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

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

#131

Post by kristopolous » Thu, Dec 01, 2011, 2:51 AM UTC

corin_ wrote: post #119

morrow wrote: post #113

Earlier quoted context omitted.

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...

HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.

Ah very good then. Well since the CDC now says that blacks and women are the most at-risk for HIV, we should probably change the rules with the times then, right?

What's that? It now sound horribly offensive, erroneous, and bad policy? Well sorry about that! Gotta be consistent you know.

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

#132

Post by djacobs » Thu, Dec 01, 2011, 2:54 AM UTC

corin_ wrote: post #119

morrow wrote: post #113

Earlier quoted context omitted.

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...

HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.

This is correct. Why isn't the question "Have you had unprotected sex in the last 3 months? Can we give you a blood test today?"

This seems a lot more sane than "There's this group that we used to consider high risk for HIV. We're not willing to scientifically test for it. Are you a part of this group?"

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

#133

Post by corin_ » Thu, Dec 01, 2011, 2:59 AM UTC

kristopolous wrote: post #131

corin_ wrote: post #119

Earlier quoted context omitted.

HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.

Ah very good then. Well since the CDC now says that blacks and women are the most at-risk for HIV, we should probably change the rules with the times then, right? What's that? It now sound horribly offensive, erroneous, and bad policy? Well sorry about that! Gotta be consistent you know.

You're wrong on the facts part, as of this month the CDC still states "men who have sex with men (MSM) of all races and ethnicities remain the population most severely affected by HIV", with their estimated stats being that 2% of the US population are MSM, and they accounted for 61% of new HIV infections in 2009. MSM accounted for 49% of HIV infections in 2008. (Those years are most recent available data.) For more details check out their PDF at http://www.cdc.gov/hiv/resources/factsheets/PDF/us.pdf

(I'm not black or a woman, but am gay - for my own selfish sake I'd love what you said to be true.)

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

#134

Post by corin_ » Thu, Dec 01, 2011, 3:05 AM UTC

djacobs wrote: post #132

corin_ wrote: post #119

Earlier quoted context omitted.

HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.

This is correct. Why isn't the question "Have you had unprotected sex in the last 3 months? Can we give you a blood test today?" This seems a lot more sane than "There's this group that we used to consider high risk for HIV. We're not willing to scientifically test for it. Are you a part of this group?"

They would do the test on your blood regardless (they do it on all blood).

Regarding the 3 months: the UK only just changed it from a lifetime ban for MSM to 12 months - they feel that 12 is safer, many people have argued that this is still over the top. I'm not a doctor, and I'm not well enough informed to tell you who is right on this. Countries that do have a lifetime ban certainly need their policies updated.

Regarding unprotected: the argument is that even protected sex isn't 100% safe. I don't have any stats to argue for either side here, and I don't have an opinion for that reason.

So, it's not entirely a case of "we can't be bothered to test", but at the same time many countries have out of date policies. And even those, like the UK, with better ones, there are still some people who argue they are too strict against MSM, and others who argue that any less strict would be too dangerous.

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

#135

Post by dantheman » Thu, Dec 01, 2011, 3:08 AM UTC

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 think that even at a certain point the risk of AIDS (I assume this is the reason) is better than death; so they should let in everyone letting both parties know the risks and say, we can wait longer or you can take this chance.

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

#136

Post by corin_ » Thu, Dec 01, 2011, 3:09 AM UTC

caryme wrote: post #121

artursapek wrote: post #112

Earlier quoted context omitted.

How do they enforce this?

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 to prevent them from helping others.

Here's the problem with just saying "are you clean?" You could be in a long-term committed monogamous man-man relationship, and therefore believe you are completely safe. However, the fact that you trust your partner not to cheat on you does not mean that health authorities can trust him not to have cheated on you. So even if the person being asked is completely telling the truth, they might be wrong.

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

#137

Post by corin_ » Thu, Dec 01, 2011, 3:13 AM UTC

dantheman wrote: post #135

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 think that even at a certain point the risk of AIDS (I assume this is the reason) is better than death; so they should let in everyone letting both parties know the risks and say, we can wait longer or you can take this chance.

I'm no doctor/expert so the following is questioning not answering: is there any way to know an exact cutoff, i.e. "if we don't do it this second all is lost". I would assume not.

If my assumption is correct, then would you rather take a possibly HIV-infected donation now, that, if it turns out to be clean, gives you x% chance of living, or wait and see if a little more time brings you a donation that is definitely clean, even if the waiting gives you y% chance of living (where y is lower than x). Without knowing what x and y are, and without knowing the probability that the possibly-infected donation is infected, and without knowing how long you might have to wait to get a definitely clean donation... how do you make the call.

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

#138

Post by kevinelliott » Thu, Dec 01, 2011, 3:13 AM UTC

morrow wrote: post #104

kevinelliott wrote: post #84

Earlier quoted context omitted.

Yep, this is exactly where my guilt comes in. What am I doing to help any of those millions of starving children? Very little. So many people have told me throughout my life that I need to just ignore it, and you can't save the world. I can't help but think that's just their way of trying to invalidate any guilt of their own, even if they're right that it's not possible to help everyone everywhere. Though that's why…

"What am I doing to help any of those millions of starving children? Very little." Feeling guilty isn't solving the problem, however. Guilt is just a pre-cursor to either resolve or apathy. If you don't do anything about it, you either get into a loop of guilt-> apathy-> guilt or you choose to ignore the problem (as you say your friends do). Any action you take towards true progress for those in need, no matter how s…

That's true. In my case, the emotion gives me an opportunity to reflect and determine a course of action.

My original intention for discussing my guilt was that I know it's a common feeling, and I wonder why so many people take action/interest for high profile cases. It's likely the overwhelming sense of apathy towards "saving the world" that people zoom in on particular people that they're familiar with.

But I still can't help feeling guilty for trying to help someone I know, versus a very needy person I don't. I'm not sure I'll ever be able to not feel this way. Ignoring the emotion only seems to bury it, only for it to resurface in the future (similar to your guilt->apathy->guilt cycle). One thing is sure though, even after I help someone, I still feel the sense of guilt and frustration that pairs knowing the rest of the world is still in need.

Like you said, any progress, no matter how small, is good!

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

#139

Post by morrow » Thu, Dec 01, 2011, 3:14 AM UTC

corin_ wrote: post #119

morrow wrote: post #113

Earlier quoted context omitted.

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...

HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.

Well the STD test was only going to be able to rule-out donors who are positive at the time of sign-up anyhow. After submitting to the test and giving their sample, everyone becomes potentially infected until you test them again.

I suppose the idea is not to waste time and resources on ineligible donors, and it seems as though they've made the decision that profiling based on sexual orientation is the best balance between wasting time and resources tracking patients who are ineligible or will likely become ineligible and missing out on potential matches.

I just can't believe that an inclusive and scientific approach - don't profile, test at sign-up, test again at match - wouldn't yield more matches (and more positive goodwill, obviously). Then again I haven't seen the data...

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

#140

Post by daenz » Thu, Dec 01, 2011, 3:15 AM UTC

ataggart wrote: post #54

daenz wrote: post #32

Earlier quoted context omitted.

> But Amit could pay some criminal organization for that service right now If he could, why hasn't he then? In the link you pasted, why did so many people die awaiting transplants if was able to be obtained illegally right now? Surely they didn't want to die. I'm not sure I want to live in a world where the economically oppressed are pressured financially to give up body parts to the wealthy in order to survive. Just…

>If he could, why hasn't he then? I would suspect that he has some moral compunction against kidnapping people and killing them for their body parts. Regardless, you now seem to be implying the opposite claim from earlier. Is it that no longer prohibiting voluntary sales of organs (e.g., bone marrow) would result in an increase in such abductions/killings, or is it that such killings don't seem to happen despite the…

> Regardless, you now seem to be implying the opposite claim from earlier. Is it that no longer prohibiting voluntary sales of organs (e.g., bone marrow) would result in an increase in such abductions/killings, or is it that such killings don't seem to happen despite the prohibition?

I'm sure they happen, because there is a black market. But I think they would happen a great deal more when the market is bigger and more legitimate (legitimate from the POV of the purchaser).

> Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?

It's more morally preferable if only those who sold their organs didn't need the money (ie, they are doing it from the goodness of their hearts, not because they were screwed by some societal systems and are down on their luck), but less morally preferable if you actually had to enforce it (which would require selectively enforcing a law based on your perception of someone's intentions).

As I think about it more though, I'm leaning more towards: Let them sell their body parts, it's their body, their choice. Even if it leads to more crime, prosecute the crime, but let people have their personal freedom.

Not that it matters anyways, science will sort this out one day. Ideally we'll be growing our replacements organs in a lab, from our own cells.