Growing up in Walpole, Mandy Manocchio-Putney often was asked where she was from. She always responded, proudly and surprisingly, “I’m Irish and Italian.”
The answer drew funny looks — she was adopted from South Korea as a baby into an Irish-Italian family — but for her, it was the truth.
Now, the 40-year-old’s Korean heritage has suddenly become central to her life in a way she never expected. After being diagnosed with acute myeloid leukemia in July, Manocchio-Putney faces a disturbing reality shared with many minorities in the United States — getting a bone marrow donation to save her life will be much harder for her than it would be for one of her two Caucasian siblings.
Or than it was for her father.
Twenty years ago, Ernie Manocchio, a lieutenant in the Walpole fire department, also needed a bone marrow transplant, to treat a type of cancer called multiple myeloma. His sister was able to donate (biological siblings are a match about a quarter of the time), but he died soon after.
While 93 percent of Caucasians are able to find a match among the 10.5 million potential donors registered nationwide, the likelihood of finding a match is lower for Asian-Americans — 73 percent — said Chris Mulcahy, northeast district supervisor for Be the Match, which oversees marrow drives and registries.
And it’s even more difficult for mixed-race individuals, African-Americans, and some subsets of Asian-Americans, particularly South Asians, to find a match, said Dr. Joseph Antin, chief of stem cell transplantation at Dana-Farber Cancer Institute.
When Manocchio-Putney’s doctor told her she would need a bone marrow transplant, the mother of two young boys said her late father instantly came to mind. “Oh God, not again,” she thought. “My family can’t go through this again.” Then later she decided, “I’m going to win this because my father’s behind me — he will not let me lose.”
Her tough spirit is lifting her family as she undergoes chemotherapy at New York University’s Langone Medical Center and awaits news on a match.
Bone marrow donors must have similar genetic history to recipients, Antin said. Though race has no genetic basis, the genes that determine the success of transplanted cells, called human leukocyte antigens, correlate with individuals’ ethnic backgrounds.
Humans developed distinct resistances to pathogens depending on what diseases proliferated in which parts of the world, meaning different ethnic groups evolved with different HLA genes.
That genetic diversity in human leukocyte antigens makes it hard for everyone to find a bone marrow match. But it’s even tougher for people of Asian and African descent, because the more diverse an individual’s evolutionary history is, the harder it becomes to find a match. Since populations in Africa and Asia developed in the face of some of the most diverse conditions, many of its people have unique genetic types.
Add that to the reality that the national registry of potential donors is disproportionately white, and the odds of a donor match are much lower.
But sometimes, in cases like Manocchio-Putney’s, one individual’s case can generate enough momentum to expand the registry. For many years, Antin said, it was nearly impossible to find bone marrow matches for Ashkenazi Jews, whose families came from Europe. When one such Jew got sick, the community mobilized, and now many are registered as potential donors.
Manocchio-Putney’s friends and family are organizing two donor drives: one on Sept. 4 from 3 p.m. to 6 p.m. at Gillette Stadium in Foxborough, and another on Sept. 7 from noon to 4 p.m. at the Sharon American Legion headquarters. The drives are open to people of all races, but the organizers are especially eager for Asian-Americans to come.
Participants in drives have their cheeks swabbed to gather their genetic information and are then entered in a national registry. Should they prove a match for anyone, they’re contacted and asked to donate.
Donation is painless; donors are under general anesthesia while the bone marrow cells are removed with a needle, Mulcahy said. About 1 percent of donors can experience complications from the anesthesia or bone, nerve, or muscle damage during the procedure.
But getting to the donation stage can take a long time, Antin said. Typically, it takes around six to eight weeks. The potential donors must be contacted, asked whether they are still willing to donate, and undergo a lengthy physical exam.
Though as many as 60 percent of contacted individuals follow through on the donation, nonwhites are 30 percent less likely to do so when contacted as a potential match, according to a December 2012 study in the journal Blood.
If a match isn’t found, Antin said, sometimes cord blood — taken from a newborn’s umbilical cord — can serve as a substitute. That blood is stockpiled nationwide and easier to get access to quickly. Manocchio-Putney said her doctors may turn to that alternative.
She remains optimistic, hoping to return to Boston to have the transplant done soon. And friends are also seeking to arrange a donor drive in South Korea, where Manocchio-Putney has never returned.
It was her late father who always wanted to take his daughter there, to get her interested in her heritage, maybe even to find the village she came from. After his death, she never made the long-discussed trip.
Not until this diagnosis did Manocchio-Putney need to thoroughly investigate her adoptive history — this time with urgency. But all she knows from the adoption agency, she said, is that she was abandoned on a street on Christmas Eve. Someone found her and took her to an orphanage. Soon afterward, she was adopted by the Manocchios, who already had two biological children.
“She always got all this attention because she was the different one,” said her mother, Duane Manocchio, 73, her voice breaking on the phone.
“But it didn’t matter how she got here,” her mother said. “She’s just my daughter.”Sanjena Sathian can be reached at firstname.lastname@example.org. Follow her on Twitter @sasathian.