Note: Be the Match is only available for people living in the United States.
Be the Match is a sign-up list for people who would be willing to donate life-saving bone marrow to a compatible patient. The way it works is that once you sign up, you are mailed a swab kit which you rub on the inside of your cheek and send back. Be the Match keeps your data on file, and whenever somebody needs a bone marrow transplant, they scan through their database to find compatible donors. If it's you, you get a call.
The sign-up process takes maybe an hour including the time spent mailing the package. Be the Match estimates that the entire donation process, if it ever occurs, takes 20-30 hours spread out over 4-6 weeks, including phone calls, medical appointments, and the donation itself.
Let's say the average person reading this post can make $25-$50 an hour. That means they are spending the dollar equivalent of $500-$1500 to save one life, in the event that they are called upon to donate. I'm relatively new here, but my understanding is that that's reasonably competitive. It also takes the form of hours instead of dollars, which might make it more viable for some folks (and maybe less viable for others).
You can sign up here. Happy donating!
Note: If you are 45 or older, then there is a $100 registration fee (otherwise, it's free).
Note #2: Down below, user HaukeHillebrandt has pointed out a reason why this might not be as great as it sounds, and user MichaelStJules has pointed out a similar reason (see third bullet point of the linked comment).
Thanks for posting about this. I spent some time looking into bone marrow transplants a few years ago when a friend needed one.
I'm on the register, and I would donate if asked to. This is definitely at least partly driven by my personal experiences, but aside from that I suspect that for anyone who's not self-employed or doing direct work (or studying) it probably makes sense to join the register from a cost-effectiveness point of view.
Some useful considerations, at least some of which haven't already been mentioned by other commenters:
Other data points from various sources that would be useful for a cost-effectiveness estimate on this:
I've considered doing a cost-effectiveness estimate on this but haven't made time for it for various reasons; please let me know if you'd be interested in seeing it written up or writing it up. I have more info I can share which was shared with me privately.
This paper here might have some useful info for a cost-effectiveness analysis (https://link.springer.com/article/10.1007/s11166-015-9222-7) see Table 11 "Benefits and Costs to World Population of 1,000 Additional Adult Registrants"
U.S. Hispanic 0.00538
You'd need ~50k to 100k people to spend 10 mins each to save one life.
As an FYI, the expected benefit here is largely dependent on your ethnicity, and to a lesser extent, age:
1. White Americans/Europeans have very strong chances of finding a match (or many matches), so registering with that background means that you're likely less unique to the existing donor pool. Replaceability can often be high with this sort of background.
2. Those with other ethnic backgrounds can have much more difficulty finding matches. The less common your background (e.g., if you are mixed race, or from a less common background as found in the US, UK, and Germany (the countries which have the most donors)), the more likely it is that you'll be providing a donor where there is not otherwise a good candidate to be found, and thus actually sort of 'saving a life'.
3. Males under the age of 26 are typically considered the best donors, so you should more strongly consider this if you're a young, and/or male (although certainly many donors are used that don't match that criteria). If you're over 65, have a blood disorder, have received radiation, etc. you'll likely be told you're ineligible to donate to non-relatives.
I joined the registry in August 2012. I was asked to donate in April 2020 and did the donation in November 2020. Since I was already a registered organ donor (which should be opt-out, not opt-in… but I digress) it felt like the next logical step. Just a step up from giving blood.
I was actually surprised to be called upon, given the low odds of a match (1/430). And at one point in the process, it felt onerous and I nearly pulled out. But after thinking about how I would feel if I needed a transplant to possibly save my life, I went ahead with it.
The extraction was from my bloodstream (not needles in the pelvis, thankfully). But for this method, I had to receive injections of a drug that increased my bone marrow cell production. It gave me mild flu-like symptoms, which is normal.
It kinda sucked doing this during the heart of the pandemic, before the vaccine was even available to medical workers. I had to wear an N95 all day, and my girlfriend was not allowed in the room with me; usually, they allow a companion. I was also slightly worried about spending a whole day indoors with other people, which I wasn't doing at the time. The fact that it was a medical facility that was dedicated solely to cancer and had no COVID patients helped ease my mind.
It took about 6–7 hours in the clinic. I mostly read, watched videos, and snoozed between visits from the nurse. I required calcium supplements hourly since the centrifugal extraction process also pulls out calcium. My lips would get numb and tingly.
I paid for nothing. All of the tests, screenings, meds, the procedure, and travel costs were paid (including mileage, hotel room, and meals).
As a bonus, I got a comprehensive health screening at a time when I didn't have great medical coverage.
All in all, I'm glad I did it. I think it's worth it for everyone to register given the low up-front investment. Odds are you won't be called. And if you are, you can always decide whether or not to do it at that time.
Some additional statistics that might be helpful for determining the counterfactual impact:
Here's a UK equivalent. They're especially looking for men under 30.
Interesting. Should be noted that this is for people living in the US.
Good point. I'll add that to the post.
If each of those (on average) 800 matches were only 1% likely to donate if chosen, then the probability that none of them would donate would be very small, ~0.03%. The counterfactual expected impact would be much lower than just 1/800; it would be scaled down by a factor of 0.0003.
However, if each were only 0.1% likely to donate if chosen, then you're close to a 50% probability of saving an extra life (or helping an extra person) than would have been saved (helped) otherwise, which would actually be very cost-effective.
FWIW, I was a stem cell donor in March this year.
Here in Norway you can sign up after donating blood at least three times, they take a couple of extra blood samples for the stem cell registry and then you wait for the call. Most people on the list are never matched with anyone. I understand that the registry is an international collaboration, so the patient could have very well (most likely) been from a different country than Norway. I don't know where the patient lives that received my stem cells.
Here's a database of countries and agencies that take part in this international collaboration: https://share.wmda.info/display/WMDAREG/Database#/
I donated through blood, which means I was first treated with injections of growth factors in the four days leading ut to the blood harvesting to provoke the release of stem cells from the bone marrow into the blood. This induce flu like symptoms with neck and back pain as the bone marrow swells up. The first injection my doctor gave me, but the rest I took at home after observing how it was done. On the day of the harvest I went to the hospital and spent about 3h in a bed hooked up to an apheresis machine which takes my blood out one arm, separated out the stem cells and puts the rest of the blood in the other arm.
The day of the harvest was a Monday, and I started feeling sick (the induced pseudo-flu) Friday evening with significant back pain on Saturday, Sunday and Monday, but I was back to work the second half of Tuesday.
In total I think I spent a total of ~30 hours of productive hours (including Sat and Sun), while the Norwegian Bone Marrow Donor Registry refunded my workplace for the 15 hours I was on leave for this. I didn't pay anything in the end, nor got compensated anything else than my normal salary for the hours I was on leave. Some of this time I spent on low productive things like reading books and the rest I spend relaxing, playing computer games or sleeping.
I don't think this was the most effective thing I've done in my life, and I'm unsure it was even better than the expected value of my hours, but I'm confident that was higher than average.
Since I already was a blood donor it was very low effort to registrer for stem cell donation, and when I was a match, the relevant calculation on my part was the time I was going to spend, not the time all non-matched donors already had spent.
I also value that I learned some interesting things about stem cell treatment and stem cell donation in particular, and I enjoyed the experience and the story I can tell afterwards.
While I don't have anything to add to other commentators on the cost-effectiveness estimate, I like this post for several reasons:
Yes, $1500 would be pretty competitive with GiveWell's top charities, and possibly better.
A few comments:
In many, many instances, a donation extends a life in expectation only a small amount vs. not receiving a donation. It isn't "saving a life" in many cases with donation, and for many it's a positive update for their condition, but not a "necessity".
For the time estimate question, this video seems to be saying that donation takes 3-4 hours and recovery is maybe 1 hour. The website gives more information:
The counterfactual comparison is a good point. I couldn't find any information about it on the website, but Wikipedia reports:
Wikipedia also reports that the Be the Match registry has about 16 million members. This means that an average patient might have 800 matches, which bodes poorly for the marginal benefit of joining the list.
The probability of being an HLA match might be a lot lower than 1/20,000. Say that half the potential 16,000,000 donors would renege on donating if they were called, so we actually have 8,000,000 available members. A 1 in 20,000 chance implies that the chance that a given patient has no matches would be (1−1/20,000)8,000,000=2×10−174, when in reality the chance of having a match (probably with a donor who is willing to donate?) is at least 0.01. Maybe 1 in 2 million is more reasonable?
Australian equivalent: https://www.abmdr.org.au/ (They say on this one that you could be asked to donate to someone anywhere in the world, as it's part of a worldwide network.)
I signed up for this a couple of months ago. Pretty simple process, probably the same one that's described above. My main worry was not dropping more than 1/4 of the swabs! (They need three, but give you four in case you drop one as it's invalid if the tip has touched any surface except the inside of your mouth.)
I don't get all the downvotes. Even if this turns out to not be very cost-effective (although maybe the post should be edited to highlight the initially missed considerations), it is helpful for us to see why as something to learn from.
It also makes the forum seem unfriendly to newcomers.
Thank you for these words.
What do you mean by "all the downvotes"? The post has 24 karma on 14 votes. The highest-karma posts on the Forum usually come in at 2-2.5 karma/vote. If we assume those posts have close to zero downvotes, that points to this post (1.7 karma/vote) having... two downvotes, probably?
The post was in the negative for a bit, I think the day that it was posted or maybe the next day.
I considered joining the UK equivalent of this some years ago. I opted not to:
I had to weigh up definitely strengthening my employer's impression that I cared more about altruistic endeavours than my career against a 1-in-800 probability of doing something of value.
We should probably also add the some 799 hours of those not selected * $25 per hour opportunity cost, to the cost per life saved calculation above.
Unless we think they'd be doing something particularly valuable with that lost time, I probably wouldn't. That these people are signing up at all is a sign that they do care about others significantly, but it's not a sign that they care about cost-effectiveness.
EDIT: Also, you have approximately 0 effect on whether the others choose to sign up, so you have no control over these opportunity costs.
Ah, did you mean the time the person who would have donated in your place saves if you donate in their place? That's only $25-$50 per hour for 20-30 hours (+ recovery) for one person, not 799. The other 798 won't save any time, since nothing changes for them.
I meant that, based on Sanjay's info, that only 1 out of 800 people are a match for anyone, and they will spend around 1 hour to fill in forms, do the swap (which in itself creates costs etc.), this should be included in a full costing analysis of the cost per death averted figure and make it no longer competitive with other priority interventions.
If you're chosen to donate, someone else is not, so they save time, although overall, more time is wasted if you don't sign up, because the organization will have to deal with an extra potential donor. Roughly one more person will be signed up in expectation if you sign up, unless you think you have an important effect on others. You're not wasting the time of anyone else who signed up if you sign up, since they were already going to pay that cost.
If you're not chosen to donate, you'll waste your own time, and the time of the organization.
Overall, though, if you're EA-minded, your time is probably worth much more than the average person who signed up, and I think this should dominate time considerations.
Cost-effectiveness analysis looking at bone marrow transplantation often include all these costs (e.g. "The median cost of the first 6 months of care including donor identification, marrow collection, patient hospitalization for transplantation and all outpatient medications and readmissions through 6 months postmarrow infusion was $178,500" https://ashpublications.org/blood/article/92/11/4047/133908/The-Costs-and-Cost-Effectiveness-of-Unrelated ).
Here's another more recent related study that similarly suggests that bone marrow transplantation is quite expensive to treat even for advanced economy standards:
Note that I haven't looked into this very deeply, and this this just a hunch.
Also, again, I agree that sometimes, it can be effective to improve a generally not very effective intervention.
I'm not sure these costs (the $170,000+) should be included, or if they are, they may need to be weighed down significantly. We're not looking at the cost-effectiveness of implementing such a program; we're looking at the cost-effectiveness of an extra person signing up and possibly an extra donation (with small probability). If you want to include the $170,000+, you should ask what else would have been done with that money, because it's not ours to use.
The organization gets it funding from the government and donations.
As I said that in my previous reply, I do agree with you that sometimes it can be very effective to improve a generally not very cost-effective intervention such as this. I also agree that one's marginal time might not be very valuable (yet not zero). So I do agree that in theory this could be a cost-effective intervention.
However, I think the marginal cost per death averted figure above of spreading this meme were overstated for two reasons:
1. Crucially, on the marginal costs:
Assume that including cognitive overhead that it takes roughly an hour for an EA to do the swap (e.g. using the swap, mailing it etc.) and the marginal value of my time on Sunday afternoon when I would otherwise just do something pointless is $10 (this is conservative see http://globalprioritiesproject.org/wp-content/uploads/2015/03/NeutralHours.pdf ).
This buys us a 1 in 800, or 0.125% chance of being a match.
This means we need to convince 800 EAs to spend $10 to find a match. The cost is $8000. In other words, your own probability of saving a life is 1 in 800 but you have to pay $10 for it.
Technically, but less crucially, we also need to add that one EA will actually have to go through the donation process for this to have an effect. 20 hours * $10 = $200. If you're unwilling to accept a 1 in 800 probability of going through the process, there'll be no benefit. For one person that means that we need to add 1 in 800 probability of paying $200 (or 25 cents). So the total for one person comes to $10.25.
We're also subsidizing expensive health care, spreading the meme that this is good, and perhaps in the process displacing more effective treatment, which can do net harm (see https://www.nice.org.uk/news/blog/carrying-nice-over-the-threshold ).
2. Also less crucially on the benefits side: As shown in the papers above the QALYs gained from might not add up to a "whole life saved", which can be seen by their measure "per additional treatment success' ("For patients at standard risk for disease, the treatment success rate was 80.3% for BMT recipients" [...] For patients with high-risk disease, the treatment success rate was 23.5% for BMT recipients"). Then, even after successful treatment, cancers often come back, which reduces the cost-effectiveness ("only 62% of patients survived the first year post-BMT, 98.5% of patients alive after 6 years survived at least another year. Almost 1/3 (31%) of the deaths in long-term survivors resulted from causes unrelated to transplantation or relapse. " see https://www.ncbi.nlm.nih.gov/pubmed/16545726 ).
Worth noting (some of these are also mentioned in my other comment, with sources there):
1. If you're male and 16-30 (a significant proportion of EAs), the chance of being asked to donate is more like 1 in 200.
2. I'd say the time cost of registering is closer to 15 minutes than an hour. Personally I filled in the form at work during my lunch break, and spent a few minutes doing the cheek swab at home.
3. It's not clear that not doing a transplant would be cheaper for healthcare systems than doing the transplant. In general, complications for conditions which would require a transplant can be expensive to treat, and healthcare systems like the NHS would treat them. See the linked Guardian article in my other comment which suggests that transplants could actually be saving the NHS money vs treating the symptoms. Also see the other link that suggests UK transplants from UK donors are much cheaper than UK transplants from foreign donors (assuming these transplants would be happening anyway).
4. I do think health concerns to donors need to be taken into consideration. Most people (90%) can donate in a way similar to blood donation, but 10% undergo general anesthesia. This isn't risk-free, though generally the criteria which filter for suitable donors upon registering exclude people who would be at high risk when undergoing general anesthesia.