By Elizabeth Chiles Shelburne ’01
When Amit Gupta ’04E posts something on the Internet, people pay attention. Last March the social media entrepreneur posted a call for help naming his new puppy. More than 350 suggestions soon flooded in via Facebook (where the puppy has her own page), Twitter, Tumblr and a public Google Document.
Gupta founded Photojojo, whose mission is
“to make photography fun.”
At this new site, Gupta shared the bad news he had recently received:
I got a call from my doctor, who I’d gone to see the day before because I’d been feeling worn out and was losing weight, and wasn’t sure why. He was brief: “Amit, you’ve got Acute Leukemia. You need to enter treatment right away.”
The day he got the call, Gupta packed a backpack and headed to a hospital near his home in San Francisco. There, he received transfusions through the night so he could make it through a flight the next day to get to his hometown in Connecticut, where he could be treated at Yale and be close to family. “I was terrified,” he confessed on his site. As he lay in his hospital bed that night, he turned to Google for answers. The news there was distressing. “If it hadn’t been caught, I’d have died within weeks,” Gupta wrote on his website.
His best hope for survival was a bone marrow transplant. Gupta’s online appeal was simple: “I need help.”
More than 10,000 people with leukemia and other autoimmune diseases need bone marrow transplants each year in the United States. Only about half of them find donors. Thirty percent of those in need of transplants find matches among their family members; the rest must depend on the kindness of friends or strangers. For optimal treatment, doctors gave Gupta until Dec. 1, 2011—less than two months after his initial appeal—to find the perfect marrow donor.
A bone marrow transplant essentially remakes a person’s entire immune system, to the point that a recipient will, for the rest of his life, have two different kinds of DNA: his own and the donor’s. “I can hardly believe it’s even possible,” Gupta wrote about the procedure, “and there’s lots of chances for things to go wrong. It’s frightening.” Donors and patients are matched using a series of 10 genetic markers. Doctors prefer a 10/10, or perfect match, but will, if time dictates, settle for an 8/10. In general, the best hopes for a match are from people within the same ethnic background.
The problem facing Gupta, and other people of South Asian descent who need bone marrow transplants, is that South Asian donors are alarmingly sparse in the marrow registries. There are 9.5 million people on the Be The Match registry—the U.S. bone marrow donor program, partially supported by federal funds. Seventy percent of them are Caucasian, meaning that when a Caucasian person needs a bone marrow donor, she has a 93 percent chance of finding a match. The remaining 30 percent of those registered are ethnic or racial minorities. Of those, according to the South Asian Marrow Association of Recruiters, only about 188,000 are South Asian. (African-Americans are at the largest disadvantage, because their genetic code is the oldest and most complex and because there are relatively few black donors in the registry, making the process of finding a full match that much harder.)
When a patient joins the Be The Match registry, his or her markers are searched against those of the potential donors in the database. Sometimes, the computer finds a few possible matches. Often, however, there are no matches to make. That’s where bone marrow drives come in. The more possible donors in the registry, the more possible matches a patient may have. Friends and family of a patient will set up drives at homes, churches and other local spots. The process to register is fairly easy: Swab your cheek with four large Q-tips from a kit and mail them back to Be The Match. It costs the registry $100 to analyze the four swabs. About one in 300 members of the registry is eventually asked to donate, and about one in 540 members of the registry goes through with a donation.
There are two methods of donating marrow, both of which extract the blood stem cells that the patients need. Three-quarters of marrow donations are similar to a blood draw—just a very long one over the course of six to eight hours. In what is known as the “apheresis method,” a donor receives five days of injections with a drug that boosts the number of blood-forming cells in the body. After that, needles are inserted in both arms. Next, a machine takes the donor’s blood, pulls out the peripheral blood stem cells from one arm and returns the blood to the donor through the other arm. The remaining quarter of donations are done under general anesthesia, during which the marrow is extracted from the body with a large needle inserted into the pelvic bone. (The patient’s doctor chooses the method, so donors must be willing to donate by either one.)
The best donors are people between the ages of 18 and 44, says Nadya Dutchin, national account executive at Be The Match. And while women are more likely to donate, she says, those who have had two or more pregnancies are not good sources of marrow, because of the antibodies created in pregnancy. Like many in her field, Dutchin has long wished for more variety in the donor pool: “We need,” she insists, “younger and more diverse populations of donors.”
Thanks to Amit Gupta, she’d get her wish.
“Amit has always been about using technology to bring people together,” says Josh Gardner, a friend of his from high school. As cofounder, with Noah Winer ’01, of the website The Daily Jolt, Gupta gave his fellow Amherst students a place to find out what was for dinner at Valentine, what the weather was and when the next Zumbyes concert would take place. The company did so well that Gupta left college for two and a half years to focus on running the business, which became national. (He was originally in the Class of 2001.)
After returning to Amherst and graduating, he moved on to a variety of Internet businesses before founding Jelly, a company that helps freelancers and others who work at home find physical spaces to work together, and Photojojo, a company whose mission is “to make photography fun.” Photojojo publishes a popular newsletter with tips on photography projects, such as making a wall clock out of your mounted photographs. It also sells myriad camera accessories: telephoto lenses for your iPhone, coffee mugs in the shape of camera lenses, a 35-millimeter camera that looks like a kid’s juice box.
Like the products he sells, Gupta has a fun and quirky Internet presence; he is the kind of guy who feels it is important to include a small plastic dinosaur with every order from Photojojo. By all accounts, he is exactly the same in person. “A lot of people would ask at the [bone marrow] drives, ‘Is he really as nice as his digital identity?’” says Shirin Adhami ’00, a friend from Amherst. The answer, from Adhami and everyone else I spoke with, was a resounding Yes.
Still, the diagnosis of leukemia rocked him to his core. “He sounded like his world had been turned upside down,” says Jackie Tran Dechongkit ’02, Gupta’s friend and former girlfriend. “He was blindsided.” But he did not lose the entrepreneurial spirit that helped his companies succeed; he was intent on using it to help not only himself but also the thousands of others in the United States in need of a bone marrow transplant. “You’re going to drastically increase the number of people in the bone marrow registry,” Dechongkit remembers him saying when he emailed his closest friends to ask for help.
Within weeks of that email, he had, in addition to his new website, a host of marrow drives already arranged. What’s more, the news of his need had gone viral. His initial public online appeal on Oct. 6, 2011, earned more than 8,000 “likes” (meaning that people approved of the message) and reblogs (meaning that people reposted his post on their blogs). Gupta’s Twitter followers grew from 14,000 before his diagnosis to 28,000 today, which puts him nowhere near the stratospheric numbers of, say, Lady Gaga, but is impressive for a regular guy.
By the end of October, he was a trending topic on Twitter—meaning that, among the hundreds of millions of Twitter users, enough were talking about Gupta that he registered as one of the site’s most popular topics. Even the author Salman Rushdie tweeted about Gupta’s need for a marrow donor. (Yes, Rushdie has a Twitter account.) And it wasn’t just new media paying attention: Print outlets such as Time and Wired featured articles about him, and he did a segment with Dr. Sanjay Gupta on CNN. One newspaper estimated that news of his plight had reached 13 million people via Twitter.
But things like “Meowbook: Facebook for Cats” also trend on Twitter. Being an Internet sensation would not help Gupta unless people were actually signing up to donate marrow. Luckily for him, they were. His friends organized drives across the nation: at “swab parties” from San Francisco to New York, one of which was called “Wanted: Brown Bones”; at colleges and universities, including his alma mater, where 55 people turned out to give samples in the Campus Center; and at the offices of companies including Microsoft and Google. Because of the viral nature of the campaign, drives were also held in such countries as the United Kingdom and India. Winer, the Daily Jolt cofounder, helped organize drives in India that registered, in total, 1,800 new donors for the Indian registry.
All the while, Gupta used Twitter and his websites to help organize drives and keep in touch. In response to a post by a PayPal executive praising the 128 donors who registered at a company drive, Gupta wrote, “That’s awesome. Thanks for helping to make it happen.” Gupta also used his network to advertise drives organized by friends across the country: “If you’re in NYC or Atlanta tonight, and you’d like to get swabbed, there’s info on the http://amitguptaneedsyou.com calendar!”
Friends—and even some strangers—organized
bone marrow drives on Gupta’s behalf.
One was held at Amherst.
It was not just friends who put together drives. The social media push got random strangers into the act. These people organized drives on their own for a man they had never met in person. “He just has so many friends, whether virtual or real,” says Adhami, “and he was able to call upon them and reap the benefits of being such a nice, social person for such a long time.”
Hoping to spur those for whom altruism is not enough, noted author and entrepreneur Seth Godin, yet another friend of Gupta’s, offered up $10,000 to whomever might eventually donate the marrow. Two other Internet entrepreneurs added in another $20,000. Quickly, however, they realized the limits of their largesse: At the time, a 1984 federal law barred donors from receiving payment for their bone marrow. A federal appeals court in California overturned the law in December 2011, but it remained in effect as the Justice Department weighed whether to appeal. As of this summer, the DOJ had decided not to appeal, so, in the Ninth Circuit, which includes California and eight other states, it is now legal to pay donors, as long as they donate by the less invasive apheresis method. Still, this news came too late for Gupta’s generous friends, and so Godin and the other contributors declared that the pot would go to the first would-be donor who proved to be a good match for Gupta, whether or not that person donated. (Godin has made no further announcements as to what will happen to the money, and in an email interview, he declined to elaborate on the matter.)
Whether for the potential money or for the simple desire to help, the Be The Match registry estimates that there were 200 to 300 drives held just for Gupta, including the one at Amherst. The typical donation campaign garners around 2,000 new potential donors. By the Dec. 1 deadline that Gupta’s doctors had set as a goal, his campaign had registered an extraordinary 10,000 new potential donors in the United States.
On the Dec. 1 deadline, Gupta tweeted, “The swabs that have come in through today will take six weeks to process. I’ll be getting chemo, waiting, and hoping one matches.” The waiting, never easy, was made even tougher in the midst of another round of chemotherapy. “Can’t see well for a couple days due to chemo-induced cornea damage,” he tweeted in mid-December.
Not long after this came the good news that the effort had yielded a possible donor. However, this first match did not work out. “We had somebody who was lined up to donate for me this month actually,” Gupta told the host of The Takeaway, a WNYC radio show, in late December. “But then he changed to next month, and then to February, so now we are looking for somebody else who might be a little more accommodating.”
According to Dutchin at Be The Match, close to half of those who are matched with a patient ultimately do not donate. Some choose not to for health reasons or because they are too busy, while others opt out because, when it comes down to it, they registered specifically to help one particular person—a friend or relative—and not a stranger.
This delay was a setback, yet when Gupta shared the bad news on the radio show, he was upbeat and seemingly overwhelmed by the effort mounted on his behalf. “I’ve got faith in just the goodness of people,” he told the WNYC host. “I couldn’t have imagined the groundswell of support that formed around me. Not just from friends, and friends of friends, but complete strangers. [I have] a restored faith in humanity.”
Perhaps Gupta was right to have that faith, but to those who know him, it is clear that the friends and strangers would not have gone to such lengths for just anyone. Most of us do not have such a broad network of friends, acquaintances and virtual friends to call upon in a time of need. Perhaps more importantly, Gupta’s amiable and giving persona (both real and virtual) made that network feel that helping him was the right thing to do. When I spoke with several of his friends, every single one admitted, often ruefully, that, were they the ones in trouble, there was no way they would have been able to rally so many people to the cause. Gupta, they acknowledged, is unique. Says Gardner, who organized several drives at Boston-area graduate schools, “People threw themselves into this effort with a degree of energy and commitment that wouldn’t necessarily have been there if he wasn’t such an extraordinary person.”
On Jan. 18, 2012, Gupta posted another simple announcement on his website. This one was exuberant: “Many of you have asked, so here’s what’s going on with me. I’ve got a 10/10 matched donor!”
His doctors had indeed found a second match. “You all literally helped save my life. (And the lives of many others.)” He wrote that he was aware of the long road ahead—the possibility that his body would reject the donation, the dangers of having a brand-new immune system (one less hardy than a baby’s) and the attendant risks of infection, the possibility that the leukemia could relapse. (“Stubborn mofo,” he wrote about that possibility.)
But his elation was hard to hide: “I am alive. I start tomorrow. Wish me luck! Thank you.”
Admitted to Dana-Farber Cancer Institute in Boston the next day, Gupta began a “stiff chemo cocktail,” as he put it, to eradicate any and all cancer cells in his body—a necessary step before a marrow transplant. The drugs are toxic enough to completely destroy a person’s immune system. From the hospital, he stayed in touch with those who’d followed his struggle online, tweeting on Jan. 27: “Have been too nauseous to eat or drink, and drugged up for days, but tonight is stem cell transplant day for me. Day Zero!”
After a brief online silence, he posted again on the day after his transplant: “New stem cells in me! No champagne, no fireworks, no balloons fell from the ceiling. But I’m okay with that.”
From there, Gupta undertook the hard work of recovery. He was in the hospital until Feb. 13 and then at home with his family in Connecticut, sequestered from public places so as to avoid infection. Somehow, he managed to keep up with work at Photojojo, posting about new products, job openings and news coverage of the company. The next few months were marked by many Twitter and Tumblr posts remarking on the slow recovery process, along the lines of “Getting there, week by week.”
By May 7, his spirits were high. That day, he posted at 6 a.m.: “Today is Day +100 from my stem cell transplant. #MILESTONE.” It was a huge moment for Gupta, because patients are most at risk for infections or rejection within the first 100 days. He celebrated by spending the next day in Brooklyn, N.Y., searching for a summer sublet in which to enjoy his newfound freedom.
Gupta still has his life, and thus his ability to enjoy that freedom, thanks to his anonymous donor. The registry keeps the donor’s and patient’s names confidential for a year after a transplant, at which point, if both parties agree, each can find out who the other is. All that we know about Gupta’s donor is that he or she signed up during the course of the all-out effort to help. Did the donor register at the Brown Bones party that Jackie Dechongkit helped host? The Harvard Law School event that Josh Gardner put together? The drive that brought Amherst students out on a winter day? Or was the donor someone who had never heard Gupta’s plea? It could have been a son who signed up to help his sick mother, a business colleague who registered to help a friend.
No matter what, it’s clear that Gupta’s efforts helped improve the chances for South Asians with leukemia. “Amit’s efforts, as well as the efforts of many other South Asian networks in the past few years, have increased the pool of eligible South Asian donors,” says Dutchin. “There is a vast genetic diversity in the South Asian haplotype also, so the more people who are on the registry and committed to donating, the more patients have a chance of finding a suitable and available donor when they need one.”
For a man who used social media to save his own life, it is perhaps unsurprising that when Gupta, like so many with cancer, pulled back from those around him to focus on his treatment, he retreated into social media. When I interviewed his friends, many of them said they had not spoken with him in months; like everyone else, they were getting their news about him from Twitter and his website, along with updates from his assistant at Photojojo, Jessa Clark, who moved to Connecticut to help care for him. (In fact, Gupta declined to be interviewed for this article, saying he wanted to be a bit more private about his health; he did authorize a profile based on his online writings.) But his Twitter feed often reads like an intimate email exchange. On it, he doesn’t only post health updates. He also congratulates friends on engagements and babies and, of course, posts pictures and updates about his dog, Leah—a name that received but one lonely vote on his Google Document.
Since June and his move to New York, he is out of his medically imposed isolation. Today, his posts are less often medical in nature and more often about the friends he is seeing and the restaurants he is frequenting. On June 16, he posted on his Tumblr page, “I am on a plane!” It was his first flight in six months, since he began preparation for his transplant. That late-spring day, Gupta was on his way to visit San Francisco, his adopted hometown.
Burritos! SF Friends! Photojojo! Citrus fruit and Trouble Coffee cinnamon toast! My bike! …and
a storage unit full of mostly-forgotten artifacts of a life I left behind.
Here I come.
Elizabeth Chiles Shelburne is a writer based in Cambridge, Mass.
Photo by Robert Swirsky; poster images courtesy of amitguptaneedsyou.com.