Once again caring more about “parental rights” than the rights of the child being subjected to quackery

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.