Sign Up Online To Donate Bone Marrow
February 14, 2007 9:07 AM Subscribe
Sign Up To Be A Bone Marrow Donor Without Leaving Your House On this day of love, do something great for the human race and sign up to to be a bone marrow donor. For a small fee, Gift of Life will send a registration kit to your house, so you don't even have to leave your chair.
They want your Social Security Number to register?
That seems strange.
posted by bshort at 9:15 AM on February 14, 2007
That seems strange.
posted by bshort at 9:15 AM on February 14, 2007
And yes, this was inspired by this.
posted by ThePinkSuperhero at 9:15 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 9:15 AM on February 14, 2007 [1 favorite]
Well, I signed up many months ago, and I haven't had my identity stolen yet, so that's good.
posted by ThePinkSuperhero at 9:18 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 9:18 AM on February 14, 2007 [1 favorite]
Also, the "small fee" is $36, which, while it doesn't break the bank, certainly is far more than I'm willing to pay to register as a donor.
I know this is a worthy and important service, but it seems strange that they set the bar so high.
posted by bshort at 9:21 AM on February 14, 2007
I know this is a worthy and important service, but it seems strange that they set the bar so high.
posted by bshort at 9:21 AM on February 14, 2007
I did this a few months ago. My girlfriend and I laughed hysterically at the needless complication in the process of signing up. At one point in the process they mail you a fucking flowchart so you can understand the process.
To wit:
You go to the website and put in your info (including, inexplicably, your SSN, which I don't love being tied to my genetic info) and payment.
Then you print a form it generates and mail it in.
Then, when they receive the form, they mail you a kit.
When you get the kit, you swab your cheek and mail it back to them.
Like, why can't steps two and three be combined. Put the signature form in the fucking kit. Why the printing and the extra trip to the post office?
Also, have I mentioned how annoying I find it when places want my SSN without explanation?
posted by rbs at 9:26 AM on February 14, 2007
To wit:
You go to the website and put in your info (including, inexplicably, your SSN, which I don't love being tied to my genetic info) and payment.
Then you print a form it generates and mail it in.
Then, when they receive the form, they mail you a kit.
When you get the kit, you swab your cheek and mail it back to them.
Like, why can't steps two and three be combined. Put the signature form in the fucking kit. Why the printing and the extra trip to the post office?
Also, have I mentioned how annoying I find it when places want my SSN without explanation?
posted by rbs at 9:26 AM on February 14, 2007
I don't think it seems that strange- nothing in life is free. Someone has to pay the bills. Drives where people can register "for free" aren't free; they're just paid for by somebody else.
posted by ThePinkSuperhero at 9:26 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 9:26 AM on February 14, 2007 [1 favorite]
Oh, also, I tried to do this back when I was in college. A student group on campus (UCSD) was doing a marrow drive. They turned me away because I'm not asian. WTF?!?
posted by rbs at 9:27 AM on February 14, 2007
posted by rbs at 9:27 AM on February 14, 2007
The page linked to says it's $18. Where are you getting $36, bshort?
(I mean, yes, it is money out of pocket either way. I only noticed the amount because I thought the numerological tie-in was an interesting touch.)
posted by nebulawindphone at 9:29 AM on February 14, 2007
(I mean, yes, it is money out of pocket either way. I only noticed the amount because I thought the numerological tie-in was an interesting touch.)
posted by nebulawindphone at 9:29 AM on February 14, 2007
It was $36 or $58 (depending upon some coupon code or something) when I did it in December.
posted by rbs at 9:31 AM on February 14, 2007
posted by rbs at 9:31 AM on February 14, 2007
For all the crabs cheapos in the house, you can also keep your eye on the upcoming donor drives page.
posted by ThePinkSuperhero at 9:33 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 9:33 AM on February 14, 2007 [1 favorite]
I don't think it seems that strange- nothing in life is free. Someone has to pay the bills. Drives where people can register "for free" aren't free; they're just paid for by somebody else.
Yep, I know, it's just donor programs like this are far more successful when they cast as wide a net as possible.
If the cost was somewhere between free and $5 I'd sign up in a heartbeat and I'd be glad to donate my marrow to anyone that needed it. If the cost is $36 then I'm suddenly debating whether I should sign up as a donor or treat myself to that new ZZ Top record.
I know I should probably just donate the $36 and be done with it, but I can't help but think that that money could be of far more philanthropic use if I gave it to a soup kitchen or a women's shelter.
Also, I googled around a bit, and the $36 is actually less than it costs to register with most Bone Marrow registries.
posted by bshort at 9:34 AM on February 14, 2007
Yep, I know, it's just donor programs like this are far more successful when they cast as wide a net as possible.
If the cost was somewhere between free and $5 I'd sign up in a heartbeat and I'd be glad to donate my marrow to anyone that needed it. If the cost is $36 then I'm suddenly debating whether I should sign up as a donor or treat myself to that new ZZ Top record.
I know I should probably just donate the $36 and be done with it, but I can't help but think that that money could be of far more philanthropic use if I gave it to a soup kitchen or a women's shelter.
Also, I googled around a bit, and the $36 is actually less than it costs to register with most Bone Marrow registries.
posted by bshort at 9:34 AM on February 14, 2007
The page linked to says it's $18. Where are you getting $36, bshort?
I went through the registration from that page and it got to the point where it either wanted me to enter a sponsorship code or supply some other form of payment. It tells you there that the fee is $36.
posted by bshort at 9:36 AM on February 14, 2007
I went through the registration from that page and it got to the point where it either wanted me to enter a sponsorship code or supply some other form of payment. It tells you there that the fee is $36.
posted by bshort at 9:36 AM on February 14, 2007
Ew. That's kind of sleazy.
It's too bad, too, because this is a good idea, and I'd like to see someone doing it in a good way.
posted by nebulawindphone at 9:43 AM on February 14, 2007
It's too bad, too, because this is a good idea, and I'd like to see someone doing it in a good way.
posted by nebulawindphone at 9:43 AM on February 14, 2007
All I can tell you is that the final page says $36 but I was only charged $18.
If it cost you $36 to save a baby's life, would you do it?
sorry. got carried away there.
posted by anastasiav at 9:48 AM on February 14, 2007 [1 favorite]
If it cost you $36 to save a baby's life, would you do it?
sorry. got carried away there.
posted by anastasiav at 9:48 AM on February 14, 2007 [1 favorite]
I just called them and they said that it is $36, and that the registration page would be updated to reflect that shortly.
posted by amarynth at 9:51 AM on February 14, 2007
posted by amarynth at 9:51 AM on February 14, 2007
Why SSN? That's very bad. Ditto nebula.
You can save babies lives for a lot less than $36 BTW. How many dollars have you given to oxfam this year? (etc)
posted by lalochezia at 9:59 AM on February 14, 2007
You can save babies lives for a lot less than $36 BTW. How many dollars have you given to oxfam this year? (etc)
posted by lalochezia at 9:59 AM on February 14, 2007
Can someone clarify if this registry is only looking for Jews? Nowhere on the website does it explicitly say as much, but literally all the stories appear to be about Ashkenazi Jews donating to other Ashkenazi Jews. As a Gentile of Anglo-Saxon descent, I'm guessing the odds of me being a match are vanishingly small. Do all records end up in a central registry? (Yes, I'm clueless.)
The part where they want my SSN is sort of giving me pause-- which is probably kind of silly. I give blood, so my SSN is already tied to samples of my blood in some Red Cross database, I guess. But somehow having it tied to a file of my genetic information is weirding me out.
posted by thehmsbeagle at 10:03 AM on February 14, 2007
The part where they want my SSN is sort of giving me pause-- which is probably kind of silly. I give blood, so my SSN is already tied to samples of my blood in some Red Cross database, I guess. But somehow having it tied to a file of my genetic information is weirding me out.
posted by thehmsbeagle at 10:03 AM on February 14, 2007
Did it ever occur to any of the complainers that you might someday need a bone marrow transplant yourself?
Personally I was quite thrilled to find I could sit on my lazy butt and register from the privacy of my own home. $36.00 sounds about right for the cost of the testing involved.
I would have preferred that they not collect an SSN. Maybe they could address that in the future if enough people complain.
posted by dweingart at 10:04 AM on February 14, 2007
Personally I was quite thrilled to find I could sit on my lazy butt and register from the privacy of my own home. $36.00 sounds about right for the cost of the testing involved.
I would have preferred that they not collect an SSN. Maybe they could address that in the future if enough people complain.
posted by dweingart at 10:04 AM on February 14, 2007
And this point bears repeating:
Also, I googled around a bit, and the $36 is actually less than it costs to register with most Bone Marrow registries.
posted by ThePinkSuperhero at 10:04 AM on February 14, 2007 [1 favorite]
Also, I googled around a bit, and the $36 is actually less than it costs to register with most Bone Marrow registries.
posted by ThePinkSuperhero at 10:04 AM on February 14, 2007 [1 favorite]
Can someone clarify if this registry is only looking for Jews?
From the reading I did, the foundation was started in an attempt to register people of Jewish descent into the bone marrow registry, and that is still a focus of what they do, but they will accept registration from people of all ethnic backgrounds, of course.
posted by ThePinkSuperhero at 10:06 AM on February 14, 2007 [1 favorite]
From the reading I did, the foundation was started in an attempt to register people of Jewish descent into the bone marrow registry, and that is still a focus of what they do, but they will accept registration from people of all ethnic backgrounds, of course.
posted by ThePinkSuperhero at 10:06 AM on February 14, 2007 [1 favorite]
Dweingart, I'm with you. My inherent laziness is thrilled about not having to leave the house.
I called them, and asked my two burning questions:
Q: Do you take Gentiles?
A: Yes. (It sounded to me like there are a bunch of different registries, which kind of... perplexes me. Is there a central clearinghouse? What if you match someone in a different registry? I know I should have asked that question while I had the lady on the phone, but I didn't think of it until later.)
Q: What's with the SSN collecting?
A: Everyone complains about that. They don't do anything evil with it. They ask for it so that if you don't come up as a match for 10 years, and over that time your phone number and address change, and you get married, they still have a chance to track you down.
posted by thehmsbeagle at 10:15 AM on February 14, 2007
I called them, and asked my two burning questions:
Q: Do you take Gentiles?
A: Yes. (It sounded to me like there are a bunch of different registries, which kind of... perplexes me. Is there a central clearinghouse? What if you match someone in a different registry? I know I should have asked that question while I had the lady on the phone, but I didn't think of it until later.)
Q: What's with the SSN collecting?
A: Everyone complains about that. They don't do anything evil with it. They ask for it so that if you don't come up as a match for 10 years, and over that time your phone number and address change, and you get married, they still have a chance to track you down.
posted by thehmsbeagle at 10:15 AM on February 14, 2007
From the website
Gift of Life is an Associate Donor Registry of the National Marrow Donor Program and a member of the worldwide registry Bone Marrow Donors Worldwide. Gift of Life facilitates transplants for patients around the world, and in Israel Gift of Life works closely with the registries at Hadassah University Hospital and Sheba Medical Center, both to recruit donors and transplant patients.
From that it seems like you get entered into the national registry and a worldwide registry.
posted by jourman2 at 10:18 AM on February 14, 2007
Gift of Life is an Associate Donor Registry of the National Marrow Donor Program and a member of the worldwide registry Bone Marrow Donors Worldwide. Gift of Life facilitates transplants for patients around the world, and in Israel Gift of Life works closely with the registries at Hadassah University Hospital and Sheba Medical Center, both to recruit donors and transplant patients.
From that it seems like you get entered into the national registry and a worldwide registry.
posted by jourman2 at 10:18 AM on February 14, 2007
(For the record, I don't object to the cost, and since I have had family members need bone marrow transplants, I am thinking of signing up. It's the dishonesty — or maybe just plain confusion — about the cost that bugs me. I'd really rather give my money to a charity that at least gave the appearance of being up-front about it.)
posted by nebulawindphone at 10:19 AM on February 14, 2007
posted by nebulawindphone at 10:19 AM on February 14, 2007
Do Ashkenazi Jews have a higher incidence of leukemia? Or are there just various bone marrow donor registries directed at different demographics?
posted by amro at 10:19 AM on February 14, 2007
posted by amro at 10:19 AM on February 14, 2007
Recycling my comment from the AskMe thread: in Canada it's handled by Canadian Blood Services, and you can even sign up online.
posted by hangashore at 10:20 AM on February 14, 2007 [1 favorite]
posted by hangashore at 10:20 AM on February 14, 2007 [1 favorite]
I was thrown by being limited to only one ethnicity. What's a 1/2 Czech, 1/4 Irish, 1/8 Native American, 1/8 Dutch girl to do?
posted by amarynth at 10:22 AM on February 14, 2007
posted by amarynth at 10:22 AM on February 14, 2007
Oh good grief, can you spare me? Ok, you're cheap, I get it, you don't want to spend $36 on a good cause, whatever. Never mind that, like I said, things cost money, and where else is an organization like this going to raise money anyway, but whatever.
Yes, I'm cheap.
There are lots of good causes, and I only have so many dollars to give out. And, like others have pointed out, it seems like this registry is really designed to serve the Jewish community. Since I'm not Jewish I probably be able to help more people by registering with one of the larger registries.
posted by bshort at 10:22 AM on February 14, 2007
Yes, I'm cheap.
There are lots of good causes, and I only have so many dollars to give out. And, like others have pointed out, it seems like this registry is really designed to serve the Jewish community. Since I'm not Jewish I probably be able to help more people by registering with one of the larger registries.
posted by bshort at 10:22 AM on February 14, 2007
Since I'm not Jewish I probably be able to help more people by registering with one of the larger registries.
All the registries are tied together- you're not limiting yourself by choosing one registry over another. This organization was started to target a certain demographic, but they handle and serve all people.
posted by ThePinkSuperhero at 10:24 AM on February 14, 2007 [1 favorite]
All the registries are tied together- you're not limiting yourself by choosing one registry over another. This organization was started to target a certain demographic, but they handle and serve all people.
posted by ThePinkSuperhero at 10:24 AM on February 14, 2007 [1 favorite]
Of course you could just join the National Marrow Registry straight up. But for some reason it seems like its 52 dollars there - couple of $$$ in savings here.
posted by jourman2 at 10:25 AM on February 14, 2007
posted by jourman2 at 10:25 AM on February 14, 2007
Also, you could go donate blood locally, and they will sign you up for free (at least, they did for my husband).
posted by mckenney at 10:28 AM on February 14, 2007
posted by mckenney at 10:28 AM on February 14, 2007
ThePinkSuperhero - thanks for posting this. I think it's a great idea, although I have to admit that I'd totally forgotten that I'd ever done it until I got the call yesterday.
For what I've learned (in the past 24 hours), you see sights and groups catering to different ethnicities because odds of a match for a transplant increase/decrease greatly within or outside of your race. Since posting my question yesterday, I've come across sites (thanks to others here) for people of Jewish and Hawaiian descent - no doubt there are many more out there. I guess the point would be that sites like the Hawaiian one cater to their ethnicity because there are proportionately fewer Hawaiians who sign up to donate, even though statistically other Hawaiians offer the 'best' chance of a match.
I joined the National Registry - which doesn't care what race you are. I think regardless of which registry you join, you end up in the national database. I had not only moved across the country since registering (which was free because it was covered by a charity event), but nothing was in my name anymore. I'm fairly sure the only way they found me was via my Social Security number - but I guess who knows in this era of intertubes?
Anyway, kudos to you PinkSuperhero - whose to say someone won't read your post, register somewhere (anywhere) and three years from now get a call like I did yesterday.
posted by matty at 10:36 AM on February 14, 2007
For what I've learned (in the past 24 hours), you see sights and groups catering to different ethnicities because odds of a match for a transplant increase/decrease greatly within or outside of your race. Since posting my question yesterday, I've come across sites (thanks to others here) for people of Jewish and Hawaiian descent - no doubt there are many more out there. I guess the point would be that sites like the Hawaiian one cater to their ethnicity because there are proportionately fewer Hawaiians who sign up to donate, even though statistically other Hawaiians offer the 'best' chance of a match.
I joined the National Registry - which doesn't care what race you are. I think regardless of which registry you join, you end up in the national database. I had not only moved across the country since registering (which was free because it was covered by a charity event), but nothing was in my name anymore. I'm fairly sure the only way they found me was via my Social Security number - but I guess who knows in this era of intertubes?
Anyway, kudos to you PinkSuperhero - whose to say someone won't read your post, register somewhere (anywhere) and three years from now get a call like I did yesterday.
posted by matty at 10:36 AM on February 14, 2007
For all the crabs cheapos in the house, you can also keep your eye on the upcoming donor drives page.
Any sentence containing the words "crabs" and "donor" puts me in the giving mood, alrighty.
For those who can't afford $36, it's okay, no one's twisting your arm. For those who can afford $36 but are turned off by the organization's request for it, it's a pretty tacky thing to complain about. If you're not interested, why say anything that might discourage others?
What's the difference between this and any other philanthropic cause a body might donate to just for the hell of it? That instead of getting a frisbee and a canvas tote bag you actually have to put a little effort into what you are paying for? That you may actually wind up being further inconvenienced by actually winding up being a donor? I don't get it.
posted by hermitosis at 10:38 AM on February 14, 2007
Any sentence containing the words "crabs" and "donor" puts me in the giving mood, alrighty.
For those who can't afford $36, it's okay, no one's twisting your arm. For those who can afford $36 but are turned off by the organization's request for it, it's a pretty tacky thing to complain about. If you're not interested, why say anything that might discourage others?
What's the difference between this and any other philanthropic cause a body might donate to just for the hell of it? That instead of getting a frisbee and a canvas tote bag you actually have to put a little effort into what you are paying for? That you may actually wind up being further inconvenienced by actually winding up being a donor? I don't get it.
posted by hermitosis at 10:38 AM on February 14, 2007
Thanks, matty- you are the inspiration for this post! Good luck to you and your match!
posted by ThePinkSuperhero at 10:38 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 10:38 AM on February 14, 2007 [1 favorite]
Just as an FYI, if you register directly with the National Marrow Donor Program, they will ask for your Social Security number (the purpose, I gather, is to help them track you down in the future if you move), but you can leave it blank and still complete the registration (as I just did). It does cost a little more ($52, tax deductive); fortunately I'm in a position at this point to be able to afford it.
Hat tip to TPS for posting this, and matty for inspiring it!
posted by Kat Allison at 10:49 AM on February 14, 2007
Hat tip to TPS for posting this, and matty for inspiring it!
posted by Kat Allison at 10:49 AM on February 14, 2007
If the cost was somewhere between free and $5 I'd sign up in a heartbeat and I'd be glad to donate my marrow to anyone that needed it.
The cost to you of a few days of painful recovery is going to be equivalent to more than $36, I think, though. If you don't wanna pay the 20-50 bucks, maybe they figure you wouldn't be committed when the call comes. Maybe they don't want people registering who don't really want to do this. People would register for "free" and then cancel out later, wasting their time and effort. I don't know.
posted by Listener at 10:59 AM on February 14, 2007
The cost to you of a few days of painful recovery is going to be equivalent to more than $36, I think, though. If you don't wanna pay the 20-50 bucks, maybe they figure you wouldn't be committed when the call comes. Maybe they don't want people registering who don't really want to do this. People would register for "free" and then cancel out later, wasting their time and effort. I don't know.
posted by Listener at 10:59 AM on February 14, 2007
If you're not interested, why say anything that might discourage others?
Strongly agree with this. I think folks should get out of their default cynical/snark posture and move on if they're not interested. There's no hoax or fraud to uncover here. Its just an organization trying to get things done and trying to overcome their limitations.
Sure, they could probably hire an extra marketing person to deal with the SSN-phobic, anything-online-asking-for-money=scam, crowd but then that would tap into their budget further.
posted by vacapinta at 11:00 AM on February 14, 2007
Strongly agree with this. I think folks should get out of their default cynical/snark posture and move on if they're not interested. There's no hoax or fraud to uncover here. Its just an organization trying to get things done and trying to overcome their limitations.
Sure, they could probably hire an extra marketing person to deal with the SSN-phobic, anything-online-asking-for-money=scam, crowd but then that would tap into their budget further.
posted by vacapinta at 11:00 AM on February 14, 2007
Well, I signed up many months ago, and I haven't had my identity stolen yet, so that's good.
My Red Cross blood donor card got stolen awhile back. I don't know what someone would want with it and I don't want to know.
posted by dreamsign at 11:08 AM on February 14, 2007
My Red Cross blood donor card got stolen awhile back. I don't know what someone would want with it and I don't want to know.
posted by dreamsign at 11:08 AM on February 14, 2007
Vampires. Definitely vampires.
posted by ThePinkSuperhero at 11:13 AM on February 14, 2007 [2 favorites]
posted by ThePinkSuperhero at 11:13 AM on February 14, 2007 [2 favorites]
I can't speak for the Gift of Life registry, but I work for the National Marrow Donor Program, and developed the online registration site linked to above (Online registration for the National Marrow Donor Program). As Kat said, when we ask for your social security number, it's only to help us find you if you move. It's not a required field. We also ask for contact information for other people that might know you for the same purpose.
Once you complete the online forms, our process is to send you a kit that contains some buccal swabs (kind of like long q-tips), some labels and a mailer. You swab the inside of your cheek, put the labels on the swabs to identify who you are, and send them back to us. We do the tissue typing, and add you to our registry. We're looking for people of any race, but we do a lot of minority-focused recruitment. As matty alluded to, one more Caucasian donor added to a large pool of donors helps, but one more minority donor added to a smaller pool helps a lot more.
This online registration process has opened us up to recruit more donors for less money than before, but it's still $52.00 to register with us. We have more than 6 million donors registered, and facilitate about 3000 transplants annually. It's still a pretty cheap way to potentially save someone's life.
/end-of-sales-pitch
Bone marrow donation in general, the marrow and stem cell registries across the world, the cooperation between these organizations and the ultimate payoff of the goal is an interesting topic in general. For another FPP on another day, maybe.
posted by Read at 11:46 AM on February 14, 2007 [4 favorites]
Once you complete the online forms, our process is to send you a kit that contains some buccal swabs (kind of like long q-tips), some labels and a mailer. You swab the inside of your cheek, put the labels on the swabs to identify who you are, and send them back to us. We do the tissue typing, and add you to our registry. We're looking for people of any race, but we do a lot of minority-focused recruitment. As matty alluded to, one more Caucasian donor added to a large pool of donors helps, but one more minority donor added to a smaller pool helps a lot more.
This online registration process has opened us up to recruit more donors for less money than before, but it's still $52.00 to register with us. We have more than 6 million donors registered, and facilitate about 3000 transplants annually. It's still a pretty cheap way to potentially save someone's life.
/end-of-sales-pitch
Bone marrow donation in general, the marrow and stem cell registries across the world, the cooperation between these organizations and the ultimate payoff of the goal is an interesting topic in general. For another FPP on another day, maybe.
posted by Read at 11:46 AM on February 14, 2007 [4 favorites]
Wow, someone who knows what they're talking about! Thanks for commenting, Read. One thing I've always wondered, and I don't know if you would know about this, is what percentage of potential donors are matched with someone. Is that someone you have stats on?
posted by ThePinkSuperhero at 11:54 AM on February 14, 2007 [1 favorite]
posted by ThePinkSuperhero at 11:54 AM on February 14, 2007 [1 favorite]
Read: how far out into databases does the SSN data travel? Does it stay with the group that signed you up, or get put in the national db? international?
posted by rbs at 11:54 AM on February 14, 2007
posted by rbs at 11:54 AM on February 14, 2007
Don't forget, if you're having a baby there are umbilical cord blood banks, too.
Some are pay-services where only your family can access, but there are also services that will take donations and use them if they find a match.
In some circumstances, umbilical cord blood stem cells is a better therapy than adult bone marrow or mobilized peripheral blood stem cells.
posted by porpoise at 12:13 PM on February 14, 2007
Some are pay-services where only your family can access, but there are also services that will take donations and use them if they find a match.
In some circumstances, umbilical cord blood stem cells is a better therapy than adult bone marrow or mobilized peripheral blood stem cells.
posted by porpoise at 12:13 PM on February 14, 2007
Read, thanks for the explanation!
Um, unfortunately when I filled out your guys' form, I put down 1876 instead of 1976, didn't catch it in time, and now I appear to be locked out for being over the age of 61, with no way to change it to the correct date. Is this a cunning test to tell if I'm bright enough to be a donor, one which I clearly FAILED? Heh.
posted by thehmsbeagle at 12:25 PM on February 14, 2007
Um, unfortunately when I filled out your guys' form, I put down 1876 instead of 1976, didn't catch it in time, and now I appear to be locked out for being over the age of 61, with no way to change it to the correct date. Is this a cunning test to tell if I'm bright enough to be a donor, one which I clearly FAILED? Heh.
posted by thehmsbeagle at 12:25 PM on February 14, 2007
rbs: the ssn stays with us, attached to the donor record. We are, for all practical purposes, the national registry. Other registries search our donors by sending us the patients tissue typing. We give them back a list of potential donors, identified only by the donor ID (a 9 digit number that doesn't mean anything). When it comes to contacting the donor, that goes through us.
Donor confidentiality is a big issue for us. You might imagine that if a patient found out that there was a donor that was a good match, but didn't want to donate, and that the patient could find out some identifying information about the donor, they could apply pressure to the donor, which wouldn't be too ethical. We have guidelines about the donors and patients contacting each other after the transplant ,but they have to wait a year or two. After seeing a few of these meetings, I can tell you that it's pretty emotional.
Thepinksuperhero: It's hard to say what the percentages are, because some people are more "interesting" in regards to tissue typing, than others. I've been registered for about 7 years, and I'm still waiting for a phone call, but I know other people that have been asked to donate several times for different patients in the same period. It's all dependent on your genetic makeup and the people searching the registry. Our FAQ pages say that about 80% of the people that search the registry find a match, but not the other way around.
posted by Read at 12:34 PM on February 14, 2007
Donor confidentiality is a big issue for us. You might imagine that if a patient found out that there was a donor that was a good match, but didn't want to donate, and that the patient could find out some identifying information about the donor, they could apply pressure to the donor, which wouldn't be too ethical. We have guidelines about the donors and patients contacting each other after the transplant ,but they have to wait a year or two. After seeing a few of these meetings, I can tell you that it's pretty emotional.
Thepinksuperhero: It's hard to say what the percentages are, because some people are more "interesting" in regards to tissue typing, than others. I've been registered for about 7 years, and I'm still waiting for a phone call, but I know other people that have been asked to donate several times for different patients in the same period. It's all dependent on your genetic makeup and the people searching the registry. Our FAQ pages say that about 80% of the people that search the registry find a match, but not the other way around.
posted by Read at 12:34 PM on February 14, 2007
on preview: thehmsbeagle: if you made an honest mistake on the medical & health questionnaire, you could do two things: call us at 1 (800) MARROW2 (1-800-627-7692), and ask about fixing an error in your registration (I think that they can void the form, but it won't be automatic), or you could start from the beginning, and register with another email address. We use your email address as your username, and it's the unique identifier for the beginning of the process.
As far as a 140 year old person being able to register, I'll pass that on to my team, and talk to QA. (bunch of slackers.....)
posted by Read at 12:42 PM on February 14, 2007
As far as a 140 year old person being able to register, I'll pass that on to my team, and talk to QA. (bunch of slackers.....)
posted by Read at 12:42 PM on February 14, 2007
Happy Valentine's day TPS! Cutie. Thoughtful post.
I signed up a few years ago when I donated blood so folks who balk at giving their ssn online should remember that option.
posted by vronsky at 1:00 PM on February 14, 2007
I signed up a few years ago when I donated blood so folks who balk at giving their ssn online should remember that option.
posted by vronsky at 1:00 PM on February 14, 2007
Really awesome post, TPS.
posted by dirtynumbangelboy at 1:28 PM on February 14, 2007
posted by dirtynumbangelboy at 1:28 PM on February 14, 2007
Some of you are really unbelievable.
TPS, step away from the computer and take a walk or something. I haven't seen anybody moderate their own thread so obnoxiously in years. Let me explain how this is supposed to work: you find something neat out there on the internet, you link it here to share it with your fellow MeFites, and then you sit back and hope a good discussion develops. You do not obsessively hit Refresh and argue with everyone who says something you don't like. And frankly, this is not what MetaFilter is for. Yes, it's a good cause, but I thought it was established a long time ago that MeFi is not a social service agency. Posting something not because it's inherently of interest but because you think everyone should give money to a cause, and then trying to bully everyone into it and mocking anyone who doesn't go along with it, is not good posting behavior. It is none of your business how the rest of us choose to use our money and who we choose to donate to.
posted by languagehat at 1:51 PM on February 14, 2007 [5 favorites]
TPS, step away from the computer and take a walk or something. I haven't seen anybody moderate their own thread so obnoxiously in years. Let me explain how this is supposed to work: you find something neat out there on the internet, you link it here to share it with your fellow MeFites, and then you sit back and hope a good discussion develops. You do not obsessively hit Refresh and argue with everyone who says something you don't like. And frankly, this is not what MetaFilter is for. Yes, it's a good cause, but I thought it was established a long time ago that MeFi is not a social service agency. Posting something not because it's inherently of interest but because you think everyone should give money to a cause, and then trying to bully everyone into it and mocking anyone who doesn't go along with it, is not good posting behavior. It is none of your business how the rest of us choose to use our money and who we choose to donate to.
posted by languagehat at 1:51 PM on February 14, 2007 [5 favorites]
I moderate my threads obnoxiously all the time l-hat. I thought you were an anarchist. Give the girl a break. Mefi could bring out the worst in Mother Theresa.
posted by vronsky at 2:00 PM on February 14, 2007
posted by vronsky at 2:00 PM on February 14, 2007
I haven't seen anybody moderate their own thread so obnoxiously in years.
Awesome!!! I WIN AGAIN!! Do I get a crown? Or perhaps a sash?? It is V-Day, after all. Let me know.
posted by ThePinkSuperhero at 2:16 PM on February 14, 2007 [1 favorite]
Awesome!!! I WIN AGAIN!! Do I get a crown? Or perhaps a sash?? It is V-Day, after all. Let me know.
posted by ThePinkSuperhero at 2:16 PM on February 14, 2007 [1 favorite]
It is none of your business how the rest of us choose to use our money and who we choose to donate to.
I respect you a lot, languagehat, but I have to disagree. People who post in the thread that they're not going to donate have made it our business by not keeping their crabby mouths closed (and I say that in the most lovingly way possible). Give TPS a break.
posted by joshuaconner at 2:37 PM on February 14, 2007
I respect you a lot, languagehat, but I have to disagree. People who post in the thread that they're not going to donate have made it our business by not keeping their crabby mouths closed (and I say that in the most lovingly way possible). Give TPS a break.
posted by joshuaconner at 2:37 PM on February 14, 2007
Ordered one for me and one for my hubby, and passing on the link to some mailing lists I'm on. Thanks, matty, TPS, and Read!
posted by Asparagirl at 4:57 PM on February 14, 2007
posted by Asparagirl at 4:57 PM on February 14, 2007
Sorry to harp, but I'm less concerned that the bone marrow bank is going to do something unseemly with my SSN than the fact that they offer no assurance that the data is submtted via a secure server. Read, can you vouch on this? Sorry if I missed it along the way...
posted by foxy_hedgehog at 7:42 PM on February 14, 2007
posted by foxy_hedgehog at 7:42 PM on February 14, 2007
Having donated blood and an umbilical cord, (the baby and I didn't need it anymore!) I'm now enrolled for the bone marrow bank.
The person's life you save may one day save yours.
posted by JujuB at 10:39 PM on February 14, 2007
The person's life you save may one day save yours.
posted by JujuB at 10:39 PM on February 14, 2007
I would like to point out that there are a number of exceptions to this. My seizure history just saved me $36! Score!
Not everyone can donate. Perhaps the people who are balking at giving out their SSN or spending $36 really just don't want to tell you that they have the herp. Or seizures. Or tuberculosis.
I get mad whenever anyone spouts righteous indignation at me when I don't show up at a blood drive. Look, you fuckers, I'd be happy to open a vein and spurt in your general direction, but NO ONE WANTS MY EPILEPTIC BLOOD. Likewise people who have viewed my driver's license and seen that I didn't sign the organ donor card and gotten really and truly mad at me that I'm not doing everything I can with my cold dead body to further service humanity.
They never asked me what I DID plan to do with my body so I never got the chance to tell them that I was going to offer myself to a med school for dissection.
Stop telling people that they suck just because they don't or can't give to what you think is the greatest cause of the week. Despite what you may think, guilt is not a particularly good motivator. "Oh gee! I read this thread about bone marrow and someone said that she couldn't believe my gall that I found a reason not to donate. Now I REALLY want to go out and have needles painfully drilled into my hip!"
I mean, I want everyone to stop driving SUVs, start using biodiesel, and hand out condoms in high schools, but expressing my unending horror is not giving the earth (or anyone else) any hugs.
(No one wants my marrow. *sobs.*)
posted by grapefruitmoon at 12:03 AM on February 15, 2007 [1 favorite]
Not everyone can donate. Perhaps the people who are balking at giving out their SSN or spending $36 really just don't want to tell you that they have the herp. Or seizures. Or tuberculosis.
I get mad whenever anyone spouts righteous indignation at me when I don't show up at a blood drive. Look, you fuckers, I'd be happy to open a vein and spurt in your general direction, but NO ONE WANTS MY EPILEPTIC BLOOD. Likewise people who have viewed my driver's license and seen that I didn't sign the organ donor card and gotten really and truly mad at me that I'm not doing everything I can with my cold dead body to further service humanity.
They never asked me what I DID plan to do with my body so I never got the chance to tell them that I was going to offer myself to a med school for dissection.
Stop telling people that they suck just because they don't or can't give to what you think is the greatest cause of the week. Despite what you may think, guilt is not a particularly good motivator. "Oh gee! I read this thread about bone marrow and someone said that she couldn't believe my gall that I found a reason not to donate. Now I REALLY want to go out and have needles painfully drilled into my hip!"
I mean, I want everyone to stop driving SUVs, start using biodiesel, and hand out condoms in high schools, but expressing my unending horror is not giving the earth (or anyone else) any hugs.
(No one wants my marrow. *sobs.*)
posted by grapefruitmoon at 12:03 AM on February 15, 2007 [1 favorite]
Just as an FYI: If you're in the UK it's the Anthony Nolan Trust. I registered a few years ago (after a friend with leukemia had a transplant, and I thought it would be good to do something in his memory other than just hand over cash). I don't think it cost anything. I just had to go to my GP and get them to take a blood sample.
posted by handee at 1:42 AM on February 15, 2007
posted by handee at 1:42 AM on February 15, 2007
Excellent point, grapefruitmoon. And it doesn't necessarily stop when you do give. I just about fucking lost it when two Amnesty canvassers snarked at me for not stopping to talk/donate, when:
i) I am a paying member,
ii) I stop to talk as often as I can but I was in a hurry, on work time, (I stopped the previous day to chat with a different pair on another corner)
iii) I've done that fucking job and I never had the gall to judge somebody that way with so little information
If I wasn't committed to the organization, that would have ended my support right there.
posted by dreamsign at 1:44 AM on February 15, 2007
i) I am a paying member,
ii) I stop to talk as often as I can but I was in a hurry, on work time, (I stopped the previous day to chat with a different pair on another corner)
iii) I've done that fucking job and I never had the gall to judge somebody that way with so little information
If I wasn't committed to the organization, that would have ended my support right there.
posted by dreamsign at 1:44 AM on February 15, 2007
foxy_hedgehog: to the best of our abilities, the data is stored securely behind multiple firewalls, database proxies, ssl, secure id, etc. We had several security consultant firms come in, and they all gave us their seal of approval. Like I said, confidentiality is a huge issue for us, both on the donor and patient side.
As grapefruitmoon said, there is a health screen questionnaire that you need to answer. We use it to ensure that you're healthy enough for the process, and that the stem cells that will be transplanted will be OK for the patient that will receive them. I don't know exactly why epilepsy would exclude someone (concern for your well-being through the donation process?), but all of the questions are created by our medical staff to address real concerns.
posted by Read at 6:16 AM on February 15, 2007
As grapefruitmoon said, there is a health screen questionnaire that you need to answer. We use it to ensure that you're healthy enough for the process, and that the stem cells that will be transplanted will be OK for the patient that will receive them. I don't know exactly why epilepsy would exclude someone (concern for your well-being through the donation process?), but all of the questions are created by our medical staff to address real concerns.
posted by Read at 6:16 AM on February 15, 2007
Thanks, Read, for this- and for your help and advice on this thread in general. The random emergence of experts in all sorts of miscellany from their nodes in the fray is always so delightful.
posted by foxy_hedgehog at 6:45 AM on February 15, 2007
posted by foxy_hedgehog at 6:45 AM on February 15, 2007
Ditto foxy_hedgehog; I never fail to be amazed at the wide diversity of knowledge among Mefi members.
posted by ThePinkSuperhero at 8:11 AM on February 15, 2007 [1 favorite]
posted by ThePinkSuperhero at 8:11 AM on February 15, 2007 [1 favorite]
If you don't wanna pay the 20-50 bucks, maybe they figure you wouldn't be committed when the call comes.
That's what I assumed. There's a number of ways to determine if someone is committed and humping themselves out to the local office is one. If they've chosen a method that involves not leaving the house then this is probably not a bad one to help determine if they just found a button on a website and thought "ooh, fun" but lack any willingness to follow through.
Read, if you're still following I'd suggest you add the condition for tattoos to http://www.giftoflife.org/donors/8.html which seems to be the same as blood donation - 12 months deferral. Someone's more likely to be inked than they are an epileptic, which is called out specifically in that list.
posted by phearlez at 9:14 AM on February 15, 2007
That's what I assumed. There's a number of ways to determine if someone is committed and humping themselves out to the local office is one. If they've chosen a method that involves not leaving the house then this is probably not a bad one to help determine if they just found a button on a website and thought "ooh, fun" but lack any willingness to follow through.
Read, if you're still following I'd suggest you add the condition for tattoos to http://www.giftoflife.org/donors/8.html which seems to be the same as blood donation - 12 months deferral. Someone's more likely to be inked than they are an epileptic, which is called out specifically in that list.
posted by phearlez at 9:14 AM on February 15, 2007
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