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Magazine
Against Odds
Tragedies and a public triumph
VANI DORAISAMY
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Senator Barack Obama’s appeal to save the life of a U.S.-based Indian doctor, Vinay Chakravarthy, has stirred a community into action.
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Photo: Seshu Photography
Fighting it together: Vinay Chakravarthy with wife Rashmi in his Boston hospital ward.
It was perhaps the earliest of Barack Obama’s campaign victories: the Illinois senator’s passionate appeal to save the life of a young U.S.-based Indian doctor has culminated in an uplifting narrative about the power of communal action, much before the race to the White House began.
Tucked into the scrupulously aseptic folds of his hospital bed in Boston’s Dana-Farber Cancer Institute, 29-year-old leukaemia patient Vinay Chakravarthy seems a mostly unlikely emotional rallying point for the multi-stratified South Asian diaspora in the U.S. But, seen alongside the life story of 32-year-old Sameer Bhatia — a Silicon Valley wonder kid who died in March this year — reports of the young doctor’s struggle for staying alive touched Senator Obama so deeply that he “[saw himself] in Vinay.”
An appeal that made a difference
“Vinay Chakaravarthy is…a son, a husband and an aspiring doctor….[together], we can save his life,” Senator Obama said in a public signed appeal in July last year, after he heard about Vinay from the volunteers of the advocacy forum “South Asians for Obama”: “We must encourage all of our friends and family inside and outside the South Asian community to register, commit to [bone marrow] donating and do so immediately. Together, we can reach out to communities across the country and remind them that we have a responsibility to help. We should all see ourselves in Vinay and realise that he deserves the same support that we would wish for a member of our own family or even ourselves.”
A native of California, Vinay was diagnosed with AML — Acute Myelogenous Leukemia, a rapidly growing cancer of the blood and bone marrow — in November 2006.
Under AML, the bone marrow produces abnormal “blast” cells, which, unlike normal blasts, do not develop into white blood cells that fight an infection. The bone marrow also produces abnormal red blood cells and platelets, all of which multiply rapidly pushing out normal white and red blood cells and platelets.
Any chances of survival depend on receiving a matching bone marrow from a compatible donor — almost always from the same ethnic/race pool, but not necessarily one’s own family. The problem, however, lay in finding such a donor, for, though a national bone marrow registry existed in the U.S., very few South Asians had actually signed up.
Obama’s appeal — together with a proactive multimedia campaign on all platforms — probably opened the floodgates, marrow donation volunteers say. Barely a year later, the number of registered South Asian donors has swelled by almost 27,000 and keeps increasing. Vinay himself kicked off the first such drive organised by Team Vinay — a working group consisting of family members, friends, activists and volunteers — in New York in October 2007.
For the Chakravarthys, the cause was both communal and personal: the family had moved to the U.S. from Chennai 35 years back. A student of the prestigious University of Berkeley, California, Vinay was serving as resident in orthopedics at the University of Boston, when the diagnosis knocked away the axis of an impeccable medical career.
Twin challenge
Even as the disease ripped through his compromised immune system, AML posed a twin challenge for Vinay: first, as a patient who had to live through multiple chemotherapies and second, as a doctor confronted with the reality that like him, several others too were unable to find a compatible donor.
He was not alone: he had a “blood brother” in Silicon Valley entrepreneur Sameer Bhatia who had received a similar diagnosis in early 2007 and fought a very public battle against the disease before he died in March this year.
Sameer had showed up nil blood cell production in his bone marrow — a medical condition known as aplastic anaemia — due to the multiple chemotherapies he had been receiving. When the diagnosis came, he had been married for barely a year.
A University of Stanford alumnus, he had founded the popular barter site, MonkeyBin in his late twenties and had scripted a success story by starting the mobile gaming company, Octane Technologies, with a capital investment of “just $ 4,000”.
A prolific blogger, he kept in touch with other leukaemia victims till his very last days through regular updates on www.HelpSameer.org
, an excruciatingly meticulous record of a journey into the dark recesses of pain and his fight-back.
Invisibility
What strikes one in the gut about the stories of Sameer and Vinay is the “invisibility” of the South Asian factor in the 6.5 million donors-strong U.S. National Marrow Donor Programme: only 1.4 percent of the donors are of South Asian descent .Retention rates (the possibility of a donor turning up for the actual donation when needed, as against merely registering) are still lower: while among other ethnic groups, it is between 70 to 80 per cent, for Asians, it is only 30 to 40 per cent and among South Asians, even lower. “Less than 50 per cent of south Asians who have been identified as a possible match for a patient, come in for follow-up testing,” says Asia Blume, Recruitment Director, Asia America Donor Programme.
Though 12,000 new AML cases are diagnosed in the U.S. every year, a South Asian’s probability of finding a bone marrow match is a pitiable 1: 20,000 while for Caucasians it is 1:15.“Though 1,22,000 South Asians have enrolled in the registry so far, the numbers still leave a lot to be desired, ” admits Blume. Amongst all Asian groups, South Asians form the single biggest donor group, followed by Chinese. There are a total of 81,000 Japanese enrolled, as against a mere 9,000 Vietnamese. Filipinos number even less.
The reason why the numbers game does not favour South Asians patients is because, many South Asian countries, India included, do not have their own national registries, leave alone link them up with the U.S. registry.
“Family pressure comes to bear upon a potential donor who then shies away from actual donation,” says Dr. Ron Jacob, Medical Director, South Asian Marrow Association of Recruiters (SAMAR). Faced with the near-hopelessness of finding a compatible donor, the Help Sameer and Help Vinay campaigns interlinked: their families rallied together to organise bone marrow donation drives. Technology was optimised by streamlining videos, podcasts, running pubic service announcements, circulating emails, blogging, Facebook, and posting videos on YouTube and Rapouts.
For Sameer, however, it was a case of too little too late. Doctors at the Seattle Cancer Care Alliance, where Sameer spent his last days, had earlier tried several unconventional therapies to stem the complications arising out of an infection. When he died, his white blood cell and neutrophil count were near zero.
The never-say-die blogger — (“Looking back at my life so far, anything significant I’ve achieved has been in the face of much greater odds. In fact, I have always thrived under pressure and cherished nothing more than beating the odds,” he once wrote) — is now near-iconic.
“He is our totem, somebody on whom the rest of us can hang our hopes and then hang on to our dear lives,” says 38-year-old Baltimore resident Aniruddha Vasudev, who has just begun chemotherapy after an AML diagnosis in late 2007.
Need for national registries
Though doctors and bone marrow drive organisers agree that Sameer and Vinay have together achieved the unachievable — of ensuring a long-winded stream of South Asian donors to the NMDP — they say swelling the numbers alone is not enough. “The momentum for separate but interlinked national registries needs to be generated,” says Dr. Jacob.
In his Boston ward, Vinay — accordingly to his family members — is too tired to even speak but is grimly determined to carry on Sameer’s fight. He had a relapse earlier this year after last year’s transplant. “The chemotherapy has made him very weak. We do not know if he will need another transplant,” says Parthasarathy Chakravarthy, his father. Sameer’s death had been particularly hard too.
The family, including wife of two years, Rashmi, is in it together, organising donor drives all over the country. The cause is larger than just Vinay or Sameer: “Families of patients need emotional support, something we are trying hard to establish by networking. Mostly, attitudes need to change, especially the stigma and aversion cancer patients face,” says Mr. Parthasarathy. The target has now been pushed to 50,000 donors from the initial 20,000.
Team Vinay can be reached by emailing priti.radhakrishnan@gmail.com, while SAMAR can be reached at www.samarinfo.org and the Asian American Donor Programme at www.aadp.org.
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