Donor 2.0: Social media's medical altruists

The BBC visits the Punjabi Professional Happy Hour in New York City to find out how potential donors are registering to help Mr Gupta's campaign

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.

Continue reading the main story“Start QuoteThe wonderful thing about social networking is it can create that sense of trust between elements of communities that have traditionally been relatively marginalised”

End QuoteDavid HuntOffice of the national co-ordinator for health technology 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.

Continue reading the main storyBone 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.

The Power - and Limits - of Social Movements

By Robert Jensen
In mainstream politics in the United States, everyone agrees on one thing: We're number one. We're special. We're America. We're on top, where we deserve to be.

In dissident politics in the United States, we have long argued that this quest for economic and military dominance can't be squared with basic moral and political principles. We're on top, but it's unjust and unsustainable.

Whether or not the United States has ever had a legitimate claim to that top spot -- or whether there should be spots on top for any nation(s) -- the days of uncontested dominance are over: Our economy is in permanent decline and our military power continues to fade. We are still the wealthiest society in history, but we are no longer the dynamic heart of the global economy. Our military is still able to destroy at will, but the wars of the past decade have demonstrated the limits of that barbarism.

How should the U.S. public react to this shift? One approach would be to acknowledge that predatory corporate capitalism based on greed and First World imperialism based on violence have produced obscene levels of inequality, both within societies and between societies, that are inconsistent with those basic moral and political principles. Our task is to reshape systems and institutions before it's too late.

That kind of critical self-reflection also leads to the conclusion that our society not only fails on the criterion of social justice but also is ecologically unsustainable. We are a profligate, consumption-mad society, in a world in which unsustainable living arrangements are the norm in the developed world and spreading quickly in the developing world. We can't predict the time frame for collapse if we continue on this trajectory, but we can be reasonably certain that without major changes in our relationship to the larger living world the ecosphere will at some point (likely within decades) be unable to support large-scale human life as we know it.

These crises, if honestly acknowledged and squarely faced, would test our capacity to analyze and adapt -- there's no guarantee that enough time remains to prevent catastrophe. Without such honesty, there is no hope of a decent future.

So, the bad news is that we're in trouble.

The worse news is that the mainstream political culture cannot face this reality. 

Social Justice Activists Must Take Into Account Ecological, Cultural, and Economic Transformation

Popular protest against rulers in many parts of Africa and Asia has spread faster than most anyone would have dared hope. Ferment in other countries may well materialize and mount, including the U.S. However, while the recent uprisings have potential and are well stoked by rampant oppression and greed, we are no longer in a 19th or 20th century set of social or ecological conditions. The attainment of peace and prosperity can no longer be fully addressed with revolutions or social movements. The decades of economic growth from cheap oil -- producing wealth for some, not bringing peace -- cannot be replicated.

The common people have always just wanted peace and prosperity, but are pushed beyond a certain point by relentless opportunists seizing greater power. This results in eventual revolt, but new immutable factors in social change include the deteriorating health of the biosphere, cultural breakdown, and economic collapse.

We must view the aims of today's uprisings for social justice as naive, and the expectations outmoded, if much of the population is not in accord with the direction in which humanity and the Earth are actually going. There can be no consensus if unbridled capitalism or other systems for massive industrial development can hold sway, for they leave behind the majority of people, at best, while mostly preying upon them. Even when people are willing to take action in concert to redistribute the pie, whether by Gandhian mobilization or use of force, this may resonate falsely, for the pie is disintegrating. Its recipe and ingredients are obsolete. And freedom attained in harsh austerity, characterized by intense competition for food, will be doubtful or of little comfort.