A tragedy, in five lines;
This is Vinay and his wife Rashmi.
They were married in 2005.
He was diagnosed with a rare form of leukemia in 2006.
He is 28.
He needs a bone marrow transplant, in the next six weeks.
If you aren’t already part of the National Marrow Donor Program registry, please consider what you would be going through if this were your little brother, childhood friend or husband. Wouldn’t you want as many desis as possible to be in the database? Vinay’s greatest hope lies with someone like him, but the number of us who are registered is so low, it’s pathetic.
All it takes is a few minutes of your time. A swabbed cheek. And maybe, with that selfless gesture, you increase the chances that this person who probably has so much in common with you goes on to live the life we all deserve.
This is what Vinay’s parents have to say:
We cannot express in words what this is like. All we can do is implore you to close your eyes for a moment, and imagine that this is your son, your brother, your best friend. We are guessing you would move heaven and earth to help save his life…
Vinay is the world to us – he is warm, funny, loving. We have watched him grow from a little baby, to a young boy playing sports, to a fine young man determined to be a doctor, to a man marrying the girl of his dreams. Please help us help our son have a chance to live – to be with his wife, with us, and his friends. [Hema and Partha]
Drives are planned in Fremont, Cerritos, Anaheim and Livermore; additional information may be found here. Speaking of additional information, when I numbly surfed through Vinay’s website, the following three points made me cringe:
When a Caucasian is looking for a match they find 15 matches on an average where as opposed to an Indian they might find one match or none.
This can happen to anyone at any age and god forbid if you get into similar situation then this will be the only registry that will come to rescue.
There is no such registry in India and when an Indian kid is looking for a marrow match this registry is the only resort. [HelpVinay.org]
We’ve written about others whose lives were similarly threatened by our failure to represent in such a vital way. What would it take to move you to get involved? Would it matter if I told you that like every 8th desi, he’s from Fremont?
That he went to Ardenwood and eventually UCB (though not this UCB)?
That his favorite books were The Hobbit and Midnight’s Children?
That he liked The Godfather (but only 1 and 2), Garden State and Million Dollar Baby?
That he’s Seshu “Tiffinbox” Badrinath’s cousin?
He listens to Coltrane, Miles Davis and 2pac?
And yes, like every male I know, he likes to watch Scrubs and Sportscenter?
Do you identify with him yet? I pray you do. Because one of you could be his match and that would be the sweetest thing. My Uncle died of Leukemia and I’m sure each of us knows someone else who has been similarly affected. Many of you possibly know Vinay, his wife Rashmi or his brother Bharath; I hope that even if you don’t, you’ll do the right thing and offer the tiniest part of yourself up. I dream of a day when we don’t have to forward these heartbreaking stories via GMail, publicize links to websites set up for the most tragic of reasons, pass around PDF flyers or beseech each other to get registered. It shouldn’t be this hard to save a life.
a link is going up on my blog tomorrow morning (maximal traffic).
thanks, honey. that’s wonderful of you.
anyone else want to offer up some virtual real estate?
The people treating this patient will be charging $100K – $200K; perhaps more! How much does the bone marrow donor make? I am with the Libertarians on this one. If the matching donor got $50K for his trouble, we will NOT be having to beg for people to go through the inconvenience…
Oh, wow.
Okay. My head is spinning, but the only two things I need to say are that it (and by it, I mean what I am “begging” people to do- get put in the db)wasn’t inconvenient at all– I got printed at a South Asian event and it took less than five minutes…and who on earth would pony up the $50k? What should poor people with leukemia do? I’m troubled by the idea of considering one’s bone marrow or organ as a commodity instead of a donation. shudder
I understand that people “donate” in exchange for money (so not really a donation at all, e.g. blood), but this really frustrates me. Why can’t people just get registered in the directory? That’s all folks are asking for. Not a donation, but a registration. It’s relatively non-invasive and saves lives.
All the drives listed on the website are on the west coast… wonder if we can do a drive for Vinay on the east coast – DC, Boston and the like. Don’t know too many people in DC but would like to help..
is there any way to help in Toronto Canada?
If you are already registered, now is the time to update your contact information here.
Every south asian convention should have one of these stalls. All it takes is five mins.
guys, please do you best to register. you can also find out more information about drives through the NMDP’s south asian branch, SAMAR. it’s really important to increase the number of desis in the registry, because you have a better chance of finding a match within your ethnic group, and so far, desis are the lowest registered group percentage-wise. i have been involved in several SAMAR drives, and it is very sad that lots of desis are so apathetic to this situation. though, in my opinion, the younger lot are for more willing to register, so i am glad it’s on this blog. thanks for posting about this, anna!
Anna
Thanks a gahzillion for mentioning this on Sepia Mutiny. You rock!
For those on the registry, there must be a commitment to donate if there is a match. It is not “please just register”, I hope none of you spin it this way to boost up numbers. It is more heartbreaking to find a donor who chickens out. Secondly, a donation is not like a blood donation, it involves considerable time investment from the donor and involves surgery. Finally, to register, most places charge the donor—and if there is a match, it may impose significant financial burden on the donor as well.
It is therefore a personal choice for many, you should not guilt people into doing this. Paying donors is not really far fetched, I would not mind paying the donor. In fact, it can be made more systematic—one could envision a form of insurance to pay donors.
South Asian numbers are low since non-SA’s outnumber SA’s by about 150:1. It is tragic, but the way out is a more global marrow program.
unless you go the pbsc route.
Hold up, wait a minute– it cost me NOTHING to register. I have never heard of a charge to do so at a drive. Does anyone have more information before we scare off the desperately needed and potentially interested?
I was also under the impression that all costs for the donor are taken care of? I mean, you’re right, no one should be guilted in to doing anything, but I don’t think it’s as dire as your comment makes it seem either. If you believe in seva, is there any greater way to offer it?
Apologies, I didn’t realize registry required a donation in the case of a match. I still think it is worth it, despite the big honking needle if you do match, but better to register when you know the whole story. Thanks, bytewords. 🙂
Guys- I have a question. I have registered in the past, but now I realize that I was placed into the general bank of donors. Is there a South Asian donor bank to up the possibility that a match is found? Also, after reading this post I realized that I missed a Chicago donor drive that just happened this morning! If anyone knows of how I can go about doing this in Chicago, please let me know. And thanks A N N A for bringing this to our attention.
Can we register if we live in Canada? Anyone know? Must be some agreement in place.
For Canadians, you can register as follows: https://www.blood.ca/Web/cbswebforms.nsf/page/E_ubmdrPKG-intro?opendocument
Canadian Blood Services does matches for patients around the world.
DQ, thank you so much for finding that out. I’m sure many people will be grateful for the information since for every one person who actually asks about this, there are ten others who are lurking, etc.
i plan to go to one of the west coast blood drives this weekend. i talked to friends and relatives and forwarded them the links to this and vinay’s page. they’ve sent it out to lists that are read by hundreds of south indians. god knows (no pun intended) we iyengars are all related somehow, so hopefully a match can be found.
this is totally uncanny. I was set up with this girl, sort of, in 2002. Wow. talk about small world. This is totally, completely not a joke. Im completely clueless about how this works, what actually happens, you get swabbed at a center? and it goes into some national database? how do you support him directly?
Oh, what a wonderful thing. 🙂
That’s exactly why I sent it to my closest TamBram friends, after guessing that Vinay might be one of their own…I don’t know anything about how this works (that’s what Razib and KT are for) but I guessed that maybe he’d have an even greater chance with someone even more like him? I’m just glad people are willing to get involved. This could be any of us.
HMF, these days the actual registration process is simple – you go to a drive/center, fill out some detailed information (i think even if it is not a south asian-focused drive, you can indicate your ethnicity) and they take a swab from the inside of your cheek. i think these days you are also given an ID card. the bigger commitment is if you match up with a donee – if everything matches up, they remove your marrow (i think from your spine) and transplant it to the donee. this is the part that usually scares people off – but it’s a worthy cause, and the hospital stay, and pain, is generally under a week.
they note your ethnicity upon registration – but your marrow still goes into a national database. it is just more likely that donees will find matches within their own ethnicity. but theere have been cases of e.g. caucasians donating to desis, and other cross-ethnic matches.
It breaks my heart to see people suffer like this. I really do hope he finds a match and will be able to live with his beautiful wife for so many yrs. 28 yrs? That’s my age. Now you know why i can’t work in an Onc unit. i just can’t watch this 🙁
I don’t know anything about how this works (that’s what Razib and KT are for)
pretty simple, tissue matches are not either/or from what i recall, they try to match as closely as possible but sometimes that doesn’t work. the loci in question involve HLA. it works like this, two genes
HLA 1 and HLA2
they come in many, many, flavors, so
HLA-1 (a-z) and HLA2 (a-z)
so, you can get as many combinations possible across the two. humans are diploid so we have two copies, so
HLA-1 (a-z) and HLA2 (a-z) copy 1 HLA-1 (a-z) and HLA2 (a-z) copy 2
you want people to match up flavors. this is a really diverse genetic location, so even with siblings good matches are like 1/3 from what i recall. differently populations have different proportions of the a-z flavors, so of course the combinations will be present at radically different frequencies. this is why i have noted that biracial children are problematic, they get copies from both parents, so they might very unique (i.e., that’s why there was a case of a half-thai half-white kid going to thailand, that combo is not uncommon there).
Re: Anna’s comment #4 from May 30, 7:42 PM (http://www.sepiamutiny.com/sepia/archives/004470.html#comment140186)
Maybe I wrote hastily. Let me try to clarify just one time.
If a matching donor got $50K for donating bone marrow, it will be a nice win for the donor. To get in the running for that win, there will be millions of people registering all over. It will solve the problem that everybody writes about: not enough registered and willing donors. I was not saying they should be paid for registering, which they will have to do to win the donor fee. This is my proposed solution. Economic incentives are a powerful motivator. Much more so than this appeals business. What are the doctors and hospitals charging for the procedure? Go find out; it will be eye-popping.
I may still go and register in Fremont, CA. I live there. But I hesitate as the actual procedure to extract bone marrow is not painless, and said to be quite involved. And potentially risky, too. And it will likely cost me half a day of vacation. So I have heard. So, given that I have 3 other mouths to feed all by myself, and nothing to look forward to except psychic rewards, it is a very hard choice. I would like to do it, but this “seva” business does not pay the rent. That is my harsh reality.
As for cost, once the donor fee becomes a “reasonable and customary expense” it will be paid for the same way the entire operation is paid for.
Amar, the problem with payments for organs is the potential for exploitation. This is why organ sales are banned, and the same issue exists with a “renewable” resource like bone marrow. There is also a danger that you will encourage high risk behavior like repeatedly donating such a resource (blood, marrow etc.) to feed other habits.
I don’t disagree with your economic argument, but the flip side is a concern too.
If we’re ineligible to donate bone marrow (I lived in the UK during the BSE scare), is there something else we can do to help? I am moved by Vinay’s plight, and I pray he finds a match soon.
I will register all the same though…if they turn me down, then oh well.
Anna, thank you SO MUCH for posting this. Vinay is my first cousin, and is a dear, dear person to me. I am planning on holding one, if not many, drives in the Houston area. Please contact me if you are in Houston, or anywhere in Texas, and would like to help, at roopa.vasan@gmail.com . And all you people I know are involved with sepiamutiny – Abhi, this means you! 🙂 – I will keep you posted about upcoming Houston drives. Thanks guys.
Also, in response to :
Amar: I may still go and register in Fremont, CA. I live there. But I hesitate . . . I would like to do it, but this “seva” business does not pay the rent. That is my harsh reality.
PLEASE go and register. If you do so at one of the drives in the Bay Area, which my family and family friends are running, it is absolutely positively FREE. AND it only takes about ten minutes. They just ask a few questions about your medical history and swab your mouth with a q-tip. Just because you are on the registry does not mean that you will have to go through the process of donating bone marrow. It just increases the chance that someone will find a match. If someone on the registry is found to be a match, they are asked if they are willing to donate. So even if you are a match, you will have the choice in the future to donate or not. In the chance that you will change your mind . . . just take this one small step. Please.
AS FOR PAYING TO GET ON THE REGISTRY: if you walk into one of the bone marrow registry centers OR attend a bone marrow drive, registration should be free. But if you go through the website (http://www.bonemarrow.org) and register, they will have to send you a kit..and you will have to pay around $55.
I will keep everyone posted about Houston drives I set up. And if sepia could post that information when it comes available, I would truly appreciate it.
Thanks.
not true. i didn’t pay anything, because the sponsor paid for all of us (small lab in a univ). otherwise it varies from $50 to $100.
NO NO i didn’t mean you are obligated. But typically, the family which gets the match is unlikely to get another. So you will really hurt them more if you refuse. Some donation centers are more careful than others—they do not let any contact between the donor and the patient for a long time even after the donation. But many do not follow this in reality. I have had a friend who was informed of a match, which the would be donor did not go through.
There is a new option where they put you on drugs to increase some cell count, and take blood (?) out of you. Not to say it is painless—there is significant pain involved, but it does not involve surgery.
My brother’s planning a drive in the New York area. Will let ya’ll know once he figures out a time and place.
Time lost in work (could go on to month+) is not compensated.
Please read this:
Factors to Consider Before Joining
True, but that is still an infinitesimally insignificant cost when compared to the benefit of knowing you may have saved someone’s life. I’ll be at the SJ drive on the 2nd- I hope to see some of you guys there.
I hope everything will work out well for the young man and that he gets back to excellent health with his wife.
Many thanks to Sepia Mutiny for bringing attention to this very important issue. I needed this reminder to get tested to see if I am a match for him or anyone else in need of a bone marrow donation!
Personally I agree with you—though the cost I mentioned is not the $100 here, but the cost of not being able to work, or not being able to resume normal activities for sometime after the donation.
The thing is, not everyone is aware of all this, and they cause tremendous heartbreak by signing up as if it is a blood donation drive. I would rather have informed people on the registry than people who sign up due to pressure.
@25, Amar
It is not risky to any significant extent. Please don’t think that is a factor. It involves pain, true, but nothing that is persistent. And I repeat, it is NOT risky for the donor. Despite this, you are automatically insured for any complications that may arise. Therefore the risk factor should not govern your decision.
And just to clarify: I am all for people registering, in fact I volunteered in arranging a marrow drive in my campus. I am a registered donor myself for the last few years now.
I have also seen the other side: people who have signed up but chicken out. This is not a small thing—it causes several problems (i) firstly, the families—if they are informed of the match before you chicken out—are devastated (ii) more importantly, you may cause a lot of wasted time (if the search stops, as I think it does if there is a match) which in turn may have cost the life of the patient.
Therefore, I say—and a doctor involved, if any, in the marrow drive will also tell you—please think of it as a commitment to donate if you are a match. Don’t refuse later, to the fullest extent possible. Act promptly if you are a match—don’t waste time considering the pros and cons then. Keep your contact info updated, think of all this as a responsibility.
Thanks for the clarification, bytewords. I also assumed that the process was similar to blood donation. Here‘s a helpful basic marrow donation overview, with a link to a more advanced explanation of the procedure.
@39:
But please seriously consider registering yourself. It is some amount of demand on you, but you will save a life. It is still worth it all—no, in fact, it is more than worth it all. There is no long term risk you need to be very concerned about on your behalf, but you will give someone a longer life.
Just familiarize yourself with the procedure and today, you may be able to donate without surgery. Keep your info updated.
…few months now. I registered last year.
Upcoming donor drives in different states are listed here http://www.marrow.org/ABOUT/NMDP_Network/Donor_Centers/US_Donor_Centers/dc_list_by_state.pl
I donated blood to the Red Cross here in Adelaide, Australia on 20-04-07 so I should be on the bone marrow donors list. If I’m not, I’ll, join myself up. The Red Cross here (don’t know abt other countries), is connected to the Australian Bone Marrow Donor registry, which i believe (from looking at their website) searches through the world wide database.
Hopefully, someone will be lucky enough to have the privilege of saving a life.
voiceinthehead — great idea. I know most of us have at some point gone to those American Association conventions, what would it be like if we got in touch with those groups and encouraged them to include a bone marrow drive booth among the many booths they have at these things?
My father is involved with the American Telugu Association, so I emailed him this post and asked him to help me get the ball rolling on that. Maybe we can all start something like that with the groups of our respective languages?
Anna–thanks for posting. Was just about to email you & ask [same]. I keep trying to express in words to people how small yet ever-so-monumental it is for people (esp. SM readers!!) to get registered.
I live in Baltimore and would love to organize a D.C.-Metro area drive. I haven’t lived here very long though, so I need help/contacts/ideas/people-power. If anyone can offer even 20 min of talk-time, we can pull this together. We can find a match.
Folks are always asking what they can do to “make a difference” in this world. A suggestion: save a life.
Please email me – indiaseema@hotmail.com
Has anybody here donated marrow or known somebody who does? Can you describe what it exactly is like? I’ve seen the link on extraction from pelvic bone etc. but wanted to see if there’s a first-hand/second-hand opinion out here.
Seema, I’m interested in helping however I can. I wonder what location we could choose in this area, to get the largest number of volunteers. Perhaps outer red-line/MoCo suburbs? While a bunch of us live in the city, every meetup, more and more people drive in from that part of Maryland (or beyond, like Columbia). Let’s figure this out. 🙂
Is it safe for a pregnant woman to donate? Should a pregnant woman or woman who is trying to conceive not register until after birth?
Actually, isn’t there a need for cord blood wrt this? If so, that’s an important bit of information to put out there, for pregnant women. Is there a doctor in the house with more details?
Seshu, Roopa
Last year I got a similar email request for joining a registry on behalf of a desi kid diagnosed with AML. The email also requested cord blood (from the placenta). By a great coincidence a desi friend was pregnant and about to deliver in less than a couple of weeks. I forwarded the email to her and she got in touch with the family and sent off the cord blood after she delivered. We are not sure it has worked at this point as we haven’t heard back.
Is that something that would work for your cousin or is that the last resort when they cannot find a matching donor? I’m not sure at all on the details of this.
I have been registered for years and feel so much saddness when I see these stories.
sp