Free marrow-donor kit and registration
Tamu sez, "The National Marrow Donor Program is running a campaign from May 5 to 19, but I don't feel they are really emphasizing that registration is free to the first 10 000 people who register with them online during this period. In a previous BB post, a woman really wanted to help and said she couldn't afford it.
This enables people who want to get on the registry who haven't been able to afford it to reigister online with a cheek swab kit, WITHOUT EVEN LEAVING HOME.
Ethnicity plays a huge part in matching. My brother's search led me to discover there are only 1633 people registered in Canada who are of African descent. There are only 233 registered people in Canada who are Chinese. The matches from these people are going to come from other countries... maybe. The US has a severe shortage for many donor pools and needs to diversify their donor pool as well."
Link (Thanks, Tamu!)If you are not a US resident, this is still important information. Even if you do not live in the US, people who register in the US could save the life of a person anywhere in the world, maybe even where you live. So tell someone about this.
The National Marrow Donor Program (NMDP) has finally included the details of free registration during its Thanks Mom campaign.
During the event, costs to join the Registry online or at a bone marrow drive are paid for by generous partners and contributors so that it is
Free for the first 46,000 people who join the registry via the NMDP.
This includes the first 10,000 who register for a kit online.
In the US, you get the inside of your cheek swabbed. You get a kit at home or you go to a sponsored NMDP bone marrow drive.
To register online or find the nearest NMDP bone marrow drive, go to www.marrow.org.
See also: Seeking marrow donor for animation writer/blogger Emru Townsend
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Hmmm, my mother and I have been registered donors in the UK via the Anthony Nolan Bone Marrow Trust for many years. No charge to register either...
It's important to donate, if you can. Even donating blood for a stem cell transplant or for standard blood and platelet transfusions is encouraged. At this very moment I am sitting in the transfusion area of thge Blood and Marrow Transplant Group, Northside Hospital in Atlanta; I am prepping for a stem cell transplant, which takes place Friday. For the record I am very grateful to have found a donor, as this should very well save my life.
Donate today and save a life. :-)
Hmph. When I registered for the NMDP, I had to have blood drawn. These kids and their cheek swabs...
I ponder this periodically. I'm a regular blood donor (every other month) and platelet donor (when I can get to a center which has the pheresis machines). But marrow donation -- if you're ever called -- is a somewhat more serious commitment. Not as high as surgical organ donation, certainly, but not quite as safe as blood donation.
On the other hand, it's a much more direct life-and-death contribution. So maybe it's worth that higher commitment.
I do find the concept of charging people to register a bit odd. Yes, there's a bookkeeping cost. But it seems to me that this ought to be borne by the recipient, if you want to encourage donors. Unless you're actively trying to discourage folks who aren't seriously committed...
And for those that live in Canada,
http://onematch.ca/
This is the Canadian bone marrow and stem cell sign-up site. Always has been free. Fill out an application online, someone will call you to confirm your address, then you'll be sent a cheek swab kit in the mail. Swab your own cheeks, drop the results in the mail, and you're on the list (and, in case you're worried, always free to decide once a match is made whether or not to actually donate).
Please everyone register to be a donor. This promotion through the NMDP is wonderful. For those who miss their window and still want to register, you may like to know that some states in the USA; Massachusetts, New Hampshire, and Rhode Island; have laws which require your insurance provider to pay for the cost of the initial testing for a person to be registered with either the NMDP or the Caitlin Raymond International Registry.
Once you are a registered donor you may be called on for additional testing to determine if you are a match for a patient. These tests will generally require a blood draw.
If you are determined to be a close enough match for a patient there are 2 methods for obtaining your bone marrow. The first is the Marrow Collection, which is procedure where, in essence, a big needle is stuck in your hip and stem cells, in the form of bone marrow are extracted. The other method is a peripheral blood stem cell collection, of PBSC, which involved giving the donor a schedule of drugs to increase the concentration of stem cells in the blood stream and they a collection very similar to a platelet collection occurs; where the blood is taken from one arm, filtered and then returned to the other arm.
Either of these collection methods can be highly unpleasant. However any unpleasantness on the part of the donor will hopefully be outweighed by the knowledge that your discomfort is saving another human beings life. I hope you will all consider becoming a registered bone marrow donor.
I'm gay, I can't become a donor, even if I am HIV- and have been in a monogamous relationship for many, many years.
"If you are at risk for HIV (the AIDS virus) or hepatitis, you cannot be a donor. NMDP guidelines regarding HIV and hepatitis are based on the Food and Drug Administration (FDA) requirements for blood donors."
Thanks, Cory! My kit is in the mail.
Disneyboy, being homosexual should not disqualify you from becoming a bone marrow donor. This is a draconian interpretation of the FDA's regulations. Homosexuality is still considered a high risk behavior, but it should not exclude you from donation if you are HIV negative. I know this to be the case with CRIR but i would
I had the amazing experience of being an unrelated Stem Cell donor. During college, I took advantage of a sponsored drive by NMDP (free to donors). Several years later, the Dana Farber Cancer Institute tracked me down to inform me that I was a potential match. A few weeks later, I became a stem cell donor for a 59-year-old male with Acute Myelogenous Leukemia.
Over the following weeks and months, I received several anonymous (screened by NMDP) letters of gratitude from his family, giving me updates on his progress.
12 months after the procedure, both donor and recipient have the option of disclosing their names and contact information to the other. I received a form through NMDP with my recipient's name and contact information. He was a retired schoolteacher in Southern California.
Long story short: He went on to survive over six years cancer-free. Each year, he celebrated the anniversary of the Stem Cell transplant as his new lease on life. We remained in touch and shared family pictures and updates - I sent pictures of my son, he sent pictures of his grandkids. I even had the opportunity to meet him (and his wife) while on a business trip to that area. Sadly, he passed away last year.
Now given, not every transplant works out so well. But it's an incredible feeling to be given a chance like this.
Moral of the story: I encourage everyone who's eligible to be a donor to register! It could change someone's life... including your own.
I wanted to join the list more than a decade ago but was somewhat hesitant. My buddy (he and I both donate blood) said he'd go too. We attended a background meeting, registered, and they took a blood sample. Seven or eight years later, my buddy got *the* call. A few further tests to confirm a full match and he was selected. Right up to the point where you make the appointment to go in for harvesting, you can back out. But once you agree, they start destroying any remaining marrow cells in the recipient. His marrow was harvested and flown to the recipient's hospital for transplanting.
After a year, if both parties want, they are put into contact with each other. My buddy has met (several times) with the recipient's family. The meetings, not surprisingly, are somewhat charged with emotion. He is still somewhat reticent about talking about it. His attitude boils down to "it was an opportunity to help; of course I did it; wouldn't anyone?"
I am more than a little surprised that there is a registration fee in the US (perhaps you can write it off in your tax return). Even so ... it's a small price to pay.
Me? I never got called and have passed the age where they will use me as a donor (60). So, if you're worried about making the donation, take a friend -- maybe your friend will be the one who gets the call.
@Disneyboy (#7)
As #9 pointed out, I don't think being homosexual will preclude you from joining the marrow donor list. I am not permitted to give blood, because I've spent too much time in the UK (moo! I've got mad cow! maybe). I put that information into my bone marrow donor application form, and the nurse that called me said that if a match is made, the recipient & their doctor will be made aware of that, and they'll be able to decide whether or not to take my marrow at that point.
I suspect that if someone had the choice between dying a horrible cancerous death, and accepting marrow from a guy who happens to have romantic relations with guys, they'd take the marrow.
Please register for this.
Due to cost constraints, the marrow registry doesn't have nearly as many people as it should, making the odds for producing a match are still far lower than they should be.
A successful donation *will* directly save the recipient's life.
@#5: My cheek swab kit is on its way to me. I donate blood regularly, so Canadian Blood Services sent me a Onematch brochure in the mail. I signed up that very evening.
Schmod, unfortunately you can't be as definite as you seem to be. A successful donation has a very good chance of saving someones life however once the transplant has taken place it is still a rocky road to recovery. From statistics i have seen of survival numbers after transplant it appears that only 60% of transplant recipients survive more than 5 years after transplant. This is still a HUGE chance to save someones life.
I registered to be a bone marrow donor 4 years ago(almost to the day), out of gratitude to everyone in general and no one in particular after getting out of a long, bad marriage cleanly and quickly. It took less time than a blood donation, and if I was charged to register, it must have been pretty cheap because I was broke and unemployed at the time. I've never gotten 'the call', and since my parents are an unholy hybrid of two very different ethnic groups, it's unlikely that I ever will. However, I feel better whenever I read about some kid with leukemia desperately trying to find a match. I know I've done the least I could do, which is to register.
I never realized there was a cost involved. I registered for free years ago during a drive to help a coworker (no match was found for him, unfortunately).
I never thought about the mix of ethnic groups causing a problem for matches, either. Maybe that's why I've never been called (all European background, but my anscestors pretty much cover *all* of Europe).
Hmm, as a gay man I always assumed that the same stupid reasoning applied to bone marrow donation as to blood donation. I can't give blood because I react badly to the process (my blood pressure crashes), but I wonder if I can donate bone marrow?
Red 16:
FTFY#12: I lived in northern Cambridgeshire for 3 years at just the wrong time. Now, even vampires shun me.
@DisneyBoy, dmatos, guydmmann, Xopher:
According to Running a Hospital, the national marrow donation program follows the Red Cross blood donation rules, and does in fact prohibit "[men] who have had sexual contact with another male, even once, since 1977."
So why is the guy holding an RSS logo?
Phillip, et al, I just went and did some asking of questions and yes you are right the NMDP does not allow homosexuals to register. However, if you would still like to register, are gay and are in the US, you can register with the Caitlin Raymond International Registry. CRIR has no restriction based on sexual orientation.
Yay, my kit's in the mail, too. Good job, Cory. If one of us who signs up 'cause of your post gets the call, Boing Boing might well save a life(or more). I surely hope so.
I understand that the Red Cross rules come from the CDC, and the reasons they haven't changed even though ALL blood is now tested for HIV are entirely political.
Maybe this will change after January 2009.
Excellent! I am so glad this was posted - my kit is in the mail! I just used up ALL of my medical budget for 2008 on a repeat mammogram after I had a "questionable" screening mammogram a few weeks ago. The 'blip' turned out to be nothing, just a healthy lymph node in a funny place, but it cost me nearly a thou to find out.
Point is, I was still thinking about registering but the $50 fee to do so was more than I could shoulder.
Having been through a scare like that abnormal mammogram, as a single mom, I was really thinking how much every year matters to the people who love you. My kids need me so much, I mean, really need me. As I was waiting for the results of the repeat scan, I just kept thinking (praying?) "Just 10 years, I just need 10 more years so I can get my kids through high school." I'm so glad for this chance, I hope I match somebody and can give them as many years as they need.
Damnit! I'm too young!
I'll have to wait and pay the fee in 9 months.
As I'm legally an adult in my home state (17, I am independent if I choose to be and I can donate blood), this annoys me. Not as much as it may annoy anybody who's a match, I'd suppose...
Damn. There went my last excuse...
Kit is on the way. :-D
I couldn't find any information on the CRIR's policy concerning homosexual male donors, but I am on the road to confirming it for my own satisfaction and to be able to give the information to others.
Canada just imposed a ban in January at the governmental level, even though the organ and tissue banks did not have a say in the matter.
I disagree with the ban for a number of reasons, and it is ironic that I have to tell some of my friends they can't donate. Thank you to all who pointed to CRIR's policy. I will follow up on this.
Please remember, even if you live somewhere where you cannot donate because of these discriminatory laws, you can still RECEIVE.
Well, I for one don't want gay marrow. Didn't you hear about the woman who started acting like a man when she got his heart? Yeah? Well what if all our men got gay marrow! We'd die out as a race! Gays shouldn't be allowed to donate blood or marrow or anything except to other gays. Contain the infestation, it's policy for all other diseases, why not this one?! Any gay man or woman who thinks they're going to give -me- their dirty marrow has another think coming.
Oh shit, I kissed a chick. It's got me! Go on, guys, before you breathe my air! You'll get it too!
you can still RECEIVE.
I hope that was the pun I took it as. If so, I applaud you sir.
#22 Aeflash: The guy holding the RSS logo is my brother, Emru. He has acute myelogenous leukemia (AML), and a condition called monosomy 7. One of his symptoms is diabetes insipidus (unrelated to type 1 and type 2 diabetes).
While AML is a common form of cancer, there are under ten reported cases of a patient with this triumvirate of conditions, and he is extremely resistant to chemo.
Emru is an animation and technology writer and blogger. He is co-chair of an international computer animation festival. He is a science fiction, animation, comic book, and computer geek (which is why I we get along). He is a father, brother, and friend.
He is now a bone marrow registry awareness activist. He is trying hard to find his match and increase his odds, but he is also trying to find matches for people we have met along the way, and those we have never met.
As with many other cancer patients he has undergone chemo and lost his hair after each treatment. He continues to blog about bone marrow drives and stories he finds in the news. So a bald dude holding an RSS logo kind of fits the theme. This graphic was made by our talented friend Matt Forsythe.
This is a picture anyone can use to link to his blog. We also have a page that isn't linked to the site yet of RSS feeds of bone marrow drives by state.
Tenn,
Ha ha! Unintentional. Although I'm a woman.
Bellamama! I was thinking of you and hoping that you would read this entry.
It is great to know you could do this without having to sacrifice something else.
So, what privacy measures are enacted regarding my submission of DNA evidence? I'm all for a worthy cause, but how is this differentiated from an FBI crimelab forensic database?
That's a disturbing question.
Cory, it's nice to see this post here. I work for the National Marrow Donor Program, and was the lead developer for the online registration site you'd use to join. Tamu, I hope your brother can find a match soon - I know it's hard to wait. While I'm here, maybe I can clear up a couple of things.
As Tamu mentioned, minority groups have the hardest time finding a match. While we do typically charge for joining the NMDP's registry, we are focused on minority recruitment, and minority volunteers are usually able to join for free or at a reduced cost. For the Thanks Mom drive, we've waved the recruitment fee for anyone that would like to join.
The $52.00 that you would normally pay goes towards the tissue typing we do on all of our newly recruited donors. This allows us to help patients search our pool of donors so that they can find a potential match. Other typing costs and any transplant-related expenses are paid for by the patient.
As far as confidentiality goes, we have strict guidelines that prohibit anyone from using any samples for any other purposes other than helping a patient find a match.
Please tell a friend. It's quick and painless to join, and you could be the person that saves someone's life. I've been waiting for the call.
Tamu,
But madam doesn't have quite the same ring to it!
Women? On the internets? UNPOSSIBLE.
Also, "guidelines" sounds much less secure than, say, "one-way hash".
EFERGUS3,
That wasn't a typo. Although they were married in a church by a religious authority, anyone who saw them arguing non-stop or watched me and my siblings wrestling in the dirt would conclude it was an UNHOLY hybrid that they created.
CHRISP,
My parents met at a fraternity/sorority mixer in the late 50's. Her family were West Texan Latinos, and his family were VERY impoverished aristocrats from central Europe. A romance novelist couldn't dream up a more improbable mix. From what I've read, Latinos have a very, very low registration rates both for bone marrow and for organ donations, while mixing two very different genetic pools makes for more complicated tissue matching. But this is America, and my family can't be the only weird one out there, so it may help someone.
Red, the number and name are ABOVE the post they refer to here. That was me who "corrected" your comment. I didn't think it was a typo. I was consciously trying to reframe.
Red Fury!
You are EXACTLY the type of person the registries are searching for. Specifically because people of mixed ethnic backgrounds are the hard people to match, the more that are on the registries the better their chance.
Learn about MatchMaker here.
I'll never understand why they don't pay you for donating marrow, but to CHARGE you seems criminal.
The $52.00 that you would normally pay goes towards the tissue typing we do on all of our newly recruited donors. This allows us to help patients search our pool of donors so that they can find a potential match. Other typing costs and any transplant-related expenses are paid for by the patient.
Processing, Agent. Other services get monetary donations that handle the paperwork and labwork. Marrow doesn't, I imagine.
Still, I'm sure they charge the patient for the marrow itself, why not take out the fees from that?
I'm all for saving a life, but I realize our entire medical field is set up to make money, and I find it disingenuous that the system charges me money for something that will make them money.
If they were truly interested in saving lives, they would make the barrier of entry as low as possible.
Still, I'm sure they charge the patient for the marrow itself, why not take out the fees from that?
Because the typing has to happen before the patient pays, because not everyone typed is used. The costs would be prohibitive because a relatively small percentage of those who are typed actually end up being useful. Therefore all marrow-recipients would see a rise in their costs disproportionate to how many people actually -donated- marrow.
There are opportunities on other occasions (maybe not of this scale) in which people can provide a sample free of charge, but *someone* will pay for it, even if it is not the person registering. This is why donations are constantly requested by registries. Many current and past patients do donate for typing. Any time a person enrolls online using a promo code, someone has paid in advance, usually a friend or family member who knows a current patient looking for a match, or through fundraising for that person.
You know it is free in my country, but that means everyone still pays, just through taxes. The cost spread out across millions of people, doesn't make it so bad. But it is something anybody could need at any time, so it makes sense.