When last I wrote about the sad saga of Sarah Hershberger, the 12-year-old Amish girl from northeastern Ohio with lymphoblastic lymphoma whose parents, Andy and Anna Hershberger, decided to stop her chemotherapy resulting in legal action by Akron children's Hospital to have a medical guardian appointed to make sure that Sarah continues effective science-based therapy of her tumor, I intentionally chose a rather inflammatory title in which I proclaimed that she was coming home to die. I didn't do that lightly. Rather, I did it because I was thoroughly depressed because David Michael, the woo-loving publisher of an online journal called the Journal of Natural Food and Health reported that Sarah was coming home because Maria Schimer, the court-appointed medical guardian had expressed the desire to resign, no doubt because of the vitriol being directed her way by proponents of "natural healing" being egged on by Michael and his ilk. After having flouted a ruling appointing a medical guardian and fled, subjecting Sarah to all manner of quackery, including laetrile and high dose vitamin C, oxygen therapy, detoxification, and chelation therapy, not to mention a regimen that sounds as though it might be the Gerson therapy.
That was before the Christmas and New Years holidays, during which time not much happened. Actually, as far as I can tell, nothing really happened. However, apparently there's been some action over the last couple of weeks, because I'm starting to see articles again. For instance, David Michael posted an update to his post on January 10:
Sarah and her parents still cannot return home safely yet because of legal quagmires. Due to public uproar, especially among the Amish, the court-appointed medical guardian Maria Schimer wants to resign and the hospital no longer wants to force chemotherapy upon Sarah. However, the Medina County judge has not yet accepted and signed the resignation. It is unclear if the resignation will be accepted only under certain unfavorable conditions or if another guardian must be appointed due the appellate court ruling– a ruling Ms. Schimer’s attorneys say should stand. They also say the case should not be examined for violations of the Hershbergers constitutional rights in a pending hearing at the Ohio Supreme Court.
As mentioned before, it seems that Maria Schimer doesn't want to be Sarah Hershberger's medical guardian any more. And who can blame her, given the incredible campaign of vitriol directed against her and Akron Children's Hospital, not to mention the difficulty of trying to track down where the family has been since they fled? Actually, the entire situation is muddled. Akron Children's Hospital apparently doesn't want to fight any more, but there is a ruling appointing a medical guardian, and Schimer wants that ruling to stand, arguing that even if the resignation is accepted the court legally would remain the girl's "superior guardian" and could appoint a replacement. It's not clear whether, if Schimer's resignation is approved another guardian will have to be appointed. One aspect of this case that should send chills down the spines of any advocates of children in the state of Ohio is the involvement of Maurice Thompson, who leads the libertarian 1851 Center for Constitutional Law in Ohio and is arguing for an expansive ruling in favor of parental rights that would in essence give parents a right to kill their ailing children with quackery if they so chose and suffer no consequences—other than Sarah's ultimate demise.
What also attracted my attention about this case was a hideously falsely "balanced" article that appeared in Forbes.com yesterday and was so misguided that it demanded a heapin' helpin' of not-so-Respectful Insolence. I'm referring to an article by Danielle and Andy Mayoras entitled Could You Lose The Right To Make Medical Decisions For Your Child? the framing of the problem is wrong right from the get-go:
To most parents, the question of whether the government should intervene to dictate how a child should be raised is an easy one. Parents, not the court system, should decide what is best for their children — in the absence, of course, of abuse or neglect. But does that change when a child’s life is on the line?
That is the difficult question facing a court of appeals in Ohio. What are the constitutional rights of parents to make life-or-death medical decisions for their child? What if the decision the parents make flies in the face of conventional medicine and, according to traditional doctors, means the child will die in less than a year?
Here's a hint. If the decision the parents make "flies in the face of conventional medicine" and will almost certainly lead to the death of the child within a year or two, I would argue that such treatment of the child is by definition medical neglect, even medical abuse. The Mayoras couple try to assiduously straddle the line in a way that would be laughable if it weren't so offensively wrong from a medical standpoint. First, they play up the importance of this case, and indeed the case could turn out being very important, although I'm not sure it will be as important as the Hershbergers' lawyer is trying to paint it, specifically as being on par with the Terri Schiavo case. While they concede that "conventional medicine" says that Sarah will die if she doesn't continue to receive her chemotherapy (which is correct, although there are some nuances in which there's a chance she might have been put into remission by her first round of chemotherapy but it's very small, as I've discussed), the Mayoras can't resist in diving headlong into the stupid:
But who is to say with 100% certainty that conventional medicine is right?
Indeed, if Sarah’s grandfather is correct, and her cancer really has been cured by natural means, then the Hershbergers’ decision to reject conventional medicine may have been the right one. Is that far-fetched? Not according to a recent study in the medical journal, Proceedings of the Natural Academy of Sciences. In January of 2013, the study was published based on the work of Northwestern University researchers. The study proclaims “A New Way To Kill Lymphoma Without Chemotherapy.” While the findings were preliminary, this study suggests that a natural way to defeat the disease without chemo may one day become accepted by conventional medicine.
This is silly in the extreme. The study described is preclinical, including cell culture and rodent studies. It's an interesting idea that involves using synthetic gold nanoparticles that resemble HDL cholesterol and target a high affinity HDL receptor expressed by lymphoma cells. Basically, compared to natural HDL, the gold HDL nanoparticles limit cholesterol delivery and promote cholesterol efflux from the cell, in the process killing the cell. Because the receptor targeted is expressed at a three- to four-fold higher level in lymphoma cells than it is in regular B-cells, lymphoma is more susceptible to this treatment. Reviewing the paper, I found the effect sizes not unreasonable and the specificity for lymphoma reasonable.
However, whether these HDL nanoparticles will ever come to fruition as an effective treatment for lymphoma is very much an open question right now. Based on the number of promising treatments that show activity in cell culture and animal studies but fail to go any further, the odds are that this idea won't be translated into an effective treatment for lymphoma used in actual human beings. That's not pessimism. That's just reality. I could be wrong, of course, but the odds are not in favor of it. All of this makes what the Mayoras write next completely unjustifiable:
This study does not necessarily mean that the Hershbergers made the right decision. Again, it is preliminary and it involved a different type of cancer cells than what Sarah has. But, it certainly shows that what is considered “proper and necessary medical treatment” for lymphoma may change in the not-so-distant future. Conventional medicine norms always change … otherwise, doctors would still keep a supply of leaches on hand for regular use. And different countries have different views on what is accepted treatment for many diseases, including cancer.
No one knows with certainty what the best medical treatment should be for Sarah. In fact, the last Court of Appeals opinion noted that the chemo treatment itself could kill her. The Hershbergers are very worried that chemo will do exactly that, and they believe that there is a better course of treatment available for their daughter. Shouldn’t they be allowed to make that decision without the interference of the court system?
The stupid, it burns us, precious.
Seriously, do Danielle and Andy Mayoras even know how bad an argument this is? while it's true that the standard of care changes based on the evidence and based on the development of new treatments, it's not likely that this particular approach is going to lead to new treatments that supersede the current "proper and necessary treatment" for Sarah's form of lymphoma in the "not-so-distant future." Do these people have any idea how long it takes to go from preclinical results to the sorts of clinical trials that lead to a therapy like HDL nanoparticles being accepted as a standard of care or a part of the standard of care, much less replacing an existing therapy as the "proper and necessary treatment"? Recall that the current standard of care for childhood lymphoma can result in greater than 80% survival rate. In Sarah's case, it's often cited as being around 85%. It's very hard to do better than that, which means that most likely any changes in the standard of care for Sarah's lymphoma will involve tinkering around the edges, adding a drug here, increasing or changing the length of treatment there, in other words incremental changes.
Basically, the entire argument being made here is a massive appeal to ignorance that's worse than the typical appeal to ignorance in that it's a false appeal to ignorance. We have effective therapy for Sarah's form of lymphoma. We know what works; we know the odds that it will work; we know the potential complications and what the odds are that they will occur. We also know that what the Hershbergers are doing will not work, consisting, as it does, of pure quackery that has been shown to be quackery. To argue that the Hershbergers might have been justified in their decision to choose quackery over known effective therapy just because the standard of care for her disease is likely to change at some unknown point in the future betrays a massive ignorance of what the Hershergers are doing. and how medical science works. It's a massively false equivalence, so false that it's an insult to the intelligence, to the point where they write, apparently with a straight face:
Hopefully, the natural treatment Sarah received in Central America will succeed as the Hershberger family says it has. If it does, it may call into question the very laws that permitted this guardianship case to proceed to probate court in the first place.
The odds of the "natural treatment" Sarah has received working are slim and none, for reasons that I've explained, which means that the odds of calling into question the laws that allow the court to appoint a medical guardian for Sarah based on the quackery to which the Hershbergers subjected their daughter working. Again, there's a small chance that the induction chemotherapy and part of the consolidation chemotherapy that Sarah Hershberger's already undergone might result in her long term survival, but the chances are small. There's a reason why the chemotherapy regimen for lymphoblastic lymphoma is over two years in length, and it's not because, as so many of the cancer quackery supporters weighing in on behalf of the Hershbergers claim, doctors love to poison little children.
I don't know what's going to happen with the Sarah Hershberger case. I wish I did, but I don't. My fear is that Sarah will die of her cancer, because her family stopped her chemotherapy before she even got very far into its second phase, the induction phase. There's a small chance she will survive because the chemotherapy she's already undergone happened to be enough. I sincerely hope that happens, but fear that it almost certainly won't. My hope is that Andy Hershberger comes to his senses and brings his daughter in to complete her chemotherapy before it's too late. Unfortunately, that's just a hope. Far more likely is that Sarah will die before her court case is appealed to the various courts to which her lawyers say they will appeal it. I hate to be so blunt and negative, but that's really what is the most likely.
And Danielle and Andy Mayoras are not helping. They seem far more interested in using the Sarah Hershberger case as a way of selling their estate planning practice and business than they are in Sarah's welfare or even in making a coherent argument.
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otherwise, doctors would still keep a supply of leaches on hand for regular use.
"Leaches", as in solvents? REALLY, Forbes?
Perhaps they meant "chelating agents", like some DAN doctors we know.
If this girl survives, her survival will be heralded as a "triumph" for parental rights and quack treatments, ignoring completely that she did at least start her chemotherapy. If she dies, the chemotherapy she received will be blamed for her death. It seems like more and more people reject science-based-medicine for the magical claims of quacks. Is that due to declining understanding of science and medicine by people and/or because the quacks have become slicker in the marketing? Probably both.
Yes, because injecting gold nanoparticles is "natural".
Not deprecating the method itself, just the false analogy by the journalists - very silly indeed. A method devised by scientists in a lab could be working, maybe, so that proves that whatever the Amish family used is working, too.
Actually, I am thinking they didn't read the article, beside the title. "Nano" is one of these fear-mongering word.
Any bet that, if this nanoparticle is indeed working and is adopted by mainstream, it will be labeled as "Chemo" by the alt-med?
As Orac pointed, medical neglect/abuse is precisely our point. Funny how the small print in social contracts is quoted and as soon forgotten.
Opponents to abortion have a similar behavior when saying "except, of course, if the life of the mother is at risk".
This is a bit an overstatement. The argument is that Schimer is unable to discharge her duty.
In any event, oral argument is scheduled for February 13.
(In addition, Olberholtzer has yet to be granted permission to withdraw as counsel for the Hershbergers.)
@Helianthus
Well, gold is natural. Therefore, it's a natural therapy and good.
Well, gold is a chemical. Therefore it is chemotherapy and bad.
So, what organic fruit or produce do I eat to ensure I'm 'naturally' getting my recommended dietary allowance of gold nanoparticles?
True, that is the legal argument. I'm referring to the inference I make from her having requested to be allowed to resign as guardian in the first place and other things I've seen happening to the hospital.
I'd OCR that if my Acrobat Pro hadn't apparently gone south. The last Court of Appeals opinion is the reversal and remand in 13CA0066-M. The statement to hand is ¶ 18 (typos mine):
"Dr. [Prasad] Bodes [sic] further testified there are short-term and long-term effects and appreciable risks from being treated with chemotherapy. The short-term effects include S.H.'s hair falling out, she will suffer fatigue and nausea and she will be at risk for uncontrolled bleeding and developing infections. The long-term concerns are that she will become infertile, and she will have a higher risk of developing cardiovascular disease. In addition, the treatment itself may damage here other organs and there is an increased risk of contracting other cancers. S.H. has a small but appreciable risk of dying from the treatment itself."
Somehow, I don't believe this level of disclosure was provided by the "clinic" in "Central America." And picking out this paragraph is to wantonly ignore the other 21 that followed.
^ "her other organs"
Looks to be the only one, but I need to turn in for a bit.
"Natural" healing. This makes me so cranky, and even crankier because the APHA call for abstracts for the convention in November is online, and they are soliciting papers on (s)CAM.
https://apha.confex.com/apha/142am/achp.htm
Wither, wit? As some Shakespeare character once said.
Seriously, do Danielle and Andy Mayoras even know how bad an argument this is?
It is difficult to get a man to understand something when his paycheck depends on his not understanding it.
doctors would still keep a supply of leaches on hand for regular use
Good catch, HDB. The authors of that piece imply that MMS has been considered a valid medical treatment.
So, what organic fruit or produce do I eat to ensure I’m ‘naturally’ getting my recommended dietary allowance of gold nanoparticles?
I get my daily dose of gold from Goldschläger. Or does it not work if it's injested and not "nano?"
I really wish articles like the Forbes one cited here would not limit the language of "rights" to parents. Children have rights too. It's a lot more appropriate, in my view, to talk about parental responsibilities and powers given to the parents to let them fill that responsibility - powers contingent on the parent actually fulfilling it. It's not about you, parents.
End of pet peeve.
To parents like Andy Hershberger, it is about them and their rights, not the child and her rights.
http://scienceblogs.com/insolence/2013/10/29/children-are-not-their-par…
I just posted a comment at the "estate planners" who wrote that execrable article about Sarah Hershberger's cancer treatment and parental rights...with a link to Orac's post. (Expand All Comments):
http://www.forbes.com/sites/trialandheirs/2014/01/27/could-you-lose-the…
Re: Leaches
They meant to say Leeches, as in the segmented worm.
What is ironic about that statement is that leeches are still used in the hospital setting today.
I remember a journal club discussion back in my undergrad years as a microbiology student, we discussed an article on leech therapy and the potential uses and benefits.
So, I searched leech therapy and one of the first things to pop up was a link to the UW health page on leeches and their use in the clinical setting. Here is an interesting excerpt:
ha! they also spelled leeches--leaches. ridic...
here is the link:
http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexM…
skeptiquette
I'm not sure that's true for the Hershbergers, and I don't think that comes across from the story as it's discussed in your post. I hope, Orac, that the parents do think they're trying to do the right thing for their child, and it's not about "I'll do what I feel like, and you can't stop me because it's my right". They're just dangerously, probably fatally, wrong about what that thing is.
Though some things I hear from anti-vaccine parents sometimes make me wonder on where they put the emphasis. Maybe that's unfair.
I think what your post linked above demonstrates is how those around that very, very hurting family are emphasizing rights. And I do agree with your critique of that dialogue and way of thought. We made a meme on this - warning: not nice picture - it's in the vaccine context, but the point is more general: https://www.facebook.com/photo.php?fbid=563305490406131&set=pb.41464330…
Over the years, I've found that the two motivations are not mutually exclusive. Parents try to do what they think is best for their child and make a huge mistake in pursuing quackery. Then the law, alarmed at a potential preventable death of a child, tells them they shouldn't do that, and they go into full "fight the power" and "it's my right" mode. By the time these cases go to legal action, the parents have become so used to using assertions of parental rights as a weapon that they can't stop. And, yes, they do believe they are doing what's best for the child, which, conveniently enough (and predictably enough from a human psychology standpoint) is usually what they had decided on already. Down the road, though, it very often becomes more about parental rights than what's best for the child. I've seen it before. My experience is that you can't easily separate the two in these cases, and it's very hard to know when wanting to do what's right for a child becomes so entwined in asserting parental rights that the parent can't admit he's made a mistake.
Worse, the various "health freedom" quacks who inevitably glom onto these cases make it far more about the parental "right" to choose quackery for their children than about what is, in fact, best for the child. Once these groups glom onto such cases, a negotiated resolution often becomes impossible, and it's the courts.
That's a good point (the inability to separate the motivation, and the hardening of the position). And maybe it's another reason to try and put in place more ADR mechanisms in hospitals that will work with both sides in softer ways to try and prevent getting into a fight over rights that would ultimately hurt the child. I don't know if that's feasible.
For one thing, timing may not always work, but if the time is there, not starting with an injunction might help.
Helianthus: Opponents to abortion have a similar behavior when saying “except, of course, if the life of the mother is at risk”.
Don't be fooled, that's just a fig leaf; they and their god don't care about the mother at all.
@Dorit:
Previous posts I've done on this case might help you see what set the family off, for example:
http://scienceblogs.com/insolence/2013/11/04/chris-wark-spins-the-story…
Also, the family gets rewards, once they go down this path. They become heroes to the "health freedom" crowd, viewed as persecuted for their standing up for "parental rights" and heroic for advocating the "right" to choose alternative medicine. Fundraisers happen. Lawyers volunteer to take their case. They get news coverage. They have a near-instant support network to help them. The problem is, that same support network makes it very hard for them to back down, lest they disappoint all the people fighting for them.
The openness in the words of Mr. Wark - that parental choice are important enough to trump the child's life - shocks me. Maybe it shouldn't.
And yes, I know there are rewards to the parents. But there's a sick child there, too. I don't see most parents ignoring that. Maybe I'm naive.
Well, definitely I'm naive. In many ways. I'm learning how much.
@Orac:
And this goes back to your earlier point: they chose this course. It will be hard to back down even without the fear of disappointment, because of the sunk costs, confirmation bias, and hardening of their position.
And yes, the network will make it harder, for a lot of reason. I guess that's part of our "vaccines cause autism" problem.
No, newcomers to this issue are often surprised by this. I was. Perhaps I've simply become too jaded, too inured to this sort of rhetoric, having seen it so many times before. I forget how hard it is for newcomers to believe that anyone would actually think that parental rights trump the rights of the child. I note that it's basically exactly the same argument antivaxers make. It's an easier argument for antivaxers to make, because the harm is not as obvious to the average person. Making the argument in the context of a child with a cancer that will be fatal if not treated properly focuses the issue nicely and makes it very obvious, n'est-ce pas?
It's not for nothing that I said in an earlier post that children are not the property of the parents in response to these sorts of arguments.
I'd find it interesting if you would comment on the actual legal arguments going on here. It's Case 3CA0089-M, Medina County, OH.
http://www.co.medina.oh.us/medct_epublicnodr/pages/DetailForm.aspx?case…
There are a number of issues in the documents. Focusing on the one that's most relevant here, the parents' argument is pretty straightforward: Our jurisprudence - especially Supreme Court jurisprudence - gives substantial respect to parental rights. Including the right to make medical decisions. They are right, to a point. Parental rights have been recognized by our constitutional jurisprudence in many contexts early and often. Early cases in education include Pierce and Meyers (let me know if you want full citations), and later on Wisconsin v. Yoder. The Troxel case that they refer to applies this to another context, visitation rights.
But they ignore, or underplay, another line of cases, addressing the limits on those rights when it comes to health and welfare, culminating in Prince v. Massachusetts' famous statement on this that that a parent
"cannot claim freedom from compulsory vaccination for the child more than for himself on religious grounds. The right to practice religion freely does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death." Prince v. Massachusetts, 321 U.S. 158, 166-167 (1944).
Troxel itself mentions this, as does Yoder, pointing out that parental rights are not absolute, and intervention is allowed for the benefit of the child.
My reading of our federal level jurisprudence is that it's enabling: states, in some areas, have to respect parental rights. When it comes to the child health, states may intervene to protect a child. But it's up to the state how far it wants to go.
I think this was what you were asking about - would you like me to go deeper into some of the other issues in those documents? There are several there.
Whatever you feel is appropriate.
However, I can easily come up with example after example after example where parental "rights" trump children's rights. For example, here's a case (see the second half of the post) where the parents let one child die a preventable death. The courts basically told the parents not to let it happen again and let these religious zealots keep the rest of their children. Three years later, another of their children died a preventable death due to lack of treatment from basically the same disease:
http://scienceblogs.com/insolence/2013/05/28/religion-and-quackery-two-…
If you really want to have your eyes open and your mind blown (and not in a good way), you should consider contacting Rita Swan, who's made it her life's work to combat this sort of thing:
http://childrenshealthcare.org
That's the problem with enabling jurisprudence at the federal level.. it's left up to states and their political whims or wills. States may do nothing to protect a child. Or they may step in.
On the other hand, what it also means is that we can change it in a positive direction: lobbying and working for better protection for children's right.
And unfortunately, I don't see the Federal Courts forcing states to require parents to give medical treatment.
Another place where we see how careful our courts are on this - how hesitant state courts are to step in to protect children - is in the torts area. Many states still have parental immunity from torts suit for negligent medical decisions (though not all, and the Restatement (Third) of Torts argues for a move away from that).
" what it also means is that we can change it in a positive direction: lobbying and working for better protection for children’s right." - and that Sarah's parents can't claim the state stepping in is unconstitutional. Well, they can claim it, but it's not a good reflection of our federal jurisprudence.
Most of the arguments on the second appeal are toast, as they weren't brought up originally (Ohio's "health freedom amendment") or appealed to the Ohio supreme court when they should have been (claiming that the parents had to be declared unfit). I really don't see the guardianship itself going anywhere, even if Schimer herself is relieved of her duty.
I don't have the Ohio supreme court documents handy, but IIRC, Maurice,* in what would be better characterized as an incommodus curiae brief, basically argued that there was no such thing as a limited medical guardianship, which no doubt will come as a great surprise to the court.
* Maybe it was Olberholtzer; Maurice's brief is nonetheless bad enough to merit a few minutes' staring in dismay.
@Narad: Well, given the creative medicine and science we sometimes see in these areas, creative legal analysis is to be expected, and is probably more legitimate, since the law is somewhat more malleable to human arguments than, let's say, biology.
PGP, every time you post claiming to know what some group that isn't you and doesn't even include you thinks or feels, my opinion of you comes to resemble even more my opinion of Greg.
Hello Lilady,
I also posted on the article at Forbes. The story of Sarah Hershberger is very disturbing, and I think I have something to say about the issue. All my best.
Anteaus: Unlike Greg, my opinions are supported by facts, and I happen to live in this universe.
A very, very narrow little cell in this universe, unfortunately.
There's a great big world out there, full of people who are different from you. Try it sometime.
Basically, compared to natural HDL, the gold HDL nanoparticles limit cholesterol delivery and promote cholesterol efflux from the cell, in the process killing the cell. Because the receptor targeted is expressed at a three- to four-fold higher level in lymphoma cells than it is in regular B-cells, lymphoma is more susceptible to this treatment.
So gold nanoparticles are cytotoxic, just more toxic against lymphoma cells than against their non-oncogenic counterparts? (Goggle rewards me with a huge list of papers on the topic of "gold nonparticle toxicity").
To say that "this is not chemotherapy", the Mayoras couple must have been quite insistent on a preconceived idea that "viable alternatives to chemotherapy ARE REAL".
@Dorit
Re: Prince v. Massachusetts
Given this rather clear decision from SCOTUS, I'm at lost to understand why so many school districts and public health agencies are so lax with the religious freedom exemption from vaccination?
Any insight?
PNAS is a "medical journal"?
Evidently the journalists only read the press release (promising "A New Way To Kill Lymphoma Without Chemotherapy") rather than the actual PNAS article, so don't expect them to care.
The press release is execrable even for its genre, invoking such choice phrases as "double whammy" and "tricks up sleeve", written down for its intended audience.
A series of comments were made by Scott Bunkelmann, a parent who lost his child to the same cancer as Sarah. Powerful words, deep love for his lost son, and an appeal to the Hershberger's to do the right thing.
@38 Francois: Many school districts actually have an objective problem enforcing it. To remind you, as I mentioned, Prince v. Massachusetts allows state to pass laws, but doesn't require it. Several decisions of courts made it harder to enforce. Among these, courts in New York, for example, said it's acceptable for someone whose religious supports vaccines to have his or her own religious view that opposes vaccines; Berg v. Glen Cove City School Dist., 853 F. Supp. 651, 655 (E.D.N.Y. 1994).. Courts in other state said that if the state did not require show of sincerity in its laws, officials may not demand show of sincerity - they have to accept claims on faith (LePage v. State of Wyoming Department of Health, 18 P.3d 1177, 1180 (2001) (“the statutory language lacks any mention of an inquiry by the state into the sincerity of religious beliefs. As a result, the Department of Health exceeded its legislative authority when it conducted a further inquiry into the sincerity of Mrs. LePage's religious beliefs”).
Then there are political factors - officials may know that anti-vaccine activists had political successes and are worried about backlash; or just inertia, or being overburdened with other things.
@Kelly 42 - Mr. Bunklemann's words were incredibly powerful, I agree. His story of his young, brave boy touched my heart very much. I admire his ability, after what must have been incredibly hard, and although the treatment didn't work for his son, to speak in a calm, reasoned voice. I hope some parents listen.
@ Scott Bunkelmann: I just read your posts about your beloved son and it brought tears to my eyes.
So, I posted a comment below your last comment, with links to every post by Orac, about Sarah Hershberger, dating back to October. Now, my comment is "in moderation". (Too many links, I suppose)
The legal briefs linked by Orac make it clear that she was not in remission after induction. So her chances of living without real treatment would appear exceedingly slim. This bodes ill...
It's hard to argue against this one; the state is in the position of passing on orthodoxy otherwise. If you look at the NYSED decisions, for all the bitching and moaning about the jackbooted thuggery of New York State actually taking the trouble to examine claims for religious exemption and how it's nearly impossible to get one and, oh, they're soooo mean to Patricia Finn, if you come in requesting exemption solely from vaccines cultured on fetal cell lines, you're golden.
At our dinner table
Out the blue, this old acquaintance of my dinner partner pipes up with a story. Her 12 year old daughter was treated for non Hodgkins lymphoma for two years at a major cancer center.
Well insured, did everything asked. Daughter suffered a lot. When her hair came back, it was a different color and texture, too. She recurred and died at age 18. Some years later, this mom is still traumatized. Also she's very cynical about the intents and advantages of conventional medicine. Sad.
@Narad - I actually agree, and I even understand the logic of not allowing to police sincerity without legislative approval, because I'm not quite comfortable with the state as conscience police. But the practical result is that the religious exemption is hard or impossible to police for abuse and encourages people to lie. These are good reasons for legislatures to reconsider them, especially since they're not constitutionally required to provide people. You want to exempt anyone who wants, use a personal choice exemption, not a religious one (and in my view, make it hard to get).
@Dorit: I have managed to misplace three comments regarding Finn and New York's policies in the Robert O. Young thread.
I've had this disagreement before with our very host. I'm of the opinion that "philosophical" exemptions should be the first to go, so long as the religious ones are scrutinized at least at the New York level. It's pretty easy to identify the faulty ones, which are the great majority. (Indeed, I'm surprised that New York claimants are so atrocious at it, given the stockpile of decisions available illustrating precisely how not to go about the task.)
This, of course, is never going to happen, as the states just don't want to spend the money on an appropriate administrative system.
True, but the last contact doctors had was months ago, and it is possible that there was some delayed effect of the chemotherapy that she had gotten before the family bolted. I agree, a slim chance, but not impossible.
The use of nanoparticles (gold or otherwise) for drug delivery systems is still in its infancy.
However, there's a paucity in the data regarding the ADME of these particles, and there aren't many validated quantification and/or characterization techniques for many such particles in biological media. I believe there's some techniques for fulleremes and Au-NPs.
So before NP therapies hit mainstream medicine, there's still a lot of research to be done.
@Darwy - from what I have read, Nano-particles aren't the safest (yet) and probably should be avoided until a lot more testing it done....seems that these "nano-particles" tend to react in fairly nasty ways to the human biology, in a lot of ways that we have very little understanding at this time.
@Narad, I think we'll have to disagree. I don't think the religious exemptions are so easy to enforce, and I really am not quite comfortable with the state acting as "conscience police" - though one of my faculty colleagues suggested using something akin to the Vietnam War boards for conscientious objectors, giving the decision to a board of private citizens, with an appeal that's not easy to use.
I'm not sure I'd be comfortable with no exemptions but medical, because I'm worried about the tiny minority that would not vaccinate no matter what - I don't want to force them to lie, and I have doubts about forcing them to homeschool, too. My current tendency is, as I said, to a narrow personal choice (I don't like "philosophical") exemption. But I'm still working through my thoughts on this, so thanks for the chance to discuss it.
Well, part of the issue with the particles is they don't react the same as their bulk (ie: not nanoscale) counterparts. So you can't just say, "Well non nanosized silver doesn't pose a risk, therefore nanosized silver shouldn't either."
I have a little experience with silver nanoparticles. Their antibacterial/antimicrobial properties are due mostly to the release of the silver cation - and studies have shown that the cation is more effectively adsorbed through the GI tract, and that size is inversely correlated to uptake rate.
The 'first pass' effect of the liver has not shown to be at all effective for removal of AgNps from the blood for fecal excretion - but there is ample evidence that the silver cation can be taken up into hepatic cells in place of the sodium cation - as the body isn't able to differentiate between the two metals.
Once in the cell, the nanoparticle can cause ROS generation leading to cell death. We also have evidence of liver impairment, hepatotoxicity, risk of accumulation, and granuloma induction in the liver, kidneys and colon.
AgNPs are also recognized as cytotixic to mammalian germline stem cells, capable of reduction in mitochondrial function, causing membrane leakage and cell necrosis and apoptosis.
So yeah... we have a LONG way to go before this hits mainstream medicine.
I think it's essentially useless to argue with people who are that religious. If Sarah lives, they get to be heroes in the alt-med movement; if she dies, they shrug their shoulders, say "It was G-d's will," and move on with their lives. Either way, there's no rationality in it.
I've noticed that about a lot of the Burzynski victims Bob B. has chronicled over on The Other Burzynski Patient Group -- almost all of them are religious to a fault, with the majority being (as far as I can tell) what I tend to refer to as "flying-saucer Christians," as they always seem to sort of be waiting for Jebus to descend in a flying saucer and take them away from their troubles, or other sort of syncretic twaddle.
Oh, that's OK, I'm used to it. In fact, I can't offhand think of anybody who has agreed with me on this one.
I think the indicia of a failed case are pretty easy to identify, most glaringly whether vaccine safety or effectiveness is deployed in the application. Once the administrative-law machinery is in place, most of the work is simply sorting into three piles.
First of all, this wouldn't satisfy them, as evidenced by Finn's hysterical consolidated complaint, in which two of the plaintiffs are bleating about being excluded from school to contain potential outbreaks (the real insanity starts to be unleashed around ¶ 67, IIRC).
Moreover, "conscientious objector" status is essentially an expansion of religious objection (Seeger, Welsh). These criteria are really no simpler than religious ones; in fact, they might be more hairy (Gillette, which could be extrapolated to preventing objection to specific vaccines).
These people are inveterate liars. If you scour around MDC, you'll find advice about going out of state to pick and choose vaccines (DT is popular) even where philosophical exemptions are available.
My current tendency is, as I said, to a narrow personal choice (I don’t like “philosophical”) exemption.
I don't know that the label that attaches is of much importance. The question is what options are available to limit them. If one considers what transpired with California's recent AB 2109, Jerry Brown felt compelled to purport to create a religious exemption by executive fiat.
I think this goes to why it would be easier to seriously deal with proliferating exemptions by eliminating "philosophical" ones first (and, as noted, I realize this is firmly in the realm of the hypothetical): The general public doesn't realize that religious exemptions aren't Constitutionally required, and ideas of religious freedom are deeply culturally ingrained. In fact, I'd go so far as to suggest that if push came to shove, an attempt to limit them could lead to a modern-day reconsideration of Jacobson and it's heirs.
Hey, it's not like I much get the opportunity otherwise.
That's far more accurate, although the people who care aboot the mother are nosy busybodies as it is nobody's business but the woman's. doG is such a DiNozzo
^ One failed blockquote in #57; I hope it's apparent.
I have to state that I'm with Narad on the subject of eliminating Religious/Personal Belief Exemptions, because...
An older cousin was left with permanent neurological sequelae from measles encephalopathy, contracted before measles vaccine was developed.
I have memories of polio outbreaks and my childhood chum died from polio, before the licensing of Salk's polio vaccine.
My public health experiences, and seeing first hand infants and children maimed or dead from vaccine-preventable-diseases.
Yup...I'm a hard a$$er, when it comes to infant and child heath issues.
"I think the indicia of a failed case are pretty easy to identify, most glaringly whether vaccine safety or effectiveness is deployed in the application. Once the administrative-law machinery is in place, most of the work is simply sorting into three piles."
the problem is that since I think most claims are not really for religious beliefs, enforcing the exemption under a standard of sincerity simply means giving it to those that consulted a lawyer or read Alan Phillips' book before filling the exemption. In his radio show and the book, Attorney Phillips warns that most people's "common sense" approach to writing exemptions gets them into trouble - that's because for most of them the real reasons are not religious, and they need to be warned off saying that. So the religious exemption, for me, rewards those who consult a lawyer or who are more sophisticated liars.
It's true, I think, that the public is not aware that religious exemptions are not constitutionally mandated, and I agree that that was behind Brown's (illegal, in my view: http://www.uchastings.edu/news/articles/2013/10/reiss-viewpoint-lawsign…) additional religious exemption. But legislators can be educated on the state of the law. Given the consistency in which federal courts upheld the Jacobson legacy (Most recently in Workman v. Mingo County Board), I'm not sure a push to abolish exemptions would be the main issue - exemptions are a legislative creatures. And I think increasing outbreaks could push the other way.
Ross Silverman has some interesting ideas in a 2003 article on exemptions on how to tighten the philosophical ones.
Has anyone seen Mary Holland's article about the Hepatitis B and Jacobson?
Interesting: "8. Existing universal vaccination policies appear to enjoy widespread support, but pro- posals to restrict existing grounds for exemption divide the public along partisan lines. Despite sup- port for universal vaccination policies and widespread disapproval of parents who refuse to permit vac- cination of their children based on concerns about vaccine risks, proposals to restrict or eliminate moral or religious grounds for opting out of vaccination requirements provoke dissensus along largely partisan lines consistent with citizens’ general orientation toward government regulation.
...
4. Because there is a chance that it would make mandatory vaccination policies a matter of partisan contestation, campaigns to promote legislative elimination or contraction of existing grounds for exemptions should be viewed with extreme caution. There is reason to believe—from re- al-world experience as well as the results of this study—that proposals to restrict nonmedical exemptions from existing mandates would generate partisan division in the public. As evidenced by the controversy over the HPV vaccine, such divisions disrupt the processes by which ordinary citizens recognize and ori- ent themselves with respect to the best-available evidence on public-health and other risks. Accordingly, the potential for creating polarization over childhood vaccination risks is a cost that must be balanced against whatever benefit might be obtained from reforms in law aimed at reducing the already very low percentage of parents that exempt their children from mandatory vaccination." http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2386034
Unless the lawyer is Patricia Finn, of course, but I agree to some extent. The reason I hedge that is because even if one presents an application that is not grossly defective on its face (or, considering New York, even if one does), there remains a requirement to be able to articulate those beliefs on one's own.
"In determining whether beliefs are religious in nature and sincerely held, school officials must make a good faith effort to assess the credibility and sincerity of petitioners’ statements and may consider petitioners’ demeanor and forthrightness."
(Canonically "Appeal of C.S., 49 Ed. Dep't Rep. 106, Decision No. 15,971; Appeal of H.K. and T.K., 49 id. 56, Decision No. 15,957; Appeal of S.B., 48 id. 332, Decision No. 15,875").
Here, for those following along (PDF).
My understanding is that the requirements to articulate those beliefs is currently applied only to states where the legislature included sincerity in the exemption. Otherwise, examining sincerity is not allowed, and the officials have to accept the applicants claims at face value.
I'm kind of wishing I could send you a draft paper related to this, Narad. When it's ready for SSRN, I'll link.
I'd really like to see some background on this, as "sincerely held" is of course a sine qua non. If a state's "religious exemption" is drafted to be no different from a "philosophical" exemption, the question of which is a worse idea would seem to be pretty much moot.
Well, we are FB Frens. Just send me an E-mail address if you want.
Dorit...remember R.P. who we encountered on Seth Mnookin's blog last month? She was the non-lawyer NY State resident who was selling legal advice to parents seeking a Religious or Personal Belief Exemption:
http://blogs.plos.org/thepanicvirus/2013/12/03/katie-couric-promotes-da…
Here's another of her blogs with videotapes of her and her husband being questioned about their "Sincerely Held Religious Belief":
http://mykidsmychoice.blogspot.com/
(continued below)
We are FB friends? Can you PM me? And by the way, my email address is very, very easy to find with my name and work place.
Some states require sincerity - I know New York, North Carolina, Maryland do. In some states that do not, court ruled officials cannot inquire.
Here are the cases:
Department of Health v. Curry, 722 So.2d 874 (Fla.App. 1 Dist. 1998).
LePage v. State, 2001 WY 26, 18 P.3d 1177 (2001)
Of course, it's not an issue in states that have a personal belief exemption. I think Diana H (http://www.leagle.com/decision/2007371171P3d200_1369) implies a similar approach, but it can be interpreted differently.
Hope that helps.
R.P. and her husband did not prevail...in spite of the falsification of her child's vaccine administration record:
http://www.counsel.nysed.gov/Decisions/volume47/d15648.htm
R.P. was also a guest columnist on AoA (surprise, surprise).
Thanks, Lilady. That's helpful.
Sure. I thought you knew that.
Dorit, these are not honest people. Many of them will lie and falsify records in order to avoid vaccinating their children...and then brag about their dishonesty on internet boards. There's a poster on AoA who stated her alternative medicine doctor will give her a diluted vaccine and give her a completed vaccine record for her employer.
One more thing to add to the long list of things I was unaware of until hit over the head with.
Yah, I suppose I've been considering religious exemptions that are not functionally equivalent to philosophical ones. A Confucian rectification of names would probably suffer the same pushback. I am dismayed that there still exist people boneheaded enough to include language such as "the tenets and practices of a recognized church or religious denomination of which the parent or child is an adherent or member," but I still have my Moonbeam for President button.
R.P. testifying at a hearing on YouTube. Her lawyer Bob Krakow is in attendance:
http://www.youtube.com/watch?v=yWEDAIUsEPM
See more videos from the 2013 hearing in NYC, just before the start of the school year and the requirement by NYC Department of Health for yearly influenza vaccine to attend school.
Remember Grandma Marsha and Dr. Carley?
They are unforgettable, Lilady.
I know Dorit. I'm thinking about what drives people to post their testimonies/rallies/protests on YouTube. Is it all ego? Oh well, that's your entertainment for tonight. :-)
Here's her appellate loss.
Narad...no attorney for R.P. on the appeal?
"A two-hour meeting eventually occurred on September 18, 2006, at which the district representatives, petitioners and their then-attorney were present."
The "interrogation" video, in which Palma does herself exactly no favors, has been trimmed of any identification of the attorney(s). Cohen, I'd say, errs badly in the "didn't G-d give man the wherewithal to create vaccines" question, which is merely a variation of the "what does 'G-d is on my side' mean" question, by failing to characterize it, when pressed, in terms of whether the belief as advanced actually prohibits vaccination. Inquiries into the internal coherence of the belief are strictly off-limits.
The attorney should have just given up. She meeting was being audiotaped by the school district (The videotape, I believe, was being done by R.P.'s side).
R.P. thought "G-d is on my side" would cinch the deal for her.
Jesus fucking Christ I hope not.
This case is another of those in a long list of tragic cases. Can we not tighten up on the regulations and fix this, or at least make it harder to practice sCAM ?
I have a close friend who survived Stage IV melanoma which is unheard of. She did it completely naturally. Her oncologist says that she is his only living stage IV melanoma patient. I have another friend who has succeeded naturally against pancreatic cancer. There is a place for both conventional and natural and it is sad if you cannot see it. I think you should apologize to this family and be more respectful in your future blogs.
Details, details!
Regarding the melanoma, what does "completely naturally" translate to? Did your friend have any SBM treatment at all, such as surgery to excise the melanoma?
What does “survive” translate to—2 years post diagnosis? 5? 10?
Regarding the pancreatic cancer, the same questions again: what does ‘completely naturally” and “survive “translate to?
Note that even if, for the sake of argument, we accept the unsupported claim that tow people survived melanoma and pancreatic cancer respectfully without treatment this is not sufficient evidence to rationally assign their survival to whatever alt med “completely natural” regimen they elected to embrace .
In other news, Mr. Augie has been awfully quiet these past few days....
The "1851 Center," too....
Narad: your link about Mr Augie leads to this site...
http://attcustomercaresurvey.mbcampaign.com/survey2/index.php?token=PC7…
Heh. If you can get it to work, give the guy top ratings and mention that he's the only competent support person I've ever encountered on their end. It should have gone here.
I have a close friend who survived Stage IV melanoma which is unheard of.
"Unheard of"? Carrie is too lazy or stupid to look up survival rates -- or looked them up, and decided to lie about them anyway -- and expects an apology?
My daughter was diagnosed with ALL. She had chemo till she died. When she died, she had a fusarium infection on her skin and in her sinuses. She had huge, deep, black, painful necrotic sores all over her body. She died after they debrided her sinuses and she choked to death on her own blood.
Till you watch your own child die like this, I have no respect for your opinion. There are few studies on alternative treatments for children. I feel criminal for subjecting my daughter to the horribleness that was the last year of her life.
If the world waits for parents who have watched their children die in that particular way, cristy, we will never learn anything and we might as well still be attempting to heal them with prayer or exorcisms or chanting.
Perhaps it's just me, but..
they debrided her sinuses and she choked to death on her own blood.
sounds just a bit Poe-ish.
Anyway, as I alluded to above, the Hershberger appeal was decided on the 14th, one day after oral argument. They lost. Schimer was apparently also allowed to withdraw, so either the probate court or the guardian ad litem is in charge. The Ohio supreme court today declined to exercise jurisdiction over the earlier attempt, although with no explanation so far. Maurice either has to start again at the supreme court level or this is done.
I have no respect for your opinion
We are all grateful for the effort you have taken to argue with the opinions which you don't care about.
they debrided her sinuses and she choked to death on her own blood.
sounds just a bit Poe-ish.
An out-take from The Fall of the House of Usher, perhaps? An early draft of Berenice or Ligeia?
Poe-ish or not, it is how she died. When you are faced with the death of your child, all options are considered. You start to desperately believe in magic. In hindsight, I wish I had had the courage to make some decisions like that. When I said that about opinions, I was overstating. I read everything about modern medicine and holistic medicine or "quackery". I won't count anything out. If you guys are scientists, I would prefer that you didn't either.
Before you scream about everything you know, I am saying there may be more natural treatments that are less damaging. We won't know unless the skilled scientists test them. There are financial restraints. If low cost treatments become available, there will be no profits for the ones who require them. I guess we all require them to a certain extent. (Not suggesting the treatment that sarah got in central america was free or low cost) and not saying all scientists are slaves to pharma, just saying it is how it is and a shame. And derr docktor--why do you make fun of the way my daughter died. She is not the only one to die this way, but she was mine and it was horrible. After they scraped her sinuses, the resulting blood flow suffocated her. Less Poe-ish? She didn't tolerate the bpap. She was aware and and awake seconds before her death. They encouraged me to let her go. i had to decide while she listened. So. it's not funny at all.
Also, my daughter had wished that her body be donated to science. When she died, they told me they didn't need her. They told me she was even unsuitable to be a cadaver. There was information inside her that could have useful. Deep inside her brain is the answer to why this happened. Why doesn't anyone want to know why it happened? Only how to cure it once it is there.
Although I'm normally sympathetic to a parent who has lost a child, every time "cristy" posts she sounds less convincing.
I think it's always better to take the high ground and just lay off. When people like cristy make claims that can be refuted with science and evidence, that's entirely appropriate. Have at it! However, saying anything that can be easily perceived as ridiculing what happened to her child is not cool. It might even provoke one of the very rare Orac comment deletions. I'm a cancer surgeon, and this position is entirely consistent with things I've said and done before. Those of you who've seen me remonstrate with skeptics on Twitter for doing exactly that know what I'm talking about. Admittedly, it isn't a bright line.
"You start to desperately believe in {things that simply aren't true]."
FTFY
But ruling things out is precisely what science is used for--proposing, testing, and either corroborating or falsifying hypotheses.
Wouldn't you agree that until we know--until there's actual evidence showing alternative treatments are both effective and less damaging--it's unethical for pormoters to claim they are, to encourage others to receive the treatments rather than standard of care SBM, or to charge money to provide these treatments?
Because no one sells band aids, aspirin, antacids anymore, now that they're low cost...oh, wait.
What information, exactly, and how do you know it was there?
How exactly would would you suggest one go about retrieving that answer from deep inside her brain?
We not only do but have identified many of the genetic mutations which result in ALL. Gene translocation events are the most common type of DNA change associated with leukemias, and the most common translocation in ALL is an exchange of DNA between chromosome 9 and 22 which occurs in1 out of 4 adult ALL cases.
An given that gene translocations cannot be prevented, isn't it reasonable to focus on providing treatment once they've occurred?
"Although I’m normally sympathetic to a parent who has lost a child, every time “cristy” posts she sounds less convincing."
I'm not sure what that means. Obviously, I read the wrong article. I was just trying to find out the condition of Sarah after all these months, so I was reading around.
I just have a lot of thoughts and questions. It's still hurt, I'm angry. I miss my daughter. Yes, I have a lot of guilt.
Orac, if you don't mind, just delete my part of the conversation. It doesn't belong here. Sorry.
@Cristy,
Regardless of the insensitive phrasing, I think all of the commenters here sympathize with you in the pain of your child's loss. Having lost two close relatives to cancer, I certainly do.
Science is a process of figuring out what works and how. It also involves ruling out things that don't work like laetrile.
By using science, we have been able to raise the five year survival rate for children with ALL to 94%. I wish it were better.
And, there are places like the St Jude Medical Center that will treat difficult cases for free so that we can all learn and save the lives of more children.
If the treatment offered in Central America could show similar results, I don't think you'd have to go to Central America to get it.
But, again, I am truly sorry for the death of your daughter.
Thank you. I was thinking about the things I have said here on my way to pick up the kids. These are things I never say out loud. Ever. I have never told anyone what happened that day when Caroline died. So, sorry.
I know everyone want this to be better.