By Nina Huang
Northwest Asian Weekly
Janet Liang, who was diagnosed with acute lymphoblastic leukemia at the age of 22, turned her struggle into a national movement by blogging and raising awareness about the need for minority donors. Thousands of supporters joined the “Helping Janet” movement, expanding the bone marrow donation registry in an attempt to help find Janet a perfect bone marrow match.
Unfortunately, Liang passed away last September at the age of 25, a few days after receiving a non-perfect bone marrow transplant.
“Asian patients are passing away, simply because we don’t have enough donors,” said Tanya Nobles, donor recruitment representative for the Bone Marrow Program at the Puget Sound Blood Center.
There’s still hope for those like Jeremy Kong, a 3-year-old who was diagnosed with a rare form of acute myeloid leukemia (AML) last June, but they need near-perfect bone marrow transplants to survive.
It comes down to statistics. There are over 10 million people on the bone marrow donation registry in the United States. Hispanics make up approximately 10 percent, Asian Americans and African Americans make up roughly 7 percent each, and Pacific Islanders and Native Americans make up only 1 percent respectively.
“If a patient is of Asian ancestry, and they’re looking for a match, their opportunities are much worse than if you were Caucasian,” Nobles said.
Nobles reinforced that they want to make sure all patients have the same opportunities for more Asians to register. “The Asian Americans are the only ones that can step up and change these statistics.”
National registration efforts
To increase the number of registrations, several Asian American organizations have worked together to raise awareness of the importance of signing up for the bone marrow registry.
Lambda Phi Epsilon (LPE) has been working with the National Marrow Donor Program (NMDP) as part of their national philanthropy since 1995, the year when one of the fraternity brothers, Evan Chen, was diagnosed with leukemia.
The Theta Chapter at Stanford University organized a joint effort to help Chen find a bone marrow donor and, in a matter of days, over 2,000 people were typed. A match was eventually found for Evan, but unfortunately by that time, the disease had taken its toll on him and he passed away in 1996.
According to UW LPE brother Benny Tran, 136 people signed up for the bone marrow registry through their drive last year, with an average of 70 to over 100 registering at their drive annually.
Saving a life
Two years ago, Ty Huynh Chhor was just 20 years old when she underwent the surgical procedure to donate bone marrow. She had first heard about the bone marrow registry from Lambda Phi Epsilon’s annual drive on the University of Washington campus. Although initially reluctant to sign up, she was eventually typed, thinking that the chance of her being matched with a patient was very slim.
Little did she know, a few months later, she would receive a call informing her that she was the best match. But by then, Chhor had already overcome the fear of donating bone marrow and decided that she wanted to take advantage of the opportunity to save someone’s life.
Chhor stood by the famous quote, “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.”
“I wanted to set an example,” she said. “Even though you’re scared of pain, your fear is really small in comparison to other things that matter the most.”
For those who are contemplating bone marrow donation, Chhor said that each donor is assigned a patient advocate who guides them through the process.
“They are the most informed to help make the right decision for you,” she said.
How to help
There are multiple ways people can get involved. You can register individually by contacting the Puget Sound Blood Center, who can mail you a registration form. You can also host a marrow registry drive to raise awareness and collect registrations.
When someone is a potential match, there are two different methods for the bone marrow extraction procedure: nonsurgical and surgical. The nonsurgical procedure is more common and makes up 75 percent of the extractions. The nonsurgical procedure takes roughly four to six hours. You’re attached to a machine that filters the stem cells out of your blood and pumps the blood right back into you.
Chhor underwent the surgical method that is an outpatient procedure that requires the donor to be under general anesthesia. Doctors extract bone marrow from the donor’s pelvic bone, requiring bedrest for two to three days.
Nobles emphasized that there are never any costs to donors for the processes. There’s also a wage reimbursement program for any lost wages up to $24/hour to the donor. There are no significant risks to donors either.
A year after the transplant, the patient has a choice to meet with their donor, but Chhor’s match decided that they didn’t want to meet her after the transplant for undisclosed reasons.
Chhor preferred to stay anonymous anyway. “I don’t want him/her to put a face to a good deed,” she said. “I’d rather give a helping hand if need be.” (end)
Nina Huang can be reached at email@example.com.