Photojojo, Jelly founder needs bone marrow match to save his life • Hacker News Board

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#21

Post by alexknowshtml » Fri, Oct 07, 2011, 2:46 PM UTC

I'm the founder of one of the leading coworking spaces in the world, and our space and community wouldn't exist if it weren't for Amit Gupta's "Jelly" http://workatjelly.com

Amit's brilliant, kind, and as others have said here is one of my favorite humans on this planet.

It was a very, very strange day where in 24 hours:

1) I got a call about being a bone marrow match for a 30 year old man with leukemia 2) Steve Jobs passed from cancer 3) A dear friend's battle with cancer went crazy-public as he searches for help with this match.

I have great confidence that with the amount of good that Amit has put into the world, he stands a chance of finding a match. I'm very happy to see the internet rallying behind him.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#22

Post by nquinlan » Fri, Oct 07, 2011, 2:50 PM UTC

tibbon wrote: post #13

r4vik wrote: post #6

I tried to sign up but it disallows me from doing so as I'm not in the USA. which does make sense from an admin/legal perspective. However, if he needs South Asian bone marrow, isn't the best place to look South Asia? Is there an ethnic minority international bone marrow donor system anywhere? Maybe we should build one? [edit] http://www.wired.com/medtech/genetics/news/2007/03/MATCHPIA looks like someone came to a si…

I do like the idea of building one, or making a format that the national registries can exchange information easily in. I have to wonder if there's all sorts of privacy/medical/HIPPA stuff that stops/slows this.

I don't know much about HIPAA and medical privacy, but I do know it only aplies in the US, and (I think) you can sign your way out of it. However, that said there would still be a bunch of concerns, involving who has access to what.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#23

Post by diolpah » Fri, Oct 07, 2011, 3:03 PM UTC

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers.

What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on waiting lists that are far too long relative to their prognosis?

My guess is no, with the exception of people too poor to afford access to such materials - which are already so cost prohibitive that this is already a problem. I've never understood why the notion of making a market in organs and other medical materials is such taboo.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#24

Post by vladsanchez » Fri, Oct 07, 2011, 3:05 PM UTC

I'm a member of BeTheMatch.org and I'm willing to help save a life donating my bone marrow. Spread the word! Better yet, join them! Amit if you read this, contact them, they'll help you find a match. =D

"Stay Hungry! Stay Foolish!" -Steve Jobs

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#25

Post by extension » Fri, Oct 07, 2011, 3:08 PM UTC

diolpah wrote: post #23

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers. What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on wai…

How about people can sell it and the gov't has to pay for it when someone needs it? Seems a lot less distopian that way.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#26

Post by ck2 » Fri, Oct 07, 2011, 3:18 PM UTC

diolpah wrote: post #23

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers. What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on wai…

It's a slippery slope.

If it was for-profit, countries like China would be pulping political prisoners for it.

Actually maybe not just China, I am sure some states in the US would make it mandatory for prisoners to donate to pay for their own prison sentences and maybe judges would take a cut too, increasing their willingness to find people guilty (judges are already allowed to own stock in privately run prisons).

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#27

Post by sneak » Fri, Oct 07, 2011, 3:18 PM UTC

extension wrote: post #25

diolpah wrote: post #23

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers. What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on wai…

How about people can sell it and the gov't has to pay for it when someone needs it? Seems a lot less distopian that way.

This may be the very first legitimate use of tax dollars I've ever heard of.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#28

Post by diolpah » Fri, Oct 07, 2011, 3:20 PM UTC

extension wrote: post #25

diolpah wrote: post #23

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers. What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on wai…

How about people can sell it and the gov't has to pay for it when someone needs it? Seems a lot less distopian that way.

Well, I think the question of "who pays for it", while important, is orthogonal to this particular issue, which is about increasing the available supply.

If a poor but healthy south asian immigrant wants startup capital to open a restaurant, and Amit wants a long and fruitful life, a legal market that allowed such a transaction would dramatically increase the supply of available materials. And it may even be possible that this increased supply would drive the end cost of living tissue down.

Now to be clear, I don't want to detract from Amit's immediate issue - this thread should be about helping him, not lead off a discussion that has nothing do to with his immediate problem( nobody here is going to change the legal framework within a month ). But I would like to at least understand the downsides to allowing markets in living tissue.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#29

Post by juiceandjuice » Fri, Oct 07, 2011, 3:20 PM UTC

pitdesi wrote: post #3

I don't know Amit personally but have interacted with him a bunch because he's a customer, and he is a really awesome guy. If you are in Chicago and South Asian, I'm hosting an event next Thursday where we'll be doing cheek swabs: http://www.facebook.com/event.php?eid=160586174028348 If in New York, there is an event next Friday: http://brownbones.eventbrite.com/

I know Amit very well. My best friend/roommate is a dev for PJJ (pictured on the blog). Amit is one of the nicest people I know. This is such a bummer.

Re: Photojojo, Jelly founder needs bone marrow match to save his life

#30

Post by jgilliam » Fri, Oct 07, 2011, 3:42 PM UTC

diolpah wrote: post #23

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers. What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on wai…

One thing to know that is somewhat unique to bone marrow transplants, is that you need a lot of people registered in order to find anyone who will match. It's not like you can go pay someone for their bone marrow and be done with it, you need to find that one person amongst millions.

That changes the incentives a lot. When you register, some day you may get a call that you are the one person in the world that can save someone's life.

[I had a bone marrow transplant from a stranger 15 years ago]