Saving a Life is Easy, But I Didn't(danshapiro.com)
danshapiro.com
Saving a Life is Easy, But I Didn't
http://www.danshapiro.com/blog/2011/11/saving-a-life-is-easy-but-i-didnt/
100 comments
From your second link:
PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
Speaking to the marrow.org representative, she said that these days it's about 75% PBSC (sitting in a chair watching TV), 25% outpatient surgery (which is easier now than it was 16 years ago, but still daunting).
PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
Speaking to the marrow.org representative, she said that these days it's about 75% PBSC (sitting in a chair watching TV), 25% outpatient surgery (which is easier now than it was 16 years ago, but still daunting).
Yes...you're quoting from the section to which I linked, and that's why I linked to it. I'm not trying to hide anything.
I'm also not trying to disagree that people should donate...it's just that you really do have to have a surgical procedure if you're donating marrow. Moreover, PBSC involves a five-day injection drug regimen (filgrastim) that you need to undergo before you get to sit in the chair (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...). Either way, it's a far more involved procedure than (say) donating plasma -- which is how your post made it sound.
The FAQ also says that PBSC donation is considered "investigational" (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...), though who knows what that means. I just think people should be able to read the answers so that they know what they're doing.
I'm also not trying to disagree that people should donate...it's just that you really do have to have a surgical procedure if you're donating marrow. Moreover, PBSC involves a five-day injection drug regimen (filgrastim) that you need to undergo before you get to sit in the chair (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...). Either way, it's a far more involved procedure than (say) donating plasma -- which is how your post made it sound.
The FAQ also says that PBSC donation is considered "investigational" (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...), though who knows what that means. I just think people should be able to read the answers so that they know what they're doing.
Thanks for providing the info. I think, if one really want to donate, one should read those first.
I also wonder why the databases aren't as international as it should be, so a match is against the world than just a region.
I also wonder why the databases aren't as international as it should be, so a match is against the world than just a region.
From what I've heard, the long term consequences of the "filgrastim" stuff is unknown. It's a pretty intense drugs (it's basically causing your marrow to be release into your blood stream)
Is it safe from hygienic point of view? What are the chances of catching a disease from previous donor during this procedure?
> What are the chances of catching a disease from previous donor during this procedure?
Effectively zero, as onemoreact says.
The chance of becoming infected due to unsterile conditions or opportunistic infections is higher than zero, however. This page is the best I've been able to find so far:
http://www.livingdonorsonline.org/marrow/marrow5.htm
That page says you're taking about a 1 in 370 chance of serious complications:
> life-threatening complications for all marrow donors have been rare; there were 13 reported in 4,800 [0.27%, or one in 370] analyzed marrow donations.
edit: I found a small-n study that is very positive:
edit 2: I omitted the small-n study, because I found a much bigger one:
> The experience at a single institution in harvesting marrow for allogeneic transplantation on 1,270 occasions from 1,160 normal donors is presented in detail, together with an analysis of all the donor complications... Hospitalization time was three days or less for 99% of the procedures. Six donors had life-threatening complications; three of a cardiopulmonary and two of an infectious nature, and one cerebrovascular embolic episode. Significant operative site morbidity, usually transient neuropathies, occurred in ten procedures.
http://bloodjournal.hematologylibrary.org/content/64/3/630.s...
tl;dr: marrow donation carries about a 1% chance of any complications at all, and a .5% chance of life-threatening complications.
Effectively zero, as onemoreact says.
The chance of becoming infected due to unsterile conditions or opportunistic infections is higher than zero, however. This page is the best I've been able to find so far:
http://www.livingdonorsonline.org/marrow/marrow5.htm
That page says you're taking about a 1 in 370 chance of serious complications:
> life-threatening complications for all marrow donors have been rare; there were 13 reported in 4,800 [0.27%, or one in 370] analyzed marrow donations.
edit: I found a small-n study that is very positive:
edit 2: I omitted the small-n study, because I found a much bigger one:
> The experience at a single institution in harvesting marrow for allogeneic transplantation on 1,270 occasions from 1,160 normal donors is presented in detail, together with an analysis of all the donor complications... Hospitalization time was three days or less for 99% of the procedures. Six donors had life-threatening complications; three of a cardiopulmonary and two of an infectious nature, and one cerebrovascular embolic episode. Significant operative site morbidity, usually transient neuropathies, occurred in ten procedures.
http://bloodjournal.hematologylibrary.org/content/64/3/630.s...
tl;dr: marrow donation carries about a 1% chance of any complications at all, and a .5% chance of life-threatening complications.
You have vary close to zero risk from prior donor's. Sterilization tools are incredibly effective, and for hard to sterilize things like needles they just dispose of them.
Now reviving a donating is still risky, but usually it's a choice between death and some lessor risks.
Now reviving a donating is still risky, but usually it's a choice between death and some lessor risks.
I actually am currently in the process of donation. I had been scheduled but the patient became too sick and I'm basically in a holding pattern at this point. I can confirm that the process for me involved no surgery or anesthesia and would not in the future either. It's a possibility but it's unlikely and you get to know which situation it is up front and can always opt-out at absolutely any step of the process.
>why in the world would you vote this down?
Because it's spreading misinformation that could prevent people from becoming marrow donors.
As a way of balancing this, here: http://marrow.org/Home.aspx
They'll send you a free kit. You swab your cheek, mail it back, and then you're in the registry.
Take five of your minutes and give them to somebody that needs them.
Because it's spreading misinformation that could prevent people from becoming marrow donors.
As a way of balancing this, here: http://marrow.org/Home.aspx
They'll send you a free kit. You swab your cheek, mail it back, and then you're in the registry.
Take five of your minutes and give them to somebody that needs them.
Because it's spreading misinformation that could prevent people from becoming marrow donors.
It might prevent people from becoming donors, sure, but it's not misinformation. You may think that the risks are small relative to the benefit provided, but you shouldn't pretend (or try to convince others) that there are none.
Take five of your minutes and give them to somebody that needs them.
It takes five minutes to register. It clearly takes more than that to actually donate. You're not doing anyone a service attempting to conceal this fact.
It might prevent people from becoming donors, sure, but it's not misinformation. You may think that the risks are small relative to the benefit provided, but you shouldn't pretend (or try to convince others) that there are none.
Take five of your minutes and give them to somebody that needs them.
It takes five minutes to register. It clearly takes more than that to actually donate. You're not doing anyone a service attempting to conceal this fact.
I think you're confused about a couple of things here.
1) I'm saying to take five minutes and register as a potential donor. If you're found as a match, you're not required to donate. You then get to chose if you want to donate more of your minutes.
2) You're vastly overstating the liklihood that you'd have to undergo surgery to donate bone marrow. This is typically referred to as FUD, and is generally considered a bad thing to do.
1) I'm saying to take five minutes and register as a potential donor. If you're found as a match, you're not required to donate. You then get to chose if you want to donate more of your minutes.
2) You're vastly overstating the liklihood that you'd have to undergo surgery to donate bone marrow. This is typically referred to as FUD, and is generally considered a bad thing to do.
[deleted]
It's not FUD. If you donate bone marrow, the likelihood is 100%. The likelihood of donating may be < 100%, but that's not what is being discussed.
You're right, I mis-spoke. There is a difference between donating actual marrow, and donating peripheral blood stem cells.
The latter is far more more common and isn't technically donating marrow, but can be used in place of it.
The latter is far more more common and isn't technically donating marrow, but can be used in place of it.
This inspired me to register, but once again I was thwarted by the US' arcane rule banning gay men from donating. The rule applies despite the fact that I've been monogamous for ages and am tested for everything under the sun twice a year.
A college frat boy who has had unprotected sex with a different girl every week for the past semester can give blood/marrow, but monogamous, healthy gay men can't. I don't get it.
A college frat boy who has had unprotected sex with a different girl every week for the past semester can give blood/marrow, but monogamous, healthy gay men can't. I don't get it.
It's the same reason they tested me for STDs when I got pregnant, even though I married a virgin as a virgin and we have been faithful forever. It's not about what you believe about yourself and your partner. It's about the statistics.
Someone else's life is on the line. They need to be sure.
Though I must admit, I'm surprised the policy is in place with marrow donations. With blood donations, sure, transfusions are a routine thing and your blood is highly replaceable. With marrow donations, though, someone may need your marrow or they'll die. I'd think a match, even if it carried a slight statistical chance of HIV, would be something they'd want to know about.
Someone else's life is on the line. They need to be sure.
Though I must admit, I'm surprised the policy is in place with marrow donations. With blood donations, sure, transfusions are a routine thing and your blood is highly replaceable. With marrow donations, though, someone may need your marrow or they'll die. I'd think a match, even if it carried a slight statistical chance of HIV, would be something they'd want to know about.
It's not just about statistics. For blood donations, if I had unprotected sex with a different HIV infected partner every day for a year, then stopped doing this for a year and one day, I would be eligible to donate blood.
If, however, I had sex with a man once in the last 30 years I am not eligible.
Why is it more sensible to turn away gay people then it is to turn away people who have regularly exposed themselves to HIV?
If, however, I had sex with a man once in the last 30 years I am not eligible.
Why is it more sensible to turn away gay people then it is to turn away people who have regularly exposed themselves to HIV?
It's not. Her comment makes no sense, at least to me. Anyways, I am just curious, couldn't you just lie about your sexual orientation at the time of screening? I think it's awful that you should have to, but if your desire is to save lives, why let our backwards medical establishment get in the way? At the very least you could notify them if/when a match was found, and let the recipient decide...
If someone needs a bone marrow transplant, their immune system is severely compromised (effectively eliminated). If they're given marrow from an infected donor, they'd have no way to fight off the resulting infection. It would be a death sentence.
On the other hand, many people who need a marrow transplant have some flexibility as to when they can get the donation. This is why the guidelines are so strict: the risk/reward ratio is balanced in favor of caution.
On the other hand, many people who need a marrow transplant have some flexibility as to when they can get the donation. This is why the guidelines are so strict: the risk/reward ratio is balanced in favor of caution.
> Someone else's life is on the line. They need to be sure.
I'm pretty sure if my life was on the line I'd rather get both bone marrow and HIV than neither. HIV is essentially a chronic disease nowadays in the developed world, and if there was any suspicion of HIV in the donor they could add antiretrovirals into the cocktail I'd already be taking.
It's not as if gay men are the only ones to get HIV, anyways.
I'm pretty sure if my life was on the line I'd rather get both bone marrow and HIV than neither. HIV is essentially a chronic disease nowadays in the developed world, and if there was any suspicion of HIV in the donor they could add antiretrovirals into the cocktail I'd already be taking.
It's not as if gay men are the only ones to get HIV, anyways.
It is the same shit for blood donations in Denmark. They got pretty unpopular when they asked for more donors because they feared a shortage but then turned away the gay men.
And no, it is not for health issues because they don't turn away gay women.
Of course you could register if you want to and then if called upon show up eagerly with your partner for moral support. Then flat out ask if they are going to kill their own patients just to pretend that it is still the fifties.
Of course don't do it if they can't get a donor in time.
And no, it is not for health issues because they don't turn away gay women.
Of course you could register if you want to and then if called upon show up eagerly with your partner for moral support. Then flat out ask if they are going to kill their own patients just to pretend that it is still the fifties.
Of course don't do it if they can't get a donor in time.
I've seen the math in another discussion in another forum, and it's actually sensible to turn away gay people. From their point of view the goal is to get as many blood donations as possible, while minimizing the risk of disease. They couldn't give a f*ck about anything else.
Couldn't find all the numbers I was looking for, but it turns out 61% of infections in US are through male-to-male sexual contact. This probably translates into over 60% of HIV carriers being male and gay.
Now, if I was a guy in a position to decide things, and I could reduce by more then half the risk of HIV in transfused blood by reducing the donation pool by 7-10%... I'd do it in a heartbeat.
If you have some time you could try to calculate how many more people would get HIV if gay people would donate blood. You could subtract the people who wouldn't die because of the increase blood supply. But the result would still be positive.
The point of the whole blood donation thing is not to be politically correct, but to solve a problem. Making it politically correct, in this particular case, would mean solving the problem worse, possibly significantly worse then if we just let them do their jobs.
Couldn't find all the numbers I was looking for, but it turns out 61% of infections in US are through male-to-male sexual contact. This probably translates into over 60% of HIV carriers being male and gay.
Now, if I was a guy in a position to decide things, and I could reduce by more then half the risk of HIV in transfused blood by reducing the donation pool by 7-10%... I'd do it in a heartbeat.
If you have some time you could try to calculate how many more people would get HIV if gay people would donate blood. You could subtract the people who wouldn't die because of the increase blood supply. But the result would still be positive.
The point of the whole blood donation thing is not to be politically correct, but to solve a problem. Making it politically correct, in this particular case, would mean solving the problem worse, possibly significantly worse then if we just let them do their jobs.
Actually you're both wrong and a little right.
I think you both imagine that transfusions are 1 on 1. (1 donor, 1 recipient). In this case, the numbers you present kind-of work out. And sure, a risk of HIV (or whatever) infection versus certain death is worth it in any scenario. (Especially now that HIV/AIDS is chronic and treatable rather than terminal).
Many scenarios involve heavy blood loss and require more than what is normally given by a donor in a single donation. This means drawing on the pool of available blood, so multiple donations will be used of the same type, but they won't be from the same donor.
This raises the risk of transfusing infected blood significantly which is one of the reasons that the screening for blood donation harshly excludes anyone who fits in one or more higher risk groups.
I'm a donor and where I live you can't donate blood if you've received blood (inter-species tissue exchange), lived in UK in the 90s (mad cow disease risk), were born in sub-Saharan Africa (HIV risk) and a couple of others. This includes ever having had male/male sex (very high risk group). Ever been paid for sex? Out. Ever exchanged drugs for sex? Out. The list goes on and on.
The 'in the last 12 months' items are again a form of risk management (they include new partners, tattoos, piercings, infections, illness, surgery, travel to risk countries, etc).
All blood gets tested and though false negatives are still possible, most infections are statistically close enough to 100% detectable after 6 months.
Where I live it's also illegal to sell parts of your body (which includes your blood). The idea behind that is that legalizing this would create a predatory market between people with money and those on the bottom rung of the ladder (poor, addicted, high-risk, all of the above). That's not a hard sell, but it also acts as a filter in the blood donation system. People who are most likely to sell blood are the people you don't want giving blood in the first place.
A detail in my country is that the donation forms don't ask about your sexual orientation, which is irrelevant. If you identify as homosexual (male/male or female/female) but have never had male/male sex, you're good to go.
Blood donation is a region where you're just harshly subjected to selection based on statistics which place you in one risk group or another. Discrimination doesn't factor into it.
I think you both imagine that transfusions are 1 on 1. (1 donor, 1 recipient). In this case, the numbers you present kind-of work out. And sure, a risk of HIV (or whatever) infection versus certain death is worth it in any scenario. (Especially now that HIV/AIDS is chronic and treatable rather than terminal).
Many scenarios involve heavy blood loss and require more than what is normally given by a donor in a single donation. This means drawing on the pool of available blood, so multiple donations will be used of the same type, but they won't be from the same donor.
This raises the risk of transfusing infected blood significantly which is one of the reasons that the screening for blood donation harshly excludes anyone who fits in one or more higher risk groups.
I'm a donor and where I live you can't donate blood if you've received blood (inter-species tissue exchange), lived in UK in the 90s (mad cow disease risk), were born in sub-Saharan Africa (HIV risk) and a couple of others. This includes ever having had male/male sex (very high risk group). Ever been paid for sex? Out. Ever exchanged drugs for sex? Out. The list goes on and on.
The 'in the last 12 months' items are again a form of risk management (they include new partners, tattoos, piercings, infections, illness, surgery, travel to risk countries, etc).
All blood gets tested and though false negatives are still possible, most infections are statistically close enough to 100% detectable after 6 months.
Where I live it's also illegal to sell parts of your body (which includes your blood). The idea behind that is that legalizing this would create a predatory market between people with money and those on the bottom rung of the ladder (poor, addicted, high-risk, all of the above). That's not a hard sell, but it also acts as a filter in the blood donation system. People who are most likely to sell blood are the people you don't want giving blood in the first place.
A detail in my country is that the donation forms don't ask about your sexual orientation, which is irrelevant. If you identify as homosexual (male/male or female/female) but have never had male/male sex, you're good to go.
Blood donation is a region where you're just harshly subjected to selection based on statistics which place you in one risk group or another. Discrimination doesn't factor into it.
Yes, but if one has recent test results showing that he's not infected, blindly turning him down anyway makes no sense.
Actually, it does. Recent test results aren't useful with HIV; it can remain undetectable for months.
It's a question of perspective. You might be certain enough of your and your partner's fidelity over the last year to bet a stranger's life on it. But they aren't confident enough in a stranger's assertion of marital fidelity to bet their patient's life on it.
It's a question of perspective. You might be certain enough of your and your partner's fidelity over the last year to bet a stranger's life on it. But they aren't confident enough in a stranger's assertion of marital fidelity to bet their patient's life on it.
The problem isn't with the fact that they turn down gay men. The problem is that they turn down gay men while accepting people who have regularly exposed themselves to HIV, as long as they haven't done that within the past 12 months.
In case you haven't seen it, mpk has a response[1] which brings up a point I've never seen made before:
> All blood gets tested and though false negatives are still possible, most infections are statistically close enough to 100% detectable after 6 months.
This kind makes irrelevant all the outrage over them accepting blood from donors who have had wildly unsafe sex over 12 months ago. At this point it's only a matter of risk management surrounding the possibility of recent infection. You may say that in that case, it shouldn't matter if you had a same-gender sexual encounter 30 years ago, but this really just boils down to statistics, and having a same-gender sexual encounter puts you in an entirely different statistical category than people who restrict themselves to strictly heterosexual encounters.
[1]: http://news.ycombinator.com/item?id=3240432
> All blood gets tested and though false negatives are still possible, most infections are statistically close enough to 100% detectable after 6 months.
This kind makes irrelevant all the outrage over them accepting blood from donors who have had wildly unsafe sex over 12 months ago. At this point it's only a matter of risk management surrounding the possibility of recent infection. You may say that in that case, it shouldn't matter if you had a same-gender sexual encounter 30 years ago, but this really just boils down to statistics, and having a same-gender sexual encounter puts you in an entirely different statistical category than people who restrict themselves to strictly heterosexual encounters.
[1]: http://news.ycombinator.com/item?id=3240432
Upvoted, even though you're wrong.
You seem to be saying, in essence: allowing gays to donate doubles the number of instances of transfusing HIV while only increasing the number of lives saved by 7-10% (or 20%, or 2% - it doesn't matter). But that's the wrong way to look at it. Even if 10% of all transfusions from gays resulted in an additional HIV infection (thanks to testing etc., I'd guess it'd be well below 1%), that still means that, for any given transfusion candidate, you have a 90% possibility of saving their life without transfusing HIV.
You seem to be saying, in essence: allowing gays to donate doubles the number of instances of transfusing HIV while only increasing the number of lives saved by 7-10% (or 20%, or 2% - it doesn't matter). But that's the wrong way to look at it. Even if 10% of all transfusions from gays resulted in an additional HIV infection (thanks to testing etc., I'd guess it'd be well below 1%), that still means that, for any given transfusion candidate, you have a 90% possibility of saving their life without transfusing HIV.
The problem is that the percentages are higher than that. The biggest problem is that testing won't always pick up HIV and AIDS, because these diseases can lie "dormant" for quite a while, but yet they are still in the blood (undetectable) and will cause infections somewhere down the line.
Actually, excluding 7-10% from the pool may not mean any lives lost. It will just decrease the available blood supply, which can be compensated through many other means.
Excluding certain categories is a simple and effective administrative solutions - and doesn't really make any sense to confuse it with anything else.
Excluding certain categories is a simple and effective administrative solutions - and doesn't really make any sense to confuse it with anything else.
In the United States, gay men[1] account for 49% of HIV positive people according to the CDC. Gay women do not account for at least 2% of the HIV positive population and so are excluded from the most recent CDC fact sheet[2].
So, gay men and women may be treated very differently by health officials with some valid reason.
[1]The CDC actually tracks the objective category "men who have sex with men", and not the fuzzy labels "gay" and "straight".
[2]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...
So, gay men and women may be treated very differently by health officials with some valid reason.
[1]The CDC actually tracks the objective category "men who have sex with men", and not the fuzzy labels "gay" and "straight".
[2]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...
Half the people with HIV might be gay, but half the gay people don't have HIV. The statistic you quoted is not the one we need to ascertain whether the reason for turning them down is valid or not.
Actually, it's the right one. What you want to reduce is the incidence of infected people in the donor pool.
http://www.cdc.gov/hiv/topics/surveillance/incidence.htm
CDC estimates MSM represent approximately 2% of the US
population, but accounted for more than 50% of all new
HIV infections annually from 2006 to 2009.
That's a different statistic, isn't it.
You mean we should be talking about rate of infection in a population, rather than their contribution to the raw infection numbers overall?
Yeah. I thought it was implied that we were talking about that, though. I mean, even the casual reader should be able to infer that gay men do not make up anything like half the general population. That would mean there were no straight men at all.
If we have several small populations of people with a high incidence, though, I think the raw contribution is actually the right number to talk about. Consider the following thought experiment:
I have 100 people, and 6 HIV infections. 10 of the people are gay men, and 3 of them are infected. 2 of the people are female prostitutes and both of them are infected.
The general population has a 6% infection rate. The gay men have a 50% infection rate and account for 50% of the infections. The prostitutes have a 100% infection rate and account for 33% of the infections.
The exclusion of which group improves the resulting donor pool more?
If we exclude the men, we are left with 3 infections / 90 people = 3.3%. If we exclude the prostitutes, we are left with 4 infections / 98 people = 4.1%.
Even though the prostitutes have a much higher rate of infection than the gay men, excluding the men helps the final result more because they account for more of the overall infections.
Yeah. I thought it was implied that we were talking about that, though. I mean, even the casual reader should be able to infer that gay men do not make up anything like half the general population. That would mean there were no straight men at all.
If we have several small populations of people with a high incidence, though, I think the raw contribution is actually the right number to talk about. Consider the following thought experiment:
I have 100 people, and 6 HIV infections. 10 of the people are gay men, and 3 of them are infected. 2 of the people are female prostitutes and both of them are infected.
The general population has a 6% infection rate. The gay men have a 50% infection rate and account for 50% of the infections. The prostitutes have a 100% infection rate and account for 33% of the infections.
The exclusion of which group improves the resulting donor pool more?
If we exclude the men, we are left with 3 infections / 90 people = 3.3%. If we exclude the prostitutes, we are left with 4 infections / 98 people = 4.1%.
Even though the prostitutes have a much higher rate of infection than the gay men, excluding the men helps the final result more because they account for more of the overall infections.
> You mean we should be talking about rate of infection in a population, rather than their contribution to the raw infection numbers overall?
Either is fine. "50% of HIV positive people are gay" is not. For all we know, there are only two HIV positive people, and one is gay and one straight. That's hardly a reason for excluding all gay people from donating...
Either is fine. "50% of HIV positive people are gay" is not. For all we know, there are only two HIV positive people, and one is gay and one straight. That's hardly a reason for excluding all gay people from donating...
That's true. I can't say whether or not the health bureaus' policies are justified as I am not an expert. But I can guess that it is not unreasonable that they would treat gay males and gay females differently.
There is probably some testing regime that could be implemented that would allow tissue and serum donation programs to be blind to sexual behavior.
There is probably some testing regime that could be implemented that would allow tissue and serum donation programs to be blind to sexual behavior.
Oh, definitely. I'm just saying that that statistic is irrelevant to that particular point.
tomjen3: Gay women are the lowest risk demographic when it comes to HIV contraction, so I don't take issue with their inclusion.
The problem, as I see it, is that most countries place an unreasonable bias against _all_ gay men rather than _some_ gay men. The appropriate way to handle donor screenings is to ask about sexual behavior in general, such as whether or not you are monogamous, how many partners in the past year/two years/five years, how often condoms are used, etc.
Instead, we blatantly exclude all gay men but do not exclude other high risk demographics. For example, black women are eligible despite being an extremely high risk group compared to white women (1 in 58 vs 1 in 588, respectively).
Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.
The problem, as I see it, is that most countries place an unreasonable bias against _all_ gay men rather than _some_ gay men. The appropriate way to handle donor screenings is to ask about sexual behavior in general, such as whether or not you are monogamous, how many partners in the past year/two years/five years, how often condoms are used, etc.
Instead, we blatantly exclude all gay men but do not exclude other high risk demographics. For example, black women are eligible despite being an extremely high risk group compared to white women (1 in 58 vs 1 in 588, respectively).
Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.
Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.
Which could actually make sense. If (if!) it's correct that asking about sexual history would alienate existing donors, and if (if!) it would alienate enough to compromise the blood supply, it might be "safer" to keep the current rules in place instead of trying to be somehow more objectively "fair".
Which could actually make sense. If (if!) it's correct that asking about sexual history would alienate existing donors, and if (if!) it would alienate enough to compromise the blood supply, it might be "safer" to keep the current rules in place instead of trying to be somehow more objectively "fair".
> And no, it is not for health issues because they don't turn away gay women.
Wait, doesn't that exactly refute your point? Presumably, gay men and gay women have different health profiles, whereas they have similar "moral" profiles to an up-tight conservative. I think the statement makes more sense like:
> And no, it is not for moral issues because they don't turn away gay women.
Wait, doesn't that exactly refute your point? Presumably, gay men and gay women have different health profiles, whereas they have similar "moral" profiles to an up-tight conservative. I think the statement makes more sense like:
> And no, it is not for moral issues because they don't turn away gay women.
The assumption that gay women have the same risk profile as gay men seems very weak. Almost any group of women will, on average, engage in less risky behavior than an analogous group of men.
The problem with monogamy is that you can guarantee you are, but you cannot guarantee your partner is.
At least in Europe, you're not allowed to donate blood/bone marrow if you've recently had unprotected sex. I think moonogamous gay men are allowed to donate, but not single gay men.
Nope, it's not related to monogamy at all; if you're a man who's had sex with a man (protected or otherwise) in the last year, you're ineligible. Note that this is also regardless of stated sexual identity; the category is actually 'men who have sex with men', not 'gay men'. http://en.wikipedia.org/wiki/Men_who_have_sex_with_men
In the US, the Red Cross requirements [0] prevent you from donating if you've had male-to-male sexual contact in the last 34 years (since 1977). There are several other "since 1977" criteria, including being paid for sex or living in certain parts of Africa.
[0] http://www.redcrossblood.org/donating-blood/eligibility-requ...
[0] http://www.redcrossblood.org/donating-blood/eligibility-requ...
Canada
http://www.onematch.ca/ http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n...
The first site is supposed to be more current, but isn't rendering properly for me on Firefox. On the second site, Scroll to the bottom for the button to start the process.
UK
http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan
It appears that you opt-in when you donate blood. I don't see mention of an at-home swab program.
Germany
http://www.stammzellspenderdatei.de/
https://www.dkms.de/
Others
http://marrowdrives.org/bone_marrow_donor_programs.html
(Scroll down to see the partner organizations in many countries)
http://www.onematch.ca/ http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n...
The first site is supposed to be more current, but isn't rendering properly for me on Firefox. On the second site, Scroll to the bottom for the button to start the process.
UK
http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan
It appears that you opt-in when you donate blood. I don't see mention of an at-home swab program.
Germany
http://www.stammzellspenderdatei.de/
https://www.dkms.de/
Others
http://marrowdrives.org/bone_marrow_donor_programs.html
(Scroll down to see the partner organizations in many countries)
UK at home swab program:
http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
I signed up with Anthony Nolan earlier this year and the registration procedure is really easy, fill in a form, spit in a tube, post it back (free of charge). Done.
Takes like five minutes of your life. Could save someone else's.
Takes like five minutes of your life. Could save someone else's.
Australia - http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&#...
Or sign up at the Red Cross centre when you're in there to donate blood - they'll take an extra blood sample for testing purposes.
Or sign up at the Red Cross centre when you're in there to donate blood - they'll take an extra blood sample for testing purposes.
Shit. Can anyone post the links for other countries (like Canada) to donate? I'm signing up tomorrow.
If you want to really affect someone else's life, this is a way better way than building some web-app.
That's what the developer of marrow.org might have thought. And then:
> I fussed around with the website to update my contact data
If someone did a better job designing or testing the UI on that web app, who knows how many extra lives may have been saved.
When I think about it, I've worked on at least three projects where bugs or usability issues could potentially have a direct impact on someone's life. Yet we didn't reflect on it much in the course of our day-to-day routine.
Being a donor is a bold action, but don't underestimate the impact of your development work as well.
> I fussed around with the website to update my contact data
If someone did a better job designing or testing the UI on that web app, who knows how many extra lives may have been saved.
When I think about it, I've worked on at least three projects where bugs or usability issues could potentially have a direct impact on someone's life. Yet we didn't reflect on it much in the course of our day-to-day routine.
Being a donor is a bold action, but don't underestimate the impact of your development work as well.
At one point I worked on reviewing the code for an emergency alert system for a university. Our group made it really simple not notify 60k people of all sorts of emergencies, through a really simple UI. We had it calling, texting, emailing, updating Facebook and Twitter and displaying messages on TV screens.
We also had an equally important test system so the campus police could test their familiarity with the procedures daily. This is the kind of app that saves lives; hence the line-by-line code reviews of every single change to the application, and backup procedures for backup procedures in case something breaks.
It is true, not every day you get to work on something like that. However, when you do, it always makes the hair on the back of your head stand up each time you find a bug.
We also had an equally important test system so the campus police could test their familiarity with the procedures daily. This is the kind of app that saves lives; hence the line-by-line code reviews of every single change to the application, and backup procedures for backup procedures in case something breaks.
It is true, not every day you get to work on something like that. However, when you do, it always makes the hair on the back of your head stand up each time you find a bug.
[deleted]
If any of you are in Seattle, and want to become registered marrow donors and potentially help save a life, there is a swabbing party tonight at the Rob Roy in Belltown.
http://www.facebook.com/event.php?eid=174595119298897
http://www.facebook.com/event.php?eid=174595119298897
If you're in the UK you can register with the Anthony Nolan trust as a donor. The whole process is incredibly simple, so please do.
http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
I was about to sign up, but I am disqualified due to my fibromyalgia, which they consider an auto-immune disorder. I didn't think the current research still considered it one - it's more a neurotransmitter imbalance than anything else.
A sincerely moving story. I'm already a registered donor, but this reminded me to update my address, which, like yours, was still a college dorm. If I were ever called up for a donation, I wouldn't hesitate for a moment.
I signed up for the program when I read that story, and just sent my cheek swabs in (4 of them!) this past weekend... seems like a no brainer if you actually want to make a difference in the world :-)
I wonder if there's a decent solution on the forwarding thing with some kind of unique id as metadata on an address, so if something's important someone in possession of the old address can find you through the ID? Or maybe that's just not practical, as no one would use it/retain the info unneeded in the short term.
I wonder if there's a decent solution on the forwarding thing with some kind of unique id as metadata on an address, so if something's important someone in possession of the old address can find you through the ID? Or maybe that's just not practical, as no one would use it/retain the info unneeded in the short term.
Thanks for sharing a touching story - a bit of quick digging came up with the new Canadian equivalent:
http://www.onematch.ca/
http://www.onematch.ca/
Thanks. Updated the links post.
Fantastic Story! I always love to see people helping each other.
After a visit to India earlier in the year, to oversee development of software for my new biz, I was awestruck at the conditions people were living in. Seeing this made me want to do something to help, and therefore decided to contribute a portion of every dollar earned to build water wells in developing countries for clean water.
I will definitely look into this as well to help...
After a visit to India earlier in the year, to oversee development of software for my new biz, I was awestruck at the conditions people were living in. Seeing this made me want to do something to help, and therefore decided to contribute a portion of every dollar earned to build water wells in developing countries for clean water.
I will definitely look into this as well to help...
http://marrow.org/Join/Join_in_Person/International_Donor_Ce...
I'm quite surprised that there are no donor centers in other countries. Are there? Most of these(or all) are first world countries - it scares me to think the chances of people in third world countries if even the ones listed here have a hard time looking for donors.
I'm quite surprised that there are no donor centers in other countries. Are there? Most of these(or all) are first world countries - it scares me to think the chances of people in third world countries if even the ones listed here have a hard time looking for donors.
I've been telling myself I would register for awhile now. After reading this, I signed up right away. It only took a few minutes, just waiting on the collection kit.
I signed up to be a donor, and I'm gonna try and convince my girlfriend to do the same. Thank you for bringing this to my attention!
Why not just put your email address on your blog, rather than messing around with their website?
Question: Can I go to a hospital near my house and donate to the registry?
I knew it was coming, but that last line was brutal to read.
Signed up!
Signed up!
Is it possible to donate under sedation?
great that this(signing up as a donor) get some attention! We need more bone marrow donors!
Ouch.
To the extent it's still relevant in the modern world, our postal system really needs to work a little more like the phone system.
I can be pretty much anywhere in the US (or really, the world, if I want to pay international roaming fees), someone can dial my well-known phone number, and my phone will ring.
For ordinary first class mail, I should be able to generate unique ID numbers on the USPS's website, and associate them with any physical US address I wish at any time. Then I can keep one or more postal IDs pointed at the location(s) I actually receive mail at, and the scanners (virtually all mail is routed by optical scanners now, even hand-addressed envelopes) can just read the ID number and stamp on the current physical address.
To the extent it's still relevant in the modern world, our postal system really needs to work a little more like the phone system.
I can be pretty much anywhere in the US (or really, the world, if I want to pay international roaming fees), someone can dial my well-known phone number, and my phone will ring.
For ordinary first class mail, I should be able to generate unique ID numbers on the USPS's website, and associate them with any physical US address I wish at any time. Then I can keep one or more postal IDs pointed at the location(s) I actually receive mail at, and the scanners (virtually all mail is routed by optical scanners now, even hand-addressed envelopes) can just read the ID number and stamp on the current physical address.
according to the story, the post office did better than any phone provider would. he moved to a new location, maybe years later, and a piece of mail still followed him to his new address. i'm sure the registry gets notified of forwarding address changes for people on their lists, so they could in theory keep up with you even if you moved a bunch of times (as long as you forwarded from at least your last address).
if you get a new phone number, your old one probably won't forward to you, and once someone else has that new number, you will never get forwarded calls. at least with a mailing address, new people can occupy that same old address but any mail to it will still forward based on your name.
if you get a new phone number, your old one probably won't forward to you, and once someone else has that new number, you will never get forwarded calls. at least with a mailing address, new people can occupy that same old address but any mail to it will still forward based on your name.
It appears to not have been the post office that "did better than any phone provider would":
> Did you know that, when the marrow donation center finds a
> match, they try desperately to reach the potential donor? Even
> if that person has moved from their dorm room long ago, even if
> their contact information has changed, even if they’re in a
> different state, even if 16 years have passed? They try. They
> look all over for ways to reach that person.They succeeded in sending mail to his last known address, which was his old company. He simply failed to set up forwarding from there (although he tried, it apparently didn't work) and didn't pay attention to what get sent there.
The phone equivalent would have tried his dorm and that would have been that. He never would have even known that they had tried to contact him.
The phone equivalent would have tried his dorm and that would have been that. He never would have even known that they had tried to contact him.
Wouldn't the phone equivalent be them calling his office number and leaving a message? It seems like they looked up his name and when they found a hit, they found his office and his office address. Surely there would also have been a similar process looking up his last known phone number if they determined he no longer used whatever number he gave them?
You have to pay for mail forwarding and in case for a address that old it probably didn't really something worthwhile. But we have email addresses now.
I recently changed my address and USPS charged me $1 to file the online mail forwarding form but I believe it's free if you go the post office or mail in the form (requires stamp). They will forward all mail to the new address for 18 months. After that I believe you can get a year extension but that will probably cost you another $1.
they claim thats there to verify you are really you who is trying to change the address.
you do not have to pay for mail forwarding with the us post office. i've moved twice in the past few years and have had a bunch of mail forwarded without ever paying for anything.
I seriously doubt the post office had much to do with tracking him down. My repeated experience with the USPS is that they pay absolutely no attention to mail forwarding requests, ever. It's far more likely that someone at the matching network did some googling.
And I don't need a new phone number, that's kind of the point. I can switch providers and still keep my number. I can move to the other side of the country and keep my number. That's what I want out of the post office.
And I don't need a new phone number, that's kind of the point. I can switch providers and still keep my number. I can move to the other side of the country and keep my number. That's what I want out of the post office.
I've wanted that for years from the post office: one address, your stuff follows you wherever, you never change your "address" you just update your location with the post office. I explained the idea to my first wife in the late seventies, and she thought I was solving a non-problem.
Some mailbox companies do that for you. People (esp old folks) living in RV traveling don't have physical address, so they set up one permanent address with a mailbox company to receive all incoming mails. The mailbox company would forward them to their current location. Whenever they stop at one place extensively, they contact the mailbox company to update the mail forward to the new location.
>>My repeated experience with the USPS is that they pay absolutely no attention to mail forwarding requests, ever.
I do find this surprising as for me, forwarding requests have always worked as expected. Could be a management problem in your area.
I do find this surprising as for me, forwarding requests have always worked as expected. Could be a management problem in your area.
http://www.earthclassmail.com/ would help with this kind of problem.
AFAICT, mail forwarding is done by the local post office that would have delivered the mail. So mail headed to CA gets to your local CA post office, gets a yellow sticker on it, and gets stuck back in the mail. Mail originating in MA, destined for a CA, and forwarded to MA, does indeed cross the country twice. And routing loops loop, true story.
How do they submit forwarding updates to remote post offices? Well, they've already got an in-house network with QoS guarantees, so of course they use that. Yes, I'm referring to letter delivery itself - a good lesson in technology sticking around because it "works".
They do have a new service called "premium forwarding" or something where they want to gouge you something like $20/mo for making their life easier too (and to encourage you to use it, they take away the ability to update your normal forwarding online!). It's bureaucracy, perverse incentives abound! I've also heard (from a letter carrier) that the USPS is looking to stop Saturday delivery, so they've been holding back mail on Saturdays to justify it being a light day.
How do they submit forwarding updates to remote post offices? Well, they've already got an in-house network with QoS guarantees, so of course they use that. Yes, I'm referring to letter delivery itself - a good lesson in technology sticking around because it "works".
They do have a new service called "premium forwarding" or something where they want to gouge you something like $20/mo for making their life easier too (and to encourage you to use it, they take away the ability to update your normal forwarding online!). It's bureaucracy, perverse incentives abound! I've also heard (from a letter carrier) that the USPS is looking to stop Saturday delivery, so they've been holding back mail on Saturdays to justify it being a light day.
I thought mail forwarding was done at the initial address scan, not the final address scan. I did a bunch of research on this a few months ago, but unfortunately I can't find a source right now.
That would make the most sense, but I've observed contradictory behavior with MA->CA->MA mail taking ~10 days. Also, the CA post office not respecting the "end forward" date, and mail getting sent back and forth a few times. I suppose I could have been seeing corner cases due to some unknown facet, but to me they indicate an antiquated system.
Isn't that essentially what a PO Box is? The only caveat with a PO Box is that it's specific to a zip-code, but the principle is the same.
I can't help but think that there might be a business idea wrapped up in there somewhere, or at the very least, another product for USPS to offer.
I can't help but think that there might be a business idea wrapped up in there somewhere, or at the very least, another product for USPS to offer.
ups offers mail forwarding for mailboxes at their stores - http://www.theupsstore.com/products-services/mailbox/Pages/i...
some other smaller companies do receiving and forwarding, some will even scan the mail you receive so you can view it online and see whether it's junk mail or not - http://www.virtualpostmail.com/
some other smaller companies do receiving and forwarding, some will even scan the mail you receive so you can view it online and see whether it's junk mail or not - http://www.virtualpostmail.com/
There are mail forwarding services out there already, but they cost money and exist at the whim of private enterprises that could disappear at any time.
What you're proposing is basically the analog of DNS. We would have seen this years ago if only there was any real competition in the postal space.
I had a high-school teacher that told us you could write a SSN on an envelope and the postal service was required by law to get it to the person. He claimed to have tried it out by sending himself a letter, but it took many months to arrive.
You'll notice from my hedging that I only half believe the story. Also, it may be a true story, but may have happened in the '50's or something.
You'll notice from my hedging that I only half believe the story. Also, it may be a true story, but may have happened in the '50's or something.
Cool idea. Simpler one: the marrow donor place could collect email address instead of home address.
They do collect email address now, but the author registered in 1995 and there were handful of people having an email address back then.
That wouldn't have helped me when I was in college; my college stopped supporting my email address after I left. (They also had this weird email client called Simian that you had to use, and it wouldn't let you read your email until it had authenticated.)
That actually isn't really true. Marrow donations still require anesthesia and a surgical procedure. In the interest of providing full information:
http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...
http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...
(Edit: c'mon folks...why in the world would you vote this down? It's important information to know if you're going to be a donor.)