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144 thoughts on “The case of chemotherapy refusenik Daniel Hauser

  1. SD says:

    Prometheus:

    “SD, on the other hand, seems to be saying that unless and until the cure rate is 100%, there is no possible justification for forcing a minor to have this treatment.

    Here’s a tip, SD – nothing in real life has a 100% guarantee.”

    I suggested a cure rate of 95% as the minimum cutoff, with a preferred rate of at least 99%. Shit *does* happen, you know. I suggested an even better test: what the doctor will guarantee. I guarantee you that gravity will work tomorrow, and that the sun will rise, and that igniting a mixture of hydrogen and oxygen in a 2:1 molar ratio will yield water vapor. I can promise you all those miracles and more. I’ll bet you any amount of money you want, too, that I’m right.

    “So, although the cure rate for Hodgkins lymphoma (in all children) is hovering around the 90% mark, SD thinks this isn’t enough to justify saying that it’s the proper choice.”

    Oh, I believe it’s the proper choice, all right. But I am not willing to support the use of deadly force to compel this issue. This case is still a little shy of ‘the line’ for my taste, since chemo therapy has such variable outcomes. More importantly, that compulsion has secondary effects which are undesirable in the long run; it reifies certain fallacious beliefs and behavior patterns that lead to far worse than the occasional idiotic screwup leading to death.

    Only a fool believes that there are no second- or higher-order effects of his political beliefs.

    “[1] Children (variously defined as younger than 14 – 18 years, depending on the state and situation, but clearly encompassing 13 years of age) are pretty universally held – by almost every government on the planet – to be incapable of giving legal consent for anything, including medical procedures. This is because they are not felt to have the maturity, wisdom, experience, whatever to make those decisions.”

    No, they’re not. In some cultures, 13-year-olds can be *married*. (Even, strange but true, in some places in the US. Yes, parental consent is required.) In some cultures, a 13-year-old boy is a man, if he’s passed a test of manhood. In other places, a 13-year-old is a soldier, and a fearsomely good one to boot. (The revulsion to this is an exclusively Western and modern concept; the practice has been ongoing since the beginning of human history.) In some states in the US, a 13-year-old can be tried as an adult, and in a few even sentenced to death for a capital crime.

    You were saying?

    “[2] Parents are generally felt to hold their children’s best interests as dear or dearer than their own and are expected to make decisions that are in their child’s best interest.”

    Yes. This is why it is typically considered both counterproductive and despicable to overrule the parent in making these decisions, particularly in life-and-death decisions, for which there are no ‘do-overs’.

    You persist in believing that you are the ‘most right’ – rightly or wrongly – and that that perception of rightness trumps others’ rights. It does not. It is folly of the first water, and does little other than to invite furious retribution from the overruled, make you look like the asshole, and encourage politicians to slide smoothly into the position of ‘managing’ this power-structure to their own great benefit and everybody else’s detriment.

    “As a result, almost every government has given parents dominion over their children, vesting in them the right (and responsibility) to make decisions for their children – unless the parent (or parents) have demonstrated that they are not making decisions in the best interest of the child.”

    Government doesn’t ‘give’ dominion over their children, you ass, parents *have* dominion over the children.

    Rights are not gifts of government. If you believe that they are, I weep for whoever educated you, if you were educated in an English-speaking nation.

    “overall society”
    “norms and traditions of the overall society”
    “government, as the active agent for society”
    “norms of society”
    “current societal norm”
    “society – through its agents in government – is responsible”
    “society currently does not [feel that childhood obesity is a valid reason to revoke parental rights]”
    “We do not tolerate”
    “society has a responsibility”
    “”society” might not agree but has elected to not interfere”

    Ooooooooookay.

    There’s a major flaw in your ethical reasoning, here, youbetcha. You seem to act as though ‘society’ has a brain.

    RULE ZERO: ‘SOCIETY’ DOES NOT THINK. ‘SOCIETY’ DOES NOT ACT. ‘SOCIETY’ IS NOT ‘RESPONSIBLE’. ‘SOCIETY’ DOES NOT ‘ELECT’ TO DO THINGS. ‘SOCIETY’ DOES NOT HAVE RIGHTS.

    You are positing agency on the part of a collective entity, a concept that is goofy on its face. You are positing cognitive activity in something that has no brain, something I’m sure the good doctor will tell you is anatomically impossible. ‘Groups’ do not decide to do things. *Individuals* decide to do things. *Individuals* think, because *individuals* have minds to think *with*. Sometimes what those individuals think is ‘I’m going to follow this guy over here and do what he says’. But there is always, *always* a thought process going on on the level of the individual, and never one *outside* the individual.

    To speak of ‘society’ deciding things, or acting on those decisions, or responsible for decisions or to other parties, or possessing rights, is ludicrous. The insanity can be seen easily by dividing these decisions up into aliquot portions based on the number of people we are positing to be in the ‘society’; do I make one-three-hundred-and-thirty-millionth of the decision about Daniel Hauser, since I’m a citizen of the US? Do I bear one-three-hundred-and-thirty-millionth of the blame if ‘society’ ‘fails’ him? Wait, I think he should have the chemo. Does that absolve me of that one-three-hundred-and-thirty-millionth fraction of blame? But wait, I don’t think that ‘we’ have a say in it. Does that restore that one-three-hundred-and-thirty-millionth fraction of blame?

    What happens when the next baby is born? Does he relieve me of some blame? If ten people vaporlock while I’m typing this, who gets their blame, or vote?

    It is in the shadow of this insanity that such simple rules as ‘let the parent decide’ are born.

    Thorny ethical question: Suppose you run across the wicked Ms. Hauser and L’il Danny at a gas station. You recognize them instantly. You have a gun. Do you shoot Ms. Hauser? Why? Why not? On what ethical basis do you demand that everybody else do your dirty work for you?

    “I would hope that if I ever reach the point where my decisions for my children are that bad, somebody steps in to protect them from my bad judgment.”

    Sign a power of attorney granting your doctor the power to make science-based medical decisions in the event you are unable or unwilling to abide by his judgment. If you demand that someone ‘be there’ to save you from yourself, then surrender *your own* rights.

    “a is a”
    -SD

  2. SD says:

    Govorit Cde. Gorski:

    “But, hey, we’ve tried your sort of “every person a king” society before. It’s called anarchy, and the results aren’t pretty. Perhaps you’d like to go and live in Somalia and experience it for yourself.”

    I’m gonna throw a couple more question on top of this, just because I’m feeling the foreskin crawl up my neck this evening:

    (a) Where have ‘we’ tried ‘anarchy’?

    (b) What were the actual results when ‘we’ tried ‘anarchy’?

    (c) How were they ‘not pretty’?

    Feel free to not answer them. You excel at blowing bullshit, so by all means, don’t stop now. >;->

    “god forbid every man should be expected to mind his own goddamned business”
    -SD

  3. David Gorski says:

    Kid SD,

    Survival statistics for pediatric Hodgkin’s disease from a recent study:

    The OS and EFS in 10 years were 89% and 87%. Survival according to clinical stage as 94.7%, 91.3%, 82.3% and 71% for stages I to IV (p = 0,005). The OS was in 91.3% of patients who received RT and in 72.6% of patients who did not (p = 0,003). Multivariate analysis showed presence of B symptoms, no radiotherapy and advanced clinical stage to be associated with a worse prognosis.

    OS=overall survival. EFS=event-free survival.

    A graph of survival by stage is here. Note that this graph goes out not five years, not ten years, but twenty years.

    B symptoms do result in somewhat lower survival; so it’s not unreasonable to estimate Daniel’s original chances at between 85-90%.

    I can provide many more such studies (like this one or just this webpage, even though it’s not as rigorous as I would normally like), but, quite frankly, I’ve already wasted more time answering you than you as a troll are worth.

    Of course, I did provide the statistics in my post, but you clearly didn’t bother to read it.

  4. David Gorski says:

    I suggested a cure rate of 95% as the minimum cutoff, with a preferred rate of at least 99%.

    Why? What is the science behind this?

  5. vargkill says:

    Gorski, Karl Withakay,

    I think you have both missed the point i was trying to make.

    At what point do you draw the line between what the parents
    want and what is best for the child?

    I say this mostly because the child agrees with the parents.
    It does not matter that he is 13 years old, it matters that he
    agrees and does not want the treatment, so how is it right
    to force him?

    What if he does beat and and is not thankful?

    “These statements imply a false dichotomy where death is the likely outcome regardless of action taken. Your statements ignore the high probability of survival with chemo.”

    No Karl, its a simple concept. Im not speaking against his
    odds of survival, im saying, what if he dies anyways? That
    still holds a possibility, does it not? Nothing in life is 100% guaranteed. It was a statement meant to draw all possible
    outcomes of the situation which could be more then live or die.

    “Are those statements specific to this situation or generalizations about parent’s rights regarding medical decisions for children? Surely there are sme limits to parent’s rights to choose for their children?”

    What do you think Karl? It was a statement about the situation
    in speaking in general. If a parent chooses to have their kids
    walk into fire to burn to death then yes. But as i have stated
    this is a situation where the kid does not want the treatment.

    “The doctors have facts and science that support the claim of a high probability of survival with chemo, if treated in time. The parents have only their faith to support their belief.”

    Thats not the point Karl, the point is personal belief and faith
    within reason. Its not unheard of for people to practice faith
    based healing. It does not matter if you agree with it or not
    it only matters that it is their right and their freedom to practice
    their religion and all the faith based stuff that goes with it.
    If the child was crying for someone to save him then that would
    be a different story. But he clearly is not. So SBM or not, its
    called the freedom of religion. In the United States, freedom of religion is a constitutionally guaranteed right provided in the religion clauses of the First Amendment.

    “He is being deprived, ’starved’ if you will, of treatment that would give him a high probability of survival, without which, he has a very low (nearly non-existent) probability of survival.”

    If he does not wish to help himself because of how his faith
    is based then why is it ok for us to force him? Does this not
    seem a bit harsh to you? You have to want to be helped!

    “OK, by that reasoning, I don’t expect you to cry for him or his parents if he is forced to undergo chemo against his and his parents wishes, as there are people in this world suffering far harsher treatment from their governments than being forced to accept medial treatment intended to save their lives.”

    The whole reason is that everyone says poor kid this, poor kid
    that. As if hes being held captive. I dont feel sorry for him, i really and truly admire him for having such a hard stand faith
    that he would risk his life for what he believes in. The only
    reason i care is because this whole forcing thing bothers me.
    We all assume we are free and claim this is the best country
    in the world. Sometimes it doesnt seem all that free to me.

    That is the kinda shit that doesnt sit well with me.

  6. SD says:

    Govorit Cde. Gorski:

    “I can provide many more such studies (like this one or just this webpage, even though it’s not as rigorous as I would normally like), but, quite frankly, I’ve already wasted more time answering you than you as a troll are worth.”

    Feed me, Seymour. An n=166 study from Brazil isn’t precisely the smoking gun I was hoping for. In fact, what I keep seeing when I look through Pubmed et al. is a series of numbers for overall survival for ABVD that range from 60% all the way to 95%. (I also saw a tantalizing treatment-related fatality rate of 2.9% cited in one study.) I see some pretty anemic p values, too (p=0.66?), although that Brazil study looked pretty good.

    According to your analysis, the kid has B symptoms according to Ann Arbor staging criteria; even in the Brazilian study you cite, his overall survival odds appear to be below 80% (about 75-78%), not the 90% claimed:

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1592540&rendertype=figure&id=F4

    Perhaps I’m wrong, but that graph seems fairly straightforward.

    The conclusion I see from these studies is mostly, “It depends”. And that’s a conclusion I can believe. The eyeball-level “cure rate” for this disease with this treatment appears to be somewhere closer to 80%. Which is pretty good, but a little short of the ‘sure thing’ you’re trumpeting here.

    Now, what you *didn’t* provide: the survival rate/curve for untreated HD. Funny that, huh? (For that matter, what do the radiation/surgery only survival rates look like?) I’ll even provide a number of my own: the Leukemia and Lymphoma Society produces a number (non-scientific, of course, as there is no study attached) of 40% five-year survival for whites with HD as of 1963, which I am going to assume means “untreated” (or “poorly treated” by the standards of today, and presumably without chemotherapy). 40%, huh. That sounds pretty bad, but not quite the “load-all-the-chambers-of-the-revolver-then-play-Russian-roulette” bad that I’ve been hearing. Now, if you have a better number, I’m all ears. But we’ll be using the 40% figure until something better pops up.

    I won’t even bother asking for statistics about CAM treatments.

    So. You’re willing to chuck a mother in jail for refusing a treatment on behalf of her son which grants a grand improvement in overall survival odds by 25-50%, and has an associated treatment-related fatality risk of 3%? Does that strike you as, oh, I dunno, slightly histrionic?

    “Of course, I did provide the statistics in my post, but you clearly didn’t bother to read it.”

    You provided a statement that it was a “lot closer to 100% than 0%”, which, while true, is not helpful, nor supported by an actual study. You jerked a number of 85-90% out of your ass (without support), which then smoothly morphed into 90%, then 95%, then 117%, and so on und so weiter, all the while caviling against how horrible the mother is for not grasping this one and only shot to save her kid’s life (hurry! buy now! limited-time offer!) I submit to you that this overstatement of your case, and this histrionic display, does not do the treatment or the scientific method one iota’s worth of justice. I further submit that the numbers offered most certainly do not seem to rise to a level that would support a reasonable conclusion of using coercion to compel this treatment. While you may hope that everybody else will just ‘trust you’ and take your word for it, handing you the keys to the jailhouse to house parents guilty of malfeasance in your eyes, I submit to you that this is an unreasonable hope.

    I’ll even go a bit further: gee, Comrade. on the basis of the hard numbers seen so far, it sounds almost like you’re mentally cooking numbers to support your conclusion, with decent improvements in mortality suddenly morphing into blockbuster Jerry Bruckheimer-style beat-all-the-odds asskicking victory. Could it be that you’re hamming it up a little bit for the crowd?

    “it’s all in the numbers”
    -SD

  7. pmoran says:

    http://members.bordernet.com.au/~pmoran/Hodgkin'ssurvival.htm

    This may provide another view of the long-term prospects of Hodgkins disease with modern treatment. These graphs include “all comers”, so that this particular boy’s prospects would have been significantly better, if he had continued with chemo once started..

    Your “grand improvement in overall survival odds by 25-50%”, based upon certain conjectures as to five year survival of untreated disease, fails to reflect the full gains in symptom-free life years that treatment can provide. And that has to be compared to the likelihood of a miserable, slow, death within 5-10 years (or much less at the rate this cancer seems to be progressing).

    Your line of argument has force with some cancers but not so much with those that have good long-term disease-free survival rates.

    (I am not supporting any particular line of legal action — I would be trying now to get the mother to place a time-limit on her experimentation with alternatives, at which point she will support the child in proper treatment. The kid may not even yet know that treatment is for a finite period — some assume that it will go on forever.)

  8. SD says:

    pmoran:

    “http://members.bordernet.com.au/~pmoran/Hodgkin’ssurvival.htm”

    This link is broken (seems to be the apostrophe). I do like the rest of that site, though, particularly the “Here’s how you go about making a convincing claim for cancer treatment, guys” bit. Well done!

    I should clarify a bit about the studies I was browsing through: most of them looked like badass attempts to pare the chemo down to the absolute skeletal minimum that wiped out the cancer with the same or greater effectiveness as existing treatments. I find the continued research on this topic immensely gratifying. In fact, highlighting this fact – “Hey, we already *know* this shit is poisonous, and we’re actively trying to figure out how to give you the least amount possible for the shortest time possible without compromising its ability to wipe out the cancer, as well as how to target it so we knock the cancer out on the first shot and don’t have to keep doing it over and over again” – would probably go a long way toward sucking the oxygen out of the opposition. Most CAM practitioners successfully manage to paint the opposition as pompous blowhards who blow off legitimate concerns with subtly specious claims. [SD steadily gazes at Cde. Gorski.] (Cde Gorski himself made a stride in the direction of humanity, promptly followed by an expeditious retreat. Oh well. Baby steps.) I find myself wondering what the state of research into novel delivery mechanisms is; most of the opposition to chemotherapy evaporates when it becomes targeted and not systemic. I’ve heard mumblings about slow-release implants, the aforementioned targeted liposomes and photochemotherapy; have they tried anything a little more clever, like implanted pumps with mini-catheters upstream of the tumor’s blood supply, or anything space-agey like that?

    My personal pet peeve is the irrational fear of radiation, not that the refusal to undergo radiation treatment is in my mind a justification for similar legal sanction. Christ, if they told her they were going to use a hot iron to burn the cancer out of him, she’d probably say “Okay” if someone told her the iron was organically grown or something. Oh no, but throw the word ‘nuculur’ in there, and suddenly it’s like a Hiroshima and stuff, no thanks. Bah. This is why we have “MRI” machines and not “NMRI” machines; god forbid that someone should hear the phrase “*nuclear* magnetic resonance imaging scanner”, and begin quaking in fear that their nuculurs will be resonanced into a black hole and give them more cancer or something.

    “This may provide another view of the long-term prospects of Hodgkins disease with modern treatment. These graphs include “all comers”, so that this particular boy’s prospects would have been significantly better, if he had continued with chemo once started..”

    I imagine so. Half-assing a treatment is not ever a good idea. Better to not even begin it in the first place.

    “Your “grand improvement in overall survival odds by 25-50%”, based upon certain conjectures as to five year survival of untreated disease, fails to reflect the full gains in symptom-free life years that treatment can provide. And that has to be compared to the likelihood of a miserable, slow, death within 5-10 years (or much less at the rate this cancer seems to be progressing).”

    Yeah, but we’re not talking about “improvement of quality of life” here, we’re talking “having a life”. Nobody sends a parent to jail for choosing to send their kid to an ITT franchise campus instead of Princeton, despite the fact that the “quality of life” of a Princeton grad is a lot better than that of someone who went to Matchbook University.

    “Your line of argument has force with some cancers but not so much with those that have good long-term disease-free survival rates.”

    I remain unconvinced that that this particular level of “goodness” constitutes justification for a blanket presumption of negligent behavior on the part of the parent who declines such treatment.

    “(I am not supporting any particular line of legal action — I would be trying now to get the mother to place a time-limit on her experimentation with alternatives, at which point she will support the child in proper treatment. The kid may not even yet know that treatment is for a finite period — some assume that it will go on forever.)”

    Amen to that. I *hope* she pulls her head out of her ass; failing that, I hope that she (and he) get really, really lucky. Sadly, as St. Jagger once said, you can’t always get what you want.

    “saw her today at the reception”
    -SD

  9. David Gorski says:

    Your line of argument has force with some cancers but not so much with those that have good long-term disease-free survival rates.

    Which includes pretty much all childhood cancers. His quibbling over whether it is 80% or 90% doesn’t change the fact that virtually all studies demonstrate that childhood Hodgkin’s disease is a highly treatable tumor with excellent results using science-based medical therapy. In any case, pediatric oncologists who evaluated Daniel estimated his odds at around 85-90%; which is where my estimates started before I went back to look at the literature. If Kid SD wants to see just just how grand the improvements in survival have been for Hodgkin’s disease and other childhood tumors over the last 50 years, he should compare a survival graph for childhood tumors from the 1950s to the current ones. The treatment of childhood cancer is among the most dramatic success stories of science-based medicine.

    As for Kid SD’s whining about the study only having 160 children, the reason is that childhood cancers are relatively rare (a fact for which pediatric oncologists are grateful). He will be hard pressed to find studies that have thousands of patients–like studies of adult cancers–(or even several hundred patients) because they don’t exist. The study cited was actually fairly large by pediatric oncology standards. Yet another bit of evidence for his ignorance of basic oncology.

    In any case, it’s another typical case of Kid SD’s moving the goalposts, which is why I shouldn’t have bothered with him in the first place. He has no interest in being educated. Indeed, in one way he is just like a CAM advocate (or a creationist, for that matter) in that he is looking for little flaws that he can exploit in order to score points and troll. Different viewpoint, same technique. I’ve seen his like many times before.

    By the way, Prometheus wiped the floor with Kid SD. I was duly impressed becauseI just don’t have the patience to bother anymore–if I ever did.

  10. Karl Withakay says:

    “Indeed, in one way he is just like a CAM advocate (or a creationist, for that matter) in that he is looking for little flaws that he can exploit in order to score points and troll”

    funny how it only works one way for him.

    He makes an unambiguous blanket statement like,
    “Because basically every time a bone is set by a competent MD and put in a cast, it will heal without further sequelae. EVERY. TIME” (All cap being his own emphasis)

    And when it is pointed out that this is incorrect, follows up with,

    “I suspect the success rates for the more common types of fracture are real close to 100%”

    He certainly doesn’t seem to hold himself up to the same standard that he holds people he disagrees with.

  11. David Gorski says:

    Indeed he doesn’t. Moreover, the purpose of my comment about nonunion was not to claim that all fractures have such high nonunion rates. it was merely to point out that SD’s “EVERY. TIME.” statement about fractures was ignorant, overreaching nonsense–which it was.

  12. Prometheus says:

    SD seems to be hung up on the idea that “society” exists. While it would be ludicrous on its face to say that a society is different from the individuals who make up that society, there are certain features of “society” that make it reasonable to consider it as a meta-organism separate from its individual “units”.

    This may be beyond the freshman sociology level of SD, but it remains true whether he acknowledges it or not. How often have we seen “mob action” where people do things that they wouldn’t do individually? A group of people is not the same as the individuals that make it up.

    If it would make SD more comfortable, I will use terminology that he can conceptualize more easily.

    Individuals (adult individuals) elect representatives to “government” who then pass laws, appoint judges, hire bureaucrats, establish agencies, etc. on our behalf (although not always as we would have liked). Even though we may not have individually voted for the person who is our representative and may not agree with anything they do, we are – as part of the social contract – responsible for everything they – and the rest of our “government” – do (or don’t do).

    SD probably won’t like that, but it is reality. All he has to do to prove it to himself is look at his next pay stub. The entry marked “federal income tax” represents a part of his “responsibility” for what the government does.

    If an individual strongly disagrees with that social contract or with the governance of their society, they can leave (still possible in most Western nations), work within the political system to change the government or they can revolt. All have historical precedents in the US.

    So, in that sense, “society” has decided, “society” has acted and “society” exists as more than just the mass of individuals. Individuals may be the actors in society, but society has more impact on their actions and decisions that SD is aware of.

    (I’d suspect that there are whole libraries full of the things SD isn’t aware of.)

    But, if SD feels that thinking in terms of “society” is too strenuous, he can try the following:

    Legislators – elected by individuals – have made laws in our name.

    Judges – either elected by individuals or appointed by elected officers of the government – have interpreted those laws.

    If an individual, like SD, is unhappy with those laws and those interpretations, the place to start is with the legislators. Or he can leave. Or he can start a revolution.

    The question of how we protect Daniel Hauser’s right to live until he reaches the age of majority is not so much an ethical issue as a political one.

    The ethics of the issue are clear: do “we” – the individuals that elect our government – let Daniel Hauser’s parents make a very bad (i.e. most likely lethal) decision for him based on their ignorance, fear or confusion? Do we stand by and let his parents’ “rights” to raise him as they see fit trump his right to live? Or do we – through our elected government – intervene to save his life until he is old enough to make his own decisions?

    The rest is commentary (and sophistry).

    Prometheus

  13. vargkill says:

    Prometheus,

    “The ethics of the issue are clear: do “we” – the individuals that elect our government – let Daniel Hauser’s parents make a very bad (i.e. most likely lethal) decision for him based on their ignorance, fear or confusion? Do we stand by and let his parents’ “rights” to raise him as they see fit trump his right to live? Or do we – through our elected government – intervene to save his life until he is old enough to make his own decisions?”

    I think the point still stands that the kid does not want to be
    helped in a way that includes SBM. If the kid was crying for
    help and his parents denied him that help against his will then
    that would be a different story. The fact is if he does not wish
    to take on SBM to fix his problem then why should we force
    ourselves on him with it? There are plenty of willing children
    who would gladly accept the Chemo treatment, so why not
    focus on the sick folks who want to be helped by SBM?

    “Legislators – elected by individuals – have made laws in our name.”

    You mean the guys who are elected by the people to represent
    the people? Only they don’t listen to the people 90% of the
    time and instead do what they think is best?

    So much for using that as an example of how freeish America is hey?

    “Mind blowing indeed”!!!!

  14. David Gorski says:

    The rest is commentary (and sophistry).

    “Sophistry” is the best word I’ve heard yet to describe SD’s logorrheic extrusions.

  15. weing says:

    So if you had a chance to stop some kids from drinking the “Kool-Aid” in Jonestown, but their parents wouldn’t let you, you would say fine, it’s their right?

  16. Harriet Hall says:

    The science clearly says chemotherapy prolongs the life of patients with this diagnosis. Science can only provide facts; it can’t provide guidelines on how to use those facts for moral and political decisions. There will always be different opinions on where to draw the line. It is fruitless to argue about opinions.

  17. vargkill says:

    Harriet Hall,

    “It is fruitless to argue about opinions.”

    Then why does it seem most of the time that no one is allowed
    to have an opinion on here without coming under some kinda
    nefarious scrutiny?

  18. David Gorski says:

    The science clearly says chemotherapy prolongs the life of patients with this diagnosis. Science can only provide facts; it can’t provide guidelines on how to use those facts for moral and political decisions. There will always be different opinions on where to draw the line. It is fruitless to argue about opinions.

    In this specific case the science says far more more than just that. It says that chemotherapy and radiation therapy have a high probability of curing patients with this diagnosis and that doing nothing has a very high probability of leading to the death of patients with this diagnosis. Based on this science, as a matter of medical ethics and a matter of law, it is clear that rejecting chemotherapy and radiation is rejecting a very good chance for a long and happy life for Daniel Hauser. It is, quite simply, medical neglect, again, both as a matter of medical ethics and a matter of law.

    That’s why I disagree that it is fruitless to argue about opinions, at least when the opinion being argued against is virtually certain to lead to the death of a child. Supporting the Hausers’ “right” to medical neglect may be an opinion, but it is an opinion that medical ethics very clearly shows to be wrong on many levels, as Prometheus argued so well.

  19. David Gorski says:

    Then why does it seem most of the time that no one is allowed to have an opinion on here without coming under some kinda
    nefarious scrutiny?

    Translation:

    “Nefarious scrutiny” = 1. criticism for saying things deserving of criticism; 2. asking vargkill for evidence to back up assertions.

  20. Karl Withakay says:

    vargkill,

    “I think the point still stands that the kid does not want to be
    helped in a way that includes SBM”

    That point does not stand and has already been addressed.

    The court determined that Daniel, a 13 year old learning disabled child has only a “rudimentary understanding at best of the risks and benefits of chemotherapy. … he does not believe he is ill currently. The fact is that he is very ill currently.”

    The court determined that Daniel lacks the ability to give informed consent, and is not competent to make his own medical decisions.

    The point that still stands is therefore, not that he does not want chemotherapy, but whether or not the judges ruling was correct.

    If you maintain that a 13 year old learning disabled child (which, admittedly, none of us have any personal knowledge of or experience with his mental capacity) is competent to make his own medical decisions, does the ability to give informed consent begin as soon as a child is able to utter the word “no”?

    Vargkill, you mentioned it would be different if he wanted chemo and his parents were refusing to allow it; what would be your position on the following:

    What if Daniel’s mother wanted him to have chemo, but Daniel did not want chemo, and ran away from home to stay with a sympathetic member of his religious organization who was petitioning the courts to declare Daniel an emancipated minor so he didn’t have to submit to the treatment his mother wanted for him?

  21. Harriet Hall says:

    vargkill said,

    “Then why does it seem most of the time that no one is allowed
    to have an opinion on here without coming under some kinda
    nefarious scrutiny?”

    Perhaps because those opinions are so often based on no evidence or on a misunderstanding of the evidence. Asking for evidence does not constitute “nefarious scrutiny.” This is a science-based medicine blog, and we ought to be able to reach a consensus about what the scientific evidence shows. People may then differ on their opinion about what to do with that evidence. We can argue and try to persuade, but we may not succeed in convincing everyone.

    David,

    Yes, the Hauser case involves an opinion that medical ethics very clearly shows to be wrong on many levels. Yet there will always be people who do not accept the consensus of medical ethics. Because after all, medical ethics changes over time and is ultimately based on opinion and cultural conventions. In the Roman Empire, the ethics of the time gave fathers the right to kill their children with no questions asked.

    In my opinion, Daniel should be treated, even if it requires some degree of force. But I’m willing to admit that I can’t hope to convince everyone that my opinion (and the opinion of medical ethicists) is the only possible answer.

    My point was that scientific evidence and medical ethics are two very different disciplines. There is inherently a greater degree of certainty in a scientific consensus than in an ethical consensus, because science is based on evidence while ethics is based on reasoning. So it behooves us to state our opinions strongly but not to be too dogmatic about them.

  22. wales says:

    Harriet, that last paragraph is succinct and accurate. I would go one step further and say we should also attempt to maintain a modicum of civility by refraining from insulting those with opposing opinions. That probably requires too much restraint for many, and would spoil the “fun” for some.

  23. vargkill says:

    Gorski, Karl Withakay, Harriet Hall

    “asking vargkill for evidence to back up assertions.”

    What assertions have a made that need evidence Mr Gorski?

    Ms/Mrs Hall,
    Not everyone with a different opinion has tried to make any
    assertions that calls for evidence. Such as, if acupressure helped
    me how am i to prove that to you? Catch my drift?

    I will admit what you wrote was very well stated and i agree
    with you on a deep level.

    “What if Daniel’s mother wanted him to have chemo, but Daniel did not want chemo, and ran away from home to stay with a sympathetic member of his religious organization who was petitioning the courts to declare Daniel an emancipated minor so he didn’t have to submit to the treatment his mother wanted for him?”

    This is a good point and all but this is not what is happening
    in this situation. Based just on moral ground, we are forcing
    against his will and the will of his parents. So hes 13? Well i think that along with his parents he has a right to refuse treatment. I think the idea of forcing anyone to do anything
    against their will is wrong. In a lot of cases i should say.

  24. Harriet Hall says:

    vargkill,
    You referred to me as Ms/Mrs Hall.
    I am Mrs. Hall, Col Hall, and Dr. Hall. It is customary to refer to MDs as Dr. rather than as Mr. or Mrs., especially in the context of a medical discussion. I’m usually not picky about which title is used, but in this context I’m wondering if you intended a subtle disrespect. Especially since in a previous comment on another thread you insulted me with very offensive language, calling me a hag woman and saying “Please Mrs/Ms Hall GREASE IT UP AND BOUNCE!” But perhaps this time you meant no disrespect and simply were unaware of the convention or chose not to follow it for reasons of your own.

    I had not previously commented on your claim to have been helped by acupressure. I readily accept that you felt better after the treatment and that you believe it helped you. The problem is that we can find similar testimonials for every quack remedy. Often they are misattributions due to the post hoc ergo propter hoc fallacy. People may have improved after the treatment but not “because of” the treatment itself. The only way to tell whether a treatment is effective is with controlled studies. We know there is no acceptable published evidence showing that acupressure is effective and we don’t expect you to prove it to us. We only ask that instead of saying “It helped me” you say the more accurate “I improved after the treatment and I believe it helped me.” If you are just relating your experience, we can’t argue with you. If you say it works, it will be up to you to show us evidence to support that claim.

  25. vargkill says:

    Harriet Hall,

    I meant no disrespect. Come on Harriet! You know im about
    as subtle as a brick going through a plate glass window!

    On top of my being helped by acupressure i also note that
    there are many people who have been helped by this man.
    How else would he know whats wrong with people just by
    touching them? I know as a science based person you need
    more then just my testimony, but im telling you what i have
    seen with my own eyes this mans ability to diagnose by touch
    and touch alone. I am going to ask him if he would be willing
    to take part in a study or be part of a documentry i want to
    make about him.

    “We only ask that instead of saying “It helped me” you say the more accurate “I improved after the treatment and I believe it helped me.” If you are just relating your experience, we can’t argue with you. If you say it works, it will be up to you to show us evidence to support that claim.”

    Harriet i want you to listen to me very very carefully.
    It helped me! Not because i want to be a smart ass but simply
    because it was a mind blowing expirence! Im not going to
    dubm it down into laymen’s terms for you guys, it is what
    it is and there is nothing i can do to prove it to you so you’re
    just going to have to accept that.

    I have said before that i believe in acupressure but i also believe
    that most alternative medicine is bullshit. You also have to
    consider that science still cannot support all things yet. It is
    a ever growing practice that we still only have a small understanding of.

  26. SD says:

    The giant eagle teased the following out of Prometheus, along with his liver:

    “SD seems to be hung up on the idea that “society” exists.”

    I’m not ‘hung up’ on it; I am noting a disturbing lack of analytical integrity in the concept, which seems to provide a wonderfully fertile ground for all kinds of nonsense that somehow always seems to wind up costing me more freedom and money. All kinds of ‘societies’ exist, Prometheus. That’s part of the problem: how the hell, precisely, do you define a ‘society’? Do *we* (you and I) share a society? Yes? No? Maybe? It depends? How many? How do you answer this question?

    How insane is it to posit that a thing has beliefs, motives, rights, and agency when it isn’t even possible to agree on what ‘it’ *is*?

    Not for nothing is the charge commonly leveled that most soft-core collectivists treat the concept of ‘society’ as though it were God. It shares all attributes with God – assumed to be omnipotent and omniscient by comparison with the individual, ineffable, unobservable, possessed of an unknowable and capricious will, and any number of atrocities are forgivable if committed in its name.

    “While it would be ludicrous on its face to say that a society is different from the individuals who make up that society, there are certain features of “society” that make it reasonable to consider it as a meta-organism separate from its individual “units”.”

    Oboy, I can’t wait for *this*.

    “This may be beyond the freshman sociology level of SD, but it remains true whether he acknowledges it or not.”

    I try to avoid sociology; it gives me hives, because it’s made of what we typically refer to as “bullshit”. That you possess the fantasy that we can impute meaningful attributes to an imaginary entity and then accomplish anything useful by believing really hard in these attributes does not make it true. Neither does your assertion of this fantasy, no matter how strident.

    “How often have we seen “mob action” where people do things that they wouldn’t do individually?”

    *dark chuckle* And what *kinds* of things do mobs do, Prometheus? No, really. If you answer no other questions, then answer that one.

    Yes, people do different things in mobs than they would do individually. The problem is that something about being in a mob encourages people to palm off responsibility for their own actions onto the group (“groupthink”), which responsibility by its diffuse, amorphous, and incalculable nature can be plausibly passed among the members of the group like a hot potato. (Nuremberg. ‘Nuff said.) And yet, you wonder why I cavil against policies involving the assumption that group (“mob”) rules trump individual rights in whole or part?

    “A group of people is not the same as the individuals that make it up.”

    Well, no shit, Sherlock. This statement is facilely true, and has absolutely no meaning or probative value.

    “If it would make SD more comfortable, I will use terminology that he can conceptualize more easily.

    Individuals (adult individuals) elect representatives to “government” who then pass laws, appoint judges, hire bureaucrats, establish agencies, etc. on our behalf (although not always as we would have liked).”

    Outstanding, Prometheus; I see that you have managed to internalize a third-grade civics class. Your parents must be so proud. If it’s not too much trouble, do you think you could join me up on the ‘adult’ level, here? It’d make things a lot easier.

    “Even though we may not have individually voted for the person who is our representative and may not agree with anything they do, we are – as part of the social contract – responsible for everything they – and the rest of our “government” – do (or don’t do).”

    Ah, yes, the good old ‘social contract’, that wonderful blank check with which so much waste and iniquity is perpetrated and excused.

    Where’s my copy of this contract?

    Wait, wait, wait; that’s not fair. (Bad SD!) I suggest a heavy dose of Lysander Spooner. Here’s a spoiler question: What kind of contract is it that a man may be held to, if (a) he has never seen it, (b) he has never explicitly agreed to it, and in fact *could* not, never having seen it in the first place, (c) the ‘contract’ is so large that it cannot be reasonably understood by any competent adult man in his natural lifetime, (d) the counterparty to this contract is ill-defined and constantly in flux, and (e) it is subject to change on a regular basis without notice?

    “SD probably won’t like that, but it is reality. All he has to do to prove it to himself is look at his next pay stub. The entry marked “federal income tax” represents a part of his “responsibility” for what the government does.”

    I hate to tell you this, but that isn’t my ‘responsibility’, it is what the tax collector will have my ass shot for not providing on cue. The notion that I ‘owe’ taxes to some third party in the sense of having incurred a debt with them only holds if the traditional debtor/creditor relationship holds, which is only ethically true under a number of constraints (informed consent, consideration, and lack of duress being the big ones). Since exactly none of those constraints are satisfied, I do not ‘owe’ the tax man *shit*. I *pay*, yes, and pay scrupulously, every dime that he says I ‘owe’. Why I pay: because I risk my life if I refuse, same as I would if I refused to cough up the vig to Tony Soprano. That I have to do it does not mean that I need to labor under the delusion that there is any actual debt or obligation involved, or any good or ethical reason to pay the money other than that the tax authorities possess the force to compel me to pay it.

    That I am forced to pay a thief who demands my money or my life does not mean that I have a ‘responsibility’ to the thief. The belief that I do is a hallmark of, in the words of Larry Wall, ‘leisurely moral growth’.

    “If an individual strongly disagrees with that social contract or with the governance of their society, they can leave (still possible in most Western nations), work within the political system to change the government or they can revolt. All have historical precedents in the US.”

    Ah, the old ‘love-it-or-leave-it’ trope. Yeah, that doesn’t ever work on people like you, I notice, nor are you ever comfortable restricting yourself to those choices. I submit that the people who wanted to import ideas such as “the supremacy of ‘society’ over the individual” from other glorious paradises on this Earth chose to neither ‘love’ the Anglo-American tradition of individual rights nor ‘leave’ the country.

    I note the clever nod to the toiletward motion of Western societies (chiefly due to nonsense of the type you defend) by your qualification that it is *still* possible to leave them.

    “So, in that sense, “society” has decided, “society” has acted and “society” exists as more than just the mass of individuals. Individuals may be the actors in society, but society has more impact on their actions and decisions that SD is aware of.

    (I’d suspect that there are whole libraries full of the things SD isn’t aware of.)

    But, if SD feels that thinking in terms of “society” is too strenuous, he can try the following:”

    I do find it strenuous. Taxing, even. (*rim shot* Thank you, thank you, I’ll be here all week; try the veal.) I find it strenuous because playing make-believe with imaginary entities is a task for which I have only a limited attention span; reality and truth tend to force their ugly, warty way past such delusions far too easily.

    “Legislators – elected by individuals – have made laws in our name.

    Judges – either elected by individuals or appointed by elected officers of the government – have interpreted those laws.

    If an individual, like SD, is unhappy with those laws and those interpretations, the place to start is with the legislators. Or he can leave. Or he can start a revolution.”

    Actually, I disagree. The place to start is on the individual level. These things happen because people believe them to be good ideas. Invariably, they believe these things to be good ideas due to flawed reasoning, typically backward from the conclusion they *want* to reach. The belief in the ethical acceptability of coercion is a form of mental weakness, astonishingly similar in both structure and outcomes to the belief in woo, with magical thinking and post hoc fallacies enough to make even Cde. Gorski blush. The way to fix this is to point out the fallacies to the audience, in the hope that they see the patterns of these thoughts within their own rationalizations for their favored forms of coercion, and change their beliefs accordingly. When you add gratuitous abuse of the believer by rubbing his nose in the idiocy embedded in his beliefs, you have an all-around winner.

    “The question of how we protect Daniel Hauser’s right to live until he reaches the age of majority is not so much an ethical issue as a political one.

    The ethics of the issue are clear: do “we” – the individuals that elect our government – let Daniel Hauser’s parents make a very bad (i.e. most likely lethal) decision for him based on their ignorance, fear or confusion?”

    See, here’s some of that mental weakness and politi-woo:

    You are *assuming* your conclusion: that ‘we’ have some implicit right to ‘let’ or ‘not let’ Daniel Hauser’s parents do or not do something. From that flawed assumption, you proceed immediately to a value calculation about whether it’s better or worse for ‘us’ to ‘let’ something of disputable badness happen. I will be charitable and assume that you are being purely sincere in this, that you genuinely believe that this is a validly-phrased ethical question. (A malicious and more competent adversary would ‘reframe’ the discussion by proposing choices that have pre-embedded conclusions in precisely this way.) That neither you nor I possess this right by ourselves, you gloss right over; how you think that ‘we’ possess this right when nobody comprising ‘we’ has it is a mystery by which the transubstantiation of the Eucharist pales in comparison. What *you* want – and stop using the term ‘we’, it’s dishonest – is to find a way out of this situation where Daniel Hauser gets the treatment you think is the best idea, which happens to be a course of chemo. I’m glad you want what you think best for this child. That thought does you credit. I don’t even dispute that it *is* the best idea. But your *wanting* of this outcome does not imply a right to *compel* it. That’s the problem. The *power* to compel it, you might well have, that’s true. You might even think that that power and its application in this situation are both good ideas. I assure you, neither is. I also assure you that the slope of State intervention in health-care decisions is real, it *is* slippery, and it’s a long and unpleasant way to the bottom. This power is capricious and uncontrollable; in the words of George Washington, “a troublesome servant and a fearsome master”.

    “Do we stand by and let his parents’ “rights” to raise him as they see fit trump his right to live? Or do we – through our elected government – intervene to save his life until he is old enough to make his own decisions?”

    I don’t know. I note that you didn’t answer the ethical question asked earlier about whether or not you’d feel justified in shooting Ms. Hauser if you saw her at the gas station with her son. You – along with every other histrionic swooning belle on here – seem to believe that she’s murdering the poor tyke. If she’s actively killing him, then actively killing her to save him is ethically permissible, right? So you should have no problem with that, then, should you?

    “The rest is commentary (and sophistry).”

    *chuckle* You only wish it were sophistry. I will note that sophistry is the propounding of a *plausible* argument which is cunningly designed yet still wrong for whatever reason, so I will thank you for the compliment (cunning? me? awwwwww, I nub you too, Prometheus), and note that your claim of wrongness remains substantially unproven. (In fact, unprovable, since you are operating from a fundamentally self-contradicting position and I am not, but that’s for the advanced adept to discover on his own.)

    “quia ego sic dico”
    -SD

  27. SD says:

    Govorit Cde. Gorski:

    “That’s why I disagree that it is fruitless to argue about opinions, at least when the opinion being argued against is virtually certain to lead to the death of a child.”

    Again with the histrionics. “Won’t! Somebody! Think! … OF THE CHILDREN??!?!?”

    Would you like a tissue?

    “Supporting the Hausers’ “right” to medical neglect may be an opinion, but it is an opinion that medical ethics very clearly shows to be wrong on many levels, as Prometheus argued so well.”

    Oh, wipe your chin, Cde. Gorski. I think your fulsome ‘praise’ of Prometheus may have left some residue.

    I will say this: At least Prometheus produces something substantive, instead of just going for the ‘drive-by’ response, as you do all too often. Although I loathe his espoused philosophy to an extent too vast to distill into words, I will credit him at the very least with *not* being you.

    “but that’s just how the comrade rolls!”
    -SD

  28. SD says:

    Govorit Cde. Gorski:

    “Which includes pretty much all childhood cancers. His quibbling over whether it is 80% or 90% doesn’t change the fact that virtually all studies demonstrate that childhood Hodgkin’s disease is a highly treatable tumor with excellent results using science-based medical therapy.”

    Not in dispute, only the extent to which it’s treatable. Studies, please?

    “In any case, pediatric oncologists who evaluated Daniel estimated his odds at around 85-90%; which is where my estimates started before I went back to look at the literature.”

    How a pediatric oncologist evaluates a case is not scientific, Comrade. An evaluation is an *opinion*, not a fact.

    “If Kid SD wants to see just just how grand the improvements in survival have been for Hodgkin’s disease and other childhood tumors over the last 50 years, he should compare a survival graph for childhood tumors from the 1950s to the current ones.”

    Sure. Got one? The current estimate in this discussion for an untreated overall-survival rate rests at 40% (Leukemia and Lymphoma Society, 1963). If you have a better number, bring it on.

    “As for Kid SD’s whining about the study only having 160 children, the reason is that childhood cancers are relatively rare (a fact for which pediatric oncologists are grateful). He will be hard pressed to find studies that have thousands of patients–like studies of adult cancers–(or even several hundred patients) because they don’t exist. The study cited was actually fairly large by pediatric oncology standards.”

    It can be ‘fairly large by pediatric oncology standards’ and still be too small to convey correct or believable information about the actual expected success rate of the treatment. Looks like the incidence of HD in kids under 20 is about 240/year (Leukemia and Lymphoma Society demographic breakdown). ABVD’s been around long enough that a meta-analysis might be useful. Got one?

    “Yet another bit of evidence for his ignorance of basic oncology.”

    Oh, Comrade, stop. You’re killing me, here. What a wholesale return of conjecture from such a trifling investment of fact.

    “In any case, it’s another typical case of Kid SD’s moving the goalposts, which is why I shouldn’t have bothered with him in the first place.”

    The goalposts aren’t moving, Comrade, they’re exactly where they were. Since you don’t accept a blanket prohibition on overruling parental decision-making for treatment – presumably due to some incurable ethical or cognitive defect – then we’re left to argue statistics, and I’m attacking yours. I’ve seen sufficiently wild variations in these statistics to be extremely dubious of the “95%!” cure rate you’re claiming; that’s a *best-case* scenario, and you know it. When we add the worst-case scenario, and the statistics for the case where he’s not treated at all, the situation begins to look a little less black and white. You don’t like my pointing out that the area this case is in is a little more grey than you paint it, well, tough cookies. Better luck next time.

    “He has no interest in being educated. Indeed, in one way he is just like a CAM advocate (or a creationist, for that matter) in that he is looking for little flaws that he can exploit in order to score points and troll. Different viewpoint, same technique. I’ve seen his like many times before.”"

    I’m not here to be ‘educated’, you ass; I’m here to be ‘convinced’. These are different, as you well know. “Education” implies a teacher/student relationship, which you desperately hope to establish to satisfy your hunger for power; “convincing” implies a relationship between *peers*. (I would encourage you to always aim for the second relationship, because attempting the first just pisses people off.) Now, if I analyze your viewpoint and determine it to be superior to my own, then I’ll adopt it, believe me. However, so far, your ethical reasoning appears to me to partake of folly and fallacy, and has not measurably improved in the time I’ve been poking at it. In fact, interestingly enough, you adopt some very characteristic defense mechanisms of someone who is aware of serious structural fallacies embedded in their worldview – the ignoring of substantial points and questions, a disinclination to elaborate on statements when asked, seizing upon single statements and giving short and useless answers, and so on. Except for your one divergence into providing actual statistics – a courtesy for which I thank you, incidentally – you remind me strongly of this one tinfoil-beanie moron I used to kick around on a regular basis. You respond in nearly the same way that he did, and are nearly as refractory to the Scalpel of Socratic Inquiry as he was. This guy was a woo mark of the first water, all kinds of crap about how rapeseed oil causes Creutzfeldt-Jakob, stuff like that. A real hoot. You’d like him, you’d probably get along like gangbusters.

    “By the way, Prometheus wiped the floor with Kid SD. I was duly impressed becauseI just don’t have the patience to bother anymore–if I ever did.”

    Of course you’d think so! He argues in support of your favorite entity, ‘society’, and its imprimatur for acts perpetrated in its name, which validation you seek. Hell, if Pol Pot logged in to SBM from beyond the grave and began arguing in favor of ‘society’s’ right to crush the individual in the name of scientific medical progress, you’d be holding up a sign marked “9.8″ (points deducted for supernatural communication, natch).

    Your patience would improve substantially if your hypocrisy were not threatened so much, I fear. Sorry, I can’t accommodate you there.

    “… but the French judge still gave him a 2″
    -SD

  29. SD says:

    Dr. Hall:

    “My point was that scientific evidence and medical ethics are two very different disciplines.”

    Indeed. But this is a political post that focuses more on ethics than science; this topic was selected for its controversial and contemporary nature, and, I suspect, for its sympathetic value. Nobody likes to hear about a 13-year-old kid who probably won’t be around to get his driver’s license because his parents did a stoopid. In such a milieu, with violins playing softly in the background, it becomes far more reasonable to “push” ethical boundaries to include such cases, which provide the front from which to push further the next time. (Maybe next time it will be a blanket prohibition on parents adding CAM to underage kids’ cancer treatments, on the strength that it ‘might interfere’. How does that sound, huh? Awesome, right?) Comrade Gorski knows this well, I’m afraid. That’s why he does it. He is an ace rhetorical manipulator, of skill approaching my own.

    Somebody has to hold this rhetorical line. Yes, you may be correct in your assessment of what is medically best for this child in this instance. You may also have the power – *today* – to compel Daniel Hauser to complete the treatment (nocebo effect be damned), and to throw his mother in jail for attempting to interfere with you, or at least to hunt them like rabbits. You may believe that justice demands that you exercise this power, and for all I know, you *may* be right. But this power cannot coexist in the long term with any rational definition of liberty; this power, once ratified and exercised, admits of no natural limits to its scope, nor to any means unjustified by its ends, and eventually grows into a gargantuan perversion which leaves a multitude of shattered lives in its wake. The one saving grace – that this Blob-like monster inevitably collapses and destroys itself due to its own loathsome corpulence – is small comfort to its victims. I suggest that the treatment of a stricken child – whose survival is far from guaranteed, and whose death is not certain, hyperbole notwithstanding – is not cause enough to acquiesce to such power, if for no reason than that it can be used as easily against your cause as for its benefit.

    “There is inherently a greater degree of certainty in a scientific consensus than in an ethical consensus, because science is based on evidence while ethics is based on reasoning. So it behooves us to state our opinions strongly but not to be too dogmatic about them.”

    I disagree. >;->

    Seriously: without vigor, why bother? Does it do some great justice to a line of ethical reasoning to present it like a milquetoast?

    “go hard, or go home”
    -SD

  30. wales says:

    Despite my earlier comment I admire SD’s vigorous defense of individual liberty, no matter how many times those views are pejoratively labeled Libertarian or selfish (another slippery slope: individuals as self-appointed arbiters of selfishness).

    I come to the conclusion that although scientific evidence and medical ethics may be two different (academic) disciplines, in real life “never the twain shall meet” does not apply. Thus a spirited exchange of opinions is important here. I do see a distinction between “vigorous” opinions and “dogmatic” opinions, though it’s somewhat subjective.

  31. tmac57 says:

    Just in from AP:
    NEW ULM, Minn. – The parents of a Minnesota boy who refused chemotherapy for his cancer told a judge Tuesday they now agree to the medical treatment, and the judge ruled their son can stay with them. Daniel Hauser, 13, has Hodgkin’s lymphoma.

    He and his mother missed a court appearance last week and left the state to avoid chemotherapy and seek alternative treatments. Colleen and Anthony Hauser told a Brown County District judge they now understand their son needs chemotherapy.

    When Judge John Rodenberg asked an emotional Colleen Hauser if she now believes chemotherapy is necessary to save her son’s life, she replied, “Yes I do.”

    Daniel is scheduled for a round of chemotherapy on Thursday at Children’s Hospital and Clinics of Minnesota.

  32. CatMN says:

    Regarding minors making adult choices – had Daniel shot someone he would have been treated as an adult, tried as an adult and sentenced to an adult prison. But he has no say in his own medical care.

    After his first Chemo treatment he developed a blood clot that could have killed him. He was in the hospital for 11 days.

    His mother’s sister died from chemo so he does have an understanding of death and the ill effects of chemo. Yes he was 5 at the time, but if 5 year olds have no ability to learn or recall why do we bother sending them to kindergarten. Daniel has a learning disability and his mother pointed out and the Judge agreed that he would have been too embarrased to read in front of the Judge and Attorneys (most 13 year olds would), he can read but knows it isn’t at the level he should be at.

    There have been cases of minors with Hodgkin’s Lymphoma that have survived after refusing chemo. There are alternative treatments. They are feeding him organic produce (lots of greens such as broccoli and beans), high PH water, vitamins and home grown eggs not that it is his complete alternative treatment.

    The family was asking that he undergo one treatment at a time and then see how he was doing before committing to another treatment. And they wanted to incorporate the organic diet and alternative care with the traditional care. Fortunately, in some parts of this country holistic medicine is being incorporated with traditional methods for an integrated medicine that recognized that modern medicine with its “surgery and drugs treatment” is not the only effective treatment available.

    Anyone in the medical community should know that state of mind during treatment is just as important as the treatment itself. If a patient is convinced the treatment will kill them then chances are pretty good it will.

    The family runs a dairy farm that has been in the father’s family since the 1800′s with the father working an outside job to make ends meet and hopefully provide this family of 10 with basic health insurance. As is the case with many family farms these days, the only way to make ends meet is for one of the parents to get an outside job with benefits.

    The mother does not even have a car to take Daniel the 100 miles to Minneapolis for the chemo treatment and must rely on the generosity of a friend to transport them there. Meanwhile there are 7 kids ages 16 years old to 16 months old at home.

    Being Catholic does not automatically mean you believe in chemo and that you do not believe in alternative therapies.

    Colleen Hauser did everything a good mother should do – when confronted with a child’s health problem, she did as much research as she could to understand the disease and treatments – she did not just take the doctors word for it. They got 5 different opinions about his treatment from the medical community.

    Daniel was planning on running away from home to avoid further chemo treatments. Better his mother was with him during this time then if he was on the streets by himself. To have news reports and court orders saying that she abducted her son is absurd. She gave him a time out in California to get some perspective and hear some more advice which in the end was go back home and get treatment. Had he died she would have went to prision and then who would have raised the other 7 kids?

    Surprisingly, some of the Nemenhah alternative therapy is based on Japanese and Chinese therapy such as the Red Reishi mushroom which has been used for over 2,000 years – see http://www.reishi.com Much of the Nemenhah alternative therapy is based on the natural herbs used by ancient medicine men that in many cases kept the Native Americans alive until the white man came to save them from themselves. Natural herbs that Native Americans used are the basis of many chemical drugs that are prescribed today with a big mark up by the pharmaceutical companies to pay for their research and give their shareholders a profit. It’s a sure bet you won’t find any pharmaceutical companies therefore no physicians promoting medical treatments that can’t be patented and sold for big profits.

    No one mentions the late effects of chemo treatment for Hodgkin’s Lymphoma:

    Patients may develop late effects that appear months or years after their treatment for Hodgkin lymphoma.

    Treatment with chemotherapy and/or radiation therapy for Hodgkin lymphoma may increase the risk of second cancers and other health problems for many months or years after treatment. These late effects depend on the type of treatment and the patient’s age when treated, and may include:

    Acute myelogenous leukemia.
    Solid tumors, including the development of breast and colorectal cancers in younger patients.
    Infertility.
    Heart, lung, thyroid, or bone disease.
    Fatigue.
    http://www.cancer.gov/cancertopics/pdq/treatment/adulthodgkins/Patient/page4

  33. David Gorski says:

    Regarding minors making adult choices – had Daniel shot someone he would have been treated as an adult, tried as an adult and sentenced to an adult prison. But he has no say in his own medical care.

    You’re right. Minors that young shouldn’t be tried as adults. That is not an argument that Daniel should be allowed to choose his own treatment; it’s an argument that 13-year-olds should not be tried as adults.

    There have been cases of minors with Hodgkin’s Lymphoma that have survived after refusing chemo.

    But you’ll see that all of these minors did undergo some chemotherapy and/or radiation. Billy Best, for instance, underwent more than one round of chemotherapy. Ditto Katie Wernecke, whose woo-loving doctor treated her with both high dose vitamin C AND chemotherapy. Abraham Cherrix underwent radiation. They were all lucky. They survived in spite of undergoing incomplete therapy.

    Spontaneous remissions, although very uncommon, do sometimes happen. It wouldn’t be a particularly wise course of action to count on a spontaneous remission though. Not a good thing to bet your life on.

    No, there aren’t any “alternatives” right now. Doctors would love it if there were less harsh alternatives that actually worked, but there aren’t. Yet that doesn’t stop scammers and deluded true believers from sucking the gullible into thinking that they can somehow magically get rid of their cancers 100% of the time without any side effects.

  34. vargkill says:

    Mr Gorski,

    I think what his point is is that if he can be held accountable
    for murder and be looked at as an adult in that facet, then why
    cant he be looked at as adult enough to choose his treatment?

    Thats a double standard!

  35. David Gorski says:

    I agree, except that the implication was that Daniel should have the right to refuse chemotherapy.

    I disagree, because he is still a child.

    Instead, I would resolve the double standard not by giving 13-year-olds the right to choose their own cancer therapy. Instead, I’d stop trying 13-year-olds as adults. I thought I had made that clear. In other words, there are two ways to resolve such a double standard.

  36. vargkill says:

    Gorski,

    I think you’re missing my point here. In doing so you have
    just simply choosen to point out the part about being tried as
    an adult. If a 13 year old kid can assume the responsibility
    of murder as an adult then why cant he choose to refuse
    cancer treatment?

    This is the case right now! Not asking what you would do
    if you had it your way. The situation is that he can be tried
    as an adult and he cannot make his own choice on how he
    is treated.

    Does that not seem like a double standard to you in how our
    system works? The same court that deicdeds if he can refuse
    treatment is the same system that can convict him as an adult.

    Not saying you have a double standard but the system does
    and we cannot change it.

  37. Karl Withakay says:

    vargkill,
    A 13 year can commit murder. That a 13 year old can commit murder does not mean that when they do so, they “assume the responsibility of murder as an adult”. A five year old can commit murder as well; the ability to commit murder does not grant one adult status, or involve a decision to “murder as an adult”.

    Hypothetically, if Daniel committed murder, it is not a given he would be tried as an adult anyway. The decision to try a 13 year old as an adult is not automatic. It’s a decision made by the prosecutors and judges based on their judgments of the individual involved and the nature of the crime. Daniel’s learning disability would likely weigh heavily in that decision, as it did in the judges assessment of Daniel’s capacity to make informed medical decisions for himself. I doubt Daniel would be tried as an adult if he committed a capitol crime.

    I believe Dr. Gorski got your point just fine. He acknowledged there is a double standard, and gave his opinion that the way to resolve that double standard was to not try 13 year olds as adults

  38. vargkill says:

    Karl Withakay,

    Yes indeed. I guess my personal opinion still stands at
    letting him along with his parents make the choice of
    how he gets treated.

    So how ro we resolve this situation from happening again
    in the future? I am sure it will at some point.

  39. daedalus2u says:

    Actually in Minn children 13 years old can not be tried as adults.

    https://www.revisor.leg.state.mn.us/statutes/?id=609.055

  40. Winfield J. Abbe says:

    There have been many great accomplishments in the field of medicine in the past century, based on science, but unfortunately cancer treatment and understanding are not among them. I am sure Dr. Gorski’s intentions are good, but so far as cancer is concerned, while he may be a medical “expert”, he appears to be quite ignorant of the gross failure of this branch of so-called “medicine”.
    A New York Times article the other day quoted the figure of $105 billion spent on the war on cancer since 1971. The actual figure of public and private dollars is likely closer to the trillions depending on what is included. Don’t you think that with the expenditure of this very large amount of money the cancer problem would be basically solve by now? Yet if you ask almost any doctor what cancer even is, you will likely receive only vague doubletalk. And despite this enormous amount of money squandered, about one person dies every minute either from cancer, treatment, or both. Isn’t there something very wrong when one spends such enormous amounts of money but the results are mostly failure? Would you continue to pay someone to fix your car over and over and over again if they failed? In fact, if they failed, especially repeatedly, wouldn’t you demand your money back? Do you ever observe a cancer doctor who received money for administering the approved orthodox cancer treatment in the U.S. and failed, offer money back to a patient? I have never observed any such refund offer, have you?
    All cancer treatments in the United States, approved by the cancer generals, are life threatening. Therefore, if one is under one of those treatments for cancer, and the patient dies, one never knows for sure if the patient died from the cancer or the treatment or a combination thereof. An autopsy, let alone a true and objective one, to accurately determine the true cause of death, is rarely, if ever performed. The speculated claim of the doctors or their cronies treating the patient, about the cause of death, are meaningless, since all of them have a conflict of interest in protecting themselves from liabililty and legal claims. After all, would any medical doctor ever admit he or she caused the death of a patient iatrogenically via use of “approved” medical treatments for cancer of chemotherapy, radiation, surgery, bone marrow transplants, etc.? Obviously not. This is why one never or almost never reads any article published in a major newspaper that the death of a cancer patient was caused by the treatment. Instead, one reads how they died of “complications” of cancer, usually an absolute lie.
    Here are a few references Dr. Gorski should read:
    “The Truth about hydrazine sulfate Dr. Gold Speaks” by Joseph Gold, M.D., http://www.hydrazinesulfate.org. This is basically a criminal indictment of the NIH, NCI and FDA and the cancer generals.
    “The Cancer Industry” by Ralph W. Moss, Ph.D., Equinox Press, N. Y., 1996, first published as “The Cancer Syndrome” about 1980. Dr. Moss holds a Ph.D. degree in classics from Stanford University. He was fired as assistant director of public affairs from Memorial Sloan Kettering Cancer Center in New York for refusing to lie to the public about cancer research. This book is documented with about 500 references and discusses among many sordid details of fraud and scientific misconduct in cancer research and testing, the “Summerlin Painted Mouse Affair” of how a medical doctor painted spots on the backs of laboratory test animals to fool others about cancer research.
    “American Cancer Society America’s Wealthiest ‘Non-Profit’ Institution” by Samuel S. Epstein, M.D., International Journal of Health Services, about 1999, also available at http://www.preventcancer.com.
    “University Fails to Offer Another Viewpoint” by Winfield J. Abbe, Ph.D., http://www.annieappleseedproject.org.
    Many others could be provided.
    Winfield J. Abbe
    150 Raintree Ct.
    Athens, GA 30607
    A.B., Physics, UC Berkeley, 1061
    Ph.D., Physics, UC Riverside, 1966

  41. David Gorski says:

    There have been many great accomplishments in the field of medicine in the past century, based on science, but unfortunately cancer treatment and understanding are not among them. I am sure Dr. Gorski’s intentions are good, but so far as cancer is concerned, while he may be a medical “expert”, he appears to be quite ignorant of the gross failure of this branch of so-called “medicine”.

    Two points: One, I’ve spent my life studying cancer. Two, with that background, I can tell you unequivocally that, as far as your understanding of medicine goes, you appear to be a physicist.

    Oh, and I can’t resist adding point three: Peruse some of my writings here at SBM. I am aware of the “failings” of medicine. I write about them here. Not as much as I write about the pseudoscience that is the vast majority of “alternative” therapies, but still a fair amount. Part of the raison d’être of this blog is to discuss these failings and how to improve what we as physicians do.

    A New York Times article the other day quoted the figure of $105 billion spent on the war on cancer since 1971. The actual figure of public and private dollars is likely closer to the trillions depending on what is included. Don’t you think that with the expenditure of this very large amount of money the cancer problem would be basically solve by now?

    We’ve spent billions upon billions of dollars trying to eliminate poverty. Yet there are still a lot of poor people out there. Don’t you think with the expenditure of this very large amount of money on the problem of poverty that the problem would be basically solved by now? Why isn’t it?

    In any case, you appear to be operating from a false premise, mainly that cancer is one disease and that there is one or few cures. One reason I (and most people involved in cancer research) don’t like the frequently used term “cure for cancer” (which is what you seem to think we should have by now and are complaining that we don’t). The reason is simple. Embedded within the terms “war on cancer” or “cure for cancer” is the assumption that cancer is one disease, when it is most definitely not. Rather, cancer is many diseases affecting many organs, each with its own mechanism of pathogenesis and each often requiring different treatments. For example, for “liquid” tumors arising from hematopoietic organs, the treatment usually consists primarily of chemotherapy, sometimes with radiation therapy in the case of lymphomas, while “solid” tumors often require surgery as the primary treatment. Different tumors are driven by different oncogenes, different environmental influences, and different biochemistry. They have different growth characteristics, complications, and organs to which they prefer to metastasize.

    Even with in the same cancer (breast cancer, for example, my specialty), the biological behavior of the cancer within different patients can vary widely, from indolent tumors that grow slowly and may take years to metastasize to highly aggressive tumors that grow rapidly and metastasize widely. That’s why there is no such thing as “a cure for cancer.” That’s why the term “war on cancer” is, in essence, nonsensical. There can be cures for cancers, but not a cure for cancer. Hopefully, there will be more cures for more cancers over the remaining years of my career.

    That is why your question is overblown. The officially declared “war on cancer” has been going on only 37 years. That’s not very much time for coming up with a cure. Cancers as a group represent a protean foe, with many faces and many abnormalities, which should help explain why the frequent complaint that we haven’t “made much progress” in the 37 years since Nixon’s declared “war on cancer” in general demonstrates a lack of understanding that (1) there is no “war on cancer” there are “wars on cancers” and (2) just how difficult this battle is.

    Could we potentially do better? Of course. But you are operating from a false dichotomy. Because we haven’t made as much progress against cancer as you and others think we should have does not imply that “alternative” medicine will do better.

    Yet if you ask almost any doctor what cancer even is, you will likely receive only vague doubletalk.

    It’s only “vague doubletalk if you don’t understand it.

    And despite this enormous amount of money squandered, about one person dies every minute either from cancer, treatment, or both. Isn’t there something very wrong when one spends such enormous amounts of money but the results are mostly failure? Would you continue to pay someone to fix your car over and over and over again if they failed? In fact, if they failed, especially repeatedly, wouldn’t you demand your money back? Do you ever observe a cancer doctor who received money for administering the approved orthodox cancer treatment in the U.S. and failed, offer money back to a patient? I have never observed any such refund offer, have you?

    See my answer above. As for offering money back, I have yet to see the cancer quacks offer money back. If they’re so confident that they have the answer that we practitioners of science-based medicine do not, perhaps you should badger them to offer a money back guarantee.

    All cancer treatments in the United States, approved by the cancer generals, are life threatening. Therefore, if one is under one of those treatments for cancer, and the patient dies, one never knows for sure if the patient died from the cancer or the treatment or a combination thereof. An autopsy, let alone a true and objective one, to accurately determine the true cause of death, is rarely, if ever performed.

    This is patently false. While it is true that autopsies are rarely performed on cancer patients, that assertion applies mainly to cancer patients who die of overwhelming disease, most of whom died while under palliative care only. There truly is little point to doing autopsies on such patients. If a patient dies unexpectedly while on chemotherapy, every effort is made to figure out why the patient died, which may or may not include an autopsy. In any case, there are numerous well-established methods for determining whether a death is likely to be treatment-related or cancer-related.

    The speculated claim of the doctors or their cronies treating the patient, about the cause of death, are meaningless, since all of them have a conflict of interest in protecting themselves from liabililty and legal claims. After all, would any medical doctor ever admit he or she caused the death of a patient iatrogenically via use of “approved” medical treatments for cancer of chemotherapy, radiation, surgery, bone marrow transplants, etc.? Obviously not. This is why one never or almost never reads any article published in a major newspaper that the death of a cancer patient was caused by the treatment. Instead, one reads how they died of “complications” of cancer, usually an absolute lie.

    This, too, is patently false. We have very good estimates, for example, of complication and mortality rates from various forms of chemotherapy, radiation, and bone marrow transplantation rates. How did we get these estimates? We studied these treatments! Indeed, for surgery especially you’re completely full of crap. Surgeons have very good estimates of the complication rates of various operations, and we even have good models to estimate risks for individual patients based on their comorbidities. Moreover, if a patient dies within 30 days of surgery, it is counted as a mortality that was either due to the surgery or related to the surgery. If a patient has a massive heart attack 29 days after an uncomplicated cholecystectomy, for example, it’s counted as a potential surgical death.

    In brief, you do not know what you are talking about. Sorry to be blunt, but you were blunt to begin with. I’m sure you mean well, but you are clearly as ignorant of cancer therapy as you accuse me of being about your preferred woo. Indeed, take a look at this:

    http://www.ncbi.nlm.nih.gov/pubmed/11301408

    It’s a discussion of mortality from esophagectomy (the vast majority of which are done for esophageal cancer) and how it’s fallen from nearly 30% to 7%. Guess what? The doctors are admitting there in a peer-reviewed journal that 7% of patients who underwent esophagectomy in their series died from the surgery. I could literally bury you with articles from the surgical literature discussing mortality due to various cancer operations, if you so desire. That’s because we surgeons study that sort of thing in order to figure out how to make surgery less risky and less likely to result in complications or death. In any case, surgery, as in all medical care, is a balancing of the risks of treatment versus the benefits.

    Here are a few references Dr. Gorski should read:
    “The Truth about hydrazine sulfate Dr. Gold Speaks” by Joseph Gold, M.D., http://www.hydrazinesulfate.org. This is basically a criminal indictment of the NIH, NCI and FDA and the cancer generals.

    Hydrazine sulfate? Hydrazine sulfate? You’ve got to be kidding me.

    “The Cancer Industry” by Ralph W. Moss, Ph.D., Equinox Press, N. Y., 1996, first published as “The Cancer Syndrome” about 1980. Dr. Moss holds a Ph.D. degree in classics from Stanford University.

    So Moss is not a physician and not a scientist. Help me out here: Why should I take him any more seriously when he discusses cancer than I do Jenny McCarthy when she discusses vaccines?

    He was fired as assistant director of public affairs from Memorial Sloan Kettering Cancer Center in New York for refusing to lie to the public about cancer research. This book is documented with about 500 references and discusses among many sordid details of fraud and scientific misconduct in cancer research and testing, the “Summerlin Painted Mouse Affair” of how a medical doctor painted spots on the backs of laboratory test animals to fool others about cancer research.

    Saul Green says he has not been able to find any evidence that Moss was assistant director of medical affairs at MSKCC in the 1970s. The only title he could find for Moss was “science writer.” It’s possible Moss held the position he says he did, but the evidence is scant. In addition, Dr. Timothy Gorski (no relation to me, alas) notes that Moss was fired for failing “to properly discharge his most basic job responsibilities.”

    Green notes these distortions in Moss’ book:

    • Moss suggests that a Sloan-Kettering researcher, Kanematsu Sugiura, found that laetrile was effective against cancer in mice and that his work was never repeated or refuted. The book fails to mention that at least six major cancer research institutions did repeat Sugiura’s experiments and had negative results.
    • Moss endorses the work of the late Dr. Virginia Livingston-Wheeler, who claimed that cancer is caused by a bacterium she named Progenitor cryptocides. He neglected to mention that scientists don’t believe her hypothesis because there is no proof that the organism exists. Neither Dr. Wheeler nor anyone else has been able to produce a cancer by injecting her alleged organisms into experimental animals. Independent researchers have found numerous cases where cancer tissues did not contain the organism. In addition, cultures of “Progenitor cryptocides” from Dr. Wheeler’s own lab, which were grown in other labs, turned out to be common forms of Staphylococci that inhabit the skin.

    No, Ralph Moss is not a reliable source for anything having to do with cancer, cancer therapy, or Laetrile. Also, no one contests that there is at times scientific fraud; the beauty of science is that it is ultimately self-correcting. The same cannot be said of CAM or “alternative cancer cures.”

    “American Cancer Society America’s Wealthiest ‘Non-Profit’ Institution” by Samuel S. Epstein, M.D., International Journal of Health Services, about 1999, also available at http://www.preventcancer.com.

    “University Fails to Offer Another Viewpoint” by Winfield J. Abbe, Ph.D., http://www.annieappleseedproject.org.

    Here is a direct link to the article. In essence, it is nothing more than a rant because the president of OSU and the head of the American Cancer Society didn’t give your hero the attention you think he deserved. In fact, the best part of the letter was where you wrote: “Remember we are NOT Doctors and have NO medical training.”

    That is very obvious.

    None of us here say that science-based medicine is perfect or that it doesn’t have shortcomings. None of us deny that there are more conflicts of interest than there should be or that there isn’t sometimes scientific fraud. However, once again, it is a false dichotomy to try to claim based on these shortcomings that “alternative medicine” works better or could do better against cancer.

  42. @Winfield Abbe:

    Please see, if you haven’t already, my comment here:

    http://www.sciencebasedmedicine.org/?p=306#comment-20116

  43. pmoran says:

    Ralph Moss has backed a quite a few losers. He has become much more cautious in his endorsement of alternative methods since he wrote “the Cancer Industry”.

    He no longer even backs Laetrile. The writing of that book was partly triggered by his ill-informed understanding of the Sloan-Kettering research on Laetrile for cancers in mice and subsequent sacking.

    I am sure he would admit that no alternative method has anywhere near the reliability of chemotherapy in Hodgkins disease.

    And there no law saying that cancer should be easy to treat — there are many reasons why it is not, including the fact that the cells are really a rogue version of “us”.

  44. Eric Jackson says:

    Yes, I’m sure that the Taxols, Doxil, gamma-knives, the dozens of antibody treatments now available can be called a gross failure. The gene-chip based means of identifying cancers, the gold nanoparticle-antibody complexes, the gene-therapy based solutions, all of which are starting to come to fruition, yes those are all a complete waste of money.

    Just to draw from a personal example, I’ve got a relative who’s had no recurrence of Inflammatory Breast Cancer for almost ten years now. Care to speculate on what the survival rate for that one was in say, 1971? Not to be provocative or insulting, but before Herceptin (approved… 1998 I believe?), it was not a pretty picture.

    Dr. Gorski’s point is well made – when we see cancer dealt with in the newspapers and on television, it’s treated like it’s just ‘one’ disease. Sometimes, we see ‘breast cancer’ or ‘leukemia’ separated out – but even these are groupings of dozens of related types of cancer – not all leukemias are created equal, not are all breast cancers. The sort of view that seems to get presented in the general media is that there’s going to be some sort of universal panacea, a single pill that makes the word ‘cancer’ disappear as readily as a simple childhood ear infection.

    While I’m by no means an expert, I have had the opportunity to see how radically different cancer cells types behave, and how they respond to chemotherapy, both in the dish, and an EL4 mouse lymphoma in-vivo. Cancer is neither simple nor easy to understand, and as a category, the word protean does certainly describe these diseases well.

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