I’m cringing on your behalf :eek: :(. Anyone know if a biopsy is even required as part of the process for marrow donation? Typo Knig had to go back for more detailed testing once (I guess the high-level match they do for screening was close) and he just had to give blood. That never went any further - either the more detailed matching wasn’t a match, or it was no longer needed; he never found out.
Let’s see, I fist got the initial letter in March of '06. It was something I felt strongly about wanting to do, so my decision to donate was made pretty much right away.
The battery of tests which included tissue matching blood draws, blood draws for certain disease screenings, an EKG and an x-ray of my lungs, took place very quickly over the next few weeks as they were shooting for a late April donation date. The health of the intended recipicant pushed that back three months so I beleive I was set to travel the following July when he died.
There was no biopsy required on my part.
National Marrow Donor Program employee here, hoping to clear up some confusion.
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Marrow biopsies are a bitch. A doc plunges a scary needle into your sternum, which, by the way, is right above your frickin’ heart? Yeah, that’s pretty unnerving. We don’t do those. Like others have said, when you join, we use a gentle cheek swab to learn your HLA tissue type.
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If you match a patient, and donate stem cells, about 20% of the time, it’s still the old-fashioned marrow donation. The marrow comes from the pelvic bones, and you are under general anesthesia usually, or a local, spinal or epidural anesthesia. Whatever the case, the extraction doesn’t hurt at all (general anesthesia) or only a little bit (local, etc.) at the time of extraction. Later, when the anesthesia wears off, you’ll have some pain, but usually nothing a few OTC painkillers won’t control. But you’ll be stiff, I guarantee it, for a while. Serious side effects are very rare, in the < 0.5 percent range. Most of these are infections at the sites of the needle punctures.
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The patient’s doctor will make a request as to which stem cell source is best for the patient (marrow or peripheral blood stem cells). You will be asked to donate that type of cell. If you decline, the doctor may make the same request of another potential donor, or decide that you are such a good HLA match that the doctor wants your stem cells even though they will be extracted by the doctor’s 2nd choice.* Potential donors may say no at any time to any request.
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If you don’t like needles and would prefer to donate PBSCs, note that is also not without some discomfort. To donate PBSCs, one must take a hematopoietic growth factor drug, which induces the body’s blood stem cells to leave the bone marrow and enter the peripheral (circulating) blood. These are then separated from your blood via apheresis (which uses a needle or two – but smaller than the bone marrow needles!) Every single person who takes these growth factors experiences some type of bone pain. Most pain is mild to moderate – again, OTC pain killers work well here – but for some people this can be pretty bad. There’s nausea and fatigue, too, sometimes.
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I have asthma. I could not donate marrow because I’m a general anesthesia risk. I was diagnosed with asthma after I joined the registry 12 years ago. I could donate PBSCs. Our philosophy is that anyone joining the Be The Match Registry should be medically able at the time they register to donate both types of blood stem cells. This makes things simple for us. We have enough challenges managing a database of 7 million people in a highly mobile society (10-20% of our database needs address updating each year). Imagine if each potential donor also had to be tagged with one or more of several exceptions (willing to donate marrow, but not PBSC; will do general anesthesia, but not epidural; back injury excludes marrow donation, but not PBSC, etc.) It gets way too complicated, way too quickly. You could argue that this is the wrong way to do things, but keep in mind that this nonprofit organization does not have unlimited money to purchase computer systems and the data managers to program and operate them.
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We don’t hate gays. The FDA makes us exclude people with a statistically higher risk of exposure to HIV, the virus that causes AIDS. It wouldn’t be cool if one of our transplants cured little Suzy of her leukemia … only to give her AIDS. Anyway, if you have a beef with this, it’s with the FDA; our hands are tied.
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Asking for a potential donor to pay the cost of HLA tissue typing is a little strange, I agree. But here’s a few points to consider:
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[li]Few people actually do this, as we** are continually soliciting donations to cover this cost. If you call up your local donor center and they don’t have the funds to pay for your tissue typing, get on a waiting list and they’ll call you when they have the money. [/li]
[li]If you do pay, it ensures that you are fairly committed to the idea of donating stem cells. We don’t want people to sign up on a whim, because when a potential donor is matched to a patient needing a transplant, we’d like him or her to be pretty committed to actually going through with the donation. It’s not cool to give false hope to a patient – “You’ve got five potential donors!” – only to have all five back out.[/li]
[li]As another poster said, it’s not practical to pass HLA tissue typing costs along to insurance companies. We are a nonprofit organization, and don’t generally have piles of cash lying around to absorb this cost. (But sometimes we do … like right now! So take advantage of this offer while you can!)[/li][/ul]
- Whether bone marrow or peripheral blood stem cells (PBSCs) are best for a patient depend on several factors. Marrow is still preferred for pediatric patients, who do better with these stem cells – no one knows why. PBSCs are sometimes preferred because they typically engraft faster, that is, they grow and multiply faster in the recipient so the recipient spends less time immunocompromised and susceptible to infections. But PBSC recipients are also more likely to experience chronic graft-versus-host disease (GVHD).
** Actually, it’s our fund-raising arm, the Be The Match Foundation (formerly called The Marrow Foundation), that does the asking. They are separate from us, with their own board of directors and staff.
Just signed up, and the kit is on its way.
This was one of those things I was always going to get around to doing but never did. I’m a frequent blood/platelet donor and sometimes I’d pick up the marrow registry literature they put out next to the cookies and juice at the Red Cross, intending to register, but I kept putting it off. This was partially due to the cost and partially because last time I checked IIRC you had to make an appointment to get a blood draw to have the testing done. But now with the cheek swab option through the mail so no need for an appointment, and especially with the zero cost, I’m in.
Thank you for posting this thread!
Thanks for posting this - I’ve been on the registry since 1994, but this reminded me I needed to update my contact info.
Spiff - thanks for the info.
How big is the database now, and what are the odds a random person gets a ‘hit’ on the database these days?
I got my kit in the mail yesterday!
This morning I swabbed my cheeks. I have the envelope sitting here at work for me to get off my duff and put it in the outgoing mail pile. 
You’re welcome.
Although there are other factors* that figure into it, a simple calculation is this: there are 7.1 million donors listed on our registry, and we’ve coordinated about 35,000 transplants. So a simple division of 7,100,000/35,000 = ~ 202.
So there is about a 1 in 200 chance that you would become a donor. I’ve made this calculation over the years, and it has changed somewhat, but it’s always a long shot – don’t sit by your phone every day expecting to get “the call” in other words.
At year-end 2003, for example, we had 5.2 million listed and had done 17,866 transplants, working out to a 1 in 291 chance of being called.
BTW, your chances of being called and asked to take additional tests because you’ve been preliminarily matched with a searching patient are about double the odds that you will actually donate. That’s because several things may happen that take you out of the running, such as you’re not a true match, you are found to be medically ineligible, you decide not to donate, the patient becomes too weak to get a transplant, the patient dies, or the patient decides upon a non-transplant therapy.
BTW, before I wrote my long reply, I should have remembered that we have a Web page dispelling several donation myths. Interested people can look here for more info:
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- If you have a very rare HLA tissue type, you seldom match up with a donor, because well, you have a rare tissue type. If you have a very common tissue type, you have higher odds that you will match a patient, but in that case, the patient’s doctors will then have many potential donors to choose from. If a search of our registry yields, say, a dozen potential donors for a patient that are all equally matched (same HLA tissue type), the transplant doctors will choose among the potential donors based on other factors, such as age (younger is better), sex (males are preferred over females who have been pregnant because they have fetal antigens still in their bodies), and CMV serostatus (negative is better).
So, to increase your odds of donating, become a healthy, young, CMV-negative male (or a nonparous female) with a kinda common, but not too common, HLA tissue type!
Thanks, but I meant from the patient’s POV. If I go in, needing marrow, and my relatives didn’t work out, what are the odds I’ll have a matching donor on the list?
I see, bup. The answer to that question is somewhat related to the facts I outlined in my post, but there’s an additional twist or two.
Very briefly, if you are white, you have about an 80-90% chance of finding a match. That’s because the national registry of the U.S. – that’s us – recruits among a U.S. population that is still mostly white (about 80%) … and hence our registry is mostly white.
However, we are intensely focusing our recruitment efforts among minority populations, in order to get more minorities registered.
Why does this matter? Because HLA tissue type is inherited, you are more likely to match another person of your same race/ethnicity. A white matching an Asian is not impossible, but just not as likely as two Asians (or two whites) matching each other.
So, minorities don’t do as well in the “odds of finding a match” lottery; they have about a 60-80% chance. That sucks, to be sure, but we are actively trying to improve that. We are hampered by the fact that to get parity, we’d have to recruit a much, much higher percent of each minority population. To illustrate this by example, if we succeed in recruiting 1% of the approx. 240 million whites (80% of the 300 million total U.S. population) in this country to join our registry, we’d have 2.4 million whites registered.
African Americans make up about 12% of the U.S. population, and that works out to be about 36 million. If we recruit 1% of this population, we’d have 360,000 African Americans on our registry. To get parity with whites (i.e., to register the equivalent number in my example, 2.4 million), we’d have to recruit 6.6% of the African American population in the U.S.
That would be pretty damn hard, considering that we have to date succeeded in actually registering only about 2% of the whites in this country. To get three times that recruitment rate in a population that has a very real, and my mind justified, distrust of the medical community is a steep uphill battle.
The good news is that with the rise of cord blood transplants (which we also coordinate*), there is hope for much more rapid progress. Cord blood does not need to be as closely matched to a patient as an adult marrow or blood stem cell donor. So, if a minority patient can’t find a sufficiently matched adult donor, a matching cord blood unit is likely to be found. In fact, 90% of all searching minority patients find at least one matching cord blood unit on our registry.
I hope everyone finds my long posts interesting … I really should get back to my real work here at the registry headquarters!
- In addition to the 7.1 million adult donors on our registry, we have more than 100,000 cord blood units listed.
The explanation you gave is silly and illogical and I suspect the real reasons have more to do with cooties than AIDS. But I will gladly move the blame to the FDA, assuming that they specifically came up with the gay guidelines and not just the statistical part, and that you would not have the same policy if the FDA didn’t make you.