know where she is, but I want to meet her someday.”
For more information about bone marrow transplants, call A3M at (213) 625-2802 ext. 103 or visit www.A3Mhope.org. You can also find more information on the National Marrow Donor Program at www.bethematch.org.
In tomorrow’s Rafu Shimpo, a noted UCLA specialist discusses the benefits and the risks of donating bone marrow.