Crazy about hemochromatosis

   There’s a mutation, fairly common in northern Europeans,  in which homozygotes absorb too much iron. Untreated, iron accumulation can lead to cirrhosis and a form of diabetes.  Treatment is simple: bleed the guy, early and often. It’s one of the few syndromes where old-fashioned medical treatment actually worked – purely by coincidence, of course.

Obvious question: what do you do with all that blood? Obvious answer: After meeting the needs of the creatures of the night, use whatever’s left over for transfusions.

But, in the US and most of Europe, we generally don’t, because we’re nuts.

Ya see, the Red Cross has a policy: donors are not to be compensated, other than orange juice and cookies.  Since these guys (mostly guys, of course, although perhaps that will change now that everyone and his brother can menstruate) need to be bled, giving blood to the Red Cross would allow them to avoid paying some MD to drain them and pour it down the sink – so,  they would in effect be receiving something of value.

I’d like to think that the true motive for this policy is protecting medicos’ income stream – but, you know, their stated reason is stupid enough to be the real one.

 

 

 

 

 

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57 Responses to Crazy about hemochromatosis

  1. cloudswrest says:

    I’ve wondered about this policy. I don’t have hemochromatosis but I am a carrier for the HFE gene (discovered via 23andMe before the FDA ban). My mom is not a carrier, and my dad died at 55 from liver failure. I donate blood quarterly. I like to keep my Ferritin levels in the low normal range. There’s evidence that lower iron levels increase insulin sensitivity.

    You have to fill out a questionnaire before donating blood (drug use? gay sex? hepatitis? Zika? etc.). I have never seen a question for hemochromatosis. They do test your hemoglobin levels with a finger stick prior to donating. I think what’s really happening is most dudes don’t know they have hemochromatosis until their liver starts to go (if even then) and that’s why they are disqualified from giving blood.

  2. teageegeepea says:

    I recall reading about alcoholics giving blood for money and coming up with ways to cheat systems in place to prevent them from donating too much, but perhaps that was before prohibitions on compensation came into place.

    I also recall there being a scifi story about some kind of infection that makes people more altruistic. The narrator insists he’s clean but that he donates blood whenever he can to reduce the chances of someone getting blood from one of the many infected donors.

  3. actually anonymous anon says:

    According to Wiki, prevalence of hemochromatosis is about 1 in 200, this is not “fairly common”.

    https://en.wikipedia.org/wiki/HFE_hereditary_haemochromatosis

    Ya see, the Red Cross has a policy: donors are not to be compensated, other than orange juice and cookies.

    This is good policy. Like it or not, there is large stigma against selling bodily fluids, and in places where donors are paid, people who make quick buck this way are overwhelmingly bums, alcoholics, drug addicts and other derelicts.
    Better to rely on honesty and sense of duty of altruistic volunteers.

  4. P says:

    ??? My cousin has haemochromotosis and has been venesected at the Red Cross for the last thirty years.

  5. Paul Conroy says:

    When I tested my parents over 10 years ago on 23andme, they each carried one Hemochromatosis allele, my father the common HFE, my mother a rarer one.

    Less than a week ago I was talking to my uncle in Ireland and he said that although he’s a Tea-Totaller that he was just diagnosed with Cirrhosis of the liver, and his doctor suggested that since he’s never consumed alcohol, it must be putting too much vinegar on his food. I was quite surprised by that diagnosis. Then I asked him if he had any symptoms of “arthritis”, and he said yes, in his knees, hips and hands mostly. So I suggested he get a Hemochromatosis test immediately.

    My father’s mother suffered from chronic arthritis, which could have been hemochromatosis also.

    • Paul Conroy says:

      The interesting thing is that Ireland decades ago, it was very expensive to buy blood – if you needed it for a transfusion during an operation – but if you could prove that a family member had donated blood, then it was somewhat free, on a system that went something like:
      1 pint donated = 1 free transfusion pint
      5 pints donated = 2 free transfusion pints

      100 pints donated = 20 free transfusion pints

      My uncle actually used to donate a pint of blood every few months, and would get an official stamp on a booklet, per pint. He donated up to the 100 pints mark, then stopped, as that was the limit of the incentives. Which could be when his problems started?!

  6. Blood Donation In The UK says:

    Blood donation on NHS is neither compensated nor requires a charge from the donor in the United Kingdom. Never been either encouraged or discouraged from doing it by an NHS doctor as an identified carrier.

    It seems strange to imagine that blood from people with higher iron levels will be thrown away short of toxically high levels; certainly not something I have ever encountered as a long term (roughly every 3 months, for about 10 years) HFE carrier through years of donating blood. I’d hope they’d tell me if they were pouring it down the drain.

    I certainly wouldn’t imagine that I should be compensated for blood donation of course, even less that as a carrier I should preferentially have to donate and be financially rewarded for doing so. The only preference scheme that seems to make sense is for O group and rare blood groups.

  7. cloudswrest says:

    Interesting factoid I’ve read regarding hemochromatosis, even though it’s a genetic condition, in every cell of your body, a liver transplant is curative (though of course, not for breeding), assuming the new liver is from a healthy donor. It’s a genetic disease with a localized expression.

  8. JRM says:

    The Red Cross depends on the donor’s altruism for the protection of the blood supply. One of the screening questions that the Red Cross asks is “Do you feel healthy and well today?”. That is, the Red Cross is trying to weed out people with an active infection. The Red Cross tests blood for pathogens, but it is impossible to test for all pathogens. Likewise, there is no way to test for all the medications on the medication deferral list – medications which might a recipient.
    The Red Cross wants people who are donating for the good of others. They do not want people who are donating for the good of themselves. If a blood donor was motivated to lower iron stores – that is – to help himself, then some percentage of the population would lie on screening questions. And the quality of the blood supply would be worse.

    The Red Cross accepts blood from heterozygotes and homozygotes because they are not doing genetic testing on the blood. Don’t ask, don’t tell. They just don’t want people who view it as medically therapeutic. They don’t offer much in the way of compensation because they don’t want people motivated by compensation.

  9. Patrick Boyle says:

    The policy of not paying for blood must be new. When I was a starving student I used to sell my blood regularly. I figured that since I didn’t do drugs or have any nasty diseases I was just the kind of blood donor that they needed. This was San Francisco in the late sixties.

    But my girl friend was creeped out by this practice. She wanted all my ‘precious bodily fluids’ for herself alone.

    I have book somewhere that has some thesis about how illness or genetic disease is beneficial or is a marker for some protective adaptation in the past. The first chapter explores the case of hemochromatosis. As I remember hemochromatosis is supposed to have provided protection against some infectious process that once was important. Unfortunately that was just the first chapter. The subsequent chapters couldn’t supply any other good examples of diseases that made you healthier. Sickle cell is another obvious example. But the notion that the principal that we get ill from the body’s attempts to make us well seems to be a minor phenomenon.

    • Rob says:

      Sounds like Survival of the Sickest, by Sharon Moalem.

    • Christopher B says:

      I’m not an expert but I think it’s a Red Cross thing and only involves whole blood. I’m pretty sure you can be compensated for blood components (plasma, platelets, etc) as I have been hearing advertising for such donors for years for companies that collect them commercially.

  10. David Chamberlin says:

    Cochran you keep calling normal bureaucracy function crazy when it isn’t crazy at all, it’s normal, it is what is to be expected. You can rant you can rail, you can beat the drums and play the kazoo, it won’t make any difference. We have a bunch of dim people working together as a shitty disorganized not for profit organization and you somehow expect rational decisions to spring forth when it has never happened and never will. Real startling news would be “Holy Christ, the fools actually did something that makes sense.!”

    But anyway, keep up the rude comments, we love you for it.

  11. TimToc1025 says:

    Here is an abstract from Hepatology (2018). the full article is online

    Abstract
    Hereditary hemochromatosis (HH) is a genetic disorder of iron metabolism that may lead to iron overload. Clinical penetrance is low, however those afflicted may develop cirrhosis, hepatocellular carcinoma, diabetes mellitus, and cardiomyopathy. Treatment of HH involves regular phlebotomy to reduce the systemic iron burden. In many countries—including the United States—numerous blood centers do not accept donated blood obtained from HH patients during therapeutic phlebotomy and there are inconsistent positions regarding this globally. This refusal of blood is borne out of a few concerns. First, there is a theoretical increase in the infectious risk of these blood products, particularly by siderophilic organisms such as Yersinia enterocolitica. Second, given the increased incidence of hepatitis C infection from nonvoluntary donors in the 1970s, there is a concern that blood units from HH donors may harbor additional risk given the nonvoluntary nature of their presentation. In this review, we examine the existing biological and clinical data concerning infectious risk and summarize clinical experience from centers allowing HH donors, and demonstrate that blood from HH patients is safe and should be allowed into the donor pool. We conclude that there is no convincing evidence to exclude this population from serving as blood donors. (Hepatology 2018;67:1150–1157)

  12. Boswald Bollocksworth says:

    In a sane world, blood compensation wouldn’t be done by handing out twenties to random dirtbags who walk through the door and produce a vein, but rather the Red Cross or regional blood banks would establish long term relationships with upstanding citizens. A young man, married, who goes to church. That’s an ideal donor. He should get $100 a pint. I know I’d pay for it if I needed blood.

    Inevitably this would require risk scoring on observable criteria, which would piss a small number of people off. We can’t have nice things, like reliable, plentiful blood supply, because we live in a ridiculous age. Sad!

    • Thiago Ribeiro says:

      “A young man, married, who goes to church.”

      Or, better yet, Catholic priests. Altar boys rarely, if ever, transmit sexual diseases.

      • gcochran9 says:

        The whole volunteer thing is an indirect way of screening against dirtbags, who might be attracted by paying for donations and are way more likely to carry various infectious diseases, many of which were difficult or impossible or expensive to test for, especially in the past. Includes as-yet undiscovered pathogens that are impossible to test for. As far as we know, the blood of altruists is not better, except insofar as they are less likely to be dirtbags.

        The simple question ” are you a dirtbag?” is not that effective a screen, because dirtbags lie. Although many of the factors that predict risk can be taken into account, some cannot, because of legal and social desirability considerations, whose entire purpose is to make you effectively stupid.

        Are hemochromatosis homozygotes more likely to be dirtbags than average? That’s an experimental question: in practice, apparently not. Obvious a priori, though.

        Are hemochromatosis homozygotes more likely to carry infectious diseases due to the hemochromatosis itself? ? This has been looked at: in practice, no.

        So, use the blood.

        • dearieme says:

          “Although many of the factors that predict risk can be taken into account, some cannot, because of legal and social desirability considerations, whose entire purpose is to make you effectively stupid.” Brilliantly indirect.

        • Thiago Ribeiro says:

          Sure, using the “extra” money is the obvious decision, but we were talking about donors in general. If blood donations entitled to monetary remuneration, should anyone be accepted or just people showing some social qualities (being married, attending church, etc.)?

          • shadow on the wall says:

            As Mr. Cochran said, not possible here and now. As soon as you start accepting church goers only and turning back mosque, synagogue, Buddhist temple and Hindu temple goers, there is big fat lawsuit waiting for you.
            (and how are you going to verify whether the applicant really visits church regularly? If there is significant compensation, people will find way to cheat.)

    • shadow on the wall says:

      In a sane world with blood shortage, rational way would be to use prisoners. Pick the healthy ones, keep them isolated in strict sanitary conditions, feed them healthy diet and bleed regularly.
      In our world it would be, of course, impossible – half of population would fear it is inhumane, and other half would fear that getting blood of criminals into their veins will make them criminals too.

  13. steven p says:

    So blood-letting was actually therapeutic… what’s next, trepanation actually stabilises cranial blood pressure…
    Somewhat off-topic story (I like stories): in the UK during WWII there was a shortage of blood for transfusions, so they mounted a campaign to get people to donate. The campaign was very successful, too successful in fact, and now they had a surplus that they didn’t know what to do with.
    Government nutritionist (and later to be Well Known Scientist) Magnus Pyke suggested that the excess blood be made into black pudding. Said suggestion was met with disgust and revulsion and oddly enough was never taken up, Pyke said this was illogical; people were perfectly happy to take other peoples’ blood into their veins but they weren’t prepared to take it into their stomachs.

  14. Maciano says:

    According to 23andme I have an elevated risk score for hemachromatosis. I went to my GP after I learnt this to get a ferritine test, but he didn’t want me test it since I had no problems related to the condition.

    After I kept insisting he agreed to do the test, but I was not allowed to see the ferritine results. It was the doctor who had the authority to see the values and make conclusions, not me the patient.

    • Cloudswrest says:

      WTH? Sounds like it’s time to get a new doctor. In any case you can remove the doctor from the equation with online blood testing. See here: https://www.lifeextension.com/Vitamins-Supplements/Blood-Tests/Blood-Tests
      They provide a lab slip for LabCorp, and mail the results directly to you, and make them available to you online. Technically they have some MD on staff rubber stamp the requests and allegedly available to provide counselling if needed. A ferritin test is pretty cheap at $28.

      • Maciano says:

        Thnx, I’ll do that.

        In the Netherlands it’s extremely hard to get a new GP, they work by a zipcode system and switching means you’d, basicly, have to beg another GP in the area to get admitted, which they often don’t do without extreme hassle like long waiting lists, not allowing your wife & kids to move along to the new GP, etc. (But I am trying btw.)

  15. Beans says:

    Having worked in blood banking for years (a small local operation) I can add some to the discussion. First, every blood bank in the US is overseen by the FDA which is very stringent in it’s requirements and their regular inspections of your facility are very thorough. While the FDA doesn’t specifically say a hemochromatosis patient’s blood can’t be used for transfusion they do require as noted above that the donor is “healthy”. The FDA does not specifically define the term. Too avoid the risk of a potential citation for accepting a donor not deemed healthy by an FDA inspector many blood banks avoid the risk by turning away donors that note that they are donating at their doctors request.

    What blood banks can do is to petition the FDA for a specific exemption allowing them to accept and use the blood of hemochromatosis patients if they or their physician present a prescription from on an annual basis asking that a specific number of donations be done over the following years time. The protocol must be very specific and the donor must still be run through the standard FDA approved donor questionnaire. If the donors answer all questions appropriately the units will be used for transfusion. If any answer is not acceptable for routine donation, the unit is still drawn but subsequently discarded. In our local judgement, the expense of discarding a few units is outweighed by the overall health benefit to our local patient base.

  16. mtkennedy21 says:

    There are a few potential benefits from the disease. A friend with hemochromatosis had periodic liver ultrasounds to assess his liver iron burden. One of those scans showed a right renal carcinoma which was removed ten years ago. Pure luck it was on the right.

  17. Paul Conroy says:

    Idea:
    The heterozygous advantage is greater resistance to Hook Worm (or similar nematode parasite) that extracts blood from its hosts.

  18. Lior says:

    Once again, rejection of free market principles leads to blood being needlessly spilled.

  19. Warren Notes says:

    Q: What do you call it when a transgender woman has a heavy period?

    A: Internal hemorrhage.

  20. I have a colleague–well, he was a colleague but retired last year–with this condition. He’s Japanese American (multi-generation American) and the family joke is “which one of our damned ancestor’s been fucking white people?”

  21. Rory says:

    You say it’s purely by coincidence, but the theory behind bleeding as a treatment is actually correct in this case, no? The idea was that illnesses were caused by buildup of toxic substances and that bleeding would discharge them from the body, which seems pretty close to what’s actually happening.

    Maybe they couldn’t tell it was iron or even tell hemochromatosis from any other ailment, but credit where it’s due, they had the right idea in this case.

  22. “But, in the US and most of Europe, we generally don’t, because we’re nuts.”

    Don’t we? Cos I have a clear memory of working on an enterprise-management system for paid blood-donor clinics in 2010-11. A real low point in my career, and my life generally.

    One of our subject-matter experts described a typical configuration: on every town along the Mexican border, a clinic or two on the first street, a couple more on the second, a couple more on the third. Management made no bones about the fact we were targeting… well, not the creme de creme of high society. There were also lists of excluded addresses (e.g., drug houses), neighbourhoods, and even cities (e.g., New York).

    Nasty business. As my expert said, “Nobody wants to sell their blood.”

  23. Jamie says:

    I’m an HH patient, and I give my blood at United Blood Services. They will accept my blood, and I’m told they can actually use it. The platelets, anyway, I believe.

    All that’s required is a doctor’s prescription so that I can give more often than the standard 8 weeks.

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