Amit Gupta hasn't found a marrow transplant match; today's your last chance.(amitguptaneedsyou.com)
amitguptaneedsyou.com
Amit Gupta hasn't found a marrow transplant match; today's your last chance.
http://www.amitguptaneedsyou.com
246 comments
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.
All Europeans are also banned from giving blood for forever. I'm a very recent transplant to the US from Denmark. I was a regular blood donor in Denmark and checked up on the US regulations before moving here. Even wrote the local blood bank because I didn't believe that the "if you've lived more than 5 years in Europe, you can't give blood ever" was for real. Sadly, the rule is very much real.
The blood bank was also annoyed but there's nothing they can do. I'd write my representative, but as a non-citizen I don't have one.
The blood bank was also annoyed but there's nothing they can do. I'd write my representative, but as a non-citizen I don't have one.
Well, as a European I'm Offended.
But seriously what's the motivation behind this?
But seriously what's the motivation behind this?
BSE/Mad Cow fears. Because of the BSE outbreak in the UK in the 80s (and the various smaller outbreaks later) the US authorities were scared shitless at some point. So if you've lived 5 or more years in Europe you're banned from donating blood forever.
Not sure I understand the logic... Quarantine for a set period I can understand, but banning for life makes little sense. After all there are many blood donors in all European countries and we don't all end up with mad cow disease when we receive blood transplants.
For comparison: After having lived in the US you are banned from giving blood in Denmark for 1 _month_
Not sure I understand the logic... Quarantine for a set period I can understand, but banning for life makes little sense. After all there are many blood donors in all European countries and we don't all end up with mad cow disease when we receive blood transplants.
For comparison: After having lived in the US you are banned from giving blood in Denmark for 1 _month_
There is actually logic behind this.
BSE is caused by misfolded proteins called prions[1] which also causes Creutzfeldt–Jakob disease[2] (CJD) in humans. One form of CJD is Kuru[3] which inflicts the Fore tribe of Papua New Guinea and is likely transmitted through cannibalism interestingly enough.
There isn't a great depth of understanding of these diseases yet but in the case of Kuru the asymptomatic period has been demonstrated to be somewhere in between several years and several decades[4].
There are no screening tests for prion diseases[5] so the only way to be sure is to not take blood from risk groups.
[1] http://en.wikipedia.org/wiki/Prion
[2] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
[3] http://en.wikipedia.org/wiki/Kuru_(disease)
[4] http://en.wikipedia.org/wiki/Kuru_(disease)#Presentation
[5] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
BSE is caused by misfolded proteins called prions[1] which also causes Creutzfeldt–Jakob disease[2] (CJD) in humans. One form of CJD is Kuru[3] which inflicts the Fore tribe of Papua New Guinea and is likely transmitted through cannibalism interestingly enough.
There isn't a great depth of understanding of these diseases yet but in the case of Kuru the asymptomatic period has been demonstrated to be somewhere in between several years and several decades[4].
There are no screening tests for prion diseases[5] so the only way to be sure is to not take blood from risk groups.
[1] http://en.wikipedia.org/wiki/Prion
[2] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
[3] http://en.wikipedia.org/wiki/Kuru_(disease)
[4] http://en.wikipedia.org/wiki/Kuru_(disease)#Presentation
[5] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
What's the connection between cannibals in New Guinea and European blood/marrow donors?
Not sure how I can make it clearer but I will try.
Because Europeans have an increased risk* of having the prion disease BSE they aren't ever allowed to donate. The reasons for this are a similar prion disease in New Guinea has been shown to have a very long asymptomatic period measured in decades. And since there is no screening for prions and no one is sure how long prion diseases remain asymptomatic all Europeans are not allowed to give blood/marrow/organs.
* How much so is of course debatable.
Because Europeans have an increased risk* of having the prion disease BSE they aren't ever allowed to donate. The reasons for this are a similar prion disease in New Guinea has been shown to have a very long asymptomatic period measured in decades. And since there is no screening for prions and no one is sure how long prion diseases remain asymptomatic all Europeans are not allowed to give blood/marrow/organs.
* How much so is of course debatable.
Funny thing here. The probability of Prion Disease is very small. VERY small. Statistically speaking, the barring of blood donation costs us significantly more lives than the contamination possibility. Yes its unfortunate some people will develop prion disease, but... you get it.
I guess I woke up on the wrong side of the rabbit hole. When I went to bed, Papua New Guinea was about nine thousand miles from Brussels.
In Switzerland, you're banned if you stayed in the UK for longer than a few weeks, during the BSE years. That seems to make a bit more sense.
I was born in the UK and was a teenager during the mad cow / CJD years.
I've lived in Australia for 14 years and I'm still not allowed to give blood here. I doubt I ever will.
But it never occurred to me that organ donation is affected in the same way.
EDIT: Be sure to read http://en.wikipedia.org/wiki/Creutzfeldt-Jakob_Disease#Epide...
I've lived in Australia for 14 years and I'm still not allowed to give blood here. I doubt I ever will.
But it never occurred to me that organ donation is affected in the same way.
EDIT: Be sure to read http://en.wikipedia.org/wiki/Creutzfeldt-Jakob_Disease#Epide...
It's not like prions are contagious. If I wasn't in the UK for those years, and was protected from any additional risk by fairly sensible quarantine policies… I am just as safe as the next donor. It sounds like the US is depriving itself from a large pool of donors due to a blanket dismissal of public policy in other countries.
This even applies within Europe, for example most British people can't donate blood in Spain.
[deleted]
Get tested for a match anyway - if you match you can always say you didn't read the papers very carefully and that as gay person you can't donate.
Then when he dies we have somebody to point to and say "this person could have been saved, but for your bigotry".
Then when he dies we have somebody to point to and say "this person could have been saved, but for your bigotry".
You think the FDA / NMDP are making medical policy based on bigotry and not on statistical analysis of pathogen distribution?
FWIW surely the measure is whether you're in a risk group for transmission of disease, like being European (wrt CJD).
Also it would be "since I have homosexual sex". It's not your proclivity that's being challenged it's actions which are known to put one at greater risk of carrying certain pathogens that are detrimental to a donee.
Of course it could go down differently to how you say: He lies, the person gets a temporary reprieve and then dies from some other pathogen that the donor wasn't aware that they have but that the medics were trying to account for by ruling out those having homosexual sex.
FWIW surely the measure is whether you're in a risk group for transmission of disease, like being European (wrt CJD).
Also it would be "since I have homosexual sex". It's not your proclivity that's being challenged it's actions which are known to put one at greater risk of carrying certain pathogens that are detrimental to a donee.
Of course it could go down differently to how you say: He lies, the person gets a temporary reprieve and then dies from some other pathogen that the donor wasn't aware that they have but that the medics were trying to account for by ruling out those having homosexual sex.
Also, the rule may have been fixed by the time the match comes up.
Not really bigotry, it's about risk reduction.
Remember it wasn't that long ago that hundreds (thousands?) of people got AIDS from donated blood and plasma.
It's all a trade off. You trade access to the bone marrow of a certain population for an overall lower risk of disease transmission.
It's no different than the fact that if you've traveled to a malaria zone in the past year that you can't donate blood.
Remember it wasn't that long ago that hundreds (thousands?) of people got AIDS from donated blood and plasma.
It's all a trade off. You trade access to the bone marrow of a certain population for an overall lower risk of disease transmission.
It's no different than the fact that if you've traveled to a malaria zone in the past year that you can't donate blood.
Morbid way of proving a point, don't you think?
If there was a better way, I would take it.
But often people don't react until you can point to somebody and say "because of direct consequences of this policy, this person is no longer alive". It is even better if you can show his family crying.
Personally I would prefer getting them to fix it without getting anybody killed.
But that may be too much to ask.
But often people don't react until you can point to somebody and say "because of direct consequences of this policy, this person is no longer alive". It is even better if you can show his family crying.
Personally I would prefer getting them to fix it without getting anybody killed.
But that may be too much to ask.
Yes you save more people in the short term but the risk for disease transmission jumps up quite a lot. I'm sure that not even the doctors really like the fact of the matter but they have to accept it because they must save lives and not take them away for short term benefit.
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...
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...
At least in the case of blood, all donations are already screened anyway. In US, the American Red Cross has actively fought the blood ban claiming it is "medically and scientifically unwarranted." John Kerry has also led opposition to it in the Senate (unsuccessfully).
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?"
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.
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.
The policy still doesn't add up. They really should just ask anyone if they've had unsafe sex outside of a monogamous and std tested relationship in 3/12 months.
I could very well have had sex with 100 women in the past 3 months (as a man) and been unsafe with all of them. Yet, they don't seem to be the least bit worried about that scenario.
I could very well have had sex with 100 women in the past 3 months (as a man) and been unsafe with all of them. Yet, they don't seem to be the least bit worried about that scenario.
While I support allowing homosexuals to donate, I don't think your comparison is fair.
Having 100 random sexual encounters with randomly sampled women leaves you approximately a 50% chance of having unprotected sex with someone who has HIV. Not to mention, HIV may not even be transmitted even if you have an encounter.
On the other hand, after 100 random homosexual MSM encounters, your chances of having had unprotected sex with someone carrying HIV is 99.99997344%.
MSM puts you at a much higher risk for HIV. That's fact.
Having 100 random sexual encounters with randomly sampled women leaves you approximately a 50% chance of having unprotected sex with someone who has HIV. Not to mention, HIV may not even be transmitted even if you have an encounter.
On the other hand, after 100 random homosexual MSM encounters, your chances of having had unprotected sex with someone carrying HIV is 99.99997344%.
MSM puts you at a much higher risk for HIV. That's fact.
Please, provide citations for your figures.
[deleted]
The standard HIV test people do (ELISA) tests for the antibodies produced against HIV, not the HIV strain itself.
Donated blood is tested with PCR, which detects the HIV RNA. PCR test detects HIV in as quick as a couple of weeks.
However, because of the added cost (and time cost) of running PCR tests, donated blood samples are pooled before being tested. If the test runs positive, samples are tested individually.
Donated blood is tested with PCR, which detects the HIV RNA. PCR test detects HIV in as quick as a couple of weeks.
However, because of the added cost (and time cost) of running PCR tests, donated blood samples are pooled before being tested. If the test runs positive, samples are tested individually.
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.
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.)
(I'm not black or a woman, but am gay - for my own selfish sake I'd love what you said to be true.)
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 absolute numbers basis, infection rates are not terribly high within that overall community. I just find it immensely interesting how people's normal thought processes (even those who are normally extremely logical and data oriented) are fundamentally altered when the subject of discussion is race, gender, sexuality, or culture.
Thanks for pointing it out.
I have no issue with gay people at all, and on an absolute numbers basis, infection rates are not terribly high within that overall community. I just find it immensely interesting how people's normal thought processes (even those who are normally extremely logical and data oriented) are fundamentally altered when the subject of discussion is race, gender, sexuality, or culture.
Thanks for pointing it out.
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 profiling if there wasn't a reliable test for HIV, or if there weren't enough resources to test for it, but I haven't found any evidence for either of those potential claims.
I'd agree with people who are okay with profiling if there wasn't a reliable test for HIV, or if there weren't enough resources to test for it, but I haven't found any evidence for either of those potential claims.
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.
I'm pretty sure you could get that operation, but not on health insurance of any kind.
yes, that's the report that went out yesterday. The context of the discussion was "at-risk" in the spirit of "have it but don't know it" or "don't know what to do about it"; not in the spirit of "have it". You can go over to the early release of the data here: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm60e1129a1.htm?s_c... ... the people that get the least counseling, don't think they are at risk, etc, are those two groups.
They are the ones that are most likely to have it and not know it or treat it and are also the ones to face the largest stigma in dealing with the issue.
That's the context; it was the time window after infection but before high confidence of the results in the mouth swab test, which is the standard method used in such circumstances (and also the cheapest).
Anyway, that is what I meant by it, and that's the report I was referring to when I said CDC. I didn't mean to say that gay people don't get it.
They are the ones that are most likely to have it and not know it or treat it and are also the ones to face the largest stigma in dealing with the issue.
That's the context; it was the time window after infection but before high confidence of the results in the mouth swab test, which is the standard method used in such circumstances (and also the cheapest).
Anyway, that is what I meant by it, and that's the report I was referring to when I said CDC. I didn't mean to say that gay people don't get it.
The prevalence rate for MSM (about 20,000 / 100,000)[1] is much higher than for black women (1,122 per 100,000)[2] or black men (2,388 per 100,000), though you are correct that all three groups have very high concentrations of HIV positive persons.
[1]http://healthland.time.com/2010/09/26/study-20-of-homosexual... [2]http://www.cdc.gov/hiv/topics/surveillance/resources/factshe...
[1]http://healthland.time.com/2010/09/26/study-20-of-homosexual... [2]http://www.cdc.gov/hiv/topics/surveillance/resources/factshe...
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...
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...
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 to the odds that the "eliglble" donor is lying about their sexual activities or is simply HIV positive and heterosexual, the ban on letting gays register seems draconian, and a scientific test-based approach seems better all around.
Especially when you consider that if no donor is found, the patient could die anyway. So if the only donor is gay, test them, and then notify the patient of the 3% chance of contracting HIV from a false-negative patient versus the 100% odds of dying from Leukemia, and see what decision they make.
http://en.wikipedia.org/wiki/HIV_test#cite_note-7
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 to the odds that the "eliglble" donor is lying about their sexual activities or is simply HIV positive and heterosexual, the ban on letting gays register seems draconian, and a scientific test-based approach seems better all around.
Especially when you consider that if no donor is found, the patient could die anyway. So if the only donor is gay, test them, and then notify the patient of the 3% chance of contracting HIV from a false-negative patient versus the 100% odds of dying from Leukemia, and see what decision they make.
http://en.wikipedia.org/wiki/HIV_test#cite_note-7
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.
Good point. You could also realistically eliminate those who know they are infected from the potential false-negative category, which would give you an initial pool of 240,000[1] potential infected who don't know they're infected. Among them there is a 3% chance of non-response within 3 months to antibody testing, for a total of 7,200 false-negative potential candidates out there among 309,000,000 total Americans. Then consider the 1 in 20,000 odds [2] of being a match, and you end up with a false-negative match rate of 0.00117 per million people (according to wolfram alpha [3]).
I probably screwed something up, but in any case you are definitely right that the false-negative odds are very low among all potential applicants. Really makes the argument against seem foolish.
1) http://www.cbsnews.com/8301-504763_162-57333212-10391704/cdc...
2) http://www.organtransplants.org/understanding/marrow/
3) http://www.wolframalpha.com/input/?i=%28%281%2F20000%29++*+%...
I probably screwed something up, but in any case you are definitely right that the false-negative odds are very low among all potential applicants. Really makes the argument against seem foolish.
1) http://www.cbsnews.com/8301-504763_162-57333212-10391704/cdc...
2) http://www.organtransplants.org/understanding/marrow/
3) http://www.wolframalpha.com/input/?i=%28%281%2F20000%29++*+%...
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.
I don't understand anything about this. In the US, straight persons can't get AIDS and gay persons can? Or, what's the point? Anyone care to explain?
It sounds like nothing but Alan Turing-style discrimination based on fairy tales to me (but I might miss a point. like that research that proved that being gay is genetic and the same gene also causes sloppy bone marrow)
It sounds like nothing but Alan Turing-style discrimination based on fairy tales to me (but I might miss a point. like that research that proved that being gay is genetic and the same gene also causes sloppy bone marrow)
I don't get it either. African-American women are one of the fastest rising HIV+ groups in the US, yet they aren't banned. Yes, anyone can transmit HIV.
The policy is ignorant and based upon the idea that all men who have sex with other men are unsafe, promiscuous, and an hiv test won't be effective as they may have had a recent exposure that is essentially untestable. Its a holdover from the 80's when people were afraid of catching the 'gay disease'.
In my view, unless there is some test for being gay (there isn't) then just go ahead and register. If you're a match, then make sure you're hiv negative and haven't had any risky behavior in the past few months and you should be good to go.
The policy is ignorant and based upon the idea that all men who have sex with other men are unsafe, promiscuous, and an hiv test won't be effective as they may have had a recent exposure that is essentially untestable. Its a holdover from the 80's when people were afraid of catching the 'gay disease'.
In my view, unless there is some test for being gay (there isn't) then just go ahead and register. If you're a match, then make sure you're hiv negative and haven't had any risky behavior in the past few months and you should be good to go.
Anyone can transmit HIV, but MSM are much more likely to have it than any other demographic subgroup. Don't let your ideology get in the way of the facts. The CDC says that 600,000 MSM are living with HIV, that's about 1 in 10 MSM. That's tragic.
I googled around for some stats, and I found this quote from a website called the Bay Area Reporter:
"According to a 2008 CDC study, one in five MSM in 21 major U.S. cities were infected with HIV, and nearly half (44 percent) were unaware of their infection. The study also found that 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic/Latino MSM and 16 percent of white MSM. Of the HIV-infected black MSM, 59 percent were unaware of their infection."
I googled around for some stats, and I found this quote from a website called the Bay Area Reporter:
"According to a 2008 CDC study, one in five MSM in 21 major U.S. cities were infected with HIV, and nearly half (44 percent) were unaware of their infection. The study also found that 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic/Latino MSM and 16 percent of white MSM. Of the HIV-infected black MSM, 59 percent were unaware of their infection."
http://en.wikipedia.org/wiki/AIDS#Prevention
This is (in part) explained in the box to the right. Then there is also the 'population statistics' differences.
Epidemiology is a strange field. Because of the difficulty of balancing specificity and sensitivity, "99.9% accurate" tests often end up meaning that even if you test positive, you have a small chance of actually being infected.
Statistics are scary, especially to policy makers. If you tell someone "homosexuals have up to a 5000% higher chance of getting AIDS from sex", that can have a pretty big effect on policy.
This is (in part) explained in the box to the right. Then there is also the 'population statistics' differences.
Epidemiology is a strange field. Because of the difficulty of balancing specificity and sensitivity, "99.9% accurate" tests often end up meaning that even if you test positive, you have a small chance of actually being infected.
Statistics are scary, especially to policy makers. If you tell someone "homosexuals have up to a 5000% higher chance of getting AIDS from sex", that can have a pretty big effect on policy.
I don't understand it either. I actually wrote a really long post asking for someone to explain this policy to me, and nobody was able to.
I won't copy-paste it, but if anyone's interested, it's here: http://bit.ly/q6624N
I won't copy-paste it, but if anyone's interested, it's here: http://bit.ly/q6624N
About half of people with AIDS got it from homosexual behavior, although I don't remember the exact statistic.
edit:
"The CDC had already revealed last year that approximately 53% of the estimated 56,300 new HIV cases in 2006 were in homosexual men, with the African American population being particularly affected."
http://www.lifesitenews.com/news/archive/ldn/2009/aug/090826...
edit:
"The CDC had already revealed last year that approximately 53% of the estimated 56,300 new HIV cases in 2006 were in homosexual men, with the African American population being particularly affected."
http://www.lifesitenews.com/news/archive/ldn/2009/aug/090826...
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 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.
I can confirm that. I lived in the UK for a short six months during that scare. Whenever I went to give blood around that time, I was asked that question, then denied. I haven't gone to give blood in a while though, so I don't know if that restriction is still in place or not.
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.
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.
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.
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".
I think you're missing out on the term 'in the closet.'
You can get paid for donating plasma.
>men who lie at the blood bank. //
Isn't the only real reason to lie because you're doing it for yourself and not really to try and help other people?
Isn't the only real reason to lie because you're doing it for yourself and not really to try and help other people?
They don't/can't.
Hi nostromo,
I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.
I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.
> The policy to not accept homosexuals as donors is created by some FDA(?) policy
The language on marrow.org is unclear on this point, so I emailed them. The person who replied clarified that while their guidelines are "based" on the FDA's blood donation guidelines, their own Donor and Patient Safety Committee [1] ultimately determines policy.
[1]: http://marrow.org/About/Who_We_Are/NMDP_Leaders/NMDP_Committ...
The language on marrow.org is unclear on this point, so I emailed them. The person who replied clarified that while their guidelines are "based" on the FDA's blood donation guidelines, their own Donor and Patient Safety Committee [1] ultimately determines policy.
[1]: http://marrow.org/About/Who_We_Are/NMDP_Leaders/NMDP_Committ...
Quick unrelated question: Could any typing done by 23andme.com be used by the marrow registry? I would think itd be awesome if a voluntary, opt-in data sharing agreement was established between the two organizations. When you login after your genotyping is done, one of the options could be "Do you wish to share your typing information to become a marrow donor?"
I don't mean to insinuate that it's a light decision to make (I recently joined the marrow registry, even though I won't be a match to Amit due to my ethnicity), but if the data already exists, why not reduce the friction to being a donor?
I don't mean to insinuate that it's a light decision to make (I recently joined the marrow registry, even though I won't be a match to Amit due to my ethnicity), but if the data already exists, why not reduce the friction to being a donor?
I already posted this below, but I see that you're affiliated with the Marrow Donor program. I'm reposting this here on the hope that you can bring this the attention of someone who can make a difference.
Beyond being somewhat homophobic, this policy is actually counterproductive. The explanation is long, but I've written it all up here: http://bit.ly/q6624N . (The second and last points, in bold, are the most relevant).
Being Indian myself, it's incredibly painful to see posts like this and know that I can't do anything to help Amit out. Because I was never allowed to take the test, we'll never know if I would have matched Amit. But just think - what if I had?
Beyond being somewhat homophobic, this policy is actually counterproductive. The explanation is long, but I've written it all up here: http://bit.ly/q6624N . (The second and last points, in bold, are the most relevant).
Being Indian myself, it's incredibly painful to see posts like this and know that I can't do anything to help Amit out. Because I was never allowed to take the test, we'll never know if I would have matched Amit. But just think - what if I had?
They did a donor drive at work some months back. My genetic disorder disqualifies me, even though I'm fairly healthy and off all medication at this point. At the moment, I don't think it would be a good idea for me to donate marrow to anyone as I am still recovering my own health, but this means that even in the future when I may well be healthy enough to be willing and (physically) able, I will still be disqualified. Not sure how to feel about it.
This is a huge problems -- been to a couple NYC amit events (thanks, New Work City!) -- and did my best to inform people. Same with donating blood.
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.
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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.
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.
You could just check "no" on the box if you did really want to donate.
Kevin,
How do you feel about lying?
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.
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.
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.
> and have always tested positive
I think you meant negative there.
I think you meant negative there.
Oops, my bad, thanks! Guess it's hard to remember the positive in this instance means bad and negative good at 4am.
I'm morally flexible here. Its a silly policy based on ignorance and fear. If someone gay knows they are safe, why should they feel bad about lying, when a straight person who hasn't been tested and has had unprotected sex recently could walk in and have no issue donating?
Also, it would seem that hiv is honestly less bad than dying of having no match for acute leukemia, but I'm not doctor can't say for sure.
Also, it would seem that hiv is honestly less bad than dying of having no match for acute leukemia, but I'm not doctor can't say for sure.
I'm still diabetic, so I'm not allowed to help either.
Epileptic here, not allowed either.
Well of course, your blood might make somebody seizure. /outdated science
Actually, it's because of the anti-epileptic medication that is in the blood. Speaking from personal experience.
Its all about you, after all.
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.
EDIT: I do know the fancy medical terms, but I don't pretend to really understand what they mean. You need a real serious medical education to understand this stuff.
EDIT: I do know the fancy medical terms, but I don't pretend to really understand what they mean. You need a real serious medical education to understand this stuff.
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/
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/
Knew the name sounded familiar - I remember reading about this guy in National Geographic or something. Amazing story.
I think the term is an ablative and/or autologous bone marrow transplant. My father had this performed to treat type ii non hodgkins lymphoma. Essentially, if there is no donor, you can draw a patient's own bone marrow, attempt to treat it so that it has no cancerous cells, culture the hopefully cleansed bone marrow, kill all the patient's bone marrow in their body via high doses of chemo and/or radiation, then reimplant the patient's own cultured and hopefully safe bone marrow. While the patient has no bone marrow they will be completely dependent on donor blood. What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her.
> What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her.
That's a description of most cancer treatments, especially the traditional ones.
Cancer cells are so similar to normal healthy tissue, they're difficult to target with high specificity. Most treatments (especially chemo and radiation) work by killing cancer cells marginally better than they kill (most) normal cells. The targeting is getting better for both classes of treatment, but the collateral damage is still significant.
Killing all bone marrow cells indiscriminately sidesteps the targeting issue, with the trade-off that you effectively remove an entire vital organ. This is just as drastic, but in this particular case happens to be a surmountable obstacle.
That's a description of most cancer treatments, especially the traditional ones.
Cancer cells are so similar to normal healthy tissue, they're difficult to target with high specificity. Most treatments (especially chemo and radiation) work by killing cancer cells marginally better than they kill (most) normal cells. The targeting is getting better for both classes of treatment, but the collateral damage is still significant.
Killing all bone marrow cells indiscriminately sidesteps the targeting issue, with the trade-off that you effectively remove an entire vital organ. This is just as drastic, but in this particular case happens to be a surmountable obstacle.
I feel absolutely helpless. I hate this situation. I don't know anyone who qualifies, and I certainly don't. The idea that Amit may not find a donor furiously irritates me. What's worse, none of my Facebook and Twitter followers have relayed the message further the several times I've posted about it.
Then there's the swab kit sign up form. Oh my, what a pain. And then the guilt sets in where I begin to think 'Why am I ignoring the thousands of other people that likely need bone marrow too?'
I can't be alone in this thinking. But what can I do next? I certainly can't sit idle and watch this guy die.
Then there's the swab kit sign up form. Oh my, what a pain. And then the guilt sets in where I begin to think 'Why am I ignoring the thousands of other people that likely need bone marrow too?'
I can't be alone in this thinking. But what can I do next? I certainly can't sit idle and watch this guy die.
You're not ignoring those people. By signing up for the registry you can be matched against anyone who needs it. Whether Amit finds a donor or not (fingers crossed) his drive to get people tested will help other South Asian leukemia patients.
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 thousands of people who are also in need. And really, even if I knew who all these other people were, my friends and family would get terribly annoyed that I would be telling them all about hundreds or thousands of other people in need.
See the problem? We care about Amit because he's high profile (and I'm glad we are trying!), but we do very little for the more 'anonymous' types. That's where my guilt comes in.
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 thousands of people who are also in need. And really, even if I knew who all these other people were, my friends and family would get terribly annoyed that I would be telling them all about hundreds or thousands of other people in need.
See the problem? We care about Amit because he's high profile (and I'm glad we are trying!), but we do very little for the more 'anonymous' types. That's where my guilt comes in.
Everything helps. Before Amit's illness blew up, I wasn't even aware that there was such a thing as a marrow registry or that it was actually pretty simple to donate compared to other organ donation programs, many of which require you to face huge risk or being dragged in a bag. Just let people know occasionally. I feel your frustration at the great masses that fall through the cracks, but if you can get just a few people to sign up for the registry, there's a good chance that one of them could someday save a life and you'd be part of that, too.
thinking along these lines, around 6 million children under five die in developing countries each year from malnutrition and hunger-related diseases.
[1] http://www.wfp.org/hunger/stats
[1] http://www.wfp.org/hunger/stats
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 I invest on Kiva, because I can help make an impact in a "starving" part of the world helping to build up economies so the people can take care of themselves, rather than solely relying on financial donations.
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 I invest on Kiva, because I can help make an impact in a "starving" part of the world helping to build up economies so the people can take care of themselves, rather than solely relying on financial donations.
No one can save the world, and no organization can save the world. People die, bad things happen and the measurable impact of any random person is zero. That's the simple facts of our existence. However, you can elevate yourself to where you have the ability to have more impact than a random person and you can direct your actions in a way that everyone you encounter is better for it (note that I say they are better for it and not that they think they are better for it). Those two things are how you have an actual impact because others follow suit, not because your individual contribution was overtly grand
"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 small, is good.
"The journey of 1,000 miles begins with a single step"
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 small, is good.
"The journey of 1,000 miles begins with a single step"
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!
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!
What am I doing to help any of those millions of starving children? Very little.
Though that's why I invest on Kiva, ...
Do you feel like you're not making enough of a difference? You're already helping more people than most people out there.
Though that's why I invest on Kiva, ...
Do you feel like you're not making enough of a difference? You're already helping more people than most people out there.
That is exactly why I ended up adopting the concept (straight out of Atlas Shrugged) that I don't own anybody else anything except if we have made a previous agreement that I do. I don't feel I have to do charity.
So no, you don't have any ethical obligation what so ever toward somebody else. Even if eating out of your garbage could save their life you would be well within your rights to decline.
But really once you stop feeling like it is your responsibility to do something for anybody, no matter how great their need or how trivial it is for you, you feel so much better -- and you can still help somebody if you want to. You just have no obligation.
So no, you don't have any ethical obligation what so ever toward somebody else. Even if eating out of your garbage could save their life you would be well within your rights to decline.
But really once you stop feeling like it is your responsibility to do something for anybody, no matter how great their need or how trivial it is for you, you feel so much better -- and you can still help somebody if you want to. You just have no obligation.
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.
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.
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.
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 :|
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 :|
I registered about a year ago, when I saw a "Ted Talk" -like presentation that inspired me to. I researched it, and the registration process is painless, and now the donation process is fairly painless too.
Just register. You may save a life. Or maybe Kharma will save yours. Who knows.
Tons of YouTube videos are inspirational - like http://www.youtube.com/watch?v=Y2Mu2Na4ajs
Just register. You may save a life. Or maybe Kharma will save yours. Who knows.
Tons of YouTube videos are inspirational - like http://www.youtube.com/watch?v=Y2Mu2Na4ajs
(Disclaimer: I am not a doctor, but was closely present during a long lasting treatment of acute myeloid leukemia with no suitable donor in sight.)
To help folks suffering from leukemia in general, join your local bone marrow registry. Transplants can vastly improve the patient's chances of survival, and the typization process you need to go through to join is painless and harmless. But, more importantly: if they find you a match, do not back down. I've heard of cases where the potential donors got scared and gave up upon receiving the phone call.
There are two types of transplants used in treatments: stem cell and bone marrow transplants.
Stem cell transplants are relatively painless -- it's not entirely unlike dialysis for one's blood. Bone marrow transplants are far less trivial, requiring general anesthesia and a couple of days in the hospital. They are are, from what I could gather, far less common and more dangerous.
Also: when / if you join, try to talk all your friends into joining as well. :)
To help folks suffering from leukemia in general, join your local bone marrow registry. Transplants can vastly improve the patient's chances of survival, and the typization process you need to go through to join is painless and harmless. But, more importantly: if they find you a match, do not back down. I've heard of cases where the potential donors got scared and gave up upon receiving the phone call.
There are two types of transplants used in treatments: stem cell and bone marrow transplants.
Stem cell transplants are relatively painless -- it's not entirely unlike dialysis for one's blood. Bone marrow transplants are far less trivial, requiring general anesthesia and a couple of days in the hospital. They are are, from what I could gather, far less common and more dangerous.
Also: when / if you join, try to talk all your friends into joining as well. :)
You can sign up and order a kit anyway. Even if you're not a match for Amit, you can take this opportunity to be a potential match for someone else. Who knows, you might save a life.
Brought back to my attention by today's GOOD article "Bone Dry: Amit Gupta and the South Asian Bone Marrow Problem"
http://www.good.is/post/amit-gupta-and-the-south-asian-bone-...
http://www.good.is/post/amit-gupta-and-the-south-asian-bone-...
In 2005, my friend Rich went to the hospital because of headaches that had been lasting for months. He was diagnosed with acute myelogenous leukemia, went through treatment, and went into remission in January of 2006. Later that year he went on to start a foundation to raise awareness about the disease and make it his mission to educate people about the urgent need for donating blood, and even more so, bone marrow.
I joined the bone marrow database and encourage everyone I know to do the same. The donor card comes with me everywhere I go. Whenever I hear about someone like Mr. Gupta, I try and think of every person possible that might not know one of two very important things:
1. Becoming a donor is not as painful as you grew up beleiving it was. 2. A single day of your discomfort could give someone the rest of their life.
Over the course of the next several years, Rich pretty much kept his immediate condition to himself except with his family and few very close friends. This did prove difficult for him since he was someone who was "notable" (a term those of us on HN would understand), but upon publication he would always see the silver lining since it helped promote his foundation.
On September eighth, 2010, Rich was only 36 years old when he passed away after suffering a stroke secondary to leukemia.
Please, do what you can. Every day, do what you can.
http://marrow.org/
I joined the bone marrow database and encourage everyone I know to do the same. The donor card comes with me everywhere I go. Whenever I hear about someone like Mr. Gupta, I try and think of every person possible that might not know one of two very important things:
1. Becoming a donor is not as painful as you grew up beleiving it was. 2. A single day of your discomfort could give someone the rest of their life.
Over the course of the next several years, Rich pretty much kept his immediate condition to himself except with his family and few very close friends. This did prove difficult for him since he was someone who was "notable" (a term those of us on HN would understand), but upon publication he would always see the silver lining since it helped promote his foundation.
On September eighth, 2010, Rich was only 36 years old when he passed away after suffering a stroke secondary to leukemia.
Please, do what you can. Every day, do what you can.
http://marrow.org/
Can someone explain what the November 30 date means? Is there another treatment route they will try if they can't find a donor? How is the cut-off date chosen?
I think it has something to do with the data not showing up in the registry for 30 days and maybe the new year coming.
Shortly after I submitted my sample, I got an email that said:
"When the processing of your kit is complete, you will officially be listed on the Be The Match Registry. This process usually takes about two months, but the time can vary depending on the number of new members joining the registry each month."
so there is definitely some lag time involved.
"When the processing of your kit is complete, you will officially be listed on the Be The Match Registry. This process usually takes about two months, but the time can vary depending on the number of new members joining the registry each month."
so there is definitely some lag time involved.
At the sake of sounding incredibly naive...Is it only South Asians that can help Amit? Being white, I would not have a potential match at all?
> Being white, I would not have a potential match at all?
You would be unlikely to, but it's not impossible. The human leukocyte antigen (HLA) tissue type Amit needs is just much, much more predominant among fellow South Asians.
You probably can't help Amit directly, but you can help someone else in a similar situation.
You would be unlikely to, but it's not impossible. The human leukocyte antigen (HLA) tissue type Amit needs is just much, much more predominant among fellow South Asians.
You probably can't help Amit directly, but you can help someone else in a similar situation.
I went through the signup process a month or two ago, but got flat-rejected at the last step (after about half an hour of reading fine print).
The issue: I had temporary hair loss in high school, due to an autoimmune disease according to a dermatologist. I was never tested for it, and figured I could still get tested, but the signup process just stopped me.
I'm in the LA area and willing to drive somewhere to get tested for a match tonight if someone can shed more light on if/how I can do it.
The issue: I had temporary hair loss in high school, due to an autoimmune disease according to a dermatologist. I was never tested for it, and figured I could still get tested, but the signup process just stopped me.
I'm in the LA area and willing to drive somewhere to get tested for a match tonight if someone can shed more light on if/how I can do it.
Here is a thought: Is there a correlation between bone marrow match and genetic closeness? If there is, it would be a good idea to specifically target people who are from the same community as Amit back in India as well as in the US.
In Indian society, marriage is often within tightly knit communities. What if we track-down people who share second names with Amit's Father and Mother (maiden second name). Would then, the probably of finding a match in such people increase?
Thoughts?
In Indian society, marriage is often within tightly knit communities. What if we track-down people who share second names with Amit's Father and Mother (maiden second name). Would then, the probably of finding a match in such people increase?
Thoughts?
Gupta is the English equivalent of Smith in India..
I am from the sub-continent. What you said is actually a good thing. There are lots of Guptas (and Vermas and Sharmas and other north-indian surnames).
In India Guptas marry other Guptas (or Sharmas or Vermas or other surnames, BUT there is marriage within the community).
This is not true for Smiths in any part of the world.
In India Guptas marry other Guptas (or Sharmas or Vermas or other surnames, BUT there is marriage within the community).
This is not true for Smiths in any part of the world.
This is not true for Smiths in any part of the world.
Sure it is. See, for example, Eleanor Roosevelt.
Sure it is. See, for example, Eleanor Roosevelt.
I'm not a gay male but refuse to be part of organizations who discriminate against them.
I know they are trying to save lives but eliminating potential matches and discrimination is not the way to do that.
I know they are trying to save lives but eliminating potential matches and discrimination is not the way to do that.
Gay male here, and while I can't speak for everyone, I think I speak for the majority of gay males when I say: please don't do this.
Our biggest concern with these policies is not that we get left out, but that others who might need our help are unable to get it. Your boycott only serves to worsen the situation, sadly.
For vocal support, thankyou, please do continue expressing your opinion (though bare in mind that this kind of discrimination is at least based in logic, allbeit sometimes incorrect logic, and in protecting people, not discrimination for the sake of itself).
Our biggest concern with these policies is not that we get left out, but that others who might need our help are unable to get it. Your boycott only serves to worsen the situation, sadly.
For vocal support, thankyou, please do continue expressing your opinion (though bare in mind that this kind of discrimination is at least based in logic, allbeit sometimes incorrect logic, and in protecting people, not discrimination for the sake of itself).
It's unfortunately not the organizations' fault. In general, they'd be thrilled to take anyone's blood after they screen it. The rule is specifically legislated.
I finally sent my kit in today, took about five minutes, plus another five to walk it to the post office. It sat on my desk for two weeks :(
I am a bit curious. How exactly is the procedure of marrow transplant carried out?
It's moderately ugly. General anaesthesia and a needle into a big bone. Lots of detail here:
http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transpl...
http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transpl...
FWIW, it might help if the site mentioned what 'South Asians' means. Not everyone is necessarily familiar with that term.
I've never heard it used here in Australia. We don't have a term for that area. I had to look it up (http://en.wikipedia.org/wiki/South_Asia).
(I've emailed them this feedback).
I've never heard it used here in Australia. We don't have a term for that area. I had to look it up (http://en.wikipedia.org/wiki/South_Asia).
(I've emailed them this feedback).
I really do wish this reminder had came sooner; I have the swab kit sitting on my desk, waiting for a free moment for me to swab and send. While I'm obviously still going to send it in, I was really hoping to help Amit. :(
It takes not more than 120 seconds to swab, stick the provided bar-codes on the 4 buds and stick the buds back into the provided casing. You then slip the case into the postage paid envelope and leave it on your outgoing mail for USPS to pick it up tomorrow.
I did this a couple of weeks ago. Just do it and be done with.
I did this a couple of weeks ago. Just do it and be done with.
I'm American, but I'd happily do one of these kits and also go through with the operation if it would save Amit's life...
...but I see no way to actually do that. Does anyone else? Where are the kits?
...but I see no way to actually do that. Does anyone else? Where are the kits?
Get started with the quick questionnaire at http://marrow.org/Join/Join_Now/Join_Now.aspx and they'll mail the kit to you within a few weeks.
Seems a little late for that, unfortunately.
There's still a lot of other people who need a matching donor.
The risk to the donor is quite low. It requires general anestesia, and so a night in the hospital. But serious complications have a probability of 1:20000 (wikipedia German). The english article gives some more differentiated figures.
The spine is not invaded, the "marrow" means technically stem cells extracted from blood, in most cases.
http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to...
I'm not a doctor.
The spine is not invaded, the "marrow" means technically stem cells extracted from blood, in most cases.
http://en.wikipedia.org/wiki/Marrow_Transplantation#Risks_to...
I'm not a doctor.
I may be a bit late, but I registered nonetheless.
I am an Indian living in the US and I registered for the marrow donor program after my wife forwarded information about Amit . I sent the swabs more than a week ago. Not sure how it works, but hopefully there will be a match.
They said it will take two weeks for me to get the kit, but it was surprisingly fast.
They said it will take two weeks for me to get the kit, but it was surprisingly fast.
I just applied, You should too.
I just registered at one of the last minute donor drives in San Francisco. The form is rather daunting, as they request your Social Security Number and your Driver's License number.
Either way, I am glad to help! - a south asian
Either way, I am glad to help! - a south asian
How difficult is it to find matches for patients? Anybody know what the odds are for the average patient in need? I ask because I registered a couple years ago but haven't ever heard anything since.
I've heard a few numbers thrown around, 1 in 20,000 comes up often, but I haven't found any reputable sources to back that up. According to the National Marrow Donor Program:
"On average, one in every 540 members of Be The Match Registry in the United States will go on to donate marrow to a patient."
http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...
I can say from personal experience that I've been a registered donor for 8 years, and only just yesterday did I receive an e-mail saying that I may be a possible match for a patient. The process going forward is fairly long with tests along the way to be certain (http://marrow.org/Registry_Members/Donation/Steps_of_Donatio...). I was told it could be up to 2 months before doctors decide if I move on to the next stage of donation. If the doctors decide I'm the best match, it could be another 6 months before the actual donation.
"On average, one in every 540 members of Be The Match Registry in the United States will go on to donate marrow to a patient."
http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...
I can say from personal experience that I've been a registered donor for 8 years, and only just yesterday did I receive an e-mail saying that I may be a possible match for a patient. The process going forward is fairly long with tests along the way to be certain (http://marrow.org/Registry_Members/Donation/Steps_of_Donatio...). I was told it could be up to 2 months before doctors decide if I move on to the next stage of donation. If the doctors decide I'm the best match, it could be another 6 months before the actual donation.
My mom is about to do stem cell transplant - her siblings are something like 1 in 20, and my brother and I are something like 1 in 100.
I sent in my kit about a week ago and I'm half Thai, so here's hoping!
I'm Russian who probably has some asian DNA(ural region/mongolian?). Can someone explain to me the likelyhood of being a compatible match?
With Amit? Low. But with somebody who needs marrow, high enough that it's worth getting the kit anyway.
Also if you're already in the registry, make sure that you're contact information is up to date.
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 sex?.. (Men only) In the past 5 years have you had sex, even once with another male?
Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit.
> SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ?
Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory
> First Contact Information ? Spouse Information ? Second Contact Information
Grrr....what the fuck!
> Race Information? Not Hispanic or Latino ? Black ? Asian ?
Wtf...take my DNA and figure it out!
After a cpl other irritating forms I am finally able to get a kit sent to my address.
-My advice to Amit's friends would be to please do something to improve the signup workflow.
-Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!
>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 sex?.. (Men only) In the past 5 years have you had sex, even once with another male?
Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit.
> SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ?
Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory
> First Contact Information ? Spouse Information ? Second Contact Information
Grrr....what the fuck!
> Race Information? Not Hispanic or Latino ? Black ? Asian ?
Wtf...take my DNA and figure it out!
After a cpl other irritating forms I am finally able to get a kit sent to my address.
-My advice to Amit's friends would be to please do something to improve the signup workflow.
-Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!
- Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you.
- You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information.
- It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.
- You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information.
- It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.
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 were able to do it in a couple of lines, why can't they do the same in the form.
"Disclaimer: Some of the secondary questions in this form might seem intrusive, but we need to make sure that if you're a match we have multiple ways of finding you.
Also, the analysis is lengthy and costly, we use the additional information to filter out samples that are more likely to match our current needs, which helps to speed up this process.
We are aware of the sensitivity of the information you're providing to us and we take your privacy and your confidence to heart. For the same reasons the password you're setting to access your file should be more stringent"
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 were able to do it in a couple of lines, why can't they do the same in the form.
"Disclaimer: Some of the secondary questions in this form might seem intrusive, but we need to make sure that if you're a match we have multiple ways of finding you.
Also, the analysis is lengthy and costly, we use the additional information to filter out samples that are more likely to match our current needs, which helps to speed up this process.
We are aware of the sensitivity of the information you're providing to us and we take your privacy and your confidence to heart. For the same reasons the password you're setting to access your file should be more stringent"
For some reason, nobody complains when they have to fill out the paper equivalent of these web forms. I did, and happily indicated my race too, in a whole room full of people at my company, and nobody was complaining. I think that we're used to filling out much shorter forms on the web, so seeing a long form with a lot of fields there is disconcerting, but the quantity of information they're asking for is on par with most other paper forms I've filled out.
Also, we don't live in a world where DNA sequencing is free. Seems like common sense to fill out your race.
Also, we don't live in a world where DNA sequencing is free. Seems like common sense to fill out your race.
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.
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.
And yet, here we are.
> Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you.
None of which helps if you would have been a match but instead dropped out of their signup process.
None of which helps if you would have been a match but instead dropped out of their signup process.
And if you were too much of a lazy douche to fill out a couple extra fields, they're supposed to believe you'd go through the actual effort of becoming a donor because...?
I'm sorry, you're under the impression people who think of helping this man are under obligation to do so.
Anything that makes more successful donations less likely is bad. Asking for invasive personal information without justifying it in such a way that people are comfortable giving it is BAD.
The fact the guy you're responding to points out something on a site with enough gravitas that is an impediment to the process isn't douchey, it's being helpful. He may be literally saving lives by getting people to improve the process to get more matches.
I'm sure getting everyone to walk to a hospital and pay their own way to take a sample would be a much more convenient way for the marrow matching service to work, however, I be far fewer people would do it.
Same principle with forms that ask for scary data. Not doing so, and doing things in user friendly ways may get one or two more people the marrow they desperately need.
Anything that makes more successful donations less likely is bad. Asking for invasive personal information without justifying it in such a way that people are comfortable giving it is BAD.
The fact the guy you're responding to points out something on a site with enough gravitas that is an impediment to the process isn't douchey, it's being helpful. He may be literally saving lives by getting people to improve the process to get more matches.
I'm sure getting everyone to walk to a hospital and pay their own way to take a sample would be a much more convenient way for the marrow matching service to work, however, I be far fewer people would do it.
Same principle with forms that ask for scary data. Not doing so, and doing things in user friendly ways may get one or two more people the marrow they desperately need.
[deleted]
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 help, sounds pretty reasonable.
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 help, sounds pretty reasonable.
Also, every time I buy something at a store, I have to give them my addresses.
At which point you can simply say "no, I don't want to" and they'll still settle for your money.
At which point you can simply say "no, I don't want to" and they'll still settle for your money.
Also, every time I buy something at a store, I have to give them my addresses.
I hope you're kidding...
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.
Thats when you give them the address: "123 Biteme Street" (pronounced Biteeem)... Or just tell them no
I meant an online store. I was too angry when I was typing my comment.
[deleted]
If 23andMe loses money on kits, where are they making their money?
I meant an online store.
> (Men only) In the past 5 years have you had sex, even once with another male?
That's a very, very different question from "... have you had sex, even once, with another male?" which I think is what they meant to ask.
That's a very, very different question from "... have you had sex, even once, with another male?" which I think is what they meant to ask.
The sign up process was also a huge pain for me, but I mostly got through it. But the part that bugged me the most was how strongly they were trying to get me to donate money, too. I get that it takes $100 to process the application, but this feels like unpleasant upselling. If you're asking people to donate their bone marrow, which is a pretty big deal, don't try to make them pay for it, or make them feel bad if they chose not to.
Once you're signed up online, though, the registry is pretty painless. The cheek swabs were a lot more convenient than 23andme's massively annoying spit donation.
Once you're signed up online, though, the registry is pretty painless. The cheek swabs were a lot more convenient than 23andme's massively annoying spit donation.
I really have a hard time seeing any of this stuff as out of line, particularly asking for your race. Much easier and cheaper to ask you than to figure it out themselves... if it's a privacy thing, why would you be ok with giving them your DNA, but not telling them your race?
I agree that the form is a bit long, but it didn't take me more than 5 minutes to complete. I got the swab kit a few days later, swabbing took less than a minute, and it was ready to mail. Six minutes of work to potentially save someone's life, just do it.
[deleted](6)
In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male?
In the U.S., if you donate blood you are always asked this question, so this is completely acceptable. Do you really want the donation pool potentially contaminated by the HIV virus?
In the U.S., if you donate blood you are always asked this question, so this is completely acceptable. Do you really want the donation pool potentially contaminated by the HIV virus?
> 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 years", but iirc "since 1978", which is absurd.)
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 years", but iirc "since 1978", which is absurd.)
No, this is not FUD. This is a proxy for a pattern of behavior (unprotected sex with the same sex, sharing of needles, etc). They ask you these questions as a primary filter for determining who is at risk of transferring a disease. We still don't know everything about how the disease is transferred, but we know which behavior patterns lead to it.
And regarding the 1978 date, we still don't even know how long HIV can lay dormant in humans.
And regarding the 1978 date, we still don't even know how long HIV can lay dormant in humans.
Your grand-grandparent post quite emphatically is FUD. Being MSM is positively correlated with a pattern of behaviour that elevates risk of HIV. So is being a college student. So is serial monogamy. So is being a heterosexual male. Singling out one of these while making no attempt to break down the diverse group MSM by further detailing high-risk behaviour and black-marking it with an ominous question like "Do you really want the donation pool potentially contaminated by the HIV virus?" (who does?) is very much FUD against MSM as a whole.
I'm sorry if reality offends anyone's PC sensibilities, but in the US MSM account for 49% of HIV cases[1] despite accounting for a small percentage of the population. MSM are MUCH more likely to get HIV than, say, frat boys who casually hook up with a lot of females. I'm not sure if the ban is completely justified, but there is potential reason behind it.
[1]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...
[1]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...
The statistics do not offend my sensibilities. The FUD does.
There is a long way between "up to one in five MSMs are HIV-positive" to dismissing discussion on whether all MSMs should be banned from donations for life with "Do you really want the donation pool potentially contaminated by the HIV virus?"
There is a long way between "up to one in five MSMs are HIV-positive" to dismissing discussion on whether all MSMs should be banned from donations for life with "Do you really want the donation pool potentially contaminated by the HIV virus?"
49% of HIV cases are MSM, not 49% of MSMs have HIV, don't twist it around. You are trying to make it sound much worse than it really is, when in fact it's a non-issue, thus spreading FUD. Very few MSMs have HIV.
That's what I said. Try reading my comment again.
49% of HIV cases = 580,000 cases. That's a staggeringly high infection rate in the MSM community in the United States - more than one in ten. The CDC estimates that one in five gay men have HIV in a study of 21 major cities, and that 40% of them don't know it.
49% of HIV cases = 580,000 cases. That's a staggeringly high infection rate in the MSM community in the United States - more than one in ten. The CDC estimates that one in five gay men have HIV in a study of 21 major cities, and that 40% of them don't know it.
I agree with you that the policy is wrong, but it comes from the FDA, not individual organizations:
http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...
http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...
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.
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.
>-Also I have my genome phenotyped with 23andMe.
In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/
probably they can create a "Donor finder" options easily ..
In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/
probably they can create a "Donor finder" options easily ..
Why his friends are searching match in US? Did they try his ancestral place?
> (Men only) In the past 5 years have you had sex, even once with another male?
If I was going through this process, I'd answer yes even if not true purely out of spite.
If I was going through this process, I'd answer yes even if not true purely out of spite.
If you were going to do that, then why would you even bother with the form? You would just be wasting your time and theirs.
So that when they get a number of applicants they need but won't process or match due to policies straight out of 1991, someone maybe possibly finally gets a clue.
Of course, as a white male I'm about as boring ethnically as they come, so I realize my potential for making an impact is quite low.
Of course, as a white male I'm about as boring ethnically as they come, so I realize my potential for making an impact is quite low.
What do you recommend as an alternative screening requirement?
Hmm, I think "do you have unprotected sex with people you only know casually?" might be a start.
Last time I gave blood, that was in fact one of the questions, more or less... iirc it asked about unprotected sex in general, though in a tighter time-frame.
Of course your particular wording is just opening a huge can of worms with "what does 'people you only know casually' mean?".
Of course your particular wording is just opening a huge can of worms with "what does 'people you only know casually' mean?".
I'll plug pwdhash — https://pwdhash.com/ — which will turn a password of six characters or more into a site-specific password that passes these requirements.
Why doesn't he simply offer money? If I needed to survive, I'd offer something like all my savings, plus 50% of my net salary for 10 years.
Because that is illegal. In the US, there is the National Organ Transplant Act which forbids paying for organs. In this law, bone marrow is considered an organ.
> It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.
> [...]
> The term ''human organ'' means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation.
-- http://www.livingdonorassistance.org/documents/NOTA.pdf
> It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.
> [...]
> The term ''human organ'' means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation.
-- http://www.livingdonorassistance.org/documents/NOTA.pdf
Seth Godin and others pledged money as an incentive for a donor, but revised the offer after learning that the original offer was likely illegal.
"He now promises the money to the first person who matches Gupta, regardless of whether that person goes through with the transplant: no quid pro quo."
In a separate case, there is an ongoing lawsuit attempting to overturn the ban on offering payment for marrow donation.
http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bou...
"He now promises the money to the first person who matches Gupta, regardless of whether that person goes through with the transplant: no quid pro quo."
In a separate case, there is an ongoing lawsuit attempting to overturn the ban on offering payment for marrow donation.
http://www.bloomberg.com/news/2011-10-11/web-bone-marrow-bou...
Why not go to the region of india where he's most likely to get a match, and give 10 dollars to people there for checking, and another 5000 to a match that goes through and get the surgery done in india?
Better be in jail but alive (with free health care btw.) then dead. You could do the procedure overseas.
Is it illegal for the person selling as well? It probably isn't worth going to jail for selling your marrow.
This would most likely reduce the number of people who would screen themselves. I wouldn't undergo a possibly horrible medical procedure for $100,000, but I might do it to save someone's life and feel like a good person.
For further reading, look into social norms vs. market norms, especially the example of the Israeli day care: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 (paywall)
For further reading, look into social norms vs. market norms, especially the example of the Israeli day care: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=180117 (paywall)
This can easily be solved by radio options on sign up form. Choose one from:
a)I am interested in $100,000 if I match.
b) Not in it for money but please donate $100,000 on my behalf to a charity <optional Textfield>
c)I am not in this for money. If I match, I am optimistic about your recovery so please keep the $100,000 to enjoy post recovery.
a)I am interested in $100,000 if I match.
b) Not in it for money but please donate $100,000 on my behalf to a charity <optional Textfield>
c)I am not in this for money. If I match, I am optimistic about your recovery so please keep the $100,000 to enjoy post recovery.
I'd be surprised if that were true; you could always refuse the money and feel like an even better person (or at least just as good). And then it would attract the people who do want/need the money on top of that.
That argument makes sense only in a fully logical environment. The whole body of research into market norms and social norms shows that people are not fully logical in such contexts.
[deleted]
Would it be possible for someone interested in the money to get tested and ask for money in case of a match? Although I suppose the moral pressure would be quite high if you are already tested.
I suppose it's possible to ask for every penny someone has if you're a match, since they'll obviously pay you their last dime. It's an asshole move to go after someone at their most vulnerable, though, and if it became public would likely get you justifiably ostracized from any decent community. It's also currently illegal in the US.
Of course, asking your medical costs, recuperating costs, etc. to be covered is totally reasonable.
Of course, asking your medical costs, recuperating costs, etc. to be covered is totally reasonable.
Not asking for myself, I was just wondering in response to the comment about offering money. So people who would only do it for money could opt in.
[deleted]
I believe $30,000 has been offered by various people, starting with Seth Godin offering $10,000 and a spotlight on his blog to anyone who's a match and goes through with the procedure.
As far as I know, it is illegal to sell bone marrow. This source, from February, says that the law is being appealed but I don't know if a verdict has been given: http://articles.latimes.com/2011/feb/20/local/la-me-bone-mar...
The GOOD article, which I linked to below, mentions a $30,000 prize.
Organized crime just squealed with happiness. Abduct someone -> sedate and extract bone marrow -> PROFIT
But Amit could pay some criminal organization for that service right now; the abduction itself is illegal either way.
Allowing for cash incentives would serve to reduce the quantity of unfulfilled demand from which black markets -- and the criminal organizations which supply them -- emerge.
At the very least, such incentives would mean far more people listed in donor registries, the dearth of which is the very problem Amit is running into.
http://reason.com/archives/2011/11/11/the-case-for-legal-org...
Allowing for cash incentives would serve to reduce the quantity of unfulfilled demand from which black markets -- and the criminal organizations which supply them -- emerge.
At the very least, such incentives would mean far more people listed in donor registries, the dearth of which is the very problem Amit is running into.
http://reason.com/archives/2011/11/11/the-case-for-legal-org...
> 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 my 2 cents.
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 my 2 cents.
>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 prohibition?
>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.
Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?
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 prohibition?
>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.
Would it be morally preferable to only allow people who aren't "economically oppressed" to sell their bone marrow?
> 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.
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.
Tobu's response to you pretty much sums up my opinion: http://news.ycombinator.com/item?id=3297411
Your reply to him would help me see your side better, I think.
Your reply to him would help me see your side better, I think.
Done, though I would appreciate a response to my earlier questions.
Markets only exist when some regulator sets them up and enforces the terms. Right now it would be very hard to pay for an unwilling donor and there is a high risk for everyone involved. If this were made legal, the assumption would become that every donor was willing and that they got fairly compensated for fulfilling their end of the deal. Criminals and other shady types would find this less risky and more profitable.
The current assumption is that every donor is willing. It's not clear to me how receiving payment changes anything. Your scenario would only be prevented if organ donation were banned altogether.