The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.
If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation.
I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.
My brother had a bone marrow/stem cell transplant a couple of years ago and I was a matching sibling able to donate. Yes, it's unfortunate that there are so many of us who don't understand how risk free this procedure is to a donor. There are a couple of problems that contribute to this in my opinion.
First, the name of the procedure itself is misleading. It's called a "Bone Marrow Transplant". A lot of times however, there is not even bone marrow taken directly from a donor. I was not even poked in the bone at all. In my case, I was hooked up to an apheresis machine for a few hours, and it basically pumped blood out of one arm, and then pumped back the blood minus stem cells into the other arm. A bag of stem cells is then intravenously given to the patient which then makes its way to the bone cavities and starts growing new bone marrow. The donor goes back home on the same day and hangs out like its any other day.
Second, there are some blood disorders for which they require bone marrow from the donor. Now, again, this is not scary as it sounds. They extracted bone marrow a few times from my brother for tests. There is no "drilling" involved. Yes, its a bigger needle, that they insert into your hip bone after administering local anesthetic. I don't know first hand how much it hurts, but they don't even admit you in the hospital for a day. And for the next couple of days, you are a bit sore from it. My brother has average pain tolerance and I didn't see him writhe in pain at all at any time once the procedure was done (happened in less than 10 minutes). I suspect that a torn ACL, a broken ankle or arm which many people on this list would have experienced are far far much worse.
Third, unlike other types of donations involved in transplant like a kidney or liver, this process doesn't take anything from the donor that is not completely replaceable. If you donate stem cells, they will replenish in your body automatically, and the same with bone marrow. Really, there is no easier way where it costs you almost nothing but average pain and minor discomfort for a few days at the most.
I spent over three months in the hospital with my brother in India when he had the transplant. Fortunately, I was a matching sibling so we didn't have to look in any registry. But I spent my days and evenings with countless families who had a loved one undergoing chemo, while just waiting hopelessly to see if they could find a matching donor in a registry. Few things are as heartbreaking to see as families just not being able to do anything and watch someone in their family just hinge on hope from a database. The least we can do is increase their chances for hope with a cheek swab.
I have donated bone marrow three times. All were during my undergrad years, and the motivation was supporting medical research but also that it paid well (from the perspective of an undergrad).
The donation process was exactly as described in
http://www.marrow.org/Registry_Members/Donation/Donation_FAQ...
but I was given only local anesthesia. The marrow was withdrawn from one of the two protrusions of my pelvis about 2-3 inches away from my spine (basically the very top of my butt). The process is certainly a strange feeling, but it's tame--not donating a kidney or anything.
It's a good opportunity to practice deep breathing and relaxation while focusing on the wonders of the human body.
Yes, I should have noted that I was donating as a paid research subject and not specifically to a marrow bank or to an individual who needed a transplant.
I commented to explain that the marrow-withdrawal process itself is nothing to be concerned about, actually involving less discomfort than donating blood.
Being afraid of something like this is absolutely rational. Losing something that helps to keep you alive is scary, even when you're told that there's absolutely no risk to your personal health in doing so. But don't let fear hold you back. That sounds super high and mighty, but I understand your fear more than most.
I am terrified of giving blood. Terrified. The thought of having my blood drained out gives me goosebumps. Writing about it is giving me goosebumps. That being said, I donate blood platelets every month or two. The process takes 2 f'n hours, and God forbid I look at the blood leaving my system (because I will pass out). The trick for me is not looking.
Keep in mind that donating anything is a good thing, and they will never take anything that will hurt your body's ability to recover. Try it out. If you can stand it, at least you overcame your fear and tried it. If you can stand it, or think you can, find a trick to make it more manageable.
And last bit, I too have never donated marrow before. If you're willing to try, I will try it as well. Any other first timers are welcome to jump on the bandwagon with me. Thanks for sharing Oconnore.
I agree with you. I have no idea what's involved and because of my own ignorance all I know is that it could be a lot of pain and somewhat time consuming.
That being said, I just signed up. I had started reading the book "The Emperor of All Maladies" and then seeing Amit's post pushed me over the edge to go ahead and sign up.
Even in my ignorance I figure someone's life stands in the balance and my pain and time is more than worth it to potentially save a life. That being said if my # gets called I'm sure I'll be nervous as hell!
I'm an Acute Mylogenous Leukemia (AML) survivor and a Level 2 ambassador with the National Marrow Donor Program. I'd like to thank you for your honesty, as a lack of awareness (and the resulting fear) is one of the biggest obstacles the NMDP faces when trying to recruit donors. Your perspective really is something that I think a lot of people feel but don't necessarily share, and I commend you for having the courage to do so. It's a step in the right direction for finding the right means of educating the public.
I'll try to respond to some of your questions as best I can, but please keep in mind that I am not a doctor and while I have received volunteer training from the NMDP, any thoughts expressed in this post are my own.
Your bone marrow is the mechanism in your body that generates blood cells. Blood is composed of a few different parts -- red blood cells, white blood cells, platelets and plasma. Red blood cells carry oxygen throughout the body, plasma is the liquid, platelets help in clotting to prevent bleeding and white blood cells act as the carriers of the body's immune system.
What happened with me (and likely with Amit) is that at some point a mutation occurred within my bone marrow so it began generating malformed white blood cells. Instead of behaving like a normal immune system these mutated cells did nothing but fill up my blood stream, inhibiting the growth and transport of normal white blood cells and platelets. As a result I began to get progressively sicker, with bruising appearing over my body. As you can imagine this situation gets very dangerous very quickly, as doctors told me that if I hadn't gone into the ER when I did I ran the risk of bleeding in my brain while walking to class.
Chemotherapy was used to effectively kill off all aspects of my blood -- white blood cells, red blood cells, platelets included. The hope here was for chemo to wipe out as much as it could in hopes of eliminating all traces of cancer in my bone marrow. Due to the human body's natural resiliency, after chemo eventually the bone marrow would start to regenerate. The hope was that after this regeneration happened no cancer cells would be reproduced.
For me, it was a waiting game: undergo chemo, wait to see if cancer reappeared. I did this six times (2 inductive rounds, 4 consolidation rounds). Thankfully after those first two rounds I was in the clear. I've been in remission for a little over four years now, and I still go into the doctor for regular blood tests.
While I'm not exactly sure of the medical reasons why bone marrow transplants are needed, I do know that a very simplistic view of them is that they're necessary when chemotherapy is not enough. Whether it's because the chemotherapy is ineffective or specific DNA markers or whatever, there are times when the body's natural bone marrow is no longer effective in producing normal blood cells. It's a dangerous procedure for the recipient (because of the possibility of the body rejecting the transplant) but it's not considered in circumstances where other viable alternatives exist. It really is something of a last resort.
For donors, joining the registry is painless and extremely simple. The NMDP asks you to check against a preliminary health screening (http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidel...), understand the commitment (http://marrow.org/Join/Your_Commitment.aspx), and fill out a form with some medical/contact information to make sure that you can be contacted in the event of a match. I read a statistic that less than 50% of those currently within the registry (1) can be contacted successfully and (2) are willing to donate once a match is found. (http://www.ij.org/about/2903) The form asks for your contact information and the contact information of two others who do not live with you, just in case you happen to move elsewhere at a later date. The NMDP takes privacy very seriously, and will not solicit you or others with the contact information you provide.
The form comes with a swab kit consisting of four cotton swabs. These swabs are processed by the NMDP to match donors and recipients by specific DNA markers. To register, you simply swab the inside of your cheek with each swab, for 20 seconds each. Put the swabs back into the kit and then they're sent off for processing. That's it; a form and four cheek swabs.
A donor's commitment when joining the registry is to be on the registry until they're 61, although they can remove themselves from the registry at any time.
Given the specific DNA markers used to match donors and recipients, realistically the chances are that you will never be called to donate marrow. According to the FAQ here (http://amitguptaneedsyou.tumblr.com/faq), the NMDP puts the odds at 1 in 540.
If you do one day receive a call to be a donor, there are currently two main methods of bone marrow donation. The first, Peripheral Blood Stem Cell (PBSC) donation, is used in over 70% of cases and is described in detail here: http://www.marrow.org/Registry_Members/Donation/Steps_of_Don.... Another good reference is this site: http://helpingtami.org/asian_bone_marrow_and_pbsc.html, which despite the cartoonish graphics, serves as a pretty accurate representation of what PBSC entails. You get a shot for a few days that kicks up your normal bodily process of bone marrow production into overdrive, to the point where bone marrow cells enter your bloodstream. You donate blood, after which bone marrow cells are irradiated out. The blood is then put back into your body. I've personally received the shot (called Neupogen) that is used to kick up your bone marrow production over 30 times, as it was used following each of my rounds of chemo. A common side effect of the drug is that it makes you a bit achy and sore, as if you had gone on a long hike the day before. I did not feel any significant discomfort on neupogen to the point where I couldn't go about my day as normal.
The other procedure is extracting bone marrow from your hip bone, which is performed under general anaesthetic. It is also depicted on the helpingtami.org link above. 30% of bone marrow donations are performed this way, and I believe it's usually due to restrictions of the recipient. Receiving a bone marrow transplant can be extremely taxing on the human body, and if a patient is too young or old for PBSC a bone marrow extraction is requested in its place. Admittedly this process is more invasive, and as a result donors are put to sleep. Doctors use special, hollow needles to extract little bits of bone marrow from your hip, and because the needles are small it does require a lot of sticks to collect enough marrow for a transplant. I've also had this procedure done to me, albeit in a lesser volume -- it's the same process used to perform bone marrow biopsies. I was awake for the procedure both times and received local (vs. general) anaesthetic. Needles are needles so there was discomfort, but it was very quick -- like a hard pinch. Patients are sore for a few days afterwards, more so than PBSC, but recover quickly. Donors perform a full health scan before donating in the interests of their own well being as well as the patient, so if you're not healthy enough to donate and recover, you will probably not be allowed to get to that point in the first place.
When donors join the registry they commit to donating to anyone in need, not just the person the drive is in honor of. So although a local drive may be in honor of Amit, the power of the awareness being raised by the publicity of his sickness is that there are people who have never heard of Amit Gupta that will have their lives saved by his efforts, perhaps even decades from now. I know that Amit is a very important person in the technical community, but please remember that everyone who needs a donor is the most important person in the world to somebody -- a parent, a sibling, a child or a best friend. In that regard I believe that everyone who has someone in their life that they love more than themselves can empathize with what it must be like to be powerless to help that person in their time of greatest need.
Please consider joining the bone marrow registry. It truly is the opportunity to save someone's life.
I have been unable to donate blood because I take Avodart. Is this the same for donating bone marrow?
I am 70 years old in good health and am a B+ blood type
walter.lapham@gmail.com
The second one is the more likely one to be used, the other is quite rare. In this case it seems it is 'only' the second (which is still quite bit more time consuming than a normal blood donation in duration).
That fear is natural, and the reason why the various bone marrow organizations have all sorts of available brochures and web pages available.
For a first hand account: I've donated bone marrow by peripheral blood stem cell extraction, and it's mostly painless. I'd do it again any day (except I'm not allowed to by my country's organization's policy, but that's another problem). A colleague of mine donated by needle extraction, and didn't report anything traumatic.
It really doesn't, sorry. I have no idea what any of that means, and I don't even understand what exactly my bone marrow does, never mind how much of it I can lose before something bad happens. I have lost blood before, like when I scraped my knee falling off a bike. I have never had my blood filtered for stem cells. Don't I need those?
And I am a college educated person. If I got through school with this level of ignorance about the bone marrow donation process, there are probably millions of other people with similar ignorance about the issue (and likely, those people are not as quick to do research, as I am doing now). I don't think a few sentences in a FAQ is enough to combat this.
Fair enough. I don't know much about Peripheral Blood Stem Cells in particular, but I am under the impression that stem cells in general are not serving much of a purpose besides waiting around to become differentiated into other cell types.
But I wouldn't be too worried about giving up any of your cells, besides brain/nerve cells.
Almost all our cells have the same genetic information (Red Blood Cells are one exception), so it is theoretically possible to turn one type into just about any other. Shinya Yamanaka's team made a huge step in that direction experimentally about 5 years ago: http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell
I'm not saying that this is a viable option if you run out of PBSCs (just as it is clearly not yet an option for you to donate skin cells to help Amit), so one thing you may want to find out is if your PBSCs are limited in supply--I don't know (and I am also not in the right demographic for this donation).
A PBSC-based donation is preceded by a few day's worth of treatment to activate the bones' BSC reproduction, so that they're numerous enough to outgrow the bones and actually become "peripheral". So they're really taking away cells that you usually don't have with you.
I have done the Peripheral extraction thing. You have a needle in each arm, and apart from that slight discomfort you can just sit/lie back and watch TV for a few hours. As tripa says, you get a few days of injections beforehand to stimulate the production - these are subcutaneous, like an insulin shot.
It is a rather big needle that goes into you, but you're under anesthetics, so it'd not that big of a deal. Risks are minimal, and include unwanted damages to bone, muscle and nerves, plus any regular anesthetic-related effects. Realize that with any operation, these things are unavoidable and it is not unique to bone marrow donations.
Generally (quoted from Dal med school), there is about a 1% chance of adverse effects in the donor, and the 1% is almost entirely anesthetic related.
You will be sore for about two weeks. The amount taken, however, is very small, and it shouldn't really affect you all that much. All in all, it's worth saving his life--any life in general, really.
Pardon my ignorance, but: for those 1% : does the medical insurance cover you for any after-effects? Does the recipients insurance cover you for any medical expenses arising from the donation?
Amit Gupta started Jelly (http://workatjelly.com/), the coworking space, and founded Photojojo (http://photojojo.com/). I don't know him personally, (friend of a friend), but he is a really nice guy.
Jelly wasn't just a coworking space, it was (as far as I understand) the first public coworking space. Surely before Jelly freelancers were working together, but Jelly was the first "come one, come all!" kind of coworking space. And it's free.
And it makes sense. Amit is a "come one, come all" kind of guy, which is why so many people are rallying behind him.
Dude, what the fuck is wrong with you people? You get a comment from someone who was actually present at the very first coworking space who corrects a fact about the history of coworking, and it gets downmodded to -1?
I'm fucking done here for a while. You people fucking suck.
Honestly, does it really matter? Someone shouldn't need to be famous, well known, or have notable accomplishments for you to donate and save their life.
This. Unfortunately, right now lots of people need bone marrow donations to fight off various types of cancers. My mother couldn't get one, for example, and that was because people simply wouldn't donate. I apparently wasn't an option and her brother and sister passed away.
Hopefully this raises awareness enough that more people become aware of what this is all about and we can save more lives.
Imagine this - if this was Steve Jobs asking for help, what do you think the response would have been? Versus, someone like me who is vanilla software engineer.
Trying to give an extreme example to illustrate this.
Amit is (among other things that bring people joy) the creator of PhotoJoJo and an incredibly nice man. I have only been in contact with him twice, briefly, and both left me happier than before.
He's big in the entrepreneur community, started Jelly co-working, is a great mentor to many young entrepreneurs, but more than that he's a really great guy. If your brown and down, donate your marrow.
A lot of people here say he is very well known in the community and he is a great person. My first question was why haven't those people stepped up. Maybe there is a matching issue, I don't know. If not then they should. I would have.
Lots of us have gotten friends and friends of friends to swab and shouted from the rooftops to try and get people to contribute to the pool. Many are also creating drives for people to register. There isn't a lack of action - but there can always be more and we will continue to push.
Long time reader but never posted before. If anyone here will be attending, I'll be manning the National Marrow Donor Program booth registering donors this Saturday, October 29 at TEDxMidAtlantic in Washington DC (http://tedxmidatlantic.com/). While the booth is intended to be in Amit's honor, I strongly encourage any minorities to join the registry, as the need is severe across all ethnic groups. I'm an AML survivor myself (though no BMT, chemo-only), and I can't emphasize enough that the decision to join the registry is opening yourself up to the opportunity to literally save someone else's life.
Not that it will matter to the trolls, but it's worth noting:
The vast majority of championing for this cause is happening on behalf of Amit, not by Amit himself. He was actually quite reluctant to be public about his condition, and has only stepped forward at the encouragement of people close to him.
While Amit is at the center of this effort, the narrative has quickly widened to address the much larger issue of underrepresented populations in the bone marrow database. The impact of the efforts inspired by Amit's situation will be felt far beyond that of one person.
Even as he fights for his life undergoing intense chemotherapy and all kinds of difficulties most of us have no appreciation for, he continues to do the best he can to help people.
Anyone who does that deserves not just our respect and admiration, but our attention and participation.
If anyone feels like being self righteous, they might do well to channel that energy into doing something that helps the world instead of leaving insidious comments on a thread.
I applied for a kit when I first heard about this, but the kit's been sitting on my desk for a couple days.
I just went ahead and did the swabbing. It was very simple, took only 2 minutes, and was completely non-invasive. (It was also completely free.)
If you haven't signed up yet, please do so. Even if you don't care about Amit (I have no idea who he is), you might be able to help someone else in need.
You leave DNA everywhere you go. Every time you sit in a chair, every time you drink from a cup, pee in a public urinal, open a door handle ... You give blood tests to your doctor, and don't demand to see the privacy policy of the lab and all the handlers in between.
You worry too much. :) No one wants your DNA - and if they wanted it they could easily get it. Take the test and possibly save a life.
Edited: to add a smiley face and improve the tone, since this was intended to be a "don't worry be happy" message and not "you're a bad human being". Sorry about that.
You might or might not be correct, but it's quite difficult to get your point across with that kind of a tone. Talking in favor of someone suffering from leukemia doesn't automatically grant you rights to spew personal insults at someone.
I was watching some police documentary show a long time ago - and it was either the FBI or the police that needed a murder suspect's DNA - they brought him in for questioning, and asked him for a sample, and he declined. They had pretty compelling circumstantial evidence, so what they did was follow him around for 2 or 3 weeks to all of the public places he went, looking to get a left-behind hair, a swab of spit, a used soda can, food, any sample of his DNA they could use to test it against the murder scene evidence. This guy knows this is going on, and is playing cat and mouse with them, covering all of this DNA tracks - being careful to not leave anything for them.
He eventually absent-mindedly spits on the sidewalk and they dab it up with cotton swabs, run the tests, and get the match, and arrest him. My point is, if somebody wants your DNA, even if you spend your entire day methodically covering your tracks because you're a murderer and you know it will send you to jail for life, you will eventually leave a trace somewhere. It's just the nature of our biology - it isn't the case that your DNA is a secret, and your body is a vault, and submitting this test is giving away that secret.
In the case of submitting it here, I cannot imagine that any government agency that has the need for your DNA for some particular reason would think this was the best way to get it.
(Hope this didn't serve to just make you more paranoid...)
I have registered for the test kit. I really appreciate the way amit and friends have set up the campaign. This gives maximum chance for him to survive and also helps other victims as well, since they might contact you if some one else needs help. Good luck Amit, I hope you will pull through it.
There have been some great results in the news recently regarding CAR T cells in the treatment of Chronic Lymphocytic Leukemia. I think this one might be a winner.
From what I understand about this treatment, blood is removed from the patient and 'infected' with a harmless HIV virus that has been modified to attach a molecule to T cells. This molecule binds to a receptor (CD19) on the cancer cell, thereby creating T cells that attack the cancer cells. The treated blood is injected back to the patient and the patients body creates more of these cells on it's own- effectively creating an immune response to the cancer cells.
Do you think a subset of HN readers could somehow facilitate a project that could help the labs researching ( or planning on researching ) methods for expanding this method of treating cancer? I would like to ( and inspire people here to ):
1) find the available labs that can best perform the _steps_ required for this treatment _process_. Basically, get a list of labs.
2) help expedite iterative methods for techniques that:
a) speed the development time of the specific _step(s)_, and/or
b) broaden the efficacy of the overall treatment _process_ ( ie. treat other cancers ).
Basically, list the _steps_ in the _process_ and see if there is a way to make them faster, better.
3) create tools that allow the people and labs working on this _process_ to communicate as efficiently as possible. Basically, learn how the different labs work and write tools that streamline their collaborative workflow.
I have a feeling there are many smart people on this site with free time ( ie. visiting this site often ), technical resources, and organizing skills that could make this happen- fast. Shoot me an email with questions/comments/complaints if you don't want to comment on this thread; I want to help.
Does testing from the swab kits match you up with anyone in need of bone marrow? I have a coworker with leukemia too and I'm sure many others here know of similar situations and it'd be great to have a resource that works for everyone. Posting individual stories doesn't scale very well.
Yes, it enters you into the National Marrow Donor Registry. Posting individual stories works better than statistics because it motivates people much more (yet another quirk of our psychology).
A poster above cited the 1 in 500 chance of being called if you're on the registry. For me that's both a good chance you won't have to bother with getting poked with a needle, and a decent chance that you might have the opportunity to save someone's freaking life.
There are numerous ethical issues surrounding the commercial/free-market trade of human organs.
Most simply:
- There is, naturally, demand for bone marrow transplants in India. What are the moral and ethical implications of denying someone there (of presumably lower economic ability) a transplant so they can supply someone in the US (of presumably much higher economic ability)? If they were swimming in an excess of willing donors, perhaps this would be less of an issue, but I don't know any country in the world where there is a surplus of bone marrow donors.
- What incentive structure does this create, and what does it mean for us if we legitimize commercial organ trade? How many donations will be voluntary, or will we see an explosion in "donations", forced upon the disenfranchised and vulnerable?
I'd be very wary of walking down the path of commercialized organ trade.
Interestingly though, this isn't "organ" trade, because the resource in question is replenished by the body within a few weeks. So it isn't really depriving anyone of anything to donate bone marrow.
Call me paranoid, but can you use a slightly different name in the registry to keep the prying hands of the state off your voluntary DNA sample? Has there been any known cases of the police using this registry to obtain evidence for prosecutions?
Hi: HN doesn't support private messages, and it doesn't show your email address by default. If you want to let people message you, you have to explicitly put your email address in the about field in your profile (here: http://news.ycombinator.com/user?id=inuhj )
I joined one of the drives a week ago in New York. Swabbing your cheek is easy, filling out the form is easy, and even though the odds are I'm not a match for Amit, I may one day be the match for someone else.
From what I understand, the procedures for donation have gotten simpler and less invasive all the time. Giving up a day for the chance to save someone's life is an absolute no-brainer. Easiest decision I'll ever make.
I have been monitoring this for a few weeks. No luck thus far (as of 10/24). Seth Godin has been a pretty big champion, though, and I think that helped really get the word out there.
I don't understand why blood, marrow, and organs have to be donated. I agree that the concept is discussing, but in a life and death situation people should be able to pay to "encourage" a donor.
Already there are a lot of people who go to third world countries to buy organs. If it was legal to buy organs people wouldn't have to risk the unsanitary operation condition.
Furthermore, seeing as giving blood or marrow is less dangerous there should be no reason not to allow people to buy them.
I'm not in the US, and I'm a white Caucasian, so it won't be any help to Amit. But when the Australian Red Cross phoned me up this morning to set an appointment to donate blood I also told them I wanted to get registered as a bone marrow donor. Until yesterday, I had no idea they could now extract bone marrow cells via blood. Excellent timing on both the post and the phone call!
Once someone with AML gets a marrow what does their 1 year prognosis look like? I computed cancer "yield" a year ago based on cancer data from the state of New York, and Leukemia is (unfortunately) a pretty devastating cancer:
Sad! I am south asian and I just tried to register - they refused to sign me up as I have had hepatitis B in the past. In India, this is so common that people don't even know they have had it (I came to know about it 10 years after having it). I just remember having 'jaundice' once.
I know some other people on the list, and was looking at signing up, but got really annoyed that all the registries seem to demand a third party or multiple third party contact info in order to submit a sample.
They do this so that they have more ways to contact you if you are a match some day. Apparently not being able to contact matches, due to outdated contact info, is a big problem. Like, on the order of 50%. It's still annoying but at least it has a legit purpose.
I just registered for a bone marrow match drive tomorrow at OSU. While I'm 100% sure I'm not a match for Amit, I hope that many people show up, and that I'm a match for someone.
while i think the cause is great, i can't help but feel a little sad that it has taken this event to spur everyone in the community to a more philanthropic direction. many of us here are looking to become rich and successful and forget that in many ways, we are already very wealthy.
honestly, i think it's a good time to think of all the positive things we can do with what we have - including using our technical knowhow to make the world a better place for those less fortunate.
Sure, it may be focused on saving him, but that doesn't mean that what he's doing isn't good for other people too. Getting potential donors (especially in an under-represented group) to sign up for the bone marrow registry is a all around good thing, who cares if they're doing it because Amit got them to? They might end up being able to save someone else's life.
I guess HN doesn't have much experience dealing with trolls. Copy-pasta replies, repetitiveness, lack of rational argument and the _need_ to be contra-norm all point that way. Please, let's stop feeding this and letting it take up half the comment space on this.
Yeah, it appeared like trolling only until he replied to your comment above. That seems to be the first thread he's attempted to apply some logic here.
I'm not sure what part of my comment you're addressing. The only real point I made was that his plight was shameless. I understand if saying that makes people upset, but it doesn't make it less true.
And repeating it doesn't make it any more true. In what sense his is plea for help shameless? Should he simply sit back, do nothing, and hope something works out? It's not like he is taking from others for his own benefit. Indeed as others have pointed out, it's likely that his campaign has benefited others, not only himself.
In what philosophical framework does modesty or even decency come before preservation of one's own life? This isn't Breaking Bad -- making a website and asking for help is pretty well unimpeachable IMO.
He's not morally wrong, I'm saying the nature of what he's doing is shameless. Clearly this is an important issue to him, but he's vastly overestimating his importance to everyone else. If every person with a need had a poster plastered around the city with their name on it, every city would be covered from sidewalk to rooftop. I'm just calling it like I see it.
he's vastly overestimating his importance to everyone else
I think you're vastly underestimating the number of people in the startup community to who he's very important. He's not Steve Jobs, but he's someone a lot of us care about.
As I understand it, this will also help other people. Since the more people who join the registry or donate to it, the higher the chance that some other patient will find a match. If it takes some people plastering the web, so be it. In fact everyone, not just South Asians, should can use this opportunity to get on the registry.
First and foremost, I think this is a good cause,so please don't take this as a negative against the goal.
Second, I have not read the rules for donating/being on the reigstry so I may be jumping the gun and having a preconceived notion that doesn't hold true.
But there's assumption of the number of people who would help someone else if they were found a match as opposed to simply helping out Amit. If they are on the registry and do match someone else are they required to do the donation at that point? Unlike blood donation, the bone marrow is a just in time donation (if I understand it correctly). This puts it in a different category.
Again, I think this is a good idea and I hope those that are putting their names on the registry are doing so for the belief of doing good for all, not just for one.
Not many people have a need for several hours of your time which will literally save their life. Just saying, everyone has needs, but the number of people with needs this urgent is very low (tens of thousands in the US, maybe?).
In any case, take a look at the marrow match site that Amit links; it requires people who send in swabs to commit to donating to any patient that matches, not just Amit. This is probably going to help a lot of people besides just him.
If whatever you are doing works out for you, it would be cool to see the point you are trying to make by commenting on other peoples' life-threatening needs shamelessly.
I did not say that you are cynical. I just said you are shameless.
I don't know you and you more than likely don't know me. But still I feel that I have to respond to you because the way you carry yourself here is in my opinion doing a disservice to yourself, to the community and to your employer.
If you take up a position that is going to be this un-popular you should at least try to do a better job of explaining your reasons why than you have done in this thread.
In principle, you have a point. Before Amit Gupta knew that he had leukemia, he in all likelihood would not have been nearly as motivated to improve the state of the art.
But such is human nature. Strangers are statistics, people are tragedies. We can only relate to that which we ourselves have direct knowledge of, and the second best thing next to that is that someone that we know or care for has direct knowledge of.
That is what makes things personal. And I think that is where you're missing the beat here. Amit Gupta is personal for a large enough number of people here (who likely aren't even in the right demographic to help him) that you are wrong about this being 'shameless'. It would be shameless if none of us had ever heard about Amit Gupta in the first place.
And even though plenty of people here (likely including you, but I can't be sure of that) have never heard of him, lots of people have.
We also have a lot in common with Amit Gupta. We're all either working in the IT business, working on start-ups and we're likely all at risk of being blindsided by a disease like this. Which is typically not on your radar when you're a 20 or 30 something working hard on your startups.
So, just like it isn't proper to talk bad about people on their funeral it isn't proper to piss on those that have landed a very bad lottery ticket indeed and that are currently - with the help of some dedicated friends - trying to change the odds in their favor.
Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him.
If Amit should die you may come to regret your harsh words here quite a bit.
In the meantime I hope that a match will come up and that Amit will be allright and that this will raise the awareness of how fragile life is, even when it seems as though you're doing just fine.
If one day there will be a website titled andrewmoffatneedsyou.com then I will not hold any of this against you.
> Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him.
This alludes to my original comment. I hope he continues promoting this kind of thing if it helps him, but for other people, given that he has such a broad reach and lack of modesty. Is that so wrong to say? I know it is unpopular to say, but is it wrong to hope for?
I have no problem with what is being done, just how it is being done. I don't wish Amit dies. I don't even know him. It is a tragedy that he has leukemia. But given the platform and reach he so clearly has, is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have? Doesn't sound like it.
He wants life, but it doesn't sound like he has much respect for it. It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me."
As for my community and my employer, don't bring them into it. I'm my own person, with my own opinions, and those are whose opinions I express.
> This alludes to my original comment. I hope he continues promoting this kind of thing if it helps him, but for other people, given that he has such a broad reach and lack of modesty.
When you've received something that is effectively a slightly delayed death sentence 'modesty' goes right out the window. You need help. Trust me, having to ask for help is not the greatest thing to do but sometimes there is no way around it. As I'm sure Amit has found out in the hardest way possible. Having to go cap-in-hand to the world at large to ask them to do something potentially invasive on your behalf is a fairly humbling experience.
> Is that so wrong to say?
Yes, I believe it is. I doubt Amit had half or even 10% of the reach that he had a year ago than he has right now because those that know him and like him are the megaphone through which is case is broadcast to the world. Before he was this gravelly ill his ability to reach people was only a small fraction of what it is today. The posted link is testimony to that.
I don't see Amit himself doing any of this on his own, it's more that enough people know him and care about him that causes this to happen. That alone should give you some pause, how many people do you know that would get that kind of response? If the answer is 'none' then you can probably attribute that to some positive factors working to Amit's advantage, such as being a relatively decent human being.
> I know it is unpopular to say, but is it wrong to hope for?
No, it is not wrong to hope for that. But that could be brought in a way that does not drag Amit or those that try to help him down. You are making your point in a uniquely negative way.
> I have no problem with what is being done, just how it is being done.
Why? How it is being done is simple: in the most effective way possible, given the short amount of time available and the difficulty of finding a match in that particular demographic the only chance there is for Amit is for some as yet unknown person to be a match. Without that, it's game over. If you have a better way of achieving that goal then I'm all ears.
> I don't wish Amit dies. I don't even know him.
Well, then before you made your original statement you should have probably invested some time in that. I don't know him either but I do know about him and what I know about him makes me think that he's a nice enough person that if I had a small chance of a match that I'd happily get myself tested.
> It is a tragedy that he has leukemia.
You bet.
> But given the platform and reach he so clearly has,
Has now.
> is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have?
I don't know. Have you asked him?
> Doesn't sound like it.
You are extrapolating a lot from very little. The only person that can shed light on that is Amit himself and I think that currently he has other worries. But after this is all over and he hopefully survives this ordeal you'll be in an excellent position to ask.
> He wants life, but it doesn't sound like he has much respect for it.
Again, what do you use to come to that conclusion?
Has he done anything at all that warrants that conclusion?
> It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me."
That's the nature of disease. It hits you, you personally or someone that you know or care about. Until then it is abstract. So the only times that you will hear about a disease where it will actually hit home is when it affects someone that is not just a fragment of a barchart. For every Amit Gupta there are 1,000's of people that haven't got a chance and of course it would be great if we knew about them and if we could do something about them. The fact is that without Amit's plight I would not even realize that his demographic is underrepresented in the banks.
My own major issue with blood donations and so on is that this is big business, the donated blood products are sold at enormous profits by companies specializing in harping on your conscience and getting you to give them their raw materials at no cost, then process them (which does cost some money), turn around and make a killing.
One of my ex girlfriends worked in blood processing for a facility that will remain nameless but you can rest assured that they were not worried what they were going to pay their heating bill from.
There are lots of things wrong in this world that you could get a head of steam up about but by going after Amit Gupta personally you are making a huge mistake.
It's not his fault he landed this particular disease and you can't blame him for doing what he can (and I have yet to see Amit doing something, all this is done by others, presumably with his consent) to survive this.
What comes after will take care of itself once it is known that there is an after.
> As for my community and my employer, don't bring them into it.
You brought them into it. When you speak in a public forum with your own name and a bunch of links in your profile you have to realize that you are doing nominally on your own account but that there are lots of people that will be offended and that that will radiate to those that you associate with.
You may not like that but that is human nature too.
> I'm my own person, with my own opinions, and those are whose opinions I express.
Well, if I were your employer I'd ask you to please remove that link to my company as long as you decide to make a fool out of yourself in public.
I can't see anything positive coming out of it.
Anyway, I think I'm occupying enough lines in this thread and it does not seem like I am making much sense to you so I will leave it here.
I stand by my original post. People can blow it out of proportion all they want, but I was speaking truthfully. I'll be sure to send my bosses a link to it so they can fire me over the great shame it brings them.
Could you post their replies? I know this was sarcastic, but I'd like to see what your bosses have to say about it. Honestly, what you're saying is controversial, but worth discussing. However, your attitude towards anyone who disagrees is shitty, and it does reflect on your company poorly. It doesn't matter that it shouldn't, it does. You might want to keep this in mind, fwiw.
"andrew's opinions made from his personal accounts on the web does not represent the opinion of panopta.com, its management, its affiliates, or any other of its employees. he's free to speak his mind online and when he does so, represents only himself. we know andrew can come off offensive at times unintentionally, but he means well and isn't trying to hurt anyone."
I had the same kind of thought after Christopher Reeve became paralyzed after his accident. I would think to myself "was he championing this cause prior to his accident? Then he doesn't deserve that much credit for doing it now, when it will benefit him".
Then I realized - it doesn't matter. The fact that someone noticeable shines a light on a cause and makes it more likely to receive some form of advances or help is laudable, if for no other reason than it increases the amount of time that we all think about these things and realize that it can affect any of us.
The only time I get frustrated about things like this is when I tell myself "yeah, but no one's helping out with my priority." But my priority is just as "selfish" - a friend of mine has a disease that gets almost no press. Still, why not cheer for those who spend any amount of time helping others? As soon as they cure / find treatments for these diseases, they'll have time to get to my friend's.
So... I understand where you're coming from. But I think spending any amount of time denigrating someone for trying to help (even if it helps him- or herself) is counterproductive.
This isn't any more shameless than a person who breaks their leg in the woods calling out for help. You shouldn't be ashamed to call out for help. If you're curious, I think that's why you're getting downvoted.
Shameless, defined: (of a person or their conduct) Characterized by or showing a lack of shame.
Shame, defined: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.
So yeah-- you're ignoring the part of the definition that comes before the semicolon for shameless. And zeroing in on one word in that definition (modesty). I think you're playing semantician, and you're not playing particularly well. I don't think very many people would agree that Amit should feel shame for what he's doing.
Question for you: Do you think he should feel shame for what he's done? If you broke your leg alone in the woods, would you cry out for help?
It's both sad and ironic that you think you're being persecuted for calling out someone else's lack of humility. It's because you're being a troll, quite frankly. I know you can't see it, but that's how you're coming across.
You claim to have a concern about the greater good and the millions who have leukemia, but from where I stand -- and pretty much everyone else -- you're using that to cover your asinine, judgmental opinion of what Amit's doing.
If that was your true concern, there are a thousand ways to express it without injecting your judgment. If you cared about not being judgmental and effectively communicating your concern, you could easily have chosen one of those. Instead, you appear more concerned about calling out Amit for a trivial fault -- the guy is using the resources at his disposal to save his own life!
He is using his name to get signups to the general national marrow donor program registry. It is possible to get tested just for Amit, but the default is that you get tested for a match to anybody who needs it.
He is using his disease to call on his community (the relatively small community of technologists and entrepreneurs) to sign up to be bone marrow donors knowing very well that there is only a small chance any one of us will be a match for him but that we may very well be a match for someone else.
So yes, he is championing other peoples' life-threatening needs!
I wonder if you excised the word "shamelessly" from this comment, if people would have had a more interesting discussion, i.e. about building a site that enables people (including non-hackers), say in similarly life-threatened positions, to spread word and bring people/marrow/blood/etc. to their aid, and perhaps too, the aid of anyone else in a similar situation. Because I think what you're calling for is interesting: a platform (like Facebook or Tumblr), instead of a single blog.
Perhaps you can link us to all of the wonderful things you are doing for other people commensurate to everything you do for your own benefit, as you seem to have this "modesty and humility" thing figured out.
I suspect you're not really sorry that we die, as you seem to think that when faced with death, the proper response is to accept one's fate.
I would understand your attitude if setting up a website meant that kittens had to die, or someone else had to suffer, but seeing as this isn't a zero-sum game, I don't.
How do you know that Amit isn't feeling ashamed of needing to publicise this? How do you know it's not his friends that have almost 'forced' him to do this?
I honestly don't get why you felt you needed to unzip your flies and piss all over this. Has this triggered some personal memory?
> you seem to think that when faced with death, the proper response is to accept one's fate.
I think the proper response is to realize that millions of people are also faced with death, that everyone WILL be faced with death, and to temper your actions with modesty and humility.
Sad to see my comment being downvoted because people disagree with it. The point that I was making was that he's shameless about his needs. Most people who have needs like his can't create this type of platform and exposure to be heard.
And it is shameless. Why do I care about amit gupta, and why are all his promotional materials centered around HIM, and not acute leukemia? People suffer every day who can't be heard like this, is it so wrong to bring up that uncomfortable fact?
To the people saying, "well what he's doing is good for others, too!" Yes, I agree. But face it, he never would've done this had he never got acute leukemia. So my original hope remains: "if this works out for him, it would be cool to see him champion other peoples' life-threatening needs." With him seeing the direct benefit of these efforts on his life, it would be cool if he maybe took it a step further and continued it for others.
> why are all his promotional materials centered around HIM(...)
Because it is more effective. It is marketing 101 that it helps to spread a message if you have a face to put on display. His story tells much more than any infochart about leukemia ever will. You can bet that people are much more inclined to help if they know who is in need.
Also, IMO, it is more honest. Even if he is "privileged" to be heard when others can't, there should be no shame in him being able to exercise this privilege to save his own life.
There's that and there is the fact that his personal background allows the spotlighting of the fact that his demographic is under-represented in the tissue banks, a fact which I did not know about.
Andrew, your comment is correct when literally interpreting dictionary definitions but misses the spirit of the situation.
If we take the current criticisms (of your comment) as being morally representative of the general population (probably a decent approximation) then most people would consider the dictionary definitions of ``shameless'' and ``modest'' to be incomplete and not applicable (at least not to someone that is possibly dying). That is one reason why you see so many upset comments here.
In the end, saving Amit's life is better than not saving it, all else being equal. Especially when the goal is so clearly defined and within reach.
> In the end, saving Amit's life is better than not saving it, all else being equal. Especially when the goal is so clearly defined and within reach.
I know...
But he could've had the same result AND acknowledged the fact that millions of people have equally important life-threatening afflictions, that his is no more important, and that his experience has helped him realize the greater good of focusing on promoting a cause like bone marrow transplants.
Instead, he chose to come off very selfish and presumptuous of his own importance to literally everyone he can reach. Just read the promotional materials, it really is shameless.
Back to my original comment though, it would be cool if he continued exactly what he's doing, but for other people, if this works out for him.
Permit me to explain how I see this. You may disagree strongly with me but I hope to convey why your comment aroused so much passion.
I don't see Amit as considering himself to be more important than anyone else. I see a man who is trying to save his own life (with very little time to spare) and I have sympathy with his cause. I don't expect him to take this cause further when he is well, even though I know that many people in the world are suffering.
My position is very different from yours. I find it difficult to agree with the sentiment of your comment because I don't expect Amit to be looking out for anyone else but himself at this moment. In this case, I suspect that many others here have similar views.
>But he could've had the same result AND acknowledged the fact that millions of people have equally important life-threatening afflictions,
He should do nothing to save himself until he's helped cure Cancer; TB; Malaria; HIV/AIDs; Starvation; Poor Sanitation; War; Earthquake prediction; etc etc?
>that his is no more important
I'm guessing (I don't know him) that it's more important to him and his loved ones.
A) I think modesty no longer becomes a factor when you are desperately trying to save your own life.
B) Sure, the design is a little flashy (I think it looks great, by the way), but I don't think he is being terribly immodest. He's not bragging about his accomplishments, he's just trying to get people to sign up as bone marrow donors, and he's using his personal plight as motivation.
Designer of the site here. (Thank you for the kind words.) We wanted to do something upbeat and positive, a kind of join-the-movement and do-your-part vibe. If it were a story just about Amit, we might be more dire, but this is a much bigger cause and we wanted to express that.
He's not morally wrong, I'm saying the nature of what he's doing is shameless. Clearly this is an important issue to him, but he's vastly overestimating his importance to everyone else. That's fine. I'm just calling it like I see it.
I believe what's going on is that the choice of calling it "shameless" brings in a number of connotations that you may not have intended. In the adverbial form it ends up bringing upon social and moral connotation beyond what you seem to be intending[1]. What I wonder is if there's a better way to put this.
If I was Amit, I would've included other sufferers in the campaign, instead of hoarding the attention all to myself. Many others could have benefited from this massive amount of exposure.
Everyone who gets swabbed is added to a national database and can be matched to anyone else who needs a donor.
The efforts happening on his behalf are, by and large, very consciously being done with this in mind. They are increasing awareness of underrepresented populations in the bone marrow database and making a much larger impact.
Also, these efforts are being coordinated and implemented by volunteers on Amit's behalf. Amit himself is not running this show. People who have better things to do than troll the internet are.
The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.
If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation.
I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.