Eventually, he was diagnosed with chronic granulomatous disease, known as CGD, which makes him susceptible to certain bacterial and fungal infections. Even with daily antibiotics and antifungal medications, steroids, an antacid, and a monthly visit to the hospital to receive an infusion, he will suffer from serious infections about every three years.
According to his doctors, a bone marrow transplant within the next two years is his best chance of leading a long and healthy life. Because genetic markers are used to determine matches, donors are most likely to be someone who shares the same ethnic background. Since no one in his immediate family matches, his parents are now seeking help from those willing to get registered, spread the word and host drives to swab potential donors on the spot.
My sons are a little older than Evan, and from time to time, they’ve met at birthday parties and play dates; his father is a friend from college. I’m moved by his plight and his parents’ search for a cure.
Because Evan is of Korean and Chinese descent, his chances of finding a suitable donor are much lower than those of a white person. According to Be the Match, which is operated by the National Marrow Donor Program and manages the largest marrow registry in the world, a patient’s likelihood of an available match is 77% for white people, 46% for Latinos, 41% for Asian Americans, 57% for American Indian and Alaskan Native, and 23% for African Americans.
I asked Christopher Dvorak, chief of the Allergy, Immunology and Bone Marrow Transplant Division at UCSF Benioff Children’s Hospital, about patients like Evan, of mixed Asian descent.
“While we don’t normally suggest that this level of precision is needed, depending on ethnicity, there are some patients for whom there will be zero matches on the National Marrow Donor Program registry, which lists 20 million people,” he told me.
Likewise, African Americans may have European, African and American Indian heritage, which can make a match of that combination harder to find, experts say, in addition to the community’s mistrust of the health care system, due to travesties such as the infamous Tuskegee experiment or today’s disturbing maternal health disparities.
Among Latinos, a lack of awareness and misperceptions of the process may account for the disparity. So too among Asian Americans, who also encompass a vast array of ethnicities with different genetic markers, languages and cultures, said Carol Gillespie, executive director of the Asian American Donor Program, which serves multiethnic communities in Northern California.
Sometimes traditional cultural beliefs may make potential donors hesitate, Gillespie said. Even if individuals don’t subscribe to the belief, they may still be accustomed to listening to their elders.
“If you have a family unit, you have to consider the opinion of elders,” she said, “and parents want to protect their children.”
Along with AADP, other groups focused on diversifying the registry include SAMAR, with a focus on South Asians; the Icla de Silva Foundation, founded in the memory of a Brazilian girl who died of leukemia; A3M (Asians for Miracle Marrow Matches) in Southern California; and the website BlackBoneMarrow.com.
More than two decades ago in college, I got my cheek swabbed and joined the registry at a campus drive for a classmate with leukemia. Though he was matched with a donor from Taiwan, he passed away from complications related to the transplant.
Last year, the registry contacted me because I might be a possible match for a 27-year-old woman. Would I be willing to go through further testing?
Yes, I said. A month and a half later, I received a message that the patient was not ready for a transplant for reasons that could include “a change in the patient’s condition, issues with their health insurance or a delay in finding a caregiver.”
Ever since, I’ve thought about this stranger, fervently hoping that she survived.
People eligible to join the registry are ages 18 to 60, live in the United States, and meet the health guidelines. After registering online, potential donors can send and receive a swab kit by mail. It’s free to join for those 18 to 44. Research has shown that cells from younger donors lead to better long-term survival for patients after transplant.
“You’re not only saving a patient, you’re saving the family unit — sisters, brothers, aunts, uncles. This person has value in the community,” Gillespie said. “It will change you as a donor. You saved a life. How many people get to do that while they’re alive?”
To learn more, go to www.cure4evan.com.
Vanessa Hua’s column appears Fridays in Datebook. Email: firstname.lastname@example.org