When 2004 UCLA alumnus Matthew Nguyen was recruiting bone marrow donors in college, he had no idea he was contributing to a registry he’d eventually have to depend on to save his own life.
At UCLA, Nguyen was the director of community health within the Vietnamese Student Union and actively worked to register donors throughout Southern California.
After graduation, he moved on to pharmacy school in Virginia, but he returned to California to be a pharmacy intern in 2007.
Before starting his second pharmacy rotation, Nguyen was checked into the emergency room for a bloody nose that wouldn’t stop.
After having blood tests performed, Nguyen said his doctor told him that he had acute myelogenous leukemia ““ there were no platelets in his blood, leaving him incapable of naturally clotting.
Nguyen became a patient at the hospital where he was supposed to work.
“People don’t really know that it can happen to anyone,” Nguyen said. “Ironically, it happened to me. I didn’t think it would happen to me.”
He started chemotherapy almost instantly. Every two to three months, Nguyen checked into the hospital for treatment that lasted about 35 days.
“I can’t work. Life is put on hold,” Nguyen said. “You can’t plan ahead, and there is an inconsistent schedule with being in and out of the hospital.”
Five rounds and 16 months later, Nguyen finished treatments and made plans to return to pharmacy school and marry his fiancee, Chloe ““ a wedding he had been planning during treatment.
Unfortunately, the cancer resurfaced in February of 2009, and this time, finding a donor is his only option to be free from leukemia.
“I just want to be normal. I want my life back,” Nguyen said.
Because compatibility between registrant and patient is dependent on matching tissues and cells, it is more likely for a match to be found among direct family members or people of the same ethnicity.
A new search for a match is done for Nguyen about every two weeks, but a severe lack of underrepresented donors makes it difficult for Nguyen and others to find marrow matches. Out of 7.5 million donors, only 7.2 percent are Asian.
Asians for Miracle Marrow Matches is an outside organization working throughout Southern California to recruit donors in Vietnamese, Chinese, Pilipino, Korean, Japanese and South Asian communities.
It was after a Marrow Matches presentation at school that Nguyen registered to be a donor himself.
Ji Eun Lee, a representative from the organization and UCLA alumna, has worked to bring more minorities into registries through her volunteer efforts in college and work since graduating in 2007.
Less than 30 percent of all registered donors are underrepresented, and an even smaller percentage represents Asian donors.
“There are so many subgroups and ethnic groups within each minority, making it virtually impossible for minority patients to find a match,” Lee said.
Lee also said that misconceptions and a lack of knowledge about the registration and donation process probably inhibit many people from stepping forward.
For example, one of the major assumptions is that bone marrow is extracted from the spine, suggesting that it is painful and dangerous.
In fact, bone marrow is collected from the rear of the pelvic bone, which is a larger bone and a good source of marrow and stem cells.
In such cases, anesthetics and a hollow shot are used and the process is minimally invasive.
After finding out he was a perfect match for his father’s friend, second-year history student Shannon Cone donated stem cells when he was 18.
Cone went through an alternative method of donation in which he was injected with drugs to draw the stem cells out of the marrow and into the blood stream.
The blood was drawn, and stem cells were then filtered out.
For those who have given platelets, the procedure is similar.
“It’s really not that bad at all. I think that more people are scared because it seems like a bigger deal,” Cone said.
During Bruin Health Week earlier this quarter, volunteers from Asians for Miracle Marrow Matches and Vietnamese Community Health at UCLA held a three-day donor registration drive. The event registered 327 new donors.
“What if it happened to you or a loved one?” Nguyen said. “Wouldn’t you want to know that there are people registered already?”
Registration does not guarantee a new donor would be a match for someone.
“Bone marrow drives and registration are an ongoing process,” Lee said. “We can’t forget that, unfortunately, many patients still haven’t found a match among new registrants and are still searching.”
To get more people to register, Lee said one-on-one conversations with individuals let them know what the process is actually like and might help reduce the fear that is associated with marrow donations.
Lee said her organization hopes to hold another bone marrow registration drive at the end of the quarter.
“I just want people to take a few minutes to listen and register,” Nguyen said. “If you give a little, you can save a lot. A life.”