Every year, over 10,000 patients in the U.S. are diagnosed with life-threatening diseases like leukemia, and their best and sometimes only hope for a cure is a transplant from an adult donor who is not related to them.
Janet Liang was diagnosed with acute lymphoblastic leukemia in August 2009, at age 22. She was in her last year at UCLA, majoring in international development studies and minoring in education. After going through extensive and aggressive rounds of chemotherapy, she was told in June 2010 that her cancer was in remission. In December 2011, one and a half years after being declared cancer-free, she was told that her cancer was back. Liang now has only until April to find a bone marrow donor match before her cancer completely takes over her.
Asian Pacific American artists and entertainers like Far East Movement, Kina Grannis, Kevin “Kevjumba” Wu and Victor Kim have posted YouTube videos urging viewers to get swabbed into the donor registry to help find a match for Liang.
On Jan. 21, Liang created her own YouTube video titled “Finding A Perfect Match for Janet – Her Personal Plea,” which has already been viewed over 360,000 times. Liang asks viewers to please register in the bone marrow registry, especially if they are of Chinese descent. The video starts with Liang, bald and wearing a knit hat, crying and being brutally honest; she’s afraid of dying, she confesses to her audience. She’s scared she won’t find a match in time and begs viewers to please help save her life.
Nadya Dutchin, the national account executive at Be The Match Registry, explained the likelihood of finding a match.
“Asian Pacific Islander patients have an estimated 73 percent likelihood of having a donor on the Be The Match Registry who is willing and able to help save a life,” she said. “Chances of finding a match vary by individual based on their tissue type. Due to genetic diversity, a person’s tissue type may be common, uncommon or rare, which is why we continually strive to increase the size and the diversity of the Be The Match Registry.”
On Feb. 14, Be The Match and the D.C. Metropolitan Asian Pacific American Marrow Network teamed up to host a drive in the university’s Stamp Union to get students to register.
Before the drive started, representative Leona Wang of both organizations said, “We’re hopeful that we can build awareness and help save Janet’s life and other patients seeking a donor match. [Lead director] Hsuan Ou has done an amazing job organizing this multi-campus marrow drive in such a short time frame, but like Janet and other patients suffering from leukemia, there’s not much time for them either.”
“We couldn’t have done it without the Asian American Student Union, Phi Delta Sigma and Lambda Phi Epsilon,” Ou added.
At the drive, 73 people registered in hopes of being a match.
According to Be The Match Registry, 39 percent of the potential donors who joined the registry in 2011 were from racially and ethnically diverse backgrounds, and approximately 70,000 of those potential donors identified themselves as Asian or Native Hawaiian/Other Pacific Islander. However, none of those donors have proved to be a match for Liang, which is why she took to the Internet to urge non-donors to get swabbed and put into the registry.
Liang’s chances of finding a match may also be affected by the untruths believed about marrow donation.
“Unfortunately, myths about marrow donation keep many people from joining the registry and potentially saving a life. Some people don’t join the Be The Match Registry because they have a misunderstanding about how painful the donation process is,” Dutchin said.
“There are actually two ways to donate marrow,” she said. “When you donate peripheral blood stem cells, it is a non-surgical, outpatient procedure similar to donating platelets or plasma. When you donate marrow, you are under general anesthesia and feel no pain during the procedure. Most donors say they would do it again to save a life.”
For now, a frightened but optimistic Liang, along with family, friends and other patients like her, is caught in a nerve-racking game of waiting in hopes of finding the perfect match before time runs out.