A fair chance at a cure
As a graduate student in the 1990s, Narasimhan “Sim” Gopalan began volunteering to spread the word about stem cell donation as a cure for leukemia and other blood cancers. He got involved simply to help with what he believed was an important cause. Years later, though, it became personal.
“Little did I know it would come knocking on my door,” says Gopalan, president of the Rotary Club of Silicon Andhra, California. His wife was diagnosed in 2010 with an aggressive form of leukemia and began treatment. But finding a good donor match for a stem cell transplant as a person of South Asian descent proved difficult, particularly since minority groups in the U.S. are underrepresented on registries of stem cell or bone marrow donors.
With a good — but not perfect — donor match coming so late in her treatment, the transplant was not successful. His wife died just nine months after she was diagnosed, leaving Gopalan to parent their daughters, who were then 12 and 8.
Blood stem cells can be used to cure or treat more than 75 diseases, including leukemia, lymphoma, sickle cell disease, inherited immune-deficiency disorders, and aplastic anemia, when the body can’t make enough new blood cells. A donor’s healthy blood-forming cells replace a patient’s abnormal stem cells and build a new immune system over time. But for people whose ethnicity is underrepresented in the U.S. on registries, the chances of finding a donor match in time for lifesaving care are far slimmer than for white patients.
Lack of diversity among donors is a problem because to be successful the patient and donor need to share certain genetic markers, and the chances are higher if they’re of the same ethnicity. Otherwise, there’s a great chance the patient’s body will reject the transplant.
Gopalan, a university administrator in the San Francisco Bay Area, has been working for about 30 years to close that diversity gap through donor drives, adding thousands of people over that time to the registry managed by Be the Match, a nonprofit organization in the U.S. operated by the National Marrow Donor Program.
After his wife’s death, he redoubled his efforts. “I took that as a message and started running at least two or three drives every weekend,” he says. In 2019 he joined Rotary and began involving his club in raising awareness in the community, which is home to many Indian immigrants. He also works with and advises leukemia patients and their families all over the world.
Among the people he’s counseled is Vishal Belgodu, a software developer in Santa Clara, California. Gopalan calls him an amazing warrior who “fought the illness with a smile and a lot of resilience.” Belgodu had just become a new father when he was diagnosed with leukemia in 2016. Chemotherapy had put his cancer into remission, but doctors said he desperately needed a bone marrow transplant, another method of receiving blood stem cells.
After a few months, his medical team found a suitable donor, a young woman registered in the database run by Be the Match. “I’m very grateful to that person and the whole Be the Match process,” Belgodu says. “If not for the donor, I wouldn’t be here for sure.”
Family members can sometimes share enough genetic markers to donate to a loved one, but most patients — around 70 percent — must rely on a registry. Be the Match says its registry is the most diverse in the world. Still, not everyone has an equal chance of finding a match.
The differences in representation are stark. Seventy-nine percent of patients categorized as white in Be the Match statistics are able to find a donor through the registry. But the odds of finding a match in time for treatment are only 60 percent for Native Americans, 48 percent for Hispanic or Latino people, 47 percent for Asians or Pacific Islanders, and 29 percent for Black patients.
One reason for the disparity is that some ethnic populations have genetic differences inherited from their ancestors that make finding a match more difficult, says Sewa Legha, a medical oncologist in Houston. Another reason is a general lack of trust in science and research in some minority groups in the U.S. because of historical and current injustices toward Black people in health care, he says, causing some people to remain skeptical about the safety of donation.
To register as a potential donor, a person fills out some basic information and turns in a swab of cells from inside the cheek. That swab is then sent off to identify the person’s genetic markers, says Jamie Margolis, senior vice president of donor services for Be the Match. People are contacted if they are found to be a match for a patient, then a series of physical tests are done to ensure the process is safe for both patient and donor, she says. Donors between the ages of 18 and 35 are most wanted because their stem cells offer the greatest chance of successful transplantation.
Donating used to require anesthesia to extract stem cells directly from bone marrow in the hip. While that technique is still used in some cases, about 85 percent of donations today come from blood cells that circulate in a donor’s body, Margolis says. Donors receive five days of injections to stimulate the stem cells. On the day of donation “you’ve got a needle in one arm, pulling blood from a vein, the cells that are needed are collected, and everything else goes back into a vein in the other arm,” Margolis says, a process similar to platelet donation. The procedure typically takes up to eight hours. Donors often watch TV or use their cell phones to pass the time, she says.
By the numbers
A Black patient’s odds of finding a donor match
Diseases that can be cured or treated with blood stem cells
Frequency that someone in the U.S. is diagnosed with a blood cancer
One stem cell donor, Abhishek Padmanabhuni, learned about the issue in a 2020 webinar hosted by the Silicon Andhra club. He sent in his cheek swab and about a month later was notified he was a match.
To help educate people and allay fears, Padmanabhuni documented his stem cell donation in a video he posted online. “I wanted people to know that it was not a painful process at all,” he says, “[and] to know that somebody like me, like any other person, can do this.”
Padmanabhuni became a Rotarian in 2022, joining the Rotary Club of Austin Cosmopolitan, Texas, and is encouraging his club and district to schedule registry drives. “All the Rotarians across the world need to talk about spreading awareness,” Padmanabhuni says. “Every other person you speak to has somebody in their family that has already suffered from cancer.”
Today, Be the Match has more than 9 million potential donors registered in the U.S. Through its global network, it has access to more than 41 million potential donors worldwide. Be the Match organizes its own outreach with colleges to build awareness among young people, Margolis says.
For Rotary members considering a donor registration drive, Gopalan says the process is easy and can pair with any function where people gather: parties, homeowners association meetings, “literally anything.” He keeps swab kits in his car just in case he gets a call from someone interested in doing an impromptu drive.
Some of Belgodu’s friends did donor drives when he was trying to find a match. Looking back, he credits the constant support of his wife as essential to his recovery. But the person who ended up saving his life is someone he never met. “And that’s very powerful, right? If you know you can save somebody’s life just by donating your stem cells, that’s an amazing thing,” he says.
This story originally appeared in the October 2023 issue of Rotary magazine.