Bone Marrow Registry and the associated fees
The many people who have become members of the bone marrow registry after hearing of my diagnosis, thank you. A point of confusion has been the apparent $50 fee associated with the HLA Registry.
Fifty bucks is a heavy charge, especially for a kind act, especially in this current economy.
After a few phone calls, a bit of clarification.
As of July 1, 2009 having a kit mailed to your home through Be The Match has no mandatory fee, any credit card information asked for in the online process can be bypassed without aborting the opportunity to register.
If you are having an issue with the online route, you can search for a Donor Center in your area that performs registration on premise. Depending on the drive distance, and the level of inconvenience experienced online, this may suit you best. Those I know who registered at a center in their area have said the whole process took approximately 30 minutes with no cost.
Community Blood Services, whose headquarters are in New Jersey will also mail out kits—free of charge—to states in the Northeast, which includes all of New England.
For those who have registered and were charged a fee they could not afford, my apologies. If you have not registered please do, and know there is no mandatory fee—regardless of how many times you are presented with a request for your credit card information. If you run into problems feel free to contact me.
For those who are a part of the registry, please take the time to comment on the process below. I’m curious to hear each person’s individual experience.
-MCS
August 6th, 2009 at 4:58 pm
Hi Matt,
I wanted to let you and your supporters know that they can register as life-saving bone marrow donors with DKMS Americas, which is a nonprofit bone marrow donor center. We never make the testing fee mandatory. Donors can register online here: http://www.dkmsamericas.org/marrow-donor-form
We also help friends and family members organize bone marrow drives in their communities in honor of patients in need of transplants. If anyone would like to set up a drive, all they have to do is email info@dkmsamericas.org or call us toll free at 1-866-340-DKMS. A dedicated representative will contact them immediately.
Best of luck. We are rooting for you!
Amanda Nable
August 6th, 2009 at 7:53 pm
Hi Matt:
Saw your note on my Facebook page. Hope you are feeling OK.
Through our Be The Match Foundation and the generosity of corporate and individual contributors, Be The Match Registry covers the costs to join online as of July 1, 2009. IF funds run out, new members MAY be asked to contribute some of the registration costs when they join. But we work hard every day to ensure that anyone who is willing to join the registry can do so without any barriers, including financial barriers.
The total cost for Be The Match to add a new member to the national registry is about $100 — this includes the testing needed to match donors to searching patients and related costs.
We do ask those who can afford it to consider making a tax-deductible contribution — making it possible for more people to join in the future — and help more patients!
Stay strong, Matt.
Lynn Treadwell
Supervisor, Interactive development, Be The Match
Join online today at http://www.bethematch.org/join
August 7th, 2009 at 8:47 pm
Hey all-
So I registered online and although it does ask for a monetary donation, it is completely your choice as to how much you choose to donate. You do not have to donate at all. The cost of processing each kit is $100, as stated in the other posts. If you can donate anything toward that cost, I am sure it is greatly appreciated but again, not mandatory.
August 16th, 2009 at 8:22 am
Like Michelle, I registered online at Be The Match. The kit arrived within a few days and I returned my cheek swabs immediately. While I understand that it takes several weeks to process each sample, I think that I would have liked to received some kind of confirmation that they’d gotten my kit. Sure, this critique probably sounds small and maybe unimportant, but as a friend of someone in that needs a bone marrow transplant I am limited to what I can do to help and want to know that I have successfully joined the registry.
August 18th, 2009 at 12:45 am
Yah I don’t know what everyone else is talking about here, but I had to pay 50 bucks. 50 bucks isn’t a lot of money for this, believe me i blow money on a lot worse stuff. But there was no option, there was an option to donate and then there was the mandatory fee of 50 bucks. I would have to look at my credit card statement to be sure but I think I did that around mid July?
Anyways for you Mattie boy , my experience. The bone marrow people and I got to know each other a little bit. I had a few calls with them talking about when I would get my results. I don’t think the guy was to happy with me, i was working on the hot dog stand mid call. And some guy comes up to me and starts ordering a hot dog so I had put him on hold for a minute. Then i started to get a little pushy about the whole match thing. You know I wanna be a match for anyone i told him. But first things first, I wanna know if I can match up with you. Well idk how they take that sort of thing ova there, its kind of like saying I wanna donate my sperm but only if its wit a fine chick u kno what im saying?
So he told me I’ll get the results in like 6 weeks or something like that. But I’ll have to call them back. Ill keep u posted.
September 21st, 2009 at 6:20 pm
[...] the comment section of another post on HLA registry, a reader expressed concern regarding the kit they had mailed and whether or not it had been [...]
November 1st, 2009 at 4:20 pm
hey Matt I just messaged you asking about all this info sorry for that I just read all of this info and im definatley gonna go on the site now and join I was just gonna ask you though, will their be a way to be donating just for you or is it to anyone i dont get that part? Anyways goodluck I hope u get a match soon! out of all these millons of ppl there isent a match yet? wtf? or the insurance company wont do the dearch threw all those without u paying yourself or something? so confusing it should be simple donate check if ur a match get it done the end and the search no maytter the cost should be COVERED by insurance jesus!!!