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

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

#61

Post by sliverstorm »

ck2 wrote: post #26
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).

At least in the US, look on the bright side- the odds of anyone needing your marrow are low, so there would be no sense in a systematic harvesting of marrow prison-wide every month. Inmates already work in labor gangs. So, if you are a prisoner and you get selected, strike a deal and get out of labor gangs for a month (because you just earned as much as if you had been in a labor gang). It'd be a good thing to get picked!

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

#62

Post by dlikhten »

prakashk wrote: post #60
dlikhten wrote: post #43

Question: What about risks to the donor? Does this stuff regenerate? Are the risks basically same as getting a bit of tissue harvested?

From DONOR FAQ ( http://www.samarinfo.org/donorfaq.asp ) by South Asian Marrow Association of Recruiters: Marrow donation: Marrow is removed from the bones on one or both sides of the upper hip area using a special syringe. The procedure is performed by an approved collection center, usually under general anesthesia. The entire donation process lasts about one hour. The donor usually spends a night in the hospital fo…

Thanks, I just may consider signing up then.

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

#63

Post by RealGeek »

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…

Organ transplant is a for-profit industry in India. Blood, bone marrow, kidneys; everything is bought and sold. There are no waiting lists, doctors sell it to the highest bidder.

Indian doctors engage in organs trading, nice doctors would hook you up with a poor and offer to buy his organs. Evil ones will abduct poor laborers, take out both of their kidneys & other organs, and dump their dead body.

There have been thousands of criminal instances of such horrific incidents and millions of organs traded illegally.

You can read some stories at following links:

http://www.washingtonpost.com/wp-dyn/content/article/2008/01...

http://www.time.com/time/world/article/0,8599,1709006,00.htm...

http://articles.timesofindia.indiatimes.com/2003-02-02/india...

http://www.indianexpress.com/oldStory/16890/

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

#64

Post by r4vik »

nquinlan wrote: post #22
tibbon wrote: post #13

Earlier quoted context omitted.

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.

I mean just get them to sign it away with a disclaimer that says 'i release this data under a creative commons licence' and host it somewhere that HIPAA doesn't apply

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

#66

Post by Zolomon »

davidu wrote: post #10

Fuck Cancer. ^ | | | | [Edit: Anyone who has gone through it, or has had loved ones deal with it knows what I'm talking about.]

I'm a survivor of acute lymphoblastic leukemia and I really hope Amir, and everyone else who's got to put up with it, will join the club.

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

#67

Post by aristus »

mikeryan wrote: post #42

Just a note, even if you're not South Asian and able to help Amit, thousands of people are diagnosed with Leukemia and other diseases which may require a marrow transplant. Take the test he linked to, it may help save a life. http://www.marrow.org/Join/Join_Now/Join_Now.aspx

Even better, go donate blood and sign up for the marrow program there. Whole blood is always in demand.

I donated marrow a few months ago. I had been on the list for fourteen, fifteen years before I came up as a match. Can't say it was a lot of fun. But it was worth it.

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

#68

Post by angelbob »

sliverstorm wrote: post #61
ck2 wrote: post #26

Earlier quoted context omitted.

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).

At least in the US, look on the bright side- the odds of anyone needing your marrow are low, so there would be no sense in a systematic harvesting of marrow prison-wide every month. Inmates already work in labor gangs. So, if you are a prisoner and you get selected, strike a deal and get out of labor gangs for a month (because you just earned as much as if you had been in a labor gang). It'd be a good thing to get pi…

Maybe. Bone marrow donation is debilitating and really painful. I suspect not everybody would want to duck out on labor gang for it.

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

#69

Post by ericabiz »

Damn. I really hoped I could help. Unfortunately, those with autoimmune diseases can't donate bone marrow.

I do sincerely appreciate this being brought to light here, however. This post can literally save thousands of lives...if we take action.

All the best to Amit. My thoughts and prayers are with him.

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