Largely underrepresented on the national bone marrow donor registry, minorities make up only 22% of the more than 16 million registered donors.
When Vanessa Hsieh-Park, MD, thought she had sustained a hip injury while skiing last year, she assumed the usual treatment of stretching, exercising and physical therapy would solve the problem.
But soon, the pain worsened to the point where she was forced to take a leave of absence from work. When the pain became intolerable, Vanessa’s husband rushed her to the emergency department at Kaiser Permanente in Santa Clara, the very place she worked at the time.
One of her own colleagues delivered Vanessa’s diagnosis: acute lymphoblastic leukemia. This news shocked Vanessa, an emergency medicine specialist, especially because she is a fitness enthusiast and avid skier with no family history of leukemia. After going into remission late last year, Vanessa relapsed this past summer.
After a grueling, intensive treatment, Vanessa is currently on maintenance treatment — and awaiting a blood stem cell transplant now scheduled for later this month. Although there's no guarantee of success, this transplant is her only chance for a cure.
Finding a match, however, has not been easy. Vanessa is Chinese and minorities are largely underrepresented on the national donor registry. Of the more than 16 million registered donors on the national registry, only 22 percent are ethnically diverse. And siblings and family members are only a match about 30 percent of the time, so approximately 70 percent of patients in need of a transplant rely on donor recruitment centers.
Learning about the lack of minority representation on the national donor registry prompted Mika Yoshino, director, Kaiser Permanente’s Digital Experience Center, to start Will You Marrow Me in 2015, a program focused on encouraging Kaiser Permanente employees to spread the word about the need for donors and to register. Will You Marrow Me partners with the Asian American Donor Program, which is an official recruitment center of Be The Match registry, the national donor registry.
“The idea that everyone can make a difference by helping to raise awareness and saving lives has activated a team of volunteers across Kaiser Permanente,” notes Mika. “Leaders and employees from all corners of Kaiser Permanente have sponsored drives and programs on behalf of the 14,000 patients waiting for a match.”
For now, Vanessa says she and her family are taking it one day at a time. "Ideally, I’d love to be back in my ‘normal’ life — going to work, seeing patients, being with my family, traveling, skiing and keeping up with them,” she says.
Vanessa’s out-of-the-blue diagnosis is not the only case of its kind.
Early this year, Matt Medina, who is Filipino, a Los Angeles police officer, and a Kaiser Permanente member, scheduled a doctor’s appointment to get a rash checked out. But his blood work revealed something much more serious than he had anticipated: aplastic anemia, a rare blood disease in which a person’s bone marrow — the spongy material inside bones that produces the essential components of blood — stops working.
Matt’s case is unexplained. Nonetheless, he has undergone transfusion treatment and responded well, and now takes medication in maintenance doses and meets with his doctor once a month. He remains hopeful that an ideal donor will be found if he does need a transplant in the future.
Since 2016, over 500 people have joined the donor registry through Will You Marrow Me efforts, but many more are needed. This month, program organizers are launching a campaign to raise awareness among diverse Kaiser Permanente members, starting with a pilot onsite donor registration area in the Health Education Department of the South San Francisco Medical Center.
Will You Marrow Me is one of numerous efforts to increase awareness about blood stem cell and bone marrow donor needs and to encourage people to register. Many local organizations have hosted donor drives and events for Matt and Vanessa. In fact, most donors donate stem cells, not actual bone marrow, Vanessa notes. “This is a common misconception, and often intimidating for people who might want to register,” she says. “In my case, I’m having a stem cell transplant, but the ‘match’ search is the same as for a bone marrow match.”
Matt says, "I've heard a handful of happy stories of matches, and I hope the bone marrow campaigns continue so that more and more people in need can find their match.”
“If you don't match with me, you could potentially match anyone in the world. This is a global effort,” Vanessa says. “And if you do become a donor, you’re saving a life.”
In this case, when you marrow someone, it could last a lifetime.
For more information about blood stem cell and bone marrow registration, donation, and transplants, please visit: kp.org/bethematch.