
Amit Gupta needs you - mattangriffel
http://amitguptaneedsyou.com/
======
oconnore
_IGNORANCE:_

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.

~~~
danielna
Hi oconnore,

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...](http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx)),
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...](http://www.marrow.org/Registry_Members/Donation/Steps_of_Donation.aspx#step2).
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.

~~~
waltl
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

~~~
danielna
Hi waltl, unfortunately bone marrow registration is limited to donors between
the ages of 18-60. Please see this page for more information:
[http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidel...](http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx#Age).
Thanks for your willingness to help!

------
dholowiski
Wow... unlike most things on the web, thanks for providing a way for non-USA
people to get involved! <http://amitguptaneedsyou.tumblr.com/help-around-the-
world>

------
jgrahamc
Who is Amit Gupta? That question doesn't seem to be answered on the site and
the name isn't familiar to me.

~~~
rokhayakebe
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.

~~~
dayjah
I have. He and I won't match, but I will with someone and I look forward to
the opportunity to help someone in need.

~~~
rokhayakebe
Great person you are, Sir.

------
danielna
Hi all,

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.

------
tonybgoode
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.

------
rkudeshi
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.

~~~
nhangen
I did the same, but have not swabbed.

My primary concern is that of privacy. I don't really trust that a record of
my DNA/swab test won't end up somewhere it's not supposed to be.

~~~
unreal37
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.

~~~
sundarurfriend
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.

~~~
cgarvey
I didn't see any personal insults, mostly just logic delivered
unapologetically.

~~~
sundarurfriend
I don't know when exactly the post was edited, but the version that was there
when I replied did contain personal insults and had a much harsher tone.

Now it's turned out to have arisen from good intentions, so all is well.

------
manish
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.

------
stuntgoat
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.

<http://news.ycombinator.com/item?id=2873604>

<http://penncancer.org/cart-19>

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.

------
biot
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.

~~~
jey
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).

~~~
raleec
"A Single Death is a Tragedy; a Million Deaths is a Statistic"

------
hugh3
If South Asians are severely under-represented in the US bone marrow donor
registry, can't we just buy bone marrow from donors in (say) India?

~~~
potatolicious
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.

~~~
edanm
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.

------
tdfx
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?

------
inuhj
Hi, im working on a bone marrow drive for Amit in Chicago. If you want to help
drop me an email (edit: I put my email in the profile).

~~~
jambo
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> )

------
jeremymims
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.

Go get on the list.

------
johnnyjustice
Does anyone have any updates on his search?

~~~
josephmosby
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.

------
mccooscoos
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.

------
ajtaylor
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!

------
6841iam
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:

[http://d0j.blogspot.com/2010/05/cancer-incidence-and-
state-o...](http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-of-new-
york.html)

------
jberryman
I'm boring white western European, but signed up and should get my swab kit in
2 weeks. Maybe I can help someone else.

------
param
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.

~~~
roshanr
If you've had jaundice as a kid in India, it was probably hepatitis A, in
which case you are allowed to join. Probably worth double checking.

~~~
param
I came to know about it after 10 years because I went to a doctor in the US
for some check up. Thanks for cross-checking though

------
allanscu
There will be a bunch of folks at FailCon in SF today. I encourage everybody
to get a test.

------
rdl
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.

~~~
extension
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.

------
srik
Why not go to a good private hospital somewhere in South India.

Amit probably has a better chance of finding a matching donor there and the
procedure, I'm assuming, is less expensive than over here.

------
tibbon
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.

------
justinj
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.

------
spencerfry
Amit is a pal. One of the nicest guys you'll EVER meet. Period.

------
abbasmehdi
Just got the wife's permission and signed up, wish us luck.

------
manish_gill
Hope it works out for him.

------
paolomaffei
Isn't this a bit selfish?

------
AndrewMoffat
If this works out for him, it would be cool to see him champion other peoples'
life-threatening needs as shamelessly as he's doing his own.

~~~
AndrewMoffat
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.

~~~
dminor
You keep saying "shameless" as if it's exceptional in some way. Why should he
feel shame about trying to not die?

~~~
AndrewMoffat
shameless: 2\. done without shame; without decency or _modesty_

modesty: 1\. having or showing a moderate or humble estimate of one's merits,
importance, etc.;

~~~
jbenz
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.

~~~
AndrewMoffat
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.

~~~
justcurious664
Adrew, really curious here, how would you go about if you were in his shoes?

~~~
AndrewMoffat
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.

~~~
tonybgoode
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.

