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Amit Gupta hasn't found a marrow transplant match; today's your last chance.

amitguptaneedsyou.com

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Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#161

Post by rms »

darrellsilver wrote: post #158
corin_ wrote: post #143

Earlier quoted context omitted.

I (not Kevin) feel no moral objection to lying for a good cause. If I absolutely know that I am safe, but the policy does not allow me to donate, then I would have no problem lying to save a life. If I (and this is taking extra-wide margins) have not had any sexual contact in the past 12 months (or anything else that leads to something like HIV, such as needle use), and have always tested positive, then any doctor wo…

When I asked friends to donate for Amit, I had a hard time asking them to lie when donating. This is the limit of "lying for a good cause", especially when the person doesn't know Amit.

A lot of people have this in-built sense that lying must be illegal and it mostly just isn't except in very specific circumstances. This is a clear cut example of lying for a good cause. I do empathize with the refusal of a lot of gay people to subjugate themselves for the sake of a broken system.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#162

Post by pyre »

corin_ wrote: post #136
caryme wrote: post #121

Earlier quoted context omitted.

At least in the blood ban in the US, the only enforcement is the honesty policy. The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank. I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.

I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?) Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy t…

I think you're missing out on the term 'in the closet.'

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#163

Post by rdouble »

corin_ wrote: post #136
caryme wrote: post #121

Earlier quoted context omitted.

At least in the blood ban in the US, the only enforcement is the honesty policy. The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank. I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.

I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?) Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy t…

You can get paid for donating plasma.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#164

Post by jcr »

there wrote: post #148
jcr wrote: post #5

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…

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.

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/

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#165

Post by corin_ »

chc wrote: post #159
corin_ wrote: post #136

Earlier quoted context omitted.

I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?) Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy t…

You can't think of any reason somebody might lie about being gay if they aren't paid money to do so?

If I were in the closet then, on discovering the MSM issue with donating blood, I would (assuming I had peaked far another out of the closet to have a MSM encounter) not donate blood, I wouldn't think "well I was going to, and I don't want people to think I'm gay so I'd better go through with it".

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#166

Post by cyrus_ »

morrow wrote: post #153
corin_ wrote: post #141

Earlier quoted context omitted.

Because testing can show the blood to be clean even for someone who does have HIV, and blood/marrow aren't (I believe / assume) things you can just stick in a fridge for a couple of years and then test again.

From wikipedia: "The vast majority of people (97%) have detectable antibodies by three months after HIV infection; a six-month window is extremely rare with modern antibody testing." So if the transfer can work with a 3 month delay (I'm not sure if it can, just assuming), and the HIV test comes back clean, you're going to have a 97% chance of a true-negative, 3% chance of false-negative. At that point, comparing it t…

It isn't a 3% chance of a false negative, the 97% figure is conditioned on actually having HIV. The actual chance of a false negative is far lower, since most people don't have HIV at all.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#167

Post by knieveltech »

morrow wrote: post #156
mistermann wrote: post #151

Earlier quoted context omitted.

Good point. Very few people seem to be aware of the actual statistics on this subject, and not terribly interested in debating it further once once someone links to actual data which is quite frankly unequivocal. A bit ironic considering how self proclaimed enlightened people tend to look down their nose at the "uninformed" masses who think HIV is a "gay disease". I have no issue with gay people at all, and on an abs…

I'm also aware of the statistics - roughly split between gays and heterosexuals. I think the problem lies more with the epistemological side of things. As the marrow registry, how do you know whether or not someone is gay? How do you know whether someone is HIV positive? Only one of these questions actually matters for donors, and only one of them is scientifically testable. I'd agree with people who are okay with pr…

To hell with screening, if I was on death's door courtesy of leukemia I'd rather accept a transplant from someone I know is HIV positive. My logic: given the state of anti-retrovirals, being HIV positive sounds downright cushy compared to dying of leukemia.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#168

Post by zipdog »

morrow wrote: post #113
nostromo wrote: post #78

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.

I'm not sure why they wouldn't allow some form of in-person registration accompanied by an STD screen at a clinic for people who they are eliminating now for being too "high-risk"? The marrow guys could even cover the cost of the STD screen for people who register for the program. Seems to me this would be an even safer way of ensuring potential donors don't have HIV than just asking them about their sex lives...

I suspect legal reasons and the US's sue-happy culture are important factors. A scientific screening test puts the onus on the collection agency, so even 99.9% accuracy still risks a recipient getting infected and suing. Asking someone to sign a legal document about their sex life puts the onus on the donor, if they happen to be lying.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#169

Post by zipdog »

morrow wrote: post #113
nostromo wrote: post #78

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.

I'm not sure why they wouldn't allow some form of in-person registration accompanied by an STD screen at a clinic for people who they are eliminating now for being too "high-risk"? The marrow guys could even cover the cost of the STD screen for people who register for the program. Seems to me this would be an even safer way of ensuring potential donors don't have HIV than just asking them about their sex lives...

I suspect legal reasons and the US's sue-happy culture are important factors. A scientific screening test puts the onus on the collection agency, so even 99.9% accuracy still risks a recipient getting infected and suing. Asking someone to sign a legal document about their sex life puts the onus on the donor, if they happen to be lying.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#170

Post by mekoka »

AJ007 wrote: post #118
mekoka wrote: post #71

Earlier quoted context omitted.

I would strongly suggest that they have the courtesy of stating their intention when asking for all that information. It's not difficult. People are showing up to help and are then subjected to what seems like an interrogation. Even the most helpful soul would raise her eyebrows a few times. I'm not saying that the information is irrelevant, but each question is there for a reason, why not just state what it is? You…

At risk of sounding like an asshole, donating your bone marrow is a pretty damn big deal. What use is a bone marrow "lead" if the person runs the other direction when asked for their SSN.

People generally go in, not really believing that they will match. They think it only happens to others. Their attitude usually changes when this abstract possibility becomes a tangible reality.

Before taking the test: "Ah! I probably won't even be a match. Why bother?" After being matched: "Shit! Is this for real? A life now depends on ME?"

There's a similar phenomenon when a competitor starts winning and the possibility of him actually becoming champion materializes. Believers come out of the woodwork.

That's why the goal isn't to convince them to give bone marrow, but rather to just see if they match first.

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