Fees waived for US marrow donation signups
Help Emru Heal Someone sez,
Beginning June 8, the first 46000 people to sign up to the National Marrow Donor Program in the United States can do so for free. While there are ways to register for free or at a lower price during the year, you often have to know the ins and outs, and it is uncommon to be able to register online and get a kit sent directly to your home at no charge. For those who are eligible, the most daunting part of considering becoming a donor are the unanswered questions and misconceptions of the registration, matching, and donation process (which is why I have linked to the NMDP's FAQ).FAQs about Joining the Registry (Thanks, Tamu!)Here are some things you may or may not know:
-Over 70% of people will not match someone in their family and will search for a registered stranger to be found as a match.
-In most of North America, you can register using a simple cheek swab test to determine your profile.
-Most people will never donate, because it is very hard to find a match, but the procedure is low-risk and not lengthy.
-Your ethnicity plays a large role in determining a match. Many people are in underrepresented donor pools, but no one is guaranteed a match.
-2 in 10 patients with active requests will find an unrelated match.
Previously:
- Seeking marrow donor for animation writer/blogger Emru Townsend ...
- Marrow donor drives in San Francisco and Boston - Boing Boing
- Free marrow-donor kit and registration - Boing Boing
- Restaurant lays off waitress who shaved head for cancer charity ...
- Journo's last wish is for more marrow donors - Boing Boing
- Stem-cell trachea transplant was endangered by EasyJet: "your cell ...
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Woah.
I'm utterly shocked that such an important service isn't *always* free...
I've been on the UK marrow donors register for years. If you are in the UK, go to http://www.anthonynolan.org.uk/ to find out how.
(And whilst you are at it, why not find out about blood donor sessions in your area - especially if you are "O" negative, the much sought after universal donor)
In the last two years a close friend came down with leukemia, none of his family matched so they went to the national donor program. They found a match, did more testing, confirmed it, and he had to endure some rough rounds of chemo before finally getting the transplant early this year. It seems to have worked and his most recent tests have been very positive and he is recovering. It's amazing that this is even possible. Please take the time to sign up. You really might save someone's life.
Although I am reading the FAQ, it'd be really outstanding to be sure I had the correct link to get a free test kit. Can you please provide this link, rather than the FAQ?
I answered my own question. Here's the proper link: http://www.marrow.org/HELP/Events/Marrowthon2009/index.html
Let me get this straight: you have to pay to donate marrow in the US?
Your healthcare system is a humourless joke.
I just sent in my cheek swaps to join the Canadian registry last week.
Americans are weird. Paying for blood and charging for marrow?
I signed up. If someone needs my marrow they can have it. I wish I could donate blood, but I get really sick anymore. It is odd that you normally have to sign up for this and they pay you to give plasma. This seems like a far bigger life disruption. I don't care about getting money or anything, it's just really odd.
#5 & #6:
We just don't want no goddamn government ran pinko universal european socialist style health care system…we'd much rather imprison, abuse, and otherwise kick the citizenry to the curb for the benefit of the rich…
ah, yeah. we're kinda fucked up.
i am a card carryin' donor! a woman at work needed a marrow transplant and luckily i work for a company that covered the fees of EVERYONE who wanted to be tested. (it's a nominal fee anyway i believe. 20 or 30.00). unlike giving blood, you can even be a marrow donor if you have brand new ink.
the initial submission is painless. it is indeed a cheek swab. even if you're called, the first testing is rather painless as well.
there is NO reason for most of us NOT to be some kind of donor or another. (i'll get off of my soapbox now)
oh and p.s. i believe the fees cover the actual matching of the donor swab.
I joined >20 years ago; I was a student then, couldn't afford the requested donation to get added to the list. It's not like blood typing where one falls into discrete types; instead, marrow typing looks at the antigens on the surface of white blood cells (IIRC), which fall into a large array of different categories. Incidentally, you can ask the bone marrow donor center through which you registered for a copy of your HLAs; you can look these up and see which horrible genetically-linked diseases you might get in the future. You can look up stuff like HLA DRB3:
http://www.genecards.org/cgi-bin/carddisp.pl?gene=HLA-DRB3
Yay! Grave's disease risk!
On the subject of the fee, so what? I'd gladly pay an annual fee to keep my name on the list and have the chance to actually save someone's life someday. How many people can truly say they've made that kind of difference?
It's often free for minority members because of the lack of such donors and the subsidization of the registration fees by various minority related groups. If you're a minority, do a search for a registration event near you and find one that matches your ethnicity.
I understand it's kind of absurd to have to pay to be a donor but $50 or so pales in comparison to the cost of donating your blood or marrow. Then again I bet that's enough of a barrier to stop a very large number of people from donating.
When looking at the bigger picture though, I would imagine that this sort of fee is a stumbling block that keeps thousands of people from signing up to the list that would otherwise be happy to donate.
Any philanthropists out there willing to set up a trust to pay for registrations in perpetuity? The registry FAQ says it costs roughly $100 per registration.
I wonder how many people try to join this list annually?
Thank you so much for posting this. I've been donating blood since the day I turned 18 (some people buy smokes to celebrate, I drove down to the Red Cross) and I have wanted to get on the donor list for bone marrow for years, but the cost has been prohibitive. $52 doesn't seem like that much until you're a poor college student!
Minutes after I read your entry, I'd zipped through those forms and legal bits as fast as I could read and requested my kit. Here's at least one more person who is now on the donor list.
Thanks again, so much.
Count me as another who's stunned that you have to pay to join the donor registry. Not everyone is as altruistic as Brad S (#11); in fact I'd say very few are. If you're trying to build a database of healthy size, especially with the chance of a procedure as intrusive and painful as marrow extraction, the least you could do is make registration free.
To #11 and #12 and anyone who doesnt see: PAY for being A GOOD HUMAN BEING?
Are all of you americans plain crazy??????
Okay, okay, okay, you've twisted my arm. I'll say the same thing. Why the hell do you have to PAY to provide a public service.
The issue of the cost is irrelevant. This smacks of sheer stupidity. Getting people to donate bits of themselves is hard enough. Putting a pointless barrier in front of them is moronic.
Who the hell thought this was a good idea?
I know that all the people in the USA don't vote (why the hell not? Australia has compulsory voting! I'm all for that. You should be MADE to vote and if you don't, you should be prevented from approaching any elected official with any form of complaint. You didn't do you bit, so why the hell should they do anything for you...) and that all the people in the USA are not responsible for this (same as any country)...damn, my points concluded now. I was going to say "Do something people" :)))
Oh well. Please lobby your whoever to have these things changed so that ALL people benefit.
Sincerely, I applaude the attitude of people like Brad S but am still amazed you have to pay to register.
Is it really a dirty communist idea to syphon off a fraction of your taxes to pay for this service..?
I wonder if the fee might decrease the number of people that register but wouldn't be that serious about actually donating if they were matched - since it's more intensive than giving blood. The registry still has the expense of processing and matching them. I can see where they developed this very low barrier, with chances to have it waived.
I too cannot understand why this would be a chargable service? Does that go for Organ donor lists? How about giving blood?
I registered a year or so back, thanks to a posting about free donor registration on this very site. I don't know anyone myself who has ever needed marrow, but I do have close relatives who have benefited tremendously from donor plasma, and the fact that you can help save lives by donating blood, plasma, marrow that you have to spare is incredible.
Added bonus? I really liked getting to stick the bio-hazard container with my cheek-swabs in the mailbox. I'd sign up twice if I could.
Just signed up! I've wanted to do this since I turned 18, but in my case as well, the cost was prohibitive. I'm Asian, too, so I hope some good will come of this. Thanks so much for the info! I'm passing it on to all my friends.
Thanks for bringing this to my attention. The registration was quick and easy, and my typing kit is already being shipped to me.
Organ and blood donation are free for the donor, for those asking. When you give blood, you get cookies, juice and a sticker. With organ donations, these are bequeathed to your next of kin.
I signed up for the registry decades ago, I think it was either free at the time, or someone local made a donation to foot the bill.
For foreigners, be aware that every time you shake your head at our health care system, the sane people here bang our heads on the wall at it's insanity.
The $52 fee for tissue typing is explained here:
http://www.boingboing.net/2008/05/05/free-marrowdonor-kit.html#comment-181099
This seems astronomical to me (a Canadian citizen and a US Resident.) I understand that tissue typing costs money, but why isn't a certain portion of donations received by the American Cancer Society (or other cancer-related charities) going towards paying these fees? I'm happy to report that it is free to join the marrow registry in Canada. You can do so here: http://www.onematch.ca/
During last year's "Marrowthon" in May, I signed up for free and one year later (also 2 weeks to the day my father died of cancer) they called to tell me I'm a potential match for a man with leukemia. (I am currently awaiting the results of the blood test to see if I am the best potential match for this man.)
When friends found out I had joined the registry, they couldn't believe it. Why would I go through all that for a stranger?, etc... etc... Even after I dispelled all the myths and told them how easy it was, all but 2 or 3 of them said they could never join. I had to convince my husband to join by saying "imagine it was me whose life depended on a stranger's bone marrow?". Very sad how many people aren't willing to give a little time and a little discomfort to save someone's life.
There's another bone marrow registry, DKMS and to my knowledge they don't charge for registering.
I signed up for the registry at a recent donor drive for the 5-year old son of some old friends, Hope For Kai. Please consider signing up and getting in the registry. Lives really do depend on it.
I signed up in South Africa about 10 years ago. It's free. They do a blood test and you get a card with your blood type info. I guess if you're a potential match they'd do more tests but you don't have to pay. Weird.
More details on the Sunflower Fund and the SABMR (South African Bone Marrow Registry) here.
I also signed up last year during the free registration period as advertised on this site. Since many people have brought up blood donation, I wanted to point out that even if the Red Cross will not allow you to donate blood (and there are many disqualifiers-- recent tattoos, travel abroad, past medical conditions, etc.-- you may still be able to donate marrow. I had to call in to discuss my medical history with them but they were exceedingly helpful in discussing potential problems and then following up. I was thrilled I was able to join the registry, and urge everyone to do so.
Thanks to BoingBoing for posting this, and to everyone who signed up. My mother died of a myeloproliferative (bone marrow) disease a little over two years ago. Coincidentally, June 8 this year would have been her 60th birthday.
Subsequent registrations will be sponsored by a new MTV segment: Pimp My Marrow
I signed up for this years ago when I was fresh out of college. Would you believe that the bastards actually had the temerity to call me a few years ago and ask me to donate?
Seriously, there are a lot of horror stories about the invasiveness of the donation process, but when I did it they collected stem cells instead of the marrow itself. They shot me up once a day for a week with stuff that made my marrow go into overdrive and shed stem cells into my blood. Then, after a week, they harvested the cells. I sat and watched John Wayne movies while they ran my blood through the machine a few times, and that was it. Apparently, I am a very good stem cell factory.
I was warned that for the week I was shedding stem cells I would have "significant bone pane". This translates to feeling like you're 105 and not getting more than a few hours sleep a night when the pain settles in your back. All in all, though, it seemed like a small price to pay.
A+++ Would donate again.
I've been donating for years, and also ran several dozen blood drives at my last company (which was large enough to warrant sending a bloodmobile out to)
One of the other very important points, made just above (thank you Anon), is that the older marrow donation method, which involved large gauge needles being punctured through bones, usually the pelvic ridge, are not the methods generally used anymore. You're injected for a couple days with a drug to push stem cells into the circulating blood, then hooked up to an apheresis machine for an hour or two to centerfuge out the stem cells. I've been hooked up to apheresis machines over 200 times in the past 18 years, and it's a very big non-event (except for the helping save lives part, of course)
Many blood banks will also have programs to cover the screening costs, though it tends to be more fully covered for some ethnicities, where the donor base is much thinner. You can always ask.
Part of what's under-appreciated about blood donation of any variety (red cell, platelet, plasma, stem cell, etc) is the skyrocketing cost of testing, along with shrinking donor pools due to restrictions. Some years back when tighter restrictions on travel/residency in the UK and europe were introduced (BSE concerns), it disqualified several whole percents of the eligible US donor pool. At Stanford hospital, where I generally donate, the original blood center building is now almost entirely taken up wiht test and processing equipment. It's the reality of the system, especially now with tight money everywhere. It seems morally wrong to be charging marrow donors for testing, yet a bankrupt blood center can't test *any* samples.
Anonymous @ 31, I'm getting over the flu and had significant bone/joint pain for the first couple days. It was miserable. But I could have dealt a lot better with it if I could've been saving someone's life by going through it.
I joined the marrow registry last time they had a free drive like this. Haven't gotten called yet, but I would be kind of excited if I did. And just to note: if you do join, remember to update your contact info with them whenever you move or change phone numbers. It would be awful to find a match and then be unable to get in touch with them.
The Marrow Donor Program at Rhode Island Blood Center holds drives and registers people at no charge with the help of sponsor Michael's Fund of Fall River, Massachusetts.
The Marrow Donor Program at Rutland Regional Medical Center in Rutland, Vermont also registers donors at no charge - they fundraise year round to cover the cost of the tissue typing so there is never a cost to someone wishing to join.
Please feel free to email with any questions regarding marrow donation at jstpeter@ribc.org.
Thank you so much to everyone who has registered! You could be the match that saves a life!
Jennifer St. Peter
Recruiter,
Be The Match Registry
Rhode Island Blood Center
I tried to sign up, and was turned away for being gay. I have to truthfully answer the "have you had sex with a male (even once) in the last five years" question.
Why yes, yes I have. In my almost seven-year monogamous relationship with my partner. We've both been tested numerous times, and are both HIV-, but the assumption, I suppose, is that gay people aren't trustworthy, or are too promiscuous, to simply trust our answer about whether we've tested positive or not.
So, just like with donating blood, something I first did when I was 16 and not yet out, I can't help. Thanks to the red cross and all that follow their donation guidelines.
Joined up because of this. It's ridiculous that you need to pay for this usually. As a mixed-ethnicity sort-of-latino, apparantly my bone marrow is in high demand. Yay!
My favorite bit of the donor registration was the text buried in the fine print that said something to the extent of:
"If you do not keep your contact information updated we reserve the right to contact the RCMP (police) to find you in event of a bone marrow match"
I can just imagine the officer at my door. "Come with me sir, you need to donate your marrow..."
This is fantastic! It should be free all the time. The only tragedy is that they don't mention that all patients that cannot find a bone marrow donor can easily find cord blood matches for a transplant. Thousands of adult patients in the US are being sent home to die every year because they don't have a bone marrow match, but they don't actually need one. I know because I was one of them. Thank God a European doctor enlightened me and I immediately found a hospital that did adult cord blood transplants. I was one of the first in the US, but there have been thousands since. Still, so many people are dying due to ignorance. Please check out my story at www.drewfoundation.org, and read about cord blood at www.mycordbloodinfo.com.
Eric Drew
#35: Fortunately, unlike with blood donation, the rules on marrow donation aren't set in stone by the FDA, so alternative registries allow gay men to register. I'm gay, and registered with the Caitlin Raymond Internation Registry which is run by UMass. I encourage everyone to support CRIR and avoid any registries affiliated with the NMDP's homophobic policies.
#35 and #39
I completely sympathize with how you are feeling. It is difficult to hear you are unable to register due to, what I believe, is a lifestyle you are born into. That being said, please don't take the policy of excluding homosexual males as a homophobic policy. It is simply a matter of statistics. The FDA, who creates policies which organizations must abide by and after much research, has determined that homosexual males have a rate of HIV / AIDS which is past a threshold considered an "acceptable risk" for the patient in need. Please note the policy is not "homophobic" as gay women are not excluded due to the very low rate of HIV / Aids within that demographic.
I understand the argument that tests may show #35 to be HIV negative, but we must also understand how HIV tests work to understand the policy. When HIV is first transferred it can have a dormancy period where the disease is inactive. While inactive, the body does not make antibodies to this new invader. Most HIV tests are antibody tests where they are looking for the antibodies produced once the HIV goes active. Therefore, if you are infected, and the disease is still inactive, it is likely you will get a false - negative test. As dormancy periods can last as long as a year, in some cases, there is a risk. There are some tests called NAT tests which can eliminate this risk...but they are very costly and can still result in false - negatives. As a result of all this science, the policy of disallowing homosexual men from joining stands as a safeguard for patients in need. There was a period of time where the FDA was considering removing this criteria as the homosexual male community was seeing promising drops in the HIV / AIDS rate. Unfortunately the rate suddenly sky-rocketed. So please note this can change, but a reduction in the rate must go down first.
Please also note there are other HIV / Aids risk factors which can be excluded. For instance...no matter what sexual preference you have, if you have had sex or lived in particular countries during certain periods of time, you are considered ineligible. This is due to the extremely high rates of HIV / AIDS in those countries. If you have any risk factors for CJD or "Mad Cow Disease" you are considered ineligible.....this can be just living in a country where the disease was during particular time periods.
People are considered ineligible for many reasons. It is not a comment on lifestyle or an irrational fear. These policies are put in place to guarantee we are giving the best possible product to the patient in need. Policies are not changed due to social outcries or claims of homophobia.....they are changed once rational argument can be backed by research and science which show reduction in risk factors.
As the FDA ultimately dictates the rules by which the marrow programs must submit, I do encourage you to engage them in conversations with the hope of changing their rulings, but it seems having a commentary within the gay male community may make the change quicker. Reducing the rate of disease in the community will make a change in policy far faster than beating your head against the FDA wall.
This all being said, there have been institutions which have barred donor registration drives on several campuses over the last few years. It is in response to any groups being excluded......primarily due to the policy of disallowing gay males. While I agree that it is every person's rite to be heard and to make a case, please note this policy does nothing to hurt the organization trying to host the drive. Who it hurts are the thousands of patients everyday who look to the registry to find a donor.....particularly minority patients. Colleges and campuses are an incredible place to recruit donors. They normally have a high concentration of ethnic diversity and young people who are desired demographics as donors. Young people simply give very strong cells and are on the registry for a long period of time once recruited. So by banning donor drives on campuses we are taking away from the donor pool and ultimately the patients desperately searching for a donor. Those who die looking for a match do not die because they did not have a match......they die because their match had not signed up yet or had not been given the chance to sign up.
As stated earlier, minorities have a much harder time finding matches as the diversity in the registry is not where it needs to be. Most people find the best match from their own race / ethnicity. Campuses are a great place to make outreach to minority communities to educate and encourage registration, but with campuses closing their doors to registration events, it is more difficult to diversify the registry and ultimately ending this health disparity.
I bring up these last few paragraphs to caution on how arguments, rational or irrational, can actually harm people. Claiming an organization is "homophobic" based on a policy you do not agree with / don't understand, can cause grievous harm to those patients out there desperately searching for someone to give them a second chance at life. A patient who has to rely on the kindness of strangers to give them hope...a a patient who hopes that today is the day their match.....a patient who prays they will never hear, " I'm sorry there is nothing else we can do"......a patient who some may claim they wish to help but who are ultimately harmed by the policies they helped to enact. Yes...please voice displeasure with policies, but please make sure you engage in a conversation first before calling for institutional bans that only hurts patient you wish to help in the first place. I realize no bans were called for here, but broad based claims of homophobia can lead in that direction.
To the argument of why it costs to get registered. When you sign up to donate organs there is no testing involved. You simply sign a piece of paper and get a pretty sticker on your license. At the time of death testing is done to see if your organs can be used for patients on the list. When that happens there are charges to the patient for the transplant. This helps to cover that testing cost. When you donate blood it does not cost anything for the donor, but there are costs incurred. The blood bank then sells the blood to the hospital to cover the costs they incurred during the processing. They do not sell at a profit.
When it comes to marrow registration, we know it takes millions of people on the registry to have enough donors to cover every patient. There are over 11 million people on the registry right now, yet we still need more. This year, nearly 10 thousand patients will need a transplant but only a little over 4 thousand will receive one. As a result, the marrow program cannot use the same policies as the other 2 donation institutions. A relative few donors this year will be called to donate. The bone marrow program cannot place the testing costs on those 4 thousand patients who will receive a transplant. Roughly 500 thousand donors will be registered this year....at $52 per test,...that's around 26 million divided among the 4000 recipients. That's an additional $6,500 added to the already burdened backs of each recipient.
Trust me in that there are several ways throughout the year for donors to get registered at no cost to them....but don't be fooled in that it is free. Someone had to pay. It could be government funding through the taxes we all pay....or a fundraiser done by a family who have a loved one needing a transplant......memorials after patients have passed.......funds collected in the glass bowl at previous drives. As a non profit organization, the marrow program is not in the business of making money so that they can cover all these expenses.....it takes fund raising of some sort. There are appeals which go to philanthropic organizations continuously but as of yet there is not enough to cover everyone. In most cases the cost is really $25 if you get signed up at events in your local community. To me this far more doable than the $52. If there are groups out there that do wish to donate to help the marrow program in offering no cost typing for new donors they are happy to receive whatever they can. You can do this by going to foundation.marrow.org.
you know what? with all the doctors, hospitals, etc. charge the bone marrow RECIPIENT for the transplant, you would think they would pay/donate/waive the donor fees so more people would register and MORE PATIENTS WOULD RECEIVE TRANSPLANTS.