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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.

#141

Post by corin_ »

morrow wrote: post #139
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.

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 be…

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.

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

#142

Post by kevinelliott »

adaml_623 wrote: post #98
kevinelliott wrote: post #43

Earlier quoted context omitted.

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 thousan…

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.

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.

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

#143

Post by corin_ »

tshtf wrote: post #124
rms wrote: post #122

Earlier quoted context omitted.

You could just check "no" on the box if you did really want to donate.

Kevin, How do you feel about lying?

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 would confirm that, as long as I am telling the truth about this situation, I am definitely clean. And yet I would still be banned from donation. Do you really think that, in that scenario, it would be wrong to lie if I could specifically save somebody's life?

A lifetime ban is quite clearly over the top and not neccesary - hell, even with the UK's new 12 month waiting period after MSM activities for donating blood, there is scope for someone to have gone far past the window of "I might have HIV from that person and it isnt showing up yet", without having reached the 12 months required by policy.

I absolutely would not endorse lying in this situation, apart from anything it is possible to be 100% confident that you are safe and clean, and be mistaken. But in a certain scenario, I would be willing to lie personally.

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

#144

Post by kevinelliott »

adaml_623 wrote: post #98
kevinelliott wrote: post #43

Earlier quoted context omitted.

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 thousan…

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.

And my point about annoying other people was that I certainly could not beg my friends to help a different person every single day. It's not sustainable. I know for certain that every one of my friends would block my emails, social network updates, and phone calls.

I could ask them once, twice, maybe even ten times over the course of a year. But beyond that, it begins to mirror harassment. It's just not sustainable for one person to broadcast that many repetitive messages.

Though, I sure wish I could make the same efforts to tell people about each individual of the thousand other people in need, as I have about Amit.

It's unfortunately, just not realistic :|

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

#145

Post by colanderman »

watmough wrote: post #115
corin_ wrote: post #88

Earlier quoted context omitted.

Some progress has been made, in the UK now the (blood) ban only effects men who've had sex with men in the past 12 months, which is better.

Interesting, as a former, non-gay, UK resident, I'm not allowed to give blood in the US, even though I was allowed to obtain a green-card, and screened for HIV by a US doctor in London. I believed at the time this was due to the UK CJD scare. Can anyone confirm? My gf at the time, also reported being denied the opportunity to give blood, after declaring on the form that she was in a relationship with a UK national.

I think you're right. I remember giving blood not too long after the CJD/mad cow scare, and the "have you been to the UK in the past 6 months" question surrounded by questions about eating beef from various countries.

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

#146

Post by cdh »

burgerbrain wrote: post #61
cpher wrote: post #45

Earlier quoted context omitted.

Also, every time I buy something at a store, I have to give them my addresses. I hope you're kidding...

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.

RadioShack only asks for your zip code. It pops up and asks when ringing something up. They can just hit escape if you don't want to tell them.

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

#147

Post by eridius »

zasz wrote: post #35
freemarketteddy wrote: post #9

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…

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…

If 23andMe loses money on kits, where are they making their money?

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

#148

Post by there »

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.

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

#149

Post by blahedo »

rdl wrote: post #86
blahedo wrote: post #67

Earlier quoted context omitted.

> Do you really want the donation pool potentially contaminated by the HIV virus? This is FUD. Gender of partner as an HIV risk factor is now much less predictive than a number of other risk factors that they do not check for; it is especially insulting to monogamous couples whose HIV risk is negligible. (The Red Cross is especially odious in this regard, as they are still asking this question not as "in the past 5 y…

If the goal is to reduce the risk of HIV (due to imperfect testing), if they're willing to ask offensive questions and discriminate, at least for blood, it is probably statistically valid to filter based on income/credit score, race, and zip code. I can only imagine how much uproar this would cause.

The question itself is not offensive, and the idea of the filtering is perfectly valid. The problem arises in that the level of risk being filtered by "sex with another man, ever" or even "sex with another man, last five years" is much less than other risk factors that are more common but not screened---but the presence of the question (and absence of others) has the effect of spreading FUD about the risk factors, and thus has the effect of spreading and reinforcing homophobia even if we generously assume that homophobia is not the reason for the rule in the first place.

Reducing the time limit and/or adding other factors to the screening would remove the objections of (most of) the people that complain about this rule.

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

#150

Post by marknutter »

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.

And yet, here we are.
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