Bone marrow donation?

[frustrated_lefty]

Dragonbreath's earlier post on blood donation brought this to mind. For various reasons I've recently become interested in joining the bone marrow donor registry. Many of the questions on the questionnaire are the same. For marrow donation, though, it turns out the donor has to pay $60 upfront to be HLA tested prior to placement on the registry. Presumably, the cost is do to the need for individual testing as opposed to batch testing for things like blood, but this still strikes me as whacked. Has it always been like this? It seems perverse to require payment for the privilege of subjecting yourself to a painful procedure for another's benefit. I'll shell out the $ after tax returns come through if need be. In the meantime, though, is anyone aware of a more affordable means of HLA testing which would meet the requirements for donation?

fl

[trotsky]

1. Sometimes there are registration drives

where an individual or group puts up most (sometimes all) of the pre-screening cost. You might want to check with the local group that collects it and find out if they are aware of any such events coming up.

I agree, this is not something that donors should have to pay. But the typing they have to do is very expensive, and they just don't have a lot of money to work with.

[NanceGreggs]

2. I've been signed up as a potential donor ...

... for about twelve years now. Because I live in Canada (universal health care), it didn't cost anything to sign up.

I thought this thread would be a good place to post what information I have about the procedure.

I have a friend who has donated bone marrow THREE times - and is always hopeful that he'll be called upon again. There is too much misinformation about it, so I thought I'd pass along his experience. The procedure itself, he says, is NOT painful; you're in hospital, and supplied with the same kinds of local anasthesia as for any other surgery.

After all three of his donations, he was back at work within forty-eight hours. He said there was some achiness in the hip area, but nothing that wasn't handled quite effectively with over-the-counter pain medication, like aspirin or Advil.

I don't know if it's the same in the States, but my friend was able to send a letter to the recipients; it was up to them if they wished to correspond with him, or keep their anonymity. A sixteen-year-old girl responded to his letter, in which he'd said: "If you suddenly develop a craving for take-out Chinese food and classic black-and-white movies, that'll be ME."

The recipient kept in touch with him over the years, and when she got engaged, she asked him to come to her city (about 500 miles from here) to meet her fiance and give his 'approval'. She also invited him to the wedding, and introduced him as 'family'.

This young man was only thirty when he'd already saved three lives.

So please don't be put off by stories (often highly exagerrated) about donating - besides, what's a little discomfort when you can actually save another person's life!

[leesa]

3. HLA testing costs thousands of dollars. Believe me, you are not

paying the cost of HLA testing. The actual transplant donation itself is usually done peripherally through the veins in your arms these days and not in surgery through the bone in your hips. There is little pain involved but there is a time commitment. The reward can be tremendous. If you truly want to donate but do not have funds, I suggest you contact the National Blood and Marrow Donor Program (NMDP) or the Leukemia and Lymphoma Society (you can google them) and they can help you out with some funding.

[frustrated_lefty]

4. Good information and suggestions.

Thank you. In recent months I've had a sort of wake-up call, done some serious re-evaluations, and started putting together a mental list of things I could be doing (but haven't) which would tangibly, practically help people in genuine need. Marrow donation, in retrospect, seems a stupid thing not to do. Sixty dollars doesn't seem like much, but the cost is actually prohibitive for my family at this juncture.

fl

[dddem]

6. I got screened at bone marrow drive.

They don't even take as much blood as they do if you go to a blood drive. Maybe if you contact the National Marrow Donor Program @ www.marrow.org, they can put you in touch with someone who has information on donor drives. I've been in the registry for a few years now, and although I've never been called, it feels good to know that if needed, I can help.
Good for you!

[Spinzonner]

9. Are you sure you're not talikng about Blood Cell Donation

which is related but not the same as Bone Marrow donation:

http://www.marrow.org/DONOR/abcs_of_donation.html

Bloood Cell donation involves taking a drug prior to donation and that gives me some pause though the donation itself is easier and safer.

[pitohui]

5. my friend got paid to donate her bone marrow

but this was many years ago, do they not have such programs any more?

it just seems screwy to me that everyone profits off the donation, the insurer, the doctor, the hospital etc. except the person who actually made the donation

[frustrated_lefty]

7. Pay opportunities exist for research purposes.

I've done that before, which was performed through the hip using a syringe. Claims that it isn't that painful seem odd. Three years later I still have a dull ache. Maybe it varies from case to case. The needle didn't hurt at all, it was the suction from aspirating the marrow.

That aside, there are plenty of research programs willing to pay donors. For medical purposes, though, pay is prohibited. You don't want to create a situation which promotes a black market.

[Spinzonner]

8. If you make Apheresis blood donations

through the Red Cross they will ask (in my experience) if you are willing to have your blood HLA typed and submitted to the Registry. There was no charge associated with this.

It is not a complete typing (when I joined) so they may call you back in the future for another sample if you are a partial match for someone.

[Lisa]

10. maybe it depends on the organization? I'm on the donor list ...

I signed up through the Canadian Red Cross's Unrelated Bone Marrow Donor Registry (now run by Canadian Blood Services) and there was no charge. We just had to promise to give blood once a year, to stay on the books, and to let them know if we changed addresses. Surely there must be a US organization which doesn't charge a fee.

http://www.bloodservices.ca/centreapps/internet/uw_v502_mainengine.nsf/page/CBS%20Bone%20Marrow%20Registry