Amit Gupta and the social media search for a cure
Does social media amplify our sense of responsibility to one another? Amit Gupta, a cancer patient and tech entrepreneur, tests the strength of the web.
When Amit Gupta was diagnosed with acute leukaemia, the 32-year old technology entrepreneur did what most people in that position do: turned to his friends and family to find a bone marrow donation.
But Mr Gupta, who founded the photo site Photojojo, has a few more friends to draw from than the average cancer patient: 17,700 on Twitter, 13,000 on Facebook (plus 422 subscribers) plus a strong web presence on Tumblr, Flickr and other social media platforms.
He would need all the help he could get. As an Indian-American, his odds of finding a donor were slim, about 1 in 20,000. South Asians, like other minorities in the US, are dramatically under-represented in the national bone marrow registry. Because a successful donation requires a close genetic match, this small pool of potential candidates is not good news for people like Mr Gupta.Reluctance to register
Religious and cultural barriers can prevent minorities from registering to donate for the sake of altruism, says Nayda Dutchin, a spokesperson for the National Marrow Donation Program. "There's a huge fear and a huge mistrust of the medical community," she says.
So Mr Gupta and his friends decided to use their fluency with social media to compensate. By organising "swab parties" at tech centres like Google and Facebook and spreading the word online, they hoped to both increase his odds of finding a match and increase the overall number of South Asians in the national registry.
End Quote David Hunt Office of the national co-ordinator for health technology
The wonderful thing about social networking is it can create that sense of trust between elements of communities that have traditionally been relatively marginalised”
At these parties, prospective donors swab the inside of their cheeks to collect DNA. The swabs are then sent to be tested and registered in the national bone marrow registry. Once on the registry, donors are kept in the system until they age out at 61, and can be called at any time if their marrow matches that of a patient in need.
Even within communities underrepresented on the bone marrow registry, people often rally around a sick individual by volunteering to donate marrow. But these donation drives do not always benefit all patients.
"I've heard of two people, close friends of mine, who joined the registry hoping to help match someone in particular," says Sachin Jain, a clinical fellow at Harvard medical school and a social media consultant.
"Heartbreakingly, they matched someone else in the registry, but declined to donate," he said, unwilling to undergo a medical procedure for a stranger.
That is a common phenomenon for donors of all ethnic backgrounds, and one that is particularly prevalent for South Asians.
As reported in Good, South Asians who sign up for the registry to help one person have a 50% rate of decline when approached to help a stranger.
A new model?
The pull of social media may have created a new model for marrow donations - the urgency of the personal appeal combined with the altruism of the anonymous donation.
Those close to Mr Gupta were motivated to spread the word, host their own parties, and promote the cause. But by the time the parties reached places like DC, Kansas City or Nashville, the majority of the attendees were those with no connection to Mr Gupta besides their genetic ancestry - and sometimes not even that.
Bone Marrow Donation Facts
- Donors are tested for their human leukocyte antigen (HLA) tissue type. The immune system uses these markers to detect foreign cells in the body.
- The closer the HLA match, the less likely the patient will reject the new marrow.
- One out of 540 people on the US bone marrow registry will go on to donate marrow
- There are two types of donation: marrow and peripheral blood stem cell (PBSC). Marrow donation requires surgical extraction under general anaesthesia, while PBSC is done in an outpatient clinic under local anaesthesia.
- Common side effects of marrow donation may include lower back pain, fatigue, stiffness when walking or bleeding at the collection site, though personal discomfort varies
Source: National marrow donor programme
"If you know there is a person in need and you're one of the few people can help, why wouldn't you help?" said Martez Farajian. Mr Farajian joined the marrow registry at the Washington, DC cultural centre BloomBars. He had been attending an art opening on the same night as the swab party and decided to sign up.
Farah Ahmed, an artist showing her work at BloomBars, had not heard of Mr Gupta previously, but was inspired to register after learning the facts.
"There are so few donors and such a small chance of survival, especially for the South Asian community," says Ms. Ahmed. "I'm an organ donor on my driver's licence. If it's going to help save a life, why not?"
That is just what Mr Gupta, who hopes to use his social media capital to help the community at large, wants to hear.
"All donors are carefully told about he process and they have to sign something that states that they understand that they're registering in the national registry, not just testing for me, and that they intend to donate to anyone that should need it," said Mr Gupta in an email to the BBC.
"From the start, our aim has been to grow the national registry for South Asians at the same time as we work to find me a match."Altruism online
While social media plays a crucial role in getting the word out, it's only the first step to getting new donors on the registry. People cannot virtually swab - parties had to be organised, people had to show up, and once there decide whether or not to join the registry.
By holding parties at places like BloomBars or Indian temples, signing up for the registry seems organic and community-supportive. But those who do decide to donate do so without the singular focus on just one donor.
"The wonderful thing about social networking is it can create that sense of trust between elements of communities that have traditionally been relatively marginalised," says David Hunt MD, chief medical officer at the Office of the national co-ordinator for health technology in the US Department of Health and Human Services. "It is a slightly different way of making a traditional request."
The swab parties are not the first time that social media solicitations have resulted in medical altruism. Earlier this year, for instance, Amy Donahue donated a kidney to Anu Dwivedi after Ms Dwivedi's daughter solicited organ donors via Twitter and Facebook.
"When it comes to real needs, we go back to the fact that we're a community and we can help each other," says Victor Montori, medical director of the Mayo Clinic's social media centre. Participation in social media has made our communities larger, he says.
The good Mr Gupta has done for the community has far exceeded his own search for a donor. It is likely that only swabs submitted to the registry before 30 November will be tested in time to help him.
Still, the parties continue.