
Amit Gupta hasn't found a marrow transplant match; today's your last chance. - ryanwhitney
http://www.amitguptaneedsyou.com
======
nostromo
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.

~~~
haugstrup
All Europeans are also banned from giving blood for forever. I'm a very recent
transplant to the US from Denmark. I was a regular blood donor in Denmark and
checked up on the US regulations before moving here. Even wrote the local
blood bank because I didn't believe that the "if you've lived more than 5
years in Europe, you can't give blood ever" was for real. Sadly, the rule is
very much real.

The blood bank was also annoyed but there's nothing they can do. I'd write my
representative, but as a non-citizen I don't have one.

~~~
ramblerman
Well, as a European I'm Offended.

But seriously what's the motivation behind this?

~~~
haugstrup
BSE/Mad Cow fears. Because of the BSE outbreak in the UK in the 80s (and the
various smaller outbreaks later) the US authorities were scared shitless at
some point. So if you've lived 5 or more years in Europe you're banned from
donating blood forever.

Not sure I understand the logic... Quarantine for a set period I can
understand, but banning for life makes little sense. After all there are many
blood donors in all European countries and we don't all end up with mad cow
disease when we receive blood transplants.

For comparison: After having lived in the US you are banned from giving blood
in Denmark for 1 _month_

~~~
hartror
There is actually logic behind this.

BSE is caused by misfolded proteins called prions[1] which also causes
Creutzfeldt–Jakob disease[2] (CJD) in humans. One form of CJD is Kuru[3] which
inflicts the Fore tribe of Papua New Guinea and is likely transmitted through
cannibalism interestingly enough.

There isn't a great depth of understanding of these diseases yet but in the
case of Kuru the asymptomatic period has been demonstrated to be somewhere in
between several years and several decades[4].

There are no screening tests for prion diseases[5] so the only way to be sure
is to not take blood from risk groups.

[1] <http://en.wikipedia.org/wiki/Prion>

[2]
[http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...](http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disease)

[3] <http://en.wikipedia.org/wiki/Kuru_(disease)>

[4] <http://en.wikipedia.org/wiki/Kuru_(disease)#Presentation>

[5]
[http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...](http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disease#Diagnosis)

~~~
CamperBob
What's the connection between cannibals in New Guinea and European
blood/marrow donors?

~~~
hartror
Not sure how I can make it clearer but I will try.

Because Europeans have an increased risk* of having the prion disease BSE they
aren't ever allowed to donate. The reasons for this are a similar prion
disease in New Guinea has been shown to have a very long asymptomatic period
measured in decades. And since there is no screening for prions and no one is
sure how long prion diseases remain asymptomatic all Europeans are not allowed
to give blood/marrow/organs.

* How much so is of course debatable.

~~~
dlikhten
Funny thing here. The probability of Prion Disease is very small. VERY small.
Statistically speaking, the barring of blood donation costs us significantly
more lives than the contamination possibility. Yes its unfortunate some people
will develop prion disease, but... you get it.

------
jcr
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.

~~~
there
off-topic, but is it really appropriate to be describing your friend's private
medical history on a public website that will be archived far and wide? i
think your comment is still valid without his name being mentioned.

~~~
jcr
Most definitely up-voted! Thanks for the concern 'there' but the info I posted
is entirely and intentionally public knowledge. Eric went through a great deal
medically, started a foundation to help others with ALL, and even had his
identity stolen while undergoing chemo up in Washington state by the person
who took his blood samples every day. His case was aired on "60 minutes" or
"Dateline" and resulted in one of the first federal prosecutions under HIPPA
laws.

I didn't want to "pimp" the foundation here on HN (I served on the board for
the first two years), but you can read more about it here:

<http://www.drewfoundation.org/>

~~~
srl
Knew the name sounded familiar - I remember reading about this guy in National
Geographic or something. Amazing story.

------
kevinelliott
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
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
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.

~~~
adaml_623
Please deal with your guilt by 'annoying' 10 other people and telling
them/convincing them that signing up to the donor registry is very easy.

Alternately if you 'can't tell others about the thousands of people who are
also in need' then yes you are guilty and should probably figure out something
else useful for humanity that your conscience/selfulness lets you do.

~~~
kevinelliott
I think you misinterpreted what I was saying.

I do not know the names, locations, or other pieces of information about the
thousands of other people who are also in need. We know Amit. Without knowing
their names and locations, there is absolutely no way to bring the same class
of attention to them. There is no way to build a website highlighting one of
the thousands of other people, nor is there a way to make it personable and
striking to others to get involved.

Amit is lucky because he has a community of people who are making excellent
efforts to find him a match. That's fantastic!

The guilt comes in when I know that it's just not possible (or sustainable) to
do the same thing for all of the other people in his shoes.

I am a little sad that my message was misinterpreted and it sounded like I was
full of "selfulness" --- but I'm hoping it was just a miscommunication.

------
ryanwhitney
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-...](http://www.good.is/post/amit-gupta-and-the-south-asian-bone-marrow-
deficit/)

------
frankiejr
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/>

------
SandB0x
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
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
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.

------
jason_slack
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
> 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.

------
eric-hu
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.

~~~
morrow
Here's a start:

[http://marrow.org/Join/Join_in_Person/Recruitment_Centers.as...](http://marrow.org/Join/Join_in_Person/Recruitment_Centers.aspx#CA)

<http://www.a3mhope.org/>

<http://www.a3mhope.org/index.php/donor/list-of-drives>

------
sax
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
Gupta is the English equivalent of Smith in India..

~~~
sax
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
_This is not true for Smiths in any part of the world._

Sure it is. See, for example, Eleanor Roosevelt.

------
sontek
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.

~~~
corin_
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).

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

~~~
watmough
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_transpl...](http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Sources_and_storage_of_cells)

------
jamesrcole
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>).

(I've emailed them this feedback).

------
Irfaan
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
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.

------
palish
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
Get started with the quick questionnaire at
<http://marrow.org/Join/Join_Now/Join_Now.aspx> and they'll mail the kit to
you within a few weeks.

~~~
baddox
Seems a little late for that, unfortunately.

~~~
jey
There's still a lot of other people who need a matching donor.

------
febeling
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...](http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to_donor)

I'm not a doctor.

------
mooli7dm
I may be a bit late, but I registered nonetheless.

------
medius
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.

------
sk_0919
I just applied, You should too.

------
sgoel
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

------
uptown
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.

~~~
rahim
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.as...](http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#likely)

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_Donatio...](http://marrow.org/Registry_Members/Donation/Steps_of_Donation.aspx#step1)).
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.

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

------
da_dude4242
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
With Amit? Low. But with _somebody_ who needs marrow, high enough that it's
worth getting the kit anyway.

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

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

~~~
njloof
So now what happens?

------
freemarketteddy
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!

~~~
zasz
It costs money to sequence DNA and calculate someone's ancestry. 23andMe loses
money whenever it sells a kit. Are you seriously too lazy to save a nonprofit
a few hundred bucks by spending 1 second to indicate your race?

Also, every time I buy something at a store, I have to give them my addresses.
Including my phone number and a few extra ways to contact me in case I move,
and you know, someone is dying and needs my help, sounds pretty reasonable.

~~~
cpher
_Also, every time I buy something at a store, I have to give them my
addresses._

I hope you're kidding...

~~~
burgerbrain
Many stores ask for it. Radioshack I believe is a prime example of this. I've
never heard of them hassling you if you refuse however.

~~~
gujk
Radioshack stopped doing that a while back.

~~~
burgerbrain
Ah, good to hear.

------
rorrr
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
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> (paywall)

~~~
FaceKicker
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
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.

