Leukemia patient turns to social media to save his own life

Story by The Takeaway. Listen to audio above for full report.

There’s a movement afoot in social media and on the Internet to get thousands of people registered as bone marrow donors, and the stakes couldn’t be higher.

If more people don’t register, Amit Gupta’s life could come to an end.

Gupta, who founded and runs the website Photojojo, was recently diagnosed with Leukemia.

“That first week was pretty dismal. I think I cried more than any time in my entire life, just the thought that my life would be much shorter than I ever thought,” he said.

But he’s not without options. He’s undergoing chemotherapy right now, but once that’s complete he’ll need a bone marrow transplant to replenish the cells the chemo will kill. Unfortunately, Gupta is South Indian, and in the National Bone Marrow Registry, all South Asians — which includes those of Indian descent — make up just one percent of those who’ve registered.

So far, none of them are a match.

(Do you know of a bone marrow registry drive in your community? Post it in the comments below.)

But instead of despairing, Gupta turned to his friends for help and support and to find his match.

“People started tweeting and Facebooking and messaging South Asians, trying to setup up bone marrow drives all over the country,” Gupta said.

And that lifted his spirits, for a while.

 Unfortunately, while a lot of people wanted to talk about people getting registed, very few people actually took the time to get registed. And often getting registered is as simple as getting a cheek swabbed.

Seth Godin, who had Gupta as an intern and whom Gupta considers a mentor, saw the activity and wanted to help, especially when he realized most people just wanted to talk, and not take action today.

“We’ve created certain things in our culture that feel urgent, and most things that people feel like they can do tomorrow,” Godin said. “And one of the thing money does is it activates a different part of your brain that feels urgent. Once you realize there is a deadline…you get off the couch and take action.”

So that’s exactly what Godin did. In a post on his blog, Godin offered $10,000 to the first person to register for the bone marrow registry and become a match to Gupta.

According to Gupta, reaction exploded when Godin’s post went viral. And while it may have helped Gupta find a match, the offer does dance along the edge of federal law, which says you cannot buy an organ or tissue donation from anyone.

Godin says that he’s not doing that. To be perfectly clear, he’s merely offering someone cash to get registered and be a match. Whether they donate is up to them and has no bearing on whether they collect the prize.

“The question is, there are people out there who match Amit, do they want to know?” he said.

Gupta’s not standing still, waiting for the right person to register. His doctors have begun combing through bone marrow registries in India, though that’s complicated because the country lacks a centralized database. Instead, they have to hospital by hospital.

Godin says he hopes people will take this story as an opportunity to get registered. He said donating bone marrow is little different from donating blood these days.

“It’s not particularly painful and it won’t taking anything away from you that you won’t have back a few weeks later,” he said.

Gupta’s friends in New York have a special registry drive planned for Friday at 9:30 p.m. and anyone is welcome to come and get registered for free. If you’re outside New York, you can join the registry by ordering a kit from the national registry. And, many hospitals and doctors offices around the country hold drives regularly. Call you local hospital or health department to find out if there’s a registry drive near you.

By registering, there’s no obligation to donate, but you might end up having the opportunity to save someone’s life.

A previous version of this story incorrectly stated the conditions for which Godin offered the prize. The prize goes to the first person to match Gupta, whether they donate or not.

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“The Takeaway” is a national morning news program, delivering the news and analysis you need to catch up, start your day, and prepare for what’s ahead. The show is a co-production of WNYC and PRI, in editorial collaboration with the BBC, The New York Times Radio, and WGBH.