Saturday, November 09, 2013

A Thin Slice of Life

Over the last one year, an international campaign to promote stem cell donation centered on one question - "Will we Save Nalini Ambady?"

The answer came in last week. Ambady, an India-born professor at Stanford University, could not be saved. After a year-long struggle, she succumbed to a form of blood cancer. Even though the campaign resulted in thousands of people registering themselves as potential donors, Ambady's own case was marred by a peculiar problem: each time a perfect match was found, the donor backed out.

Why do registered donors back out? Of what use are the latest advances in medical science & technology, of new online social networks if they cannot improve on the fine art of persuasion?

I never knew Ambady. My first introduction to her work came through Dilip D'Souza's column in the Mint (11 April 2013). He was part of a close-knit bunch of family friends & relatives who had launched an online campaign to save Ambady.

A few years ago, Ambady had become quite famous after Malcom Gladwell's 2005 bestseller, "Blink", quoted extensively from her work in Behavioral Psychology. President Bill Clinton had given her an award "for fundamental contributions to understanding accuracy of social judgments based on 'thin slices' of information”. Now her life depended on something similar.

The global campaign to find a donor was quite effective in reaching out to a vast audience., and a Facebook site that had been seen by more than a million people and had received more than 3,500 "likes". The campaign team had also created a video that had 4,500 views in its first three days on YouTube.

Thousands of people suffer from Ambady’s ailment - acute myelogenous leukemia (AML). Unlike numerous other forms of cancer, this one did have a cure. Over the years medical science had shifted AML from the realm of despair to that of established medical protocols leading to complete recoveries.

The technology involved was also fairly straightforward. Much like matching blood-types, the process started with match-making between patients and registered donors. Cotton swabs of inner-cheek cells were tested for ten characteristics of certain cells produced by the bone marrow called Human Leukocyte Antigens (HLAs). A 10/10 match was perfect while 6/10 ensured a fairly good chance of patient survival.

The doctors knew exactly what they would do as soon as they found a matching donor. They would stimulate the donors’ body to produce more Peripheral Blood Stem Cell (PBSC) using a tried and tested drug called filgrastim. A few days later, when the new stem cells were in full flow, they would be filtered from the blood-stream by connecting the donor to an apherisis machine. In a few hours these precious cells would transferred to the body of the cancer patient, helping her body helping the body replace diseased cells and resume production of healthy blood.

USAs National Marrow Donor Program had over 10 million registered stem cell donors. However, Ambady's chances had taken a hit in December 2012 after six matching donors had refused to follow up. Now the focus had shifted to India. Since Ambady was from Kerala, the possibility of finding a matching donor was highest within her own community.

The India campaign through newspapers, FaceBook, Twitter and Youtube, managed to persuade a few thousand donors to register. A vast majority of them - including our own swabs - turned out to be HLA mismatches. Even amongst the donors who did match-up, a bland refusal to follow-up stood in the way like a brick wall. One adult Indian donor's excuse was that his parents had refused permission.

To be sure, 'donor ambivalence' is not a new phenomenon. A study published by the University of Pittsburgh showed that race and ethnicity did matter when it came to unrelated stem cell donations. About 40% of whites and 60% of nonwhites were no longer available for ‘whatever reason’ to donate when contacted for confirmatory testing by blood sample. 10-23% of donors are unavailable specifically because they choose to opt out due to personal reasons.

So in a world where everything seems possible through science, technology and social networking, this might be a reminder that our own little fears and insecurities are only getting accentuated. Donors may be happy to register themselves but often backtrack when they are called to help.

Nalini Ambady also symbolizes something more basic - that even if you are a citizen of the world, even with the most advanced technology available, your survival might depend on your own little gene pool. Ethnic group, tribe and caste may not be things that an urbane intellectual or a 'citizen of the world' likes to wear on his sleeve. But the stark fact is that it does matter.

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