by Marissa Minna Lee // CONTRIBUTER

Fifth-year international development studies major Janet Liang had big plans. Before pursuing a lifelong career in teaching, she was going to spend fall quarter studying abroad and practicing herFrench in Paris. But her plans were halted. On August 24, 2009, during her pre-travel physical exams, Liang was suddenly diagnosed with acute lymphoblastic leukemia. As fall quarter unfolded, Liang would spend her time undergoing intense chemotherapy treatment.

Liang's case is not uncommon. As an undergraduate student at UCLA in the late 1990s, Matthew Nguyen volunteered for Asians for Miracle Marrow Matches (A3M). He spent his weekends registering potential donors to help patients in need. Years later, a bleeding nose incident that wouldn’t stop led to a diagnosis of acute myelogenous leukemia. Engaged to be married and enrolled in pharmacy school, Nguyen was forced to put his life on hold. He later learned that he would need a marrow donor for himself. Leukemia can strike anyone, at any time, but when an Asian American is diagnosed, the chances of finding a marrow/stem cell donor—the key to a lasting recovery—are especially dire.

"We really need help; there are so few minorities registered," said Gloria Chi, the Chinese Outreach Recruitment Coordinator for A3M. "When there is a patient, it is very difficult to find a match. Just by registering, you are doing something very, very important. Expanding the registry of donors is one of the more concrete ways we can help our community."

While a white patient may have an 80 percent chance of finding a match, the odds are significantly lower for a Chinese American such as Janet or a Vietnamese American such as Matthew. People with completely different backgrounds can be matches, but donors are much more likely to match recipients if they have similar ethnic ancestry. Less than 5 percent of the Asian American population is in the National Marrow Donor Program registry. "I used to do this for people I didn't know," Nguyen said. "Now I'm the one in need. It could happen to anybody. What if someone you know or someone in your family needs help in the future? Wouldn't you want to know that there are people in the registry who can help save their lives? It's not just for me, it's for everybody."

Correcting Misconceptions

Joining the registry is as easy as rubbing a few cotton swabs in the mouth. It's even possible to order a free kit online and to mail in a cheek cell sample from home.

"Even with the swab, people have a lot of misconceptions about the donation process," Nguyen said. "They think it will hurt, or poke their spine or they'll have less marrow than they had before. Technology has made things a lot easier and less painful for people who donate." Nguyen says that Hollywood has dramatized marrow donation to make it look more complicated and painful than it actually is. According to A3M, 74 percent of modern marrow donations are no longer performed via surgical removal of marrow from the hip bone, but through Peripheral Blood Stem Cell (PBSC) donation, a process similar to donating blood platelets. No surgery is involved in this form of donation.

"The donation process is never going to be as hard as it is for the patient who is receiving the marrow," Liang said. "If you're ever scared, just know the patient will go through the pain for you. We will go through the thirty days posttransplant and the recovery."

Red Tape, Red Blood Liang is a fighter. In addition to fighting cancer, she also spent time and energy fighting her insurance company over policies that delayed her diagnosis and continue to delay her treatment. Liang recalled an incident during summer session, prior to her diagnosis, when she was waiting to receive her first blood transfusion after her hemoglobin level fell dangerously low. "I was as pale as a vampire and I needed blood," Liang recalled. "And I get a last minute phone call from insurance saying, 'You can't get the transfusion because you need to prove you are a student.' I literally had to say, 'Please, I am a student. I cannot hike up to Murphy Hall right now. I will faint. I can't express how much I need blood right now.' I was literally begging them over the phone."

This incident was just one of many conflicts that Liang has had with her insurance company over the course of her care. She is even at risk of losing medical coverage because she is unable to meet the criteria of a full-time student, even though it is physically impossible for her to have a normal student schedule.

"Patients like Matthew and I cannot just sit idly by and say everything is taken care of for us," Liang said. "We have to aggressively fight for our lives—push for things, beg for things, say 'No, we're not going to take no for an answer.' Now I know I have the right to be forceful with insurance."

Liang finally convinced the insurance company to relent and grant her an emergency authorization. She received a blood transfusion from the UCLA Blood and Platelet Center blood bank. She would later witness countless blood transfusions for other patients during her hospital stays.

"People think donated blood is just sitting there in storage, but no, it’s used," Liang said. "If you donate blood, they will use it. I bet I probably got some university student blood!"

The Search for a Donor

After two years of searching and waiting, Matthew Nguyen finally received a marrow donation in September of 2009. But the search for a donor was daunting and at times, discouraging. The registry contacted the first potential donor on Nguyen's behalf in June of 2009. Initially, she told the registry she was unavailable until later that summer. By August, she was no longer in the registry.

"Either she had a medical condition to disqualify her, or she withdrew from the registry," Nguyen said. "I will never know why she didn't donate. Was she just scared? Why wouldn't she do it? It's frustrating to know someone is out there, who you know can save your life, but they just won't do it."

Nguyen stressed that people who register to be a potential donor should understand that they are making a commitment.

"People say, 'If you get called, you can decide later,' but that's not a good thing to do. Then they won't be sure about it when they're called. I want to make sure [registrants] understand that this is a commitment they're making. It's better to know that they're going to do it," Nguyen said.

Luckily, Nguyen was able to find another donor and go through the recipient process. Thanks to an anonymous 24-year-old woman from somewhere in the United States, he has received a new, healthy immune system.

"As soon as I can meet my donor I'm going to give her a big hug," Nguyen said. "I'm excited and happy that she went through the process to help save my life and there's nothing I can do to repay her—because that's the biggest thing you can do, to save someone."

Post-transplant, Nguyen was closely monitored by hisdoctors for side effects, including several check-ups and a stint living in a patient apartment on the hospital grounds. While he is still in recovery, he is growing stronger every day and already reapplying for pharmacy school.

"Every day you get happier and happier," Nguyen said, "because you're gaining your life back, and able to tell people: 'I found a donor!'"

Helping Janet

Along with friends and family members, Liang has kicked off a grassroots movement via the internet (www.helpingjanet.com) to encourage minorities to register with the National Marrow Donor Program.

"I need to find someone out there in this whole world, who with some luck can match my HLA protein markers in just the right way," Liang said. "What kind of cancer is so unique in that sense—in that it makes the whole community so aware and somewhat responsible for saving someone else's life?"

During the first week of November, Asian American fraternity Lambda Phi Epsilon and A3M held a marrow donor registration drive in locations scattered across the UCLA campus.

Third-year economics major James Vo, coordinator of the Lambda-A3M drive, said the registration process was pain-free and took only a few minutes, having registered 240 people.

Interested registrants who missed the Lambda- A3M drive in November can visit www. helpingjanet.com for details on how to register from home with the mail-in kit. The entire process is free for ethnic minorities and also free to anyone with the code TEAMJANET.

"No one should ever feel that we're wasting our time by being so aggressive in widening our pool," Liang said. "No registered donor is a waste. This is a group effort. If not me, then it will help someone else."