11 ms·

Amit Gupta hasn't found a marrow transplant match; today's your last chance.

652 points by ryanwhitney 15y ago

ryanwhitney 15y ago
Brought back to my attention by today's GOOD article "Bone Dry: Amit Gupta and the South Asian Bone Marrow Problem" http://www.good.is/post/amit-gupta-and-the-south-asian-bone-marrow-deficit/ http://www.good.is/post/amit-gupta-and-the-south-asian-bone-...
rorrr 15y ago
Why doesn't he simply offer money? If I needed to survive, I'd offer something like all my savings, plus 50% of my net salary for 10 years.
- qq66 15y ago
  This would most likely reduce the number of people who would screen themselves. I wouldn't undergo a possibly horrible medical procedure for $100,000, but I might do it to save someone's life and feel like a good person. For further reading, look into social norms vs. market norms, especially the example of the Israeli day care: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 (paywall)
  - Tichy 15y ago
    Would it be possible for someone interested in the money to get tested and ask for money in case of a match? Although I suppose the moral pressure would be quite high if you are already tested.
    - qq66 15y ago
      I suppose it's possible to ask for every penny someone has if you're a match, since they'll obviously pay you their last dime. It's an asshole move to go after someone at their most vulnerable, though, and if it became public would likely get you justifiably ostracized from any decent community. It's also currently illegal in the US. Of course, asking your medical costs, recuperating costs, etc. to be covered is totally reasonable.
      - Tichy 15y ago
        Not asking for myself, I was just wondering in response to the comment about offering money. So people who would only do it for money could opt in.
  - deleted 15y ago
    [deleted]
  - FaceKicker 15y ago
    I'd be surprised if that were true; you could always refuse the money and feel like an even better person (or at least just as good). And then it would attract the people who do want/need the money on top of that.
    - qq66 15y ago
      That argument makes sense only in a fully logical environment. The whole body of research into market norms and social norms shows that people are not fully logical in such contexts.
  - ark15 15y ago
    This can easily be solved by radio options on sign up form. Choose one from: a)I am interested in $100,000 if I match. b) Not in it for money but please donate $100,000 on my behalf to a charity <optional Textfield> c)I am not in this for money. If I match, I am optimistic about your recovery so please keep the $100,000 to enjoy post recovery.
  - deleted 15y ago
    [deleted]
- tghw 15y ago
  I believe $30,000 has been offered by various people, starting with Seth Godin offering $10,000 and a spotlight on his blog to anyone who's a match and goes through with the procedure.
- jules 15y ago
  Because that is illegal. In the US, there is the National Organ Transplant Act which forbids paying for organs. In this law, bone marrow is considered an organ. > It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. > [...] > The term ''human organ'' means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation. -- http://www.livingdonorassistance.org/documents/NOTA.pdf http://www.livingdonorassistance.org/documents/NOTA.pdf
  - jambo 15y ago
    Seth Godin and others pledged money as an incentive for a donor, but revised the offer after learning that the original offer was likely illegal. "He now promises the money to the first person who matches Gupta, regardless of whether that person goes through with the transplant: no quid pro quo." In a separate case, there is an ongoing lawsuit attempting to overturn the ban on offering payment for marrow donation. http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bounty-takes-on-paid-donor-ban-virginia-postrel.html http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bou...
  - cop359 15y ago
    Better be in jail but alive (with free health care btw.) then dead. You could do the procedure overseas.
    - pessimizer 15y ago
      The contract wouldn't be enforceable.
      - AndyKelley 15y ago
        You could hire a trusted middle man.
    - 15y ago
- jgeralnik 15y ago
  As far as I know, it is illegal to sell bone marrow. This source, from February, says that the law is being appealed but I don't know if a verdict has been given: http://articles.latimes.com/2011/feb/20/local/la-me-bone-marrow-suit-20110221 http://articles.latimes.com/2011/feb/20/local/la-me-bone-mar...
- ryanwhitney 15y ago
  The GOOD article, which I linked to below, mentions a $30,000 prize.
- daenz 15y ago
  Organized crime just squealed with happiness. Abduct someone -> sedate and extract bone marrow -> PROFIT
  - ataggart 15y ago
    But Amit could pay some criminal organization for that service right now; the abduction itself is illegal either way. Allowing for cash incentives would serve to reduce the quantity of unfulfilled demand from which black markets -- and the criminal organizations which supply them -- emerge. At the very least, such incentives would mean far more people listed in donor registries, the dearth of which is the very problem Amit is running into. http://reason.com/archives/2011/11/11/the-case-for-legal-organ-sales http://reason.com/archives/2011/11/11/the-case-for-legal-org...
    - daenz 15y ago
      > But Amit could pay some criminal organization for that service right now If he could, why hasn't he then? In the link you pasted, why did so many people die awaiting transplants if was able to be obtained illegally right now? Surely they didn't want to die. I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Just my 2 cents.
      - ataggart 15y ago
        >If he could, why hasn't he then? I would suspect that he has some moral compunction against kidnapping people and killing them for their body parts. Regardless, you now seem to be implying the opposite claim from earlier. Is it that no longer prohibiting voluntary sales of organs (e.g., bone marrow) would result in an increase in such abductions/killings, or is it that such killings don't seem to happen despite the prohibition? >I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?
jcr 15y ago
A good friend of mine, Eric Drew, survived two failed fully oblative bone marrow transplants (partial match) and was out of options, so he "qualified" for an experimental "Cord Blood Transplant" which cured his Acute Lyphoblastic Leukimia. I believe it was done through the University of Wisconsin, but I'm uncertain if the procedure has gotten out of research trials. If Amit runs out of options, he should look into it. EDIT: I do know the fancy medical terms, but I don't pretend to really understand what they mean. You need a real serious medical education to understand this stuff.
- earl 15y ago
  I think the term is an ablative and/or autologous bone marrow transplant. My father had this performed to treat type ii non hodgkins lymphoma. Essentially, if there is no donor, you can draw a patient's own bone marrow, attempt to treat it so that it has no cancerous cells, culture the hopefully cleansed bone marrow, kill all the patient's bone marrow in their body via high doses of chemo and/or radiation, then reimplant the patient's own cultured and hopefully safe bone marrow. While the patient has no bone marrow they will be completely dependent on donor blood. What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her.
  - lmkg 15y ago
    > What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her. That's a description of most cancer treatments, especially the traditional ones. Cancer cells are so similar to normal healthy tissue, they're difficult to target with high specificity. Most treatments (especially chemo and radiation) work by killing cancer cells marginally better than they kill (most) normal cells. The targeting is getting better for both classes of treatment, but the collateral damage is still significant. Killing all bone marrow cells indiscriminately sidesteps the targeting issue, with the trade-off that you effectively remove an entire vital organ. This is just as drastic, but in this particular case happens to be a surmountable obstacle.
- there 15y ago
freemarketteddy 15y ago
I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male? Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit. > SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ? Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory > First Contact Information ? Spouse Information ? Second Contact Information Grrr....what the fuck! > Race Information? Not Hispanic or Latino ? Black ? Asian ? Wtf...take my DNA and figure it out! After a cpl other irritating forms I am finally able to get a kit sent to my address. -My advice to Amit's friends would be to please do something to improve the signup workflow. -Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!
- Tobu 15y ago
  I'll plug pwdhash — https://pwdhash.com/ https://pwdhash.com/ — which will turn a password of six characters or more into a site-specific password that passes these requirements.
- jeremymims 15y ago
  - Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you. - You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information. - It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.
  - mekoka 15y ago
SandB0x 15y ago
Can someone explain what the November 30 date means? Is there another treatment route they will try if they can't find a donor? How is the cut-off date chosen?
- juiceandjuice 15y ago
  I think it has something to do with the data not showing up in the registry for 30 days and maybe the new year coming.
  - ken 15y ago
    Shortly after I submitted my sample, I got an email that said: "When the processing of your kit is complete, you will officially be listed on the Be The Match Registry. This process usually takes about two months, but the time can vary depending on the number of new members joining the registry each month." so there is definitely some lag time involved.
palish 15y ago
I'm American, but I'd happily do one of these kits and also go through with the operation if it would save Amit's life... ...but I see no way to actually do that. Does anyone else? Where are the kits?
- robertdimarco 15y ago
  Get started with the quick questionnaire at http://marrow.org/Join/Join_Now/Join_Now.aspx http://marrow.org/Join/Join_Now/Join_Now.aspx and they'll mail the kit to you within a few weeks.
  - baddox 15y ago
    Seems a little late for that, unfortunately.
    - jey 15y ago
      There's still a lot of other people who need a matching donor.
    - morrow 15y ago
      http://marrow.org/Join/Join_in_Person/Recruitment_Centers.aspx http://marrow.org/Join/Join_in_Person/Recruitment_Centers.as...
Irfaan 15y ago
I really do wish this reminder had came sooner; I have the swab kit sitting on my desk, waiting for a free moment for me to swab and send. While I'm obviously still going to send it in, I was really hoping to help Amit. :(
- sax 15y ago
  It takes not more than 120 seconds to swab, stick the provided bar-codes on the 4 buds and stick the buds back into the provided casing. You then slip the case into the postage paid envelope and leave it on your outgoing mail for USPS to pick it up tomorrow. I did this a couple of weeks ago. Just do it and be done with.
febeling 15y ago
The risk to the donor is quite low. It requires general anestesia, and so a night in the hospital. But serious complications have a probability of 1:20000 (wikipedia German). The english article gives some more differentiated figures. The spine is not invaded, the "marrow" means technically stem cells extracted from blood, in most cases. http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to_donor http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to... I'm not a doctor.
kevinelliott 15y ago
I feel absolutely helpless. I hate this situation. I don't know anyone who qualifies, and I certainly don't. The idea that Amit may not find a donor furiously irritates me. What's worse, none of my Facebook and Twitter followers have relayed the message further the several times I've posted about it. Then there's the swab kit sign up form. Oh my, what a pain. And then the guilt sets in where I begin to think 'Why am I ignoring the thousands of other people that likely need bone marrow too?' I can't be alone in this thinking. But what can I do next? I certainly can't sit idle and watch this guy die.
- qq66 15y ago
  You're not ignoring those people. By signing up for the registry you can be matched against anyone who needs it. Whether Amit finds a donor or not (fingers crossed) his drive to get people tested will help other South Asian leukemia patients.
  - kevinelliott 15y ago
    I am ignoring those people. Amit's high profile presence has made me think about the problem more, but I have not gone out of my way to see if any other people might be in need. Sure, my registration in the database will help to match me against other people in need, but it doesn't inform me of people who are in need that I don't match. See, that's what I mean. I feel guilty that I can't tell others about the thousands of people who are also in need. And really, even if I knew who all these other people were, my friends and family would get terribly annoyed that I would be telling them all about hundreds or thousands of other people in need. See the problem? We care about Amit because he's high profile (and I'm glad we are trying!), but we do very little for the more 'anonymous' types. That's where my guilt comes in.
    - k3dz 15y ago
      thinking along these lines, around 6 million children under five die in developing countries each year from malnutrition and hunger-related diseases. [1] http://www.wfp.org/hunger/stats http://www.wfp.org/hunger/stats
blhack 15y ago
Also if you're already in the registry, make sure that you're contact information is up to date.
sk_0919 15y ago
I just applied, You should too.
suivix 15y ago
Let him eat cake.
sax 15y ago
Here is a thought: Is there a correlation between bone marrow match and genetic closeness? If there is, it would be a good idea to specifically target people who are from the same community as Amit back in India as well as in the US. In Indian society, marriage is often within tightly knit communities. What if we track-down people who share second names with Amit's Father and Mother (maiden second name). Would then, the probably of finding a match in such people increase? Thoughts?
- madao 15y ago
  Gupta is the English equivalent of Smith in India..
  - sax 15y ago
    I am from the sub-continent. What you said is actually a good thing. There are lots of Guptas (and Vermas and Sharmas and other north-indian surnames). In India Guptas marry other Guptas (or Sharmas or Vermas or other surnames, BUT there is marriage within the community). This is not true for Smiths in any part of the world.
    - michael_dorfman 15y ago
      This is not true for Smiths in any part of the world. Sure it is. See, for example, Eleanor Roosevelt.
jason_slack 15y ago
At the sake of sounding incredibly naive...Is it only South Asians that can help Amit? Being white, I would not have a potential match at all?
- acangiano 15y ago
  > Being white, I would not have a potential match at all? You would be unlikely to, but it's not impossible. The human leukocyte antigen (HLA) tissue type Amit needs is just much, much more predominant among fellow South Asians. You probably can't help Amit directly, but you can help someone else in a similar situation.
cullenking 15y ago
I finally sent my kit in today, took about five minutes, plus another five to walk it to the post office. It sat on my desk for two weeks :(
troubleshooter 15y ago
I am a bit curious. How exactly is the procedure of marrow transplant carried out?
- watmough 15y ago
  It's moderately ugly. General anaesthesia and a needle into a big bone. Lots of detail here: http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Sources_and_storage_of_cells http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transpl...
nostromo 15y ago
Since I'm still gay, I'm not allowed to help, no matter how many times you ask. I get why they do this and I shouldn't let it bother me, but emotionally it feels the same as if they just said, "Please become a donor, nohomo." edit: Of course I still wish the very best for Amit.
- darrellsilver 15y ago
  This is a huge problems -- been to a couple NYC amit events (thanks, New Work City!) -- and did my best to inform people. Same with donating blood.
- corin_ 15y ago
  Some progress has been made, in the UK now the (blood) ban only effects men who've had sex with men in the past 12 months, which is better.
  - artursapek 15y ago
    How do they enforce this?
    - corin_ 15y ago
      They don't/can't.
    - caryme 15y ago
      At least in the blood ban in the US, the only enforcement is the honesty policy. The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank. I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.
      - corin_ 15y ago
        I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?) Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy to prevent them from helping others. Here's the problem with just saying "are you clean?" You could be in a long-term committed monogamous man-man relationship, and therefore believe you are completely safe. However, the fact that you trust your partner not to cheat on you does not mean that health authorities can trust him not to have cheated on you. So even if the person being asked is completely telling the truth, they might be wrong.
mooli7dm 15y ago
I may be a bit late, but I registered nonetheless.
eric-hu 15y ago
I went through the signup process a month or two ago, but got flat-rejected at the last step (after about half an hour of reading fine print). The issue: I had temporary hair loss in high school, due to an autoimmune disease according to a dermatologist. I was never tested for it, and figured I could still get tested, but the signup process just stopped me. I'm in the LA area and willing to drive somewhere to get tested for a match tonight if someone can shed more light on if/how I can do it.
- ryanwhitney 15y ago
  http://marrow.org/Join/Join_in_Person/Donor_Centers.aspx#CA http://marrow.org/Join/Join_in_Person/Donor_Centers.aspx#CA first one maybe?
- morrow 15y ago
  Here's a start: http://marrow.org/Join/Join_in_Person/Recruitment_Centers.aspx#CA http://marrow.org/Join/Join_in_Person/Recruitment_Centers.as... http://www.a3mhope.org/ http://www.a3mhope.org/ http://www.a3mhope.org/index.php/donor/list-of-drives http://www.a3mhope.org/index.php/donor/list-of-drives
sontek 15y ago
I'm not a gay male but refuse to be part of organizations who discriminate against them. I know they are trying to save lives but eliminating potential matches and discrimination is not the way to do that.
- burke 15y ago
  It's unfortunately not the organizations' fault. In general, they'd be thrilled to take anyone's blood after they screen it. The rule is specifically legislated.
- corin_ 15y ago
  Gay male here, and while I can't speak for everyone, I think I speak for the majority of gay males when I say: please don't do this. Our biggest concern with these policies is not that we get left out, but that others who might need our help are unable to get it. Your boycott only serves to worsen the situation, sadly. For vocal support, thankyou, please do continue expressing your opinion (though bare in mind that this kind of discrimination is at least based in logic, allbeit sometimes incorrect logic, and in protecting people, not discrimination for the sake of itself).
da_dude4242 15y ago
I'm Russian who probably has some asian DNA(ural region/mongolian?). Can someone explain to me the likelyhood of being a compatible match?
- spwmoni 15y ago
  With Amit? Low. But with somebody who needs marrow, high enough that it's worth getting the kit anyway.
uptown 15y ago
How difficult is it to find matches for patients? Anybody know what the odds are for the average patient in need? I ask because I registered a couple years ago but haven't ever heard anything since.
- andys627 15y ago
  My mom is about to do stem cell transplant - her siblings are something like 1 in 20, and my brother and I are something like 1 in 100.
- rahim 15y ago
  I've heard a few numbers thrown around, 1 in 20,000 comes up often, but I haven't found any reputable sources to back that up. According to the National Marrow Donor Program: "On average, one in every 540 members of Be The Match Registry in the United States will go on to donate marrow to a patient." http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#likely http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... I can say from personal experience that I've been a registered donor for 8 years, and only just yesterday did I receive an e-mail saying that I may be a possible match for a patient. The process going forward is fairly long with tests along the way to be certain (http://marrow.org/Registry_Members/Donation/Steps_of_Donation.aspx#step1 http://marrow.org/Registry_Members/Donation/Steps_of_Donatio...). I was told it could be up to 2 months before doctors decide if I move on to the next stage of donation. If the doctors decide I'm the best match, it could be another 6 months before the actual donation.
frankiejr 15y ago
In 2005, my friend Rich went to the hospital because of headaches that had been lasting for months. He was diagnosed with acute myelogenous leukemia, went through treatment, and went into remission in January of 2006. Later that year he went on to start a foundation to raise awareness about the disease and make it his mission to educate people about the urgent need for donating blood, and even more so, bone marrow. I joined the bone marrow database and encourage everyone I know to do the same. The donor card comes with me everywhere I go. Whenever I hear about someone like Mr. Gupta, I try and think of every person possible that might not know one of two very important things: 1. Becoming a donor is not as painful as you grew up beleiving it was. 2. A single day of your discomfort could give someone the rest of their life. Over the course of the next several years, Rich pretty much kept his immediate condition to himself except with his family and few very close friends. This did prove difficult for him since he was someone who was "notable" (a term those of us on HN would understand), but upon publication he would always see the silver lining since it helped promote his foundation. On September eighth, 2010, Rich was only 36 years old when he passed away after suffering a stroke secondary to leukemia. Please, do what you can. Every day, do what you can. http://marrow.org/ http://marrow.org/
sgoel 15y ago
I just registered at one of the last minute donor drives in San Francisco. The form is rather daunting, as they request your Social Security Number and your Driver's License number. Either way, I am glad to help! - a south asian
jarin 15y ago
I sent in my kit about a week ago and I'm half Thai, so here's hoping!
mcteapot 15y ago
wish I knew about this before. why was this posted on the last day...
- njloof 15y ago
  So now what happens?
jamesrcole 15y ago
FWIW, it might help if the site mentioned what 'South Asians' means. Not everyone is necessarily familiar with that term. I've never heard it used here in Australia. We don't have a term for that area. I had to look it up (http://en.wikipedia.org/wiki/South_Asia http://en.wikipedia.org/wiki/South_Asia). (I've emailed them this feedback).
medius 15y ago
I am an Indian living in the US and I registered for the marrow donor program after my wife forwarded information about Amit . I sent the swabs more than a week ago. Not sure how it works, but hopefully there will be a match. They said it will take two weeks for me to get the kit, but it was surprisingly fast.

652 points by ryanwhitney 15y ago

Brought back to my attention by today's GOOD article "Bone Dry: Amit Gupta and the South Asian Bone Marrow Problem" http://www.good.is/post/amit-gupta-and-the-south-asian-bone-marrow-deficit/ http://www.good.is/post/amit-gupta-and-the-south-asian-bone-...

rorrr 15y ago

Why doesn't he simply offer money? If I needed to survive, I'd offer something like all my savings, plus 50% of my net salary for 10 years.

qq66 15y ago
This would most likely reduce the number of people who would screen themselves. I wouldn't undergo a possibly horrible medical procedure for $100,000, but I might do it to save someone's life and feel like a good person. For further reading, look into social norms vs. market norms, especially the example of the Israeli day care: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 (paywall)
- Tichy 15y ago
  Would it be possible for someone interested in the money to get tested and ask for money in case of a match? Although I suppose the moral pressure would be quite high if you are already tested.
  - qq66 15y ago
    I suppose it's possible to ask for every penny someone has if you're a match, since they'll obviously pay you their last dime. It's an asshole move to go after someone at their most vulnerable, though, and if it became public would likely get you justifiably ostracized from any decent community. It's also currently illegal in the US. Of course, asking your medical costs, recuperating costs, etc. to be covered is totally reasonable.
    - Tichy 15y ago
      Not asking for myself, I was just wondering in response to the comment about offering money. So people who would only do it for money could opt in.
- deleted 15y ago
  [deleted]
- FaceKicker 15y ago
  I'd be surprised if that were true; you could always refuse the money and feel like an even better person (or at least just as good). And then it would attract the people who do want/need the money on top of that.
  - qq66 15y ago
    That argument makes sense only in a fully logical environment. The whole body of research into market norms and social norms shows that people are not fully logical in such contexts.
- ark15 15y ago
  This can easily be solved by radio options on sign up form. Choose one from: a)I am interested in $100,000 if I match. b) Not in it for money but please donate $100,000 on my behalf to a charity <optional Textfield> c)I am not in this for money. If I match, I am optimistic about your recovery so please keep the $100,000 to enjoy post recovery.
- deleted 15y ago
  [deleted]
tghw 15y ago
I believe $30,000 has been offered by various people, starting with Seth Godin offering $10,000 and a spotlight on his blog to anyone who's a match and goes through with the procedure.
jules 15y ago
Because that is illegal. In the US, there is the National Organ Transplant Act which forbids paying for organs. In this law, bone marrow is considered an organ. > It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. > [...] > The term ''human organ'' means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation. -- http://www.livingdonorassistance.org/documents/NOTA.pdf http://www.livingdonorassistance.org/documents/NOTA.pdf
- jambo 15y ago
  Seth Godin and others pledged money as an incentive for a donor, but revised the offer after learning that the original offer was likely illegal. "He now promises the money to the first person who matches Gupta, regardless of whether that person goes through with the transplant: no quid pro quo." In a separate case, there is an ongoing lawsuit attempting to overturn the ban on offering payment for marrow donation. http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bounty-takes-on-paid-donor-ban-virginia-postrel.html http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bou...
- cop359 15y ago
  Better be in jail but alive (with free health care btw.) then dead. You could do the procedure overseas.
  - pessimizer 15y ago
    The contract wouldn't be enforceable.
    - AndyKelley 15y ago
      You could hire a trusted middle man.
  - 15y ago
jgeralnik 15y ago
As far as I know, it is illegal to sell bone marrow. This source, from February, says that the law is being appealed but I don't know if a verdict has been given: http://articles.latimes.com/2011/feb/20/local/la-me-bone-marrow-suit-20110221 http://articles.latimes.com/2011/feb/20/local/la-me-bone-mar...
ryanwhitney 15y ago
The GOOD article, which I linked to below, mentions a $30,000 prize.
daenz 15y ago
Organized crime just squealed with happiness. Abduct someone -> sedate and extract bone marrow -> PROFIT
- ataggart 15y ago
  But Amit could pay some criminal organization for that service right now; the abduction itself is illegal either way. Allowing for cash incentives would serve to reduce the quantity of unfulfilled demand from which black markets -- and the criminal organizations which supply them -- emerge. At the very least, such incentives would mean far more people listed in donor registries, the dearth of which is the very problem Amit is running into. http://reason.com/archives/2011/11/11/the-case-for-legal-organ-sales http://reason.com/archives/2011/11/11/the-case-for-legal-org...
  - daenz 15y ago
    > But Amit could pay some criminal organization for that service right now If he could, why hasn't he then? In the link you pasted, why did so many people die awaiting transplants if was able to be obtained illegally right now? Surely they didn't want to die. I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Just my 2 cents.
    - ataggart 15y ago
      >If he could, why hasn't he then? I would suspect that he has some moral compunction against kidnapping people and killing them for their body parts. Regardless, you now seem to be implying the opposite claim from earlier. Is it that no longer prohibiting voluntary sales of organs (e.g., bone marrow) would result in an increase in such abductions/killings, or is it that such killings don't seem to happen despite the prohibition? >I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?

jcr 15y ago

A good friend of mine, Eric Drew, survived two failed fully oblative bone marrow transplants (partial match) and was out of options, so he "qualified" for an experimental "Cord Blood Transplant" which cured his Acute Lyphoblastic Leukimia. I believe it was done through the University of Wisconsin, but I'm uncertain if the procedure has gotten out of research trials. If Amit runs out of options, he should look into it. EDIT: I do know the fancy medical terms, but I don't pretend to really understand what they mean. You need a real serious medical education to understand this stuff.

earl 15y ago
I think the term is an ablative and/or autologous bone marrow transplant. My father had this performed to treat type ii non hodgkins lymphoma. Essentially, if there is no donor, you can draw a patient's own bone marrow, attempt to treat it so that it has no cancerous cells, culture the hopefully cleansed bone marrow, kill all the patient's bone marrow in their body via high doses of chemo and/or radiation, then reimplant the patient's own cultured and hopefully safe bone marrow. While the patient has no bone marrow they will be completely dependent on donor blood. What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her.
- lmkg 15y ago
  > What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her. That's a description of most cancer treatments, especially the traditional ones. Cancer cells are so similar to normal healthy tissue, they're difficult to target with high specificity. Most treatments (especially chemo and radiation) work by killing cancer cells marginally better than they kill (most) normal cells. The targeting is getting better for both classes of treatment, but the collateral damage is still significant. Killing all bone marrow cells indiscriminately sidesteps the targeting issue, with the trade-off that you effectively remove an entire vital organ. This is just as drastic, but in this particular case happens to be a surmountable obstacle.
there 15y ago

freemarketteddy 15y ago

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male? Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit. > SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ? Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory > First Contact Information ? Spouse Information ? Second Contact Information Grrr....what the fuck! > Race Information? Not Hispanic or Latino ? Black ? Asian ? Wtf...take my DNA and figure it out! After a cpl other irritating forms I am finally able to get a kit sent to my address. -My advice to Amit's friends would be to please do something to improve the signup workflow. -Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!

Tobu 15y ago
I'll plug pwdhash — https://pwdhash.com/ https://pwdhash.com/ — which will turn a password of six characters or more into a site-specific password that passes these requirements.
jeremymims 15y ago
- Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you. - You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information. - It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.
- mekoka 15y ago

SandB0x 15y ago

Can someone explain what the November 30 date means? Is there another treatment route they will try if they can't find a donor? How is the cut-off date chosen?

juiceandjuice 15y ago
I think it has something to do with the data not showing up in the registry for 30 days and maybe the new year coming.
- ken 15y ago
  Shortly after I submitted my sample, I got an email that said: "When the processing of your kit is complete, you will officially be listed on the Be The Match Registry. This process usually takes about two months, but the time can vary depending on the number of new members joining the registry each month." so there is definitely some lag time involved.

palish 15y ago

I'm American, but I'd happily do one of these kits and also go through with the operation if it would save Amit's life... ...but I see no way to actually do that. Does anyone else? Where are the kits?

robertdimarco 15y ago
Get started with the quick questionnaire at http://marrow.org/Join/Join_Now/Join_Now.aspx http://marrow.org/Join/Join_Now/Join_Now.aspx and they'll mail the kit to you within a few weeks.
- baddox 15y ago
  Seems a little late for that, unfortunately.
  - jey 15y ago
    There's still a lot of other people who need a matching donor.
  - morrow 15y ago
    http://marrow.org/Join/Join_in_Person/Recruitment_Centers.aspx http://marrow.org/Join/Join_in_Person/Recruitment_Centers.as...

Irfaan 15y ago

I really do wish this reminder had came sooner; I have the swab kit sitting on my desk, waiting for a free moment for me to swab and send. While I'm obviously still going to send it in, I was really hoping to help Amit. :(

sax 15y ago
It takes not more than 120 seconds to swab, stick the provided bar-codes on the 4 buds and stick the buds back into the provided casing. You then slip the case into the postage paid envelope and leave it on your outgoing mail for USPS to pick it up tomorrow. I did this a couple of weeks ago. Just do it and be done with.

febeling 15y ago

The risk to the donor is quite low. It requires general anestesia, and so a night in the hospital. But serious complications have a probability of 1:20000 (wikipedia German). The english article gives some more differentiated figures. The spine is not invaded, the "marrow" means technically stem cells extracted from blood, in most cases. http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to_donor http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to... I'm not a doctor.

kevinelliott 15y ago

I feel absolutely helpless. I hate this situation. I don't know anyone who qualifies, and I certainly don't. The idea that Amit may not find a donor furiously irritates me. What's worse, none of my Facebook and Twitter followers have relayed the message further the several times I've posted about it. Then there's the swab kit sign up form. Oh my, what a pain. And then the guilt sets in where I begin to think 'Why am I ignoring the thousands of other people that likely need bone marrow too?' I can't be alone in this thinking. But what can I do next? I certainly can't sit idle and watch this guy die.

qq66 15y ago
You're not ignoring those people. By signing up for the registry you can be matched against anyone who needs it. Whether Amit finds a donor or not (fingers crossed) his drive to get people tested will help other South Asian leukemia patients.
- kevinelliott 15y ago
  I am ignoring those people. Amit's high profile presence has made me think about the problem more, but I have not gone out of my way to see if any other people might be in need. Sure, my registration in the database will help to match me against other people in need, but it doesn't inform me of people who are in need that I don't match. See, that's what I mean. I feel guilty that I can't tell others about the thousands of people who are also in need. And really, even if I knew who all these other people were, my friends and family would get terribly annoyed that I would be telling them all about hundreds or thousands of other people in need. See the problem? We care about Amit because he's high profile (and I'm glad we are trying!), but we do very little for the more 'anonymous' types. That's where my guilt comes in.
  - k3dz 15y ago
    thinking along these lines, around 6 million children under five die in developing countries each year from malnutrition and hunger-related diseases. [1] http://www.wfp.org/hunger/stats http://www.wfp.org/hunger/stats

blhack 15y ago

Also if you're already in the registry, make sure that you're contact information is up to date.

sk_0919 15y ago

I just applied, You should too.

suivix 15y ago

Let him eat cake.

sax 15y ago

Here is a thought: Is there a correlation between bone marrow match and genetic closeness? If there is, it would be a good idea to specifically target people who are from the same community as Amit back in India as well as in the US. In Indian society, marriage is often within tightly knit communities. What if we track-down people who share second names with Amit's Father and Mother (maiden second name). Would then, the probably of finding a match in such people increase? Thoughts?

madao 15y ago
Gupta is the English equivalent of Smith in India..
- sax 15y ago
  I am from the sub-continent. What you said is actually a good thing. There are lots of Guptas (and Vermas and Sharmas and other north-indian surnames). In India Guptas marry other Guptas (or Sharmas or Vermas or other surnames, BUT there is marriage within the community). This is not true for Smiths in any part of the world.
  - michael_dorfman 15y ago
    This is not true for Smiths in any part of the world. Sure it is. See, for example, Eleanor Roosevelt.

jason_slack 15y ago

At the sake of sounding incredibly naive...Is it only South Asians that can help Amit? Being white, I would not have a potential match at all?

acangiano 15y ago
> Being white, I would not have a potential match at all? You would be unlikely to, but it's not impossible. The human leukocyte antigen (HLA) tissue type Amit needs is just much, much more predominant among fellow South Asians. You probably can't help Amit directly, but you can help someone else in a similar situation.

cullenking 15y ago

I finally sent my kit in today, took about five minutes, plus another five to walk it to the post office. It sat on my desk for two weeks :(

troubleshooter 15y ago

I am a bit curious. How exactly is the procedure of marrow transplant carried out?

watmough 15y ago
It's moderately ugly. General anaesthesia and a needle into a big bone. Lots of detail here: http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Sources_and_storage_of_cells http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transpl...

nostromo 15y ago

Since I'm still gay, I'm not allowed to help, no matter how many times you ask. I get why they do this and I shouldn't let it bother me, but emotionally it feels the same as if they just said, "Please become a donor, nohomo." edit: Of course I still wish the very best for Amit.

darrellsilver 15y ago
This is a huge problems -- been to a couple NYC amit events (thanks, New Work City!) -- and did my best to inform people. Same with donating blood.
corin_ 15y ago
Some progress has been made, in the UK now the (blood) ban only effects men who've had sex with men in the past 12 months, which is better.
- artursapek 15y ago
  How do they enforce this?
  - corin_ 15y ago
    They don't/can't.
  - caryme 15y ago
    At least in the blood ban in the US, the only enforcement is the honesty policy. The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank. I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.
    - corin_ 15y ago
      I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?) Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy to prevent them from helping others. Here's the problem with just saying "are you clean?" You could be in a long-term committed monogamous man-man relationship, and therefore believe you are completely safe. However, the fact that you trust your partner not to cheat on you does not mean that health authorities can trust him not to have cheated on you. So even if the person being asked is completely telling the truth, they might be wrong.

mooli7dm 15y ago

I may be a bit late, but I registered nonetheless.

eric-hu 15y ago

I went through the signup process a month or two ago, but got flat-rejected at the last step (after about half an hour of reading fine print). The issue: I had temporary hair loss in high school, due to an autoimmune disease according to a dermatologist. I was never tested for it, and figured I could still get tested, but the signup process just stopped me. I'm in the LA area and willing to drive somewhere to get tested for a match tonight if someone can shed more light on if/how I can do it.

ryanwhitney 15y ago
http://marrow.org/Join/Join_in_Person/Donor_Centers.aspx#CA http://marrow.org/Join/Join_in_Person/Donor_Centers.aspx#CA first one maybe?
morrow 15y ago
Here's a start: http://marrow.org/Join/Join_in_Person/Recruitment_Centers.aspx#CA http://marrow.org/Join/Join_in_Person/Recruitment_Centers.as... http://www.a3mhope.org/ http://www.a3mhope.org/ http://www.a3mhope.org/index.php/donor/list-of-drives http://www.a3mhope.org/index.php/donor/list-of-drives

sontek 15y ago

I'm not a gay male but refuse to be part of organizations who discriminate against them. I know they are trying to save lives but eliminating potential matches and discrimination is not the way to do that.

burke 15y ago
It's unfortunately not the organizations' fault. In general, they'd be thrilled to take anyone's blood after they screen it. The rule is specifically legislated.
corin_ 15y ago
Gay male here, and while I can't speak for everyone, I think I speak for the majority of gay males when I say: please don't do this. Our biggest concern with these policies is not that we get left out, but that others who might need our help are unable to get it. Your boycott only serves to worsen the situation, sadly. For vocal support, thankyou, please do continue expressing your opinion (though bare in mind that this kind of discrimination is at least based in logic, allbeit sometimes incorrect logic, and in protecting people, not discrimination for the sake of itself).

da_dude4242 15y ago

I'm Russian who probably has some asian DNA(ural region/mongolian?). Can someone explain to me the likelyhood of being a compatible match?

spwmoni 15y ago
With Amit? Low. But with somebody who needs marrow, high enough that it's worth getting the kit anyway.

uptown 15y ago

How difficult is it to find matches for patients? Anybody know what the odds are for the average patient in need? I ask because I registered a couple years ago but haven't ever heard anything since.

andys627 15y ago
My mom is about to do stem cell transplant - her siblings are something like 1 in 20, and my brother and I are something like 1 in 100.
rahim 15y ago
I've heard a few numbers thrown around, 1 in 20,000 comes up often, but I haven't found any reputable sources to back that up. According to the National Marrow Donor Program: "On average, one in every 540 members of Be The Match Registry in the United States will go on to donate marrow to a patient." http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#likely http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... I can say from personal experience that I've been a registered donor for 8 years, and only just yesterday did I receive an e-mail saying that I may be a possible match for a patient. The process going forward is fairly long with tests along the way to be certain (http://marrow.org/Registry_Members/Donation/Steps_of_Donation.aspx#step1 http://marrow.org/Registry_Members/Donation/Steps_of_Donatio...). I was told it could be up to 2 months before doctors decide if I move on to the next stage of donation. If the doctors decide I'm the best match, it could be another 6 months before the actual donation.

frankiejr 15y ago

In 2005, my friend Rich went to the hospital because of headaches that had been lasting for months. He was diagnosed with acute myelogenous leukemia, went through treatment, and went into remission in January of 2006. Later that year he went on to start a foundation to raise awareness about the disease and make it his mission to educate people about the urgent need for donating blood, and even more so, bone marrow. I joined the bone marrow database and encourage everyone I know to do the same. The donor card comes with me everywhere I go. Whenever I hear about someone like Mr. Gupta, I try and think of every person possible that might not know one of two very important things: 1. Becoming a donor is not as painful as you grew up beleiving it was. 2. A single day of your discomfort could give someone the rest of their life. Over the course of the next several years, Rich pretty much kept his immediate condition to himself except with his family and few very close friends. This did prove difficult for him since he was someone who was "notable" (a term those of us on HN would understand), but upon publication he would always see the silver lining since it helped promote his foundation. On September eighth, 2010, Rich was only 36 years old when he passed away after suffering a stroke secondary to leukemia. Please, do what you can. Every day, do what you can. http://marrow.org/ http://marrow.org/

sgoel 15y ago

I just registered at one of the last minute donor drives in San Francisco. The form is rather daunting, as they request your Social Security Number and your Driver's License number. Either way, I am glad to help! - a south asian

jarin 15y ago

I sent in my kit about a week ago and I'm half Thai, so here's hoping!

mcteapot 15y ago

wish I knew about this before. why was this posted on the last day...

njloof 15y ago
So now what happens?

jamesrcole 15y ago

FWIW, it might help if the site mentioned what 'South Asians' means. Not everyone is necessarily familiar with that term. I've never heard it used here in Australia. We don't have a term for that area. I had to look it up (http://en.wikipedia.org/wiki/South_Asia http://en.wikipedia.org/wiki/South_Asia). (I've emailed them this feedback).

medius 15y ago

I am an Indian living in the US and I registered for the marrow donor program after my wife forwarded information about Amit . I sent the swabs more than a week ago. Not sure how it works, but hopefully there will be a match. They said it will take two weeks for me to get the kit, but it was surprisingly fast.