Will We Save Nalini Ambady?

From Kerala to Harvard and Stanford, from getting an award from Bill Clinton to helping Malcolm Gladwell write a bestseller, Dr Nalini Ambady has been a pioneering hero. Today, her life hangs in the balance due to a leukaemia that holds her hostage to her genes. Her dramatic immigrant tale and the desperate fight to save her have captured the imagination of people across the world, but the question remains: What would it take for you to try to save her?

Dr Nalini Ambady
The young couple and their son hung about, sort of at the edge of my field of vision. I was explaining the process of swabbing your cheek – ten times clockwise, ten times anticlockwise, five times back and forth, repeat – to a stream of potential bone marrow donors. It was several minutes before there was a gap and I was able to turn to the couple; by now the son had wandered off by himself and was looking at a chart on the wall.

"He needs a donor too," they told me, pointing to the son, a wiry 9-year-old wearing a yellow t-shirt. "We're now searching for one in Germany." But what about here in India? "Haven't found one yet."

Had this family come here hoping for some kind of help from us in finding a donor for the son? But surely they knew that this was just a drive? Just a place where potential donors signed up? They must have seen the question in my eyes, because she quickly added, "We've come to see if we can be donors."

So here it is. The boy has an impossibly rare disease that will eventually turn into leukemia. His best hope is to find a bone marrow donor. His parents got themselves tested to see if either could donate their cells to him. Neither matched. But they have their so-called HLA reports. When they heard about our efforts to find a donor for Nalini Ambady, they travelled across Bombay to get here, son along for the trip, to see if either of them could be a match for Nalini.

"You see, we too found a donor," said the mother, Kavita. "Just like with Nalini. But he backed out too. So we came to meet you."

Call me a crybaby. I couldn't push away the lump that rose in my throat.

***

As a student and later as faculty, Nalini Ambady has attended a string of some of India's and the world's best-known educational institutions. The Lawrence School, Lovedale; Lady Shri Ram College for Women, Delhi; The College of William and Mary, Virginia; Harvard University, Cambridge; College of the Holy Cross, Massachusetts; Tufts University, Boston; Stanford University, California.

As these things go, that list by itself says substantial things about the kind of person this is. But there's more than just distinguished institutions.

 Ann Ninan, a Lawrence School classmate, told me that Nalini was a "natural actor [whose] interpretation of the formidable Lady Bracknell in Oscar Wilde's comedy The Importance of Being Earnest, the school play in our final year, had the audience cheering on its feet."

In 1993, Nalini won the American Association for the Advancement of Science Prize for Behavioral Science Research. President Bill Clinton gave her the National Science Foundation's Presidential Early Career Award for Scientists and Engineers for 1998, "for fundamental contributions to understanding accuracy of social judgments based on 'thin slices' of information and development of undergraduate and graduate courses on related topics." Some years later, Malcolm Gladwell wrote his bestseller Blink about the implications of these thin slices; in fact, his first chapter is called The Theory of Thin Slices: How a Little Bit of Knowledge Goes a Long Way". "Nalini Ambady's research," he wrote, "showed how much we can learn about a surgeon's likelihood of being sued if we get beyond the diplomas on the wall and the white coat and focus" – ready for this? – "on his or her tone of voice."

I got to know Nalini separate from her awards and recognition. I first met her because of one of my closest school friends from Bombay, Raj Marphatia. A stellar student himself, Raj was chasing a law degree at Harvard in the mid-1980s. Nalini was at Harvard too, in the middle of a PhD in psychology. Someone introduced them, they began dating, and were married in 1988.

One November soon after, I spent a long weekend with them in Boston. There was a massive pizza party in Nalini's poky graduate student digs. Raj was always partial to pizza from some nearby dive, and Nalini had become a convert. Another long weekend was in Puerto Rico, where Raj was working with a judge. We spent a day driving along La Ruta Panoramica, twisting through the hills in the centre of the island. Inevitably, I got car sick. We stopped and, like magic, Nalini produced a large orange. "Sniff the peel!" she ordered. "You'll feel better." I did, and like magic, I did.

Later, they were the first friends my wife and I informed when we decided to marry. In 1994, we began our honeymoon at their home outside Boston, smack in the middle of the coldest winter in years. We even dressed up and attended the function where the AAAS awarded her that Advancement of Science Prize.

In May 2004, we visited them in Boston again. By now they had two daughters, 10-year-old Maya and seven- year-old Leena. While we were there, some startling, sobering news: Raj was diagnosed with cancer in his kidney. He was successfully treated – his kidney was removed and he returned home to recuperate. Less than a month later, cue still more sobering news. Nalini was diagnosed with acute myelogenous leukemia (AML).

Husband and wife, stricken with cancer within weeks of each other: what are the odds?

Amazingly, both made swift and complete recoveries. By the beginning of 2005, they were back at their jobs: Raj as a partner in the major Boston law firm, Ropes & Gray, Nalini as a tenured professor at Tufts University. Several healthy, happy years followed: the girls grew into young women; Nalini taught at the Tufts summer school in France. In 2011, Stanford offered her a position. It was too good an opportunity to pass up. That year, the family moved to California.

Fast forward a year. Thanksgiving weekend, November 2012: Nalini had laid on a Thanksgiving feast for her students who were not able to return home to their families. Raj was in Bombay to visit his parents.

As he usually does, he stopped at our home for dinner on his last night and I drove him to the airport afterwards. Close to 24 hours later, he got off the plane in San Francisco to hear that Nalini's AML had returned, in a significantly more aggressive, virulent form.

Despite just receiving the news, Nalini had her students over as planned, even though she could not eat what she had made for them.
Kindness like that explains why so many of her students have rallied behind her through her battle with the disease. They speak of her as family. "I've never met anyone who does so much to make others feel valued and cared about," said Aneeta Rattan, one of the postdoctoral researchers in Nalini’s lab at Stanford. She would know. The day after Nalini was diagnosed last year, Aneeta had a job interview. After it was done, she called Nalini to ask how she was, only to hear these words: "Hey, I've had cancer before, but this was your first job interview so that's way more exciting – tell me about it!"

As these things go, Nalini's campaign website says it straight up: "Beloved mother, friend and professor Nalini Ambady has to find a South Asian bone marrow donor as soon as possible. Will you help?"

***

In a few words, Nalini's bone marrow was diseased.

Marrow produces white blood cells for the body. As all of us learn while growing up, WBCs are the good guy cells who fight infections for us. They rush to the site of wounds, for example, and wage war against the bad guy cells who are trying to make us sick. This is why we have pus: it's made up of valiant WBCs who have fallen in battle. Now I'm no doctor and I don't know how accurate this picture is. But it served well to impress on my impressionable young mind the role and importance of WBCs.

When your bone marrow is dysfunctional, it cannot produce WBCs as it should; in fact, acute myelogenous leukemia (AML) actually makes the marrow produce abnormal WBCs that cannot fight infections. As you can imagine, this leaves you far more prone to infections than you should be. Wounds and illnesses a healthy person sees off without worry become serious concerns.

Which, in a few more words, is Nalini's problem. Cancer might seem like a hard-to-understand disease, but in the case of AML, it is really this simple. 

Treating it means restoring her marrow to functionality. The best way is to find her a bone marrow donor, for an infusion of healthy cells will regenerate Nalini's marrow. Only, this is not a matter of merely extracting marrow from a random passerby and injecting it into Nalini. Like blood, marrow comes in certain types. As with a blood donation, you need to match the types (called HLA, or Human Leukocyte Antigen) of the patient and the donor. But they are hard to match since there are 10 different characteristics to your HLA type; an ideal match would be if you and your donor match in all 10 characteristics.

Across the world, there are various different databases, or registries, of potential marrow donors. Nalini began her search for a donor by checking the US registries for someone whose HLA would match hers. Just after Christmas last year, she got news that there was not just one but 12 potential donors. "The best Christmas present ever," her daughter Maya wrote to me. "We immediately called everyone we knew to spread our Christmas joy."

Joy, for sure. In hindsight, it probably left some of us a trifle complacent.

Within weeks, all 12 donors had fallen through. On confirmatory testing, six were not a "full" match, meaning only some of the 10 characteristics actually matched. This ruled them out. The other six? As Maya wrote in an essay for CNN: "We were shocked when we got the heartbreaking news that half of the potential donors had refused to follow up." No reasons given.

After consulting various specialists, Nalini and Raj decided on a second-line attack on the cancer: the so-called "cord-blood" treatment. This process involves giving the patient cells from an umbilical cord (sometimes two). Mothers who give birth can now often opt to save the cord in a bank instead of disposing of it, and thus keep these young, vigorous and healthy cells available for a future baby, or for someone like Nalini.

Though, of course, there are risks. Vikas Bhushan, an oncologist friend, explained to me, "Umbilical cord cell transplants tend to have some unique problems. Patients take longer [for their] blood counts to improve and … longer to recover their immunity, [so they can still remain] severely immune compromised for several months."

In other words, AML patients – already prone to infection because of the disease – remain prone to infection for months after the cord procedure too. This is why an adult donor is usually a better course.

But by February this year there were few options. Nalini and Raj made plans to go to the Dana-Farber Cancer Institute in Boston for the cord-blood process. Just before they left, a further complication arose. Nalini developed a cardiac problem and had to be hospitalized. This crisis didn't last long, and they did eventually travel to Dana-Farber. But the doctors there told her that her heart was presently too weak to allow a cord-blood treatment. She'd have to wait for it to regain strength, which could take three to six months. In the meantime, they said, she could resume her search for an adult donor.

***

We are now in about mid-March, 2013. Having failed to find a matching donor in the US databases, Nalini's friends decided on a two-prong strategy. Prong #1 would be to get more people, and especially more South Asians, into the US databases. Prong #2 would be to search for a match in the Indian databases, and simultaneously work to get more new people in there as well.

If you're in need of a marrow donor, the best chance of a match is a person who shares the same ethnicity – as narrowly defined as possible – as you. Get further away, ethnically, and the chances drop. Thus the best hope for Nalini was to find a matching donor from her own tightly-knit Kerala Nair community. Failing that, an Indian or South Asian donor. Failing that, somebody else altogether. It's not that the Romanian tennis player Simona Halep cannot be a match for Nalini. It's just that she is considerably less likely to be one than Sania Mirza would be, and in turn, Sania is less likely to match Nalini than PT Usha is.

There's a reason for the athletes’ names above. Nalini's school chum Ann Ninan joked to me, "I was the athlete, and she'd laugh over her own athletic abilities hampered by asthma. She could turn on [her asthma] when pushed to do anything more strenuous than walk." An athlete donating for Nalini would be terrific, if tinged with some irony.

All the talk about matches inspired Nalini to, of all things, doggerel. She wrote her own version of the song "Matchmaker" from the musical Fiddler on the Roof and sent it out to her friends:

Matchmaker, Matchmaker
Make me a match
Find me a stem-cell donor
A bone-marrow catch!

Matchmaker, Matchmaker,
My match can be young or old
Happy, sad, fearful or bold
My match can be a he or she
(Raj won’t mind whose cells run though me)

Matchmaker, Matchmaker,
Make me a match
Oh, a perfect 10 would be such a thrill!
But a 9 just might suffice as well…

Matchmaker, Matchmaker
Make me a match
My match can be from anywhere
Nationality, politics, sports fans – I don’t care

Matchmaker, Matchmaker
Enough of this hype
Find me one whose HLA is just my type

Matchmaker, Matchmaker,
Just one last plea
Please do your best ASAP!!!

But seriously, how likely was she to find a match? Aneeta Rattan was part of the US campaign to find her a donor and wrote to me about the experience:

I have not had a strong understanding of what our odds of finding a match for Nalini are … As a scientist, knowing those odds would have let us know how many people we needed to register in order to have a realistic chance of finding Nalini a match. However, given that statistics such as these seem to either be missing or just nonexistent for South Asians, we had to work blind, just trying to register as many people as possible.

Thus Prong #1. Team Nalini USA set up a website, helpnalininow.org, which listed upcoming drives to sign up donors along with extensive material about Nalini, the process of donating, the urgency of it all, and even a poem by her daughters Maya and Leena.

And then there are the Indian databases (DATRI, MDRI and others). Remember, there are two reasons for the low chance of a match for Nalini in US databases. First, Indians make up a tiny fraction of the names there. Second, the chances of a match decline among non-Indians. Indian registries, in contrast, are populated almost entirely with Indian names, so you'd think the odds of a match would be better than in the States. But Nalini's chances remain low here too, because there are just so few names: Indian databases, put together, have only about 50,000 registrants – compared to about 20 million worldwide.

Thus Prong #2. Starting about the end of March, Team Nalini India – a gaggle of her and Raj's school and college friends, myself included – started signing up people individually and in a series of drives in Delhi, Bombay, Cochin, Trivandrum, Chennai and Bangalore. By the end of May, we had signed up about 2000 potential donors. The great majority of these were with the Chennai-based database DATRI (datriworld.org).

As we worked, we became better aware of the odds, and thus my suggestion above of complacency. We could not help wishing we had got Prong #2 off the ground in December. The more time we could have given ourselves, the more people we could have signed up, and the better we could have made the odds – even if incrementally.

***

In mid-April, we heard about a so-called "6/10" match for Nalini in the MDRI database. Of course he – for convenience, I assumed he was male as this episode unfolded – would have to be tested to see if he was a full 10/10 match. But here was hope, at any rate. All that remained was to persuade him to donate. MDRI's doctor was on the job doing just that. Surely an easy job, we thought.

Our first inkling that it wasn't so easy was when days passed without any news from the volunteer. Why should something so simple take so long? He was talking to his parents, we heard, thinking hard about the donation, and so needed more time to decide. But after a week, this note arrived from the doctor:

Subject: The Ambivalent Marrow Donor or The Failure of Good Initial Counselling

Dear All,

I regret to inform you that I was unable to convince the potential donor (as well as his family), despite an exhaustive telephone interaction this evening. It would not be proper to approach him repeatedly and try to make him reconsider his negative decision. The entire family is absolutely against this concept of stem cell donation. The bad news will have to be conveyed to the patient's family. They will need to search other registries.

(So it was a male).

"Absolutely against"? Why then did he insinuate himself into the registry in the first place?

I imagine him coming upon a drive much like ours. I imagine him signing up in a fit of enthusiasm that drowns out advice about what the donation itself involves. I imagine him going home in a warm fuzzy cloud, feeling good about himself. Months or years later, he's called to donate. Reality bites now. How telling the doctor's subject line was. Indeed, why this devolved the way it did was a toss-up between his ambivalence and the failure to adequately counsel him when he signed up.

Even if the odds of him being a full match were low – a 6/10 match is only a few notches above no match at all – there was still hope riding on him. Which of us would not choose to – want to? – believe that, rather than pay attention to the "entire family", this donor would opt to save a life? But faced with the here-and-now of donation, this man opted not to go ahead. Apparently such backtracking is far more common than anyone has a right to expect: there is a 50 percent attrition rate, one registry chief told me, whether in the US or Europe or India.

Weeks later, it happened with another potential match for Nalini, this time an 8/10 and so an even likelier match. This man wanted to watch someone else donate their bone marrow before making up his mind. A registry chief actually arranged this for him in early May. Somehow, it wasn't persuasive enough. He, too, decided not to donate.

And yes, the young couple I began this piece with – Kavita and her husband – went through the same heartbreak. They actually found a full match – a 10/10 – for their son in an Indian database. Much like our 6/10 dude, days went by without an answer from him. Eventually, he surfaced with the news that he was getting married soon, and so, after consulting his parents, he'd decided he didn't want to donate.

Much later, I met Kavita at her home. All she knows is that her son's potential life-saver was a software engineer in his late 20s. She said she now goes through her days looking askance at every man who looks like he might be that age, might be in software. "I feel I should walk about in public muttering loudly about my son," she told me, "and maybe one day I'll pass this guy somewhere, he'll hear my words and change his mind."

What are the odds, of course. And yet who can blame her for a thought like that? Are those odds better or worse than the odds of finding a donor in the first place?

"What is this about checking with his parents?" Kavita continued. "Did Ajmal Kasab ask his parents before attacking the city? Raj Thackeray's MNS people, when they want to cause a riot, do they ask their parents? But here's someone who can do good, he can save my son's life, and he has to ask his parents?"

Nalini reacted similarly. While waiting for the 6/10 MDRI donor to make up his mind, she wrote to us: "Is there anything we can do to persuade him?  Arghh!! Do the people from the hospital meet him and his parents personally? And inform him about the procedure? I am fine with them telling him I have 2 kids!" And later: "I think there is a lot of fear and ignorance about the process which is upsetting. How often does one can get the chance to save a life at the mere cost of a few days of discomfort?"

How often, indeed. A good friend of Nalini and Raj’s, Alice Senko, donated her bone marrow for a cancer patient some years ago. In a note she sent me, she wrote:

The odds of being chosen from the bone marrow donor registry are slim – but minuscule odds are realized every day. I was absolutely elated to receive notice that I was potentially a life saving match for a person with my genotype. I did not know the person and it didn't matter, I was helping someone who wanted so much to live. I could not wait to get started and was imagining the relief and pure joy on the other end when a doctor could tell her patient that there was hope for life saving treatment … You can create the opportunity to save someone's life by getting on the registry and if you are selected to do so you are very, very lucky.

I was a stem cell donor which means I was given medicine to increase my own body's stem cell production for a few days before the blood draw began. Ironically, the side effect of this medicine felt to me much like morning sickness or a minor bout of flu and lasted about one- two hours per day for three days; I went to work as usual. I then had two six hour sessions in the hospital of simple IV blood draw and then went home. I was tired over the next few days and that was it. For me, there was very little discomfort and giving up a few days of my normal routine to give someone else the chance to live is something I would do again and again and again.

Please think about what it would mean to you if your loved one was in need and could be helped by someone else. Please think that it could be your child or your spouse or your dear dear friend who is in need this year or next and that there is someone out there who could save him or her … We are all in this together.

Who would pass up that kind of chance? Apparently, and sadly, plenty of people.

But even during those agonizing days, Nalini's own research offered her insight into donor behaviour. In an introspective moment, she wrote to me:

There is so much that social psychological research and insights can contribute to improve this [donation] process. For instance, we know people are less willing to help an anonymous, de-individuated person. From our research, we know ways to get them to think of the potential recipient as a real person instead of an abstraction. … We also know that people are more likely to help when they feel responsible. We all have a tendency to "socially loaf" – to assume that there are others who can and will help. Knowing that one is, perhaps, the only person who can save a life is critical to motivating one to donate."

Not surprisingly, this echoes what people have found about other donations: It is "something that people know they ought to do for the good of others, but there's little individual incentive," writes Will Oremus in a recent article on organ donation for Slate.com.

For me, absent the luxury of professional perspective, there were only questions. What causes the greatest heartbreak, I wondered. A match who, on further testing, turns out not to be a match? A match who, faced with the actual donation, listens to others and declines? Or no match at all?

***

By mid-April, we had donor sign-up drives running in Delhi, Bangalore, Cochin and Bombay. We had a full-time coordinator for the south, Sharnitha, in Bangalore. In Bombay, we started by ordering 300 kits from DATRI. These are used to collect samples from potential donors by swabbing the insides of their cheeks. Mindful of the "failure of good initial counselling", we also carefully compiled a FAQ list addressing various concerns people might have about the process of donation. In particular, a drug used in the procedure. In particular, too, the mention of "marrow".

People have an instinctive aversion to the word "marrow", or, more correctly, to the suggestion of extracting it. The image of a long needle piercing a bone is disturbing, I imagine. Yet early on, we learned that the majority of marrow donors these days, and certainly all who go through DATRI, in fact do not have their marrow extracted in this way. Instead, they go through a peripheral blood stem cell (PBSC) donation.

As our FAQ explains:

PBSC is a non-surgical procedure. Doctors remove blood from one arm, it will pass through a machine that separates out the blood-forming cells (a process called "apheresis"), and the remaining blood is returned through the other arm. You may experience tingling around the mouth, fingers and toes and mild muscle cramps.

The procedure takes three to four hours, but apart from that is reminiscent of, and really no more threatening than, a blood donation.

But the drug, the drug. For five days prior to the PBSC procedure, the donor is given a drug called filgrastim. This stimulates the production of WBCs – remember the good guy WBCs? – in their bone marrow. These are the stem cells that the PBSC procedure harvests. They can then be implanted in a patient, and if all goes well, they will regenerate the patient's marrow.

Straightforward? Yet like nearly every other drug, filgrastim can cause side effects. Again from our FAQ:

Serious reactions to the drug are very unlikely, which is why this drug is used in over 75% of bone marrow donations. The more common side effect is temporary bone and muscle aches. Only rarely are there are more serious side effects, including: easy bleeding/bruising, bloody urine, bloody vomit, fast/irregular heartbeat, fever, muscle pain, joint pain, fast breathing, trouble breathing. A very remote possibility is fatal damage to the spleen.

All digestible stuff, or at least not terrifying stuff, until that last sentence. "Fatal" damage? True, that is a possible side effect. But also true that such damage is a "remote possibility." The US alone has seen tens of thousands of filgrastim-enabled donations without any problems. Yet its mention in our FAQ understandably alarmed many potential donors. Yet, too, what choice did we have but to mention the risks? A donor would learn them at some point anyway. Explaining the risks before they swabbed, while emphasizing how remote they are, was a chance we had to take. Better they decline at swab time rather than when called in to donate.

With the latter, the heartbreak gets harder to take each time. Maya and Leena circulated a tongue-in-cheek Top 10 list of tactics Nalini uses to increase her BP when it falls. #6 was “Thinking of all the people she might run into whose papers she has rejected.” #7: "Thinking of Japanese beetles attacking her plants." But #1 was: "Thinking of the 6 who said no."

Maybe not quite so tongue-in-cheek.

***

The Bombay team's first organized drive was in Santacruz. It taught us a swift lesson. We put the word out using Twitter, via several active and keenly-followed Twitterati. In fact, the idea for the drive came from one such Twitteratus. Result: over five hours, we got 15 potential donors. Of those, our frantic tweets prompted four – count 'em, four – people to turn up. Social media, not quite what it's cracked up to be.

So for the next drive, we went traditional. Trying to target Kerala folks – pursuing their ethnic connection to Nalini – we put an ad in Malayala Manorama and spoke to various Kerala union and community groups. This worked better. That Saturday in a Matunga hall, we had a steady stream of possible donors, close to 90 by the end.

And with these first two experiences showing us the way, the team organized several more – in Nerul, Malad, Dombivli and New Bombay. The result, by the middle of May, was close to 350 swabbed kits.

It's good to retain some perspective here. In about the same timeframe, Sharnitha ran drives in Cochin and Trivandrum that brought in about 1250 kits. It helped that Sharnitha is a lady with barrels-full of energy. It also helped that, having lived and worked in Kerala for years, she knew many people who had already heard about Nalini and wanted to help.

Besides, something about the story of this far-away professor fighting for her life touched chords. In one of our Bombay drives, besides Kavita and family, we met a couple who had travelled three hours from Nashik to offer their cheeks for swabs. In Kerala, those who turned up included vegetable vendors and rickshaw-drivers, someone who had previously donated a kidney, a registered organ donor who wanted to be of use while he lived. Many travelled for hours by public transport to sign up.

"The kindness and compassion," Nalini said to us, "has been overwhelming. Makes me teary."

It overwhelmed us all too. Several who worked on this campaign described the experience as uplifting. Certainly I felt that way. Of course there was the shadow of Nalini's cancer, the dismaying news of donors backing out. But there was something about working together for this cause that filled us with ideas and energy. We were optimistic. We were hopeful. Even when the campaign came to an end – beyond mid-May, new signups would be of no use to Nalini – we knew we could have kept going.

It was even hard to hold on to anger towards the occasional hope-dampeners, and I mean here the backpedalling donors. The MDRI match that fizzled, for example, left me depressed for a while. But there was perspective from my friend Sudhir who was part of our Bombay team. "I can fully understand the predicament of the potential donor and his family," he wrote to me after the campaign wound down. "I have no negative thoughts towards the donors who backed out."

***

Despite these efforts, there is, of course, another bottleneck to growing the Indian registries. In two words: the cost. Once you send your swab sample to DATRI in Chennai, they do some data entry and send it to a lab in the US called Histogenetics (histogenetics.com), which then generates your HLA report. When that is done, you become part of the DATRI database.

For this process, DATRI charges a fee of Rs 2500 per sample. The average potential donor balks at this amount. In our case, we made it clear that while we would of course be glad for people to pay, we were more interested in their swab samples. If they were willing to sign up but could not pay, they should go ahead. We would arrange for the funds.

One day, an 85-year-old man, P, called and offered to pay for 10 kits. He wanted one of us to arrange to pick up the cheque. That evening, I called.

"Come tomorrow for the cheque," he said. "But bring me a car."

"You want a car?" I asked, bewildered. "Do you need a ride somewhere?"

"No, no! Bring me a car! Give me a Honda car and I will give you the cheque."

I hung up. We never heard from P again.

Hondas aside, there was a limit to how much money we could put together to pay for these kits. Which raises the question: how will the Indian databases grow to any reasonable size with costs like this?

"What we South Asians really need," said Aneeta after working for months on trying to find Nalini a donor, "is a registry in India that is free and does not charge donors. Or to use Germany's system, which has people 'opt out' if they do not want to be donors but otherwise automatically enrolls people."

Which is why Germany has nearly 5 million names registered in 30 bone marrow donor centres. One of those is DKMS (Deutsche Knochenmarkspendedatei, or German Bone Marrow Donation Centre) in Tuebingen – with close to 3 million registered names, it is the world's single largest marrow donor centre.

Numbers like these make any comparison to India almost laughable. Five million Germans registered out of a population of 80 million; 50,000 Indians registered out of a population of 1.2 billion. It might be easy to attribute this to cultural differences, the West vs. the East, but the truth is probably more mundane. German and other Western databases were started much earlier than the Indian ones, so they've had time to build up numbers. But more importantly, there's no cost to the donor to sign up there.

Still, you wonder: If Indians were registered in the same proportion as Germans are, there'd be 75 million names in Indian registries, not a mere 50,000. Compare 75 million to the worldwide total today of 20 million. Think how 75 million names would increase the odds of someone like Nalini, or Kavita's son, finding a match.

***

As I write this, there is news of one more 8/10 match: someone in the US has agreed to donate their bone marrow to Nalini. If all goes well, she will be at the Dana-Farber centre in Boston on July 22nd for tests and will be admitted on the 31st. The donation is supposed to be around August 6th or 7th and the transplant a few days later. (Meanwhile, her heart is now stronger than it was in February, so the Dana-Farber cord-blood treatment was also a possibility in case the donor had not agreed).

Nalini will have to spend 100 days there post-transplant within a 30 minute drive of a hospital. So the family will rent an apartment in the area. All her friends will be watching. Hoping.

But me, I lied. I still do think about those hope-dampeners, whether in Nalini's case or in Kavita's son's case. And when I do, I remember Cameron Lyle.

A 22-year-old star shotput athlete in New Hampshire in the US, Lyle was training for one of the last competitions of his collegiate career, the celebrated Penn Relays scheduled for April 24-26 this year. Given his record and his abilities, a possible gold medal beckoned. But Lyle had also once signed up as a bone marrow donor, and in March, he got a call. Would he donate for a 28-year-old leukemia patient?

Lyle said yes. On April 25, while elite college athletes like him were competing in the Penn Relays, Lyle was in a hospital in Boston donating his marrow. He gave up his chance to win a medal. He saved a life.

And so I ask again. What causes the greatest heartbreak? A donor match who, on further testing, turns out not to be a match? A match who, faced with the actual donation, listens to others and declines? Or no match at all?


Or the example of Cameron Lyle?

Please go to www.helpnalininow.org to help Nalini Ambady and others.


Dilip D’Souza writes to keep his cats fed. This pursuit has resulted in four books (most recently, "The Curious Case of Binayak Sen" and "Roadrunner: An Indian Quest in America".) and several writing awards (the Newsweek/Daily Beast Prize and the Outlook/Picador prize, among others). The cats seem happy. Follow him at https://twitter.com/DeathEndsFun


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