Bone Dry: Amit Gupta and the South Asian Bone Marrow Problem Amit Gupta and the South Asian Bone Marrow Deficit
Amit Gupta needs a bone marrow transplant.
When the 32-year-old Indian-American tech entrepreneur was diagnosed with acute myeloid leukemia last month, he extended a call for help. Gupta’s tech cred—he started launching web startups while still in college—ensured that his message swept across social media platforms. But Gupta is now battling more than cancer: Because he is South Asian, the people most likely to match his bone marrow are among the least likely to give it up.
If you’re South Asian, too, this is not news. Our own media outlets have been reporting on the bone marrow registry deficit within the community for over a decade. Each year, a few new stories like Amit’s pop up—individuals desperately trying to find a match against our community’s uniquely terrible odds. And each year I wonder: Why are we so bad at this?
It's partially a numbers game. Gupta’s best hope is a bone marrow transplant from a donor in the South Asian community. And his chance of finding an exact match within his ethnic community is only a little better than one in 20,000. Historical hangups contribute to genetic barriers to marrow matching, too. To make a successful match, donor and recipient must have the exact same HLA, a set of genes on Human Chromosome 6, which maps to the immune system. HLA comes in billions of different combinations, and they’re more likely to match in people with the same ethnic background. Centuries of colonization and ethnic intermixing means South Asians have a wide number of HLA combinations that are difficult to align.
But there is something more troubling at work here. For reasons related to our cultures, religions, and insular information networks, many South Asians are less willing to join the bone marrow donation registry—even if our potential to save lives within our own community is great.
I joined the national registry more than a year ago after hearing another one of those sad stories: That of Maya Chamberlain, a 4-year-old girl with a rare blood disease. I sent for my free registration kit from the National Bone Marrow Program, swabbed my cheek, mailed it back, and forgot all about it. (I was not a match.) Over the phone a few weeks later, I casually mentioned my registration to my mom. She freaked out, telling me (incorrectly) that the process was dangerous and (troublingly) that I first needed to look out for myself. Her reaction bothered me, but I chalked it up to anxious mothering.
But when Gupta received his diagnosis, I began to see my mother’s attitude reflected in the larger donor pool. In large part because of his marketing and tech connections, Gupta’s message has inspired hundreds of registry drives across the country. Comedian Aziz Ansari has boosted the signal. A few influential tech leaders have even pledged to award a total of $30,000 to the donor who makes a successful match. Gupta needs potential donors to register by today for him to receive the transfusion in time. He has yet to find a match.
When Gupta’s search hit my Twitter feed, I urged my brother to join. He refused. I asked my parents to join. They refused, too. I was stunned. Even armed with facts about how safe and relatively painless the process can be—more than 75 percent of procedures are akin to blood donation, no surgery or giant needles required—their response was lukewarm at best. “You don’t know what could happen!” was one non-answer I received from my family members. The subtext: “I don’t care.”
Curious to see if the resistance I faced at home was indicative of a larger cultural issue, I contacted recruiters at several South Asian bone marrow donation organizations. They have been struggling against these same dynamics for years. “Ignorance is one of the reasons why we don’t get many people to sign up, and ignorance breeds prejudice,” says Moazzam Ali Khan, co-founder of the New York-based South Asian Marrow Association of Recruiters. Khan’s organization has succeeded in adding more than 100,000 South Asians to the registry in its 20-year history.
It has not been easy. In his visits to mosques and temples across the U.S. and abroad, Khan found that the linguistic, religious, and cultural diversity of South Asia has its drawbacks when it comes time to appeal to the common good. “Diversity can be divisive,” says Khan, who’s heard from North Indians who don’t want to donate to South Indians, Muslims who don’t want to help non-Muslims, and vice versa. “Our drives in the beginning used to be so divided regionally,” Khan says. “The response was always, ‘Why should I help somebody who doesn’t come from my own region?’”
That attitude speaks to lingering effects of the Indian subcontinent’s long, complicated history. When India was a group of kingdoms, “they were always warring and fighting with each other,” Khan says. “India has never been a nation until now, and the old prejudices have persisted.” There is still no viable national registry for bone marrow donors in India, the second-most populous country in the world. Without government funding or support, two independent recruiting agencies have struggled to create a searchable record of donors, which could help South Asian patients around the world. Pakistan, where my family is from, doesn’t have a registry, either. A report published earlier this year by Pakistan’s Express Tribune claims that nearly 49.7 percent of patients who need a bone marrow transplant in the country die after failing to locate a match. Compare that to the U.S., where recruiters told me that Caucasians have better than a 90 percent chance of finding a match, since they make up the vast majority of the registry pool. (Aside from the registration problems unique to the South Asian community, all minority groups in the U.S. face lower odds).
Several recruiters told me that efforts to donate are usually focused squarely on one’s family and immediate community. “If there is a patient, then that community will rally around the patient,” says Madhuri Mistry, community relations manager for Asians for Miracle Marrow Matches, or A3M. “If they don’t identify with the person, it is often a struggle. In the Caucasian community, we see whether or not they are related or know about a patient, if they want to help save a life, they will come forward.”
According to Carol Gillespie, executive director of the Asian American Donor Program, getting South Asians to sign up for the registry is the easy part. The real challenge is getting them to commit to the donation after being matched. Gillespie told me that more than 50 percent of South Asians in the registry refuse to go through with the donation process if selected. “If you're gonna' register, then for goodness's sakes, if we call you, this is not a trial run. You have indeed matched,” Gillespie says. But often, the personal responsibility to donate unravels when family intercedes. “We can’t just educate the donor,” Gillespie says. “We have to educate the entire family, and that is very unique to the South Asian culture.”
Mistry experienced that phenomenon firsthand in the early '90s, when she turned to A3M after her husband was diagnosed with leukemia. Six people matched her husband. Each of them refused to help. “They all said they wanted to be deleted because they had registered for a particular patient,” Mistry says. Her husband was lucky—he found a clinical trial for a new drug that helped send his cancer into remission. But the lack of support “was hard to hear at the time.”
Unfortunately, it is not wholly surprising. My family has always kept its distance when it comes to helping out non-family members. When a friend was kicked out of her home in high school, my mom told me to leave her alone and stay out of it. Our neighbors down the street lost their home in a fire when I was in middle school, and I don’t remember my family rushing to donate extra home items or even sending them a gift card. If I give money to a cause, my dad tells me I need to spend more wisely. When I donated blood for the first time, my mom said I shouldn’t have put myself at risk. When I fainted afterward, she felt vindicated.
Still, my family is giving: My father lends money to family members abroad. And when it comes to paying our Islamically-required zakat charity each year, my family always delivers. But because the payment is obligatory, it feels more transactional and less personally risky.
I don’t want to paint my own ethnic group as selfish or unkind. But we can be insular, risk-averse, suspicious of Western medicine, and distrusting of each other—a not wholly unreasonable attitude given the history of imperialism that has plagued our community. Now is the time to move past these misconceptions. The procedure is safe and non-invasive. Desi is desi. A person is a person.
With Gupta’s search, the message may be sinking in. “The temple leaders were harder to convince,” Gupta told me in an email between chemotherapy treatments. But when Gupta’s friends and family “pointed out that South Asians in particular were underrepresented and that this helped the entire community,” Gupta says, “that moved a lot of people.”
Due in part to high-profile internet-driven campaigns like Gupta's, Khan says that the South Asian community has increased its representation in the blood marrow pool by more than 40 percent over the past few years. Gupta’s own search has inspired hundreds more to join the registry, including, finally, my brother. The surge in registrants is “really making a dent on the chances of South Asians for a decade to come,” Gupta says. According to recruiters, at least a dozen more South Asian patients are currently searching for a match. If the call comes, I have to believe that my brother would be brave enough to defy these centuries of cultural influences to save a life. I hope I would, too.
Photo via Amit Gupta Needs You