The man with the golden blood | Hacker News Reader

The man with the golden blood

mosaicscience.com

302 pointsColinWright102 comments

Most people who donate blood just go into a pool, but 'directed' blood donations are very interesting.

I found out about directed donation when someone I know was found to be a close match for a baby with Diamond Blackfan anemia. He was asked if he would do directed blood donations to that baby on a regular basis. It was a serious commitment; missing a donation would put the child's life in danger. There were additional sacrifices--he couldn't travel a lot of places (for example, countries with malaria) as that would disqualify his blood.

The happy conclusion is that after five years, the parents had another child who was a perfect match for bone marrow, and after a marrow transfusion the Diamond Blackfan anemia was cured.

I get a postcard whenever they use my donated blood. I wonder how that works, does everyone in a given pool get the postcard?

Just to be clear: when I said "pool", they don't like, blend the blood--I just meant that your bag of blood is available for general usage. They can and do track individual packs.

Regarding the postcard: I have donated in Illinois and California and have never gotten one. But I haven't been able to donate for a few years now because of trips into malaria zones, so if this is a recent thing, that would explain it.

I had this nasty image of a big metal vat of blood being mixed with a giant wooden spoon Willy-Wonka-style.

That would most likely result in another blood contamination scandal similar to [http://en.wikipedia.org/wiki/Plasma_Economy] in Henan China, where blood was mixed in centrifuges to save cost, subsequently infecting large amounts of the affected population with HIV.

But i had that image in my head as well, a big dirty vat of blood somewhere in a dipilated factory building.

Wow.. That's pretty terrible. It seems countries import blood, I wonder what the price they pay for it is, or if there's such thing as "blood farms"..

According to this article, Australia spent $31M in a single year on blood/plasma 'products': http://www.heraldsun.com.au/news/victoria/australias-blood-b...

EDIT: It appears Pfizer and Baxter are the major suppliers to Australia.

Actually, a very small part of every donation is mixed together with that of other donors to reduce the costs of testing if the blood is safe.

Otherwise they'd have to make every test once for every single donation.

I know for a fact that in France they test every single donation, since the "Contaminated blood products" scandal affair in 70'. They even use a 1000++€ AIDS test which can detect HIV within a 3-week time span, instead of 3 months.

Thanks the blood donation tests, I found I had a punctual lack of iron earlier this year.

I donate blood to Red Cross in California (most recently about a month ago) and have also never gotten a postcard, but they do have a pretty cool app now (called "Blood Donor") which tracks your donated blood through the various stages of their system (processing->testing->storage->distribution).

I'd assume any postcards sent out probably happen at the distribution stage, when the blood is shipped out to a hospital as that is a close enough approximation for the time when it will be used.

My local blood bank (in northern Virginia) has sent out post cards when my brother's, my father's, or my blood have been used in a donation. We're only O-, so not super rare but the blood bank does call if we've gone a while without donating.

O- makes you a universal donor, so I'd imagine yours is always in demand.

What an amazing reading experience. So rarely do you see an article with so few distractions.

I wish I had something substantial to add, but I was just in awe by the presentation, the clear-cut contact information and credentials laid out, the pleasant font choices and how the related stories weren't pushed on you as opportunities for ad-rev, but for enlightenment for the curious.

The site is part of the Wellcome Trust, a large UK charity that's focused on improving human and animal health. They're one of largest sources of funding for medical research in the world, second only to the Gates Foundation according to Wikipedia. They're also a bit supporter of open access science journals.

If you're in London, they also have the Wellcome Collection - a medical focused museum that describes itself as "The free destination for the incurably curious". Pretty much always fascinating and worth a visit!

http://www.wellcome.ac.uk/ http://www.wellcomecollection.org/

I was highly distracted by the nonessential photos of bagged blood, which I found super creepy.

To me, sitting in a blood bank, those photos are organized to reinforce the problem of just how many units you have to screen when someone with a rare blood type shows up.

What you do is take blood from one of about 10 small testing segments and mix it with the recipient's serum. If it clots or hemolyzes, that's bad. That's the most elementary method of crossmatching units, and it's often still done just before sending a unit out, because the blood's there to be tested, might as well.

Yeah, in the bottom it says "name changed" so I assume the anonymity resulted in an overdose of stock photos.

Each photo is credited to the photographer listed at the end of the article, so I am not sure what your point is. They were likely all taken at IBGRL, mentioned in the text.

Really interesting situation, and very frustrating that none of the rare blood donors costs can be paid for by hospitals. Seems like there should be some loop hole to get them compensated.

I would think they could just screen frequent donors with rare blood types for infections. Once the donor is known safe, compensate however is needed to get their blood. I believe there are private industries doing this. This one will be opening soon in my town, though I guess just for plasma: http://www.biolifeplasma.com/become-donor/compensation.html

I'm a regular whole blood and plasma donor and I'm quite sure that I'd be much less likely to donate if I was being paid for it. I'm not really sure exactly why I feel that way, but I guess that if you put a dollar value on it I'd be calculating whether it really was worth my time. Right now, because there is no compensation (aside from a muffin and a cup of tea afterwards), I get the emotional benefits of having performed a purely altruistic deed.

You're not alone. I listened to a podcast a while back on this subject, and the reason that the blood "market" runs solely and strictly on donations it's because earlier in history, when the medical establishment paid for blood, they were only able to get skid row types to contribute, and needless to say, the quality of the blood wasn't good.

http://freakonomics.com/2013/06/05/is-paying-for-blood-a-goo...

An interesting point, but for me at least there is a significant difference between earnings and reimbursement. One might be more likely to donate if they're not being paid, but if they knew that donating involved spending a non-trivial amount of money that would not be reimbursed I think it would be a deterrent.

I had trouble parsing this. "People are okay with not being paid (for charitable effort). People dislike not being reimbursed (for charitable effort)."

Reimbursement seems a non-sequitur in the context of donating blood. Without an alternative market for blood, framing it as foregone reimbursement would be actively antagonistic on the part of the charitable recipient [within the culture in my area]. eg, "we could pay you, but you shouldn't want us to."

Unless you are referring to a situation, expressed below, like not reimbursing significant travel expenses for mr blackfan-anemia. It's not clear to me.

I think the situation is about travel expenses, as that's the major issue that the article brings up. It's not an issue for people with common blood types. Just donate anywhere. But for dealing with rare blood types, it might help if rare donors didn't have to pay their own air travel bills.

I am referring to eg. being reimbursed for travel expenses, or any other expenses which would not have been incurred by not donating. Being "made whole" on money you spent.

If someone has to drive across an international border and take a day off work to donate their (very rare) blood, it makes sense to compensate them for their travel costs.

The donor wouldn't have to also be "donating" gas money, just blood and time.

Two other possibilities:

* In the private health-care world, if you're getting paid, you might feel like someone else is profiting off your blood (how else could they pay you?)

* In the public health-care world, if you're getting paid you might feel like money is being ill-spent when it could/should be used to better pay healthcare workers etc. since people are typically willing to donate blood for free.

Except, in most cases you donate the blood to a blood bank that will sell it to wherever it is needed. The blood banks are profiting from your blood and hospitals are ill-spending money. You get the worse of both worlds.

It costs money to keep the lights on and pay employees, refrigeration, databases, transportation (we get blood shipped from ARC three hours away twice a day), etc. And if you're not making money, you're losing money. Money is how societies manage these costs. Most blood banks are associated with a hospital or university. Some centers are free standing, like Blood Source or American Red Cross (ARC), and they are often the ones doing the heavy lifting: managing rare units, sending 100 units of platelets to a disaster zone, etc.

On the flip side, blood banking is a small community. Each chief blood banker knows how much the products cost, often from working on both sides of the transaction at various times in their careers, and they see each other regularly. The head of our blood bank was previously the head of Blood Source. She has obligations to the university to not waste money, and she knows how much it costs to get a unit from Blood Source.

The ceo of the red cross makes $600k, with plenty of the execs making over $400k (form 990 available [1]; page 49). I don't know if I can draw a bright line, but I think that's excessive compensation for running a medical charity.

Let's say that we put a cap in there: no executive in the Red Cross can make more than $200k. Let's further say that, over time, the quality of the executives goes down as a consequence, to the point that the Red Cross is less effective at its mission. So, we have a compensation cap that "feels" more appropriate for a medical charity, but the charity is now less capable of accomplishing its mission. Do you think this is an improvement?

Now, I am not saying this is necessarily what will happen, but it's certainly possible. I also assume that executives at the Red Cross are already making less than what they could at for-profit companies. Non-profits have to compete with for-profits when it comes to employees; that's just a natural consequence of how labor and capital exist in our economy. I think this means that we will sometimes have to pay employees at non-profits more than what "feels" right in order to have good, competent employees.

Let's say we can the glibertarian nonsense, because anything is possible (under your metric of oh, it may not happen... but it's possible). Why, we should pay the executive $10m/year -- because otherwise, the quality of the executives will go down, to the point that the Red Cross is less effective at its mission. I'm not saying this is necessarily what will happen, but it's certainly possible.

I'm actually far from a libertarian. I want strong government regulation in many areas (finance, food, healthcare, etc.), a broad social safety net (which would ideally include government healthcare for all), and I'm willing to raise taxes to achieve all of those.

But we do live in a capitalist society. So we have to, well, live with it. And part of living with it is recognizing that private entities that do work we would typically consider for the greater good of society have to compete against entities that exist for their own benefit. The reason that they don't pay the execs at the Red Cross more is that the rate of $600k is arrived at through a combination of what they have to pay to get a good executive, what they can pay, and the pay cut the execs are willing to take to work at a non-profit with high social value.

My argument is that the pay they've arrived at balances all of those things, and if we tried to cap it, we could harm the mission. Your argument is that the pay they've arrived at feels wrong, and we should ignore the dynamics of the labor market for execs.

They pay nothing for their by far most important input, and in fact actively guilt people into giving it to them. For free.

You also appear to have a, well, econ for the gullible version of how executives get paid. Reality is much closer to managing to stack the board with friends, etc -- read eg Jack Welch.

Your argument about the dynamics of the labor market for execs is specious -- arrived at by assuming the current state, then proceeding to demonstrate the current state is necessarily optimal because we are in it.

Ok, propose an alternative scheme of executive pay. Does it work? How about the head of the French Red Cross or Doctors without Borders: how does their pay compare?

Surely we all expect a charitable organization like ARC to pay market rates for electricity, paperclips, postage, clerical personnel, and medical technologists. Why should they not pay something approaching market rates for executive leadership? I'm certain a corporate CEO of the caliber needed to run ARC would command well over a million in salary plus stock options, so they are already well under the market.

It's one of the biggest global enterprises around. And they work in a very high tech sector.

Those numbers are not really stratospheric, offering less may make the positions impossible to fill.

Not necessarily. This isn't the case in the UK (where I am) for example, where blood donations are taken by the NHS.

Just say keep the money, altruism restored.

Well, truly altruistic until you tell someone that you're a regular blood and plasma donor. But, like said before, you could simply refuse the compensation.

If that would disqualify then so would feeling good about it without telling people, it's the same kind of compensation. And he could even tell people the same thing without really donating, so the act itself is actually altruistic after all.

I'm not sure if that's the same for me. Just feeling good about it yourself says more about how you wish to view yourself as a good or moral person. Telling others about your charitable acts reflects more on how important we find showing that we are good and moral people to others.

Of course I don't intend to bring the character of the parent to question, I think it's great when anyone engages in charitable acts.

It's just interesting to me to think about the fact that compensating someone for what was once charity could dissuade them from donating. If compensation causes you to avoid giving blood, which is saving lives, because you no longer get the warm fuzzies were you ever acting altruistically to begin with?

I don't know.

don't think of it as altruism, then, think of it as the relative values of money and warm fuzzies.

You could still donate for free, of course. Additionally, others would be more likely to provide blood for compensation. The overall supply would be greater.

It's unclear to me why paying individuals with very rare blood types for the blood they provide to the medical industry would in any way alter the landscape of general blood donations. I understand why it's a bad idea to attempt to pay for regular blood donations in general, but rare blood is not a "regular donation" - the individual is in possession of an insanely lucrative product. It just happens to be their blood, instead of something more "normal" like artistic talent.

My wife knew a person in college who got paid for their blood, something like $500 a month. Not enough to retire on, but a nice second source of income.

I would have guessed that the reason for prohibiting payment for blood would be the same as the reason prohibiting payment for organ donations. Interesting that in this case it is blamed on trying to minimize donations from people with HIV.

It's not just HIV. It's any infectious disease (there is a thick book of reasons to disallow a donation). The problem is that these infectious diseases are socially disruptive, therefore these folk, unfortunately, tend to have less marginal income. Therefore, they are exactly the people who would respond to a small monetary incentive. This has been studied. If anyone is acutely aware of the problem, it's blood banks. So this issue is revisited routinely. Here is a recent review on the topic:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847338/

I'm advocating tax deductions as an incentive.

If I give $350 in cash to the American Red Cross, I can take that charitable deduction from my annual filing. If I donate a unit of blood that gives ARC $350 in products, that's not deductible.

The incentive side steps the donor-with-marginal-income problem, unless I'm missing something.

IRS Pub 526 on Charitable Contributions, Page 2:

  Not Deductible As Charitable Contributions:
    Cost of raffle, bingo, or lottery tickets
    Dues, fees, or bills paid to ...
    Tuition
    Value of your time or services
    *Value of blood given to a blood bank*

It's amazing how many details the IRS pubs cover. I like your proposal though.

That's a clever way to pay richer people progressively more for their blood.

Organs don't regenerate like blood does. Blood is very valuable and blood is paid for all the time. The only restriction is on paying the original creator. Once the blood is extracted, it is sold and re-sold for high prices.

That's modern medical 'ethics' for you: damn the consequences, what matters is what it looks like and whether it offends anyone.

No, it's about the safety of the blood supply. It's a weird quirk of human psychology and economics that paying for donations means fewer healthy people and more people with infectious diseases donate when it's fee-for-blood.

If you were designing based on consequences, would covering basic expenses for rare blood donors result in so many people signing up with infectious diseases that it exceeds the deaths from the Rube Goldberg scheme described in OP which limps along with just a few rare blood donors?

I get what you're saying. I'll ask our blood banker when she gets back from ASHI.

For an example of that, HIV likely crossed into the US from Haiti via the blood trade[0][1] which acted as both amplifier and transport after haitians had to leave DRC, and some got infected in the time they spent there.

And of course thousands of haemophiliacs in the 80s got infected with HIV and HepC because of contaminated Factor VIII: http://en.wikipedia.org/wiki/Contaminated_haemophilia_blood_...

[0] http://www.onereads.org/spillover-david-quammen?page=0,208

[1] http://lambsbloodblog.wordpress.com/2013/01/11/hemo-caribbea...

However, that effect does not extend to many kinds of gifts. Which is why I receive some stuffed animal or similar every 10th donation (I politely refuse them, not to add to the waste in the world).

People with rare blood could be gifted things like emergency taxi rides without adverse consequences and it's just bureaucracy, not science, that is in the way.

Just a note about the international travel described in this article : Geneva and Annemasse are twin city and share the same bus system. Thomas in this article could just get into a TPG bus from anywher in geneva and arrive in annemasse hospital less than 40 minute after. (geneva and anemasse are small cities)

However Amsterdam, the other place they mention is a smidgen further away.

It's amazing the Kafkaesque rules that have evolved about blood donation. The article does touch on them.

I'm not allowed to donate blood (any more), for what I think is an absurd reason. I spent a few months in England, over 30 years ago. So now the USA is afraid that any blood I donate will infect America with Mad Cow disease.

If those same rules were applied in the UK, nobody there would be able to give blood. The actual Red Cross text is:

   You are not eligible to donate if:

      From January 1, 1980, through December 31, 1996,
      you spent (visited or lived) a cumulative time
      of 3 months or more, in the United Kingdom (UK),
      ... [1]

Those same rules go on to ban all of Europe from donating blood:

   You spent (visited or lived) a cumulative time of
   5 years or more from January 1, 1980, to present,
   in any combination of country(ies) in Europe, ...

I did get my "gallon pin", which they give out after 8 donations, before the rules were changed. So there could be quite a few vCJD infected people wandering around the USA because of me.

Given the litigious environment in the USA, I understand why the Red Cross has these rules. But it doesn't make sense from a scientific point of view.

[1] http://www.redcrossblood.org/donating-blood/eligibility-requ...

The problem boils down to the fact that there is currently no way to test your blood for blood donating purposes, especially if you're asymptomatic.

I mean, there's this disease, and it kills people, and is known that blood transfusions can infect people and we don't have a test for it. What would you have the Red Cross do?

https://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_dise...

> What would you have the Red Cross do?

I understand that the US Red Cross is in a difficult position. But the health authorities in the UK (who are presumably "closer" to the situation) don't have the same restrictions. Of course that might be simple expediency, since by the US rules nobody in the UK could donate.

As a Brit who has lived abroad.... yeah, nobody wants my blood. Well not the Aussies or Americans anyway.

Hopefully vCJD is played out now. Hopefully.

I wonder if it's possible to create a blood-producing machine (with bone marrow culture and whatnot).

And then by manipulating its genetic code slightly make it produce whatever blood we want. Better yet, take a sample from one perfect donor and make golden blood at a scale.

> I wonder if it's possible to create a blood-producing machine (with bone marrow culture and whatnot).

People have been trying since the 17th century: http://en.wikipedia.org/wiki/Blood_substitute

i was half-expecting this to be about Dr. Kent Brantly (ebola survivor whose blood continues to be used for transfusions)

I thought this was about James Harrison [1], "also known as the Man with the golden arm" according to wikipedia. He has donated plasma more than 1000 times.

Somehow, talking about blood donations is one of the few things that helps my mood when I'm on a bad day. When I donate, I feel that maybe I do matter.

[1]: http://en.wikipedia.org/wiki/James_Harrison_%28blood_donor%2...

My brain is shutting down and I can't parse this phrase.

[1] "If you lack an antigen that 99 per cent of people in the world are positive for, then your blood is considered rare."

[2] "If you lack one that 99.99 per cent of people are positive for, then you have very rare blood."

Surely the author is saying the same thing here?

They're two different official categorizations.

"Rare" = 99 in 100 people have this antigen, while you do not.

"Very Rare" = 9999 in 10000 people have this antigen, while you do not.

That's all it says.

If you lack an antigen, but at least 1 in 100 other people also lack this antigen, then your blood is only of the "Rare" category. If you lack an antigen and you'd have to go through 10 000 other people to find someone else lacking this antigen, your blood qualifies for the illustrious title of "Very Rare".

They are just quantifying the terms rare and very rare.

Rare is 1 in 100, very rare is 1 in 10000.

Defining different degrees:

[1] 1 in 100 --> rare

[2] 1 in 10,000 --> very rare

number 2 has an extra .99 percent, so I guess in point 2, only 0.01 percent of people will have it (whatever IT is), vs 1 percent of people having the thing in point 1.

Missed the extra 9. Read and re-read. sincerely thought he called two identical categories rare and very rare.

Long day

thanks.

For the person in the OP who needed heart surgery and, thus, needed compatible blood for the surgical procedure, why didn't that person just donate their own blood, say, one pint at at time, over some weeks, have it frozen, and then have it thawed out for them just before the surgery?

Or, to take it step further: if you have a rare blood type, start banking your blood early. Makes sense to me.

Anyone else find it odd that he can't donate spare blood for himself? It seems unfair.

The article specifically mentions that he can and has since he turned 18:

> When he turned 18, Thomas was encouraged to donate blood for himself. There is now no frozen blood bank in Switzerland, so his blood is stored in the rare blood banks in Paris and Amsterdam.

And that his approval is required for doctors to draw into his "personal stash":

> Since his blood can be given to anyone with a negative Rh blood type, Thomas could save countless lives. But if he ever needs blood himself, he can receive only Rhnull blood. If he donates a unit for himself, he has to permit it to be used by anyone else who might need it.

The article strongly hints that donations for third parties are not stored in blood banks but donated directly (because fresh blood can be kept for much longer, frozen blood has to be used within 4 days of thawing)

> If he donates a unit for himself, he has to permit it to be used by anyone else who might need it.

That sentence could have been worded better. This is the way I read it:

    If he donates a unit for himself, he must allow it
    to be used by anyone else who might need it.

As I understand, the original is not clear on whether: 1) Any one who seeks to use his blood, must first ask his permission. 2) Donating his blood automatically makes it available to whoever needs it.

I think your rewording still leaves that ambiguity, somewhat (though it does seem better), because i keep reading that as:

> he must allow it to be used..

Perhaps it would have been best to right it to break it down into two sentences.

    He can donate blood for himself.
    If someone needs it, they have to ask for his permission.

    He can donate blood for himself,
    but then this makes it accessible to whoever is in need of it.

I read it as him having a separate personal bank of blood units, that are reserved for his use unless he gives them permission to take from it.

He has to permit anyone - in other words they're not really asking him permission. I read that sentence to mean that he doesn't actually have any say over who gets to use his blood.

No, you are reading that incorrectly. You should email the author and ask him to rephrase it.

Is there another source for this? Using phrases "has to" and "anyone" implies requirement.

In fact, the very next sentence is "This leaves Thomas dependent on other Rhnull donors", which re-enforces my reading of the previous line. If he could have a private stash, he would not be dependent on other donors.

Standing alone it's impossible to derive the true meaning; it's the perfect doppelganger.

Based on the subsequent sentence I decided the author was in fact claiming that he couldn't save blood for his own exclusive use, but then immediately thought that can't possibly be true.

Poor machines will never learn to speak this language!

Fairly sure he's reading it correctly - the article goes on to talk about how he has to depend on other donors, and how he has to be very careful since there aren't any nearby.

The sentence by itself is unclear, but the context of the surrounding paragraph makes it pretty clear that while he can donate blood to have on reserve in case he needs it, he might be screwed if someone else needed it, because he has to allow them to use it.

It's possibly slightly unfair that he's not allowed his own 'stash', but he can only donate a certain amount per year and it seems like it's in demand, and apparently it can only be stored for 42 days (according to a very quick Google search).

> It's possibly slightly unfair that he's not allowed his own 'stash'

He is allowed his own stash.

> it can only be stored for 42 days

Fresh blood can be kept 42 days at 4C, blood can also be frozen and kept for decades (at -80C) or more (virtually indefinitely at -196C) but thawed blood must be used within 48h.

He is allowed his own stash.

Source? The article seemed to indicate that he must permit any blood he donates to be used for other people, thereby implying he may not reserve any of it for himself.

No, I read it as that he donates for himself, but if someone needs blood, and he allows it, they take from his pool reducing what is available for himself.

No it clearly says that if donates blood he "has to allow anyone" to use it. Which is clearly backed up with the next line stating: He must rely on other Rh_null donors if he needs blood.

I am not aware of whole blood cryostorage for use in transfusions after thawing from -196° C, can you please point me to the literature on this?

What I could find via Google searching referred to specimen cryopreservation at this liquid nitrogen-low temperature, and retrieval for future analysis and umbilical cord/placental banking for stem cell retrieval, but not for whole blood banking.

It's not whole-blood it's RBC: http://www.sanquin.nl/en/products-services/blood-products/sa...

AFAIK modern transfusions don't generally use whole-blood, and RBC are by far the most important component for rare blood types issue.

In the article it's mentioned that he donates blood for himself twice a year, and that everytime someone asks for his blood it's taken from "his" reserve, making a more-so difficult choice.

Fascinating article. I was only aware of the 4 major blood types plus Rh±, it's also inspiring the efforts people will make to help others.

Same here. I was vaguely aware there are more but nowhere nearly realized how complex and varied the real situation is. Very illuminating article.

What an interesting read! Thanks for sharing!

Reminds me of James Harrison: http://gizmodo.com/how-one-mans-blood-donations-saved-over-t...

This was a well written and inspiring article.

Reading this made me call the Red Cross and get back into giving blood.

They should clone this guy, just so they can have more sources of his blood type

Could someone explain what is happening on those photos with the blood bags?

some details here: https://mosaicscience.com/extra/inside-blood-factory

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