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An update on the case of Sarah Hershberger: Parental rights trump the right of a child with cancer to live

Five weeks ago, when last I touched on the case of Sarah Hershberger, the now 11-year-old Amish girl from Medina County, Ohio near Akron with lymphoblastic lymphoma whose parents had taken her off of chemotherapy after only two rounds, reports had been coming out of the cancer quackery underground that Sarah’s parents, Andy and Anna Hershberger, had fled to avoid a court order that appointed a medical guardian for her to make sure that she received appropriate science-based therapy. At the time I was unable to confirm these stories in the mainstream press. However, over the last month there have been significant developments in this case and even over the last week; so I thought that now would be a good time to update SBM readers on developments in the case.

The Thanksgiving confirmation

One thing that I didn’t mention a month ago is that David Michael and others have been actively raising money to support the Hershbergers’ legal battles. Then, over the long Thanksgiving Day weekend news reports began to trickle out confirming what the “alternative” health sites had been reporting, namely that the Hershbergers had fled. These reports started with story from a local Medina newspaper, then spread to a northeast Ohio television stations, and then to national news sources (like Good Morning America and CNN) and international news outlets. The Medina Gazette first reported:

Neither the 10-year-old daughter who was ordered by a court to continue cancer treatments against her will nor the rest of her Amish family has been seen since at least last month.

Sarah Hershberger and her parents, Andy and Anna, were not at their Homer Township farm Oct. 30, when Medina County sheriff’s deputies accompanied county Job and Family Services officials on a welfare check.

County Sheriff Tom Miller said his office has no idea where the Hershbergers might be and is not actively searching for the family.

“It would take a court order for us to get involved,” Miller said, “and I’m not anticipating a court order.”

In October, an appellate court granted a request from Akron Children’s Hospital to appoint “limited guardianship” to registered nurse and attorney Maria Schimer granting Schimer the power to make medical decisions for the girl in place of her parents.

Clair Dickinson, an attorney representing Schimer, said he didn’t know the family’s whereabouts.

One point that needs to be addressed is that the parents and sources representing the parents keep claiming that Sarah is “doing much better” since being off chemotherapy and that her tumors have “shrunk” or even “disappeared” on “natural treatments.” However, no evidence is presented. We are not told what doctor is claiming that her tumors have shrunk, nor what tests were used to determine tumor burden. Given that Sarah appears to have been taken to an “alternative cancer clinic” somewhere, such claims are to be treated with a huge degree of skepticism, for obvious reasons. Many such clinics are known for using scientifically unproven tests or even outright quackery like “live blood cell analysis” to assess tumor burden. Even if Sarah has had a recent CT scan that shows no tumor or no progression of her tumor, that doesn’t mean she’s out of the woods. It can take a while for tumors to recur after a complete remission or to progress after a partial remission. If Sarah indeed had a complete remission due to her two rounds of chemotherapy—and, make no mistake, if Sarah is in complete remission it was the chemotherapy that caused it—she won’t be out of the woods until she reaches the five year mark. There’s a reason why the five year mark was chosen to measure survival of these tumors; recurrences are rare after that.

I also note that the reluctance of authorities to enforce the court order just goes to show how pervasive the attitude is that children are in essence the property of their parents, who can do anything they see fit with the child. Clearly, Medina law enforcement and court officials have been dragging their heels because they sympathize with the parents more than they care about a child who will very likely die within a year or two without effective science-based therapy for her cancer. (Yes, I’m talking to you, Medina County Sheriff Tom Miller.) I know that no one wants to take a child from a family, particularly a family that is likely viewed in its community as being full of fine, upstanding, God-fearing citizens. However, the girl has been without treatment since June, according to this account. We’re rapidly approaching six months.

So we now know that the Hershbergers fled over a month ago, as was first reported then in the “alternative” health press and now confirmed by mainstream media sources. Something else happened last week that has bearing on the case. Specifically, apparently the nurse who agreed to be the appointed medical guardian for Sarah, Maria Schimer, has resigned. According to a press release published on David Michael’s (also known as David Augenstein’s) Journal of Natural Food and Health website from the 1851 Center for Constitutional Law, which, as “health freedom” activists so frequently do, falsely and ignorantly downplays Sarah’s cancer, saying “Sarah’s mild form of cancer is a type that can and is being treated without chemotherapy.” Sarah’s cancer is not “mild.” It is aggressive, albeit curable with an intensive two year course of chemotherapy. If the cancer were “mild,” it wouldn’t require such aggressive treatment. In any case, this is the sound of the 1851 Center for Constitutional law crowing while either lying or being willfully ignorant (take your pick) about the seriousness of Sarah’s disease:

The 1851 Center for Constitutional Law today accepted the Resignation as Limited Guardian of a state official attempting to, on behalf of the State and Akron Children’s Hospital, force chemotherapy on ten-year-old Sarah Hershberger.

While the resignation still requires the signature of Probate Judge Kevin Dunn, Judge Dunn is expected to approve the resignation sometime next week, effectively ending the two-month stand-off with Sarah’s parents, Andy and Anna Hershberger, who, concerned that the chemotherapy was killing their daughter, sought the right to first try a less invasive alternative treatment that the hospital did not provide.

Andy and Anna, after the Court’s order, left the country to pursue an alternative treatment and prevent Sarah from being taken from them. The family reports that Sarah has responded well to the alternative treatment, the cancer is receding, and she is in excellent physical condition.

If the 1851 Center for Constitutional Law is correct and the parents now seem likely to prevail, Sarah Hershberger will almost certainly die, unless she happens to be one of the lucky minority of children whose tumor not only went into complete remission after two rounds of chemotherapy but doesn’t recur in a more resistant form, as most such cancers do. As I’ve pointed out, both here and at my not-so-super-secret other blog, oncologists don’t use a two year course of chemotherapy because they like to torture children. They use a two year course of chemotherapy because that’s what it takes to produce the 85% five year survival that is the current standard of care for lymphoblastic lymphoma. Its lofty claims of fighting for “parental rights” notwithstanding, the 1851 Center for Constitutional Law is in reality fighting to let Sarah Hershberger die a horrible death from cancer. Sure, it doesn’t see it that way, but medical science is quite clear that Sarah’s death will be the likely result of the actions of the 1851 Center for Constitutional Law. Already her chances of survival are fading. We just don’t know how much because we don’t know enough about her clinical situation.

Why Akron Children’s Hospital backed off and Maria Schimer bowed out

The hospital that treated Sarah Hershberger, Akron Children’s Hospital (ACH), strikes me an excellent children’s hospital. I had occasional dealings with patients who had been treated there back when I was doing my surgical residency in Cleveland. Moreover, the administration of ACH has earned my respect by its willingness to go to court to make sure that Sarah Hershberger has the best chance of surviving her cancer that science-based medicine can give her. The hospital has paid a price. Believers in alternative cancer therapies and parental rights activists regularly descend on any media report or blog post about Sarah Hershberger and castigate the hospital as being “fascist” or wanting to “poison” Sarah in order to make obscene profits by giving her chemotherapy. Its Facebook page is routinely home to the vilest slurs against the hospital, all based on the Hershberger case, such as:

So happy to see that you weren’t able to poison Sarah, and that she’s now healthy thanks to natural treatment in South America

As I write this, it’s actually not as bad on the ACH Facebook page as it was a month ago, when the news that the Hershberger’s family had fled started appearing in alt-health websites. The hospital, however, did also have to deal with Mike Adams, who harassed the hospital’s PR department and wrote about it for his audience:

These “heroes” of medicine are so moral, so ethical and so “in the right” that they won’t even reveal their names. They choose to hide behind anonymity, probably because at some level they realize their actions violate fundamental human rights and parental rights. These are crimes against families.

That’s what I told Akron Children’s Hospital public relations spokeswoman Lori Shuler, even encouraging her to “do something more meaningful with her life” than be a P.R. front woman for a destructive institution. Her answer to this? Literally, she screamed, “What an asshole!” and then slammed the phone down.

That is an on-the-record quote from Akron Children’s Hospital, by the way: “What an asshole!” This is the level of professionalism these people exhibit. They poison children for a living, then scream profanities at honest journalists trying to ask them intelligent questions about the names of the doctors involved in the lawsuit that’s forcing an innocent child to be poisoned with potentially deadly chemicals. For the record, I didn’t raise my voice at all. I was calmly asking questions and offering this person my view on the actions of their hospital.

Lori Shuler sounds as though she is a keen judge of character.

The charge that ACH is doing this because of the allegedly enormous profit it will receive from treating Sarah Hershberger is particularly ridiculous because it surely hasn’t been cheap for the hospital to pursue legal action through numerous appeals that now appear to be headed for the Ohio Supreme Court, to the point that it’s likely that the hospital, even if Sarah comes back and receives the rest of her therapy, will lose money on the case. The hospital has also endured accusations that it administered “experimental” chemotherapy without properly getting the Hershberger’s informed consent. The pressure that has been brought to bear on the hospital, both in terms of the expense of continuing the legal action and the PR nightmare it has endured over its decision to try to save the life of a girl whose parents, through a combination of religious beliefs, inability to bear watching their child suffer, and what definitely sounds like misunderstandings between Sarah’s oncologists and her parents, has made me wonder how much longer the hospital would continue. After all, ACH is being accused of conflicts of interest, of only wanting to “poison” Sarah Hershberger to make enormous profits, and of doing unauthorized research without informed consent. Any physician who’s ever worked for an NCI-designated comprehensive cancer center knows that these charges are almost certainly nonsense, borne of a combination of misunderstandings between the Hershbergers and ACH and “health freedom” activists taking advantage of them, but there comes a time when being unable to counter them publicly due to being involved in legal proceedings starts to wear on even an organization as committed to children’s health as ACH clearly is.

That’s why I wasn’t too surprised when news reports started percolating out that Ohio Amish Girl Won’t Be Forced to Have Chemo and Maria Schrimer had relinquished guardianship. I was wondering as long as a month ago how much longer ACH could keep this up, and, even more, how much longer Schimer could weather the incredible abuse that was being heaped on her for trying to do the right thing for Sarah. It’s not at all surprising that she decided:

“We don’t know where the little girl is,” said Dickinson, an attorney for Schimer. “We’ve kind of inferred that we’re not going to see her again, so it doesn’t make sense for this to continue.”

He said her family is saying she’s cancer-free as the result of natural treatments, including vitamins and herbs.

“If she is, that’s great,” Dickinson said.

“On the other hand, the undisputed medical testimony was that she would die in six months to a year without treatment.

“If she’s not cancer-free, it may be too late for chemotherapy to help her.”

And:

Dickinson said Schimer’s resignation isn’t final until Probate Judge Kevin W. Dunn accepts it. Once Dunn does, Dickinson said he plans to file a brief with the Ohio Supreme Court to say the case is moot.

“Maria’s purpose and the hospital’s purpose was to do anything we could to assist this little girl,” Dickinson said, “and we wish her well.”

It sure sounds to me as though ACH is washing its hands of the case. On the one hand, it saddens me greatly that ACH would make this decision, but on the other hand I really have a hard time blaming the ACH administration for doing so, given the expense, low likelihood of prevailing before the Ohio Supreme Court, and the continued distraction this one case has become to its mission. Most hospitals probably wouldn’t have fought as long and hard as ACH did to save the life of this child. Of course, I’d like to think that most county health authorities would not have declined to intervene, as was the case in Medina County.

So where are Sarah Hershberger and her family, anyway?

So where did Sarah Hershberger and her family flee six weeks ago, and what “alternative treatments” has she been receiving? Given my history of interest in cases like this, I was curious, and I figured that our readers would be interested in knowing as well. News reports seem to indicate that the Hershberger family fled to somewhere in Central America. I’ve also heard claims that the family fled to South America. David Michael reports that she is receiving these treatments:

Andy explained in general terms some of the treatment and nutritional supplements, including high doses of vitamin C and B17, oxygen therapy, detoxification methods, as well as the IV chelation to deliver some of these to Sarah’s bloodstream. He also explained how the doctors arrived at a cancer-free status. She is now on a special diet including lots of vegetables and raw foods and taking special natural supplements, as prescribed by the foreign doctors. Anna said they really needed to leave the area to escape the harassment, fear and pressure they had and have Sarah take biomedical therapy. Sarah only spoke a few words that included she is doing fine and feeling good and wants to come home. She is being schooled during the day while the mother also cares for the baby they needed to bring along. Sarah was very shy–this was likely to her first telephone call.

It would appear that Sarah is receiving a veritable cornucopia of quackery. For example, high dose vitamin C is ineffective against cancer, or so minimally effective as to be useless, while “vitamin B17″ is nothing more than that old discredited warhorse of cancer quackery, laetrile. Chelation therapy for cancer is a form of quackery favored by practitioners like Dr. Rashid Buttar. “Detoxification” is a generic form of treatment favored by quacks, particularly naturopaths, as are “special diets.” From the description of Sarah’s treatments, I wonder if she is undergoing some sort of variant of the Gerson protocol, which involves a lot of supplements, often a vegan diet, and frequent coffee enemas to “detoxify.”

Naturally—ahem—I was curious which clinic among the many quack clinics that exist in Central America is treating Sarah. Remember, Costa Rica was where Dan Heckenlively took his autistic daughter for intrathecal injections of “stem cells.” I found a few, although most centers that come up on searches are, in fact, in Mexico. For example, there is Centro Harmony in Costa Rica; Ageless Wonders in Panama (which is a medical tourism service that hooks up foreigners with medical services, including mainly alternative medicine services); and several others, such as Robert B. Wickman in Ecuador. Unfortunately, it’s not clear at all where the Hershbergers took Sarah to be treated; it could also have been to one of the many alternative cancer treatment clinics in Mexico as well. I’m guessing that we’ll find out eventually. Now that there is no longer the threat of the law coming to bring Sarah home, there’s no reason not to reveal the clinic anymore, although it wouldn’t surprise me if David Michael and the Hershbergers keep it secret as long as they can. No doubt they don’t want nasty skeptics like me taking too close a look at what quack treatments these clinics offer.

Parental rights versus children’s rights

What is at the center of the Sarah Hershberger saga is more than just quackery versus science-based medicine, although that is part of it. It’s more than just about how difficult it is for parents like the Hershbergers, particularly if they have a tendency towards alternative medicine already, to bear watching their children suffer through cancer treatment. It’s also about more than just the perils and pitfalls of communicating with parents whose knowledge of science is not sophisticated and who misunderstand why it’s necessary to continue treatment for childhood cancers for longer than two years. Remember, from their standpoint, if the tumors have shrunk away to seemingly nothing after only two doses, it is not at all unreasonable to wonder why more toxic chemotherapy is necessary. The tumors are gone, right?

Since I first started blogging at my not-so-super-secret other blog back in 2004, I’ve covered a number of cases like that of Sarah Hershberger, such as Daniel Hauser, Abraham Cherrix, and Katie Wernecke. These stories are depressingly similar, as are the arguments that go on over them. First, a child develops cancer. That child starts chemotherapy and does well initially. Then, the child develops side effects. The parents react quite understandably, becoming alarmed at their child’s suffering. However, because of a tendency towards magical thinking they can’t seem to see the big picture. So they stop the chemotherapy and pursue quackery. Sometimes, thinking that their child’s tumor is gone because it is no longer detectable after a cycle or two (or three) of chemotherapy, they think their child doesn’t need any more chemotherapy. They don’t understand (or accept) the rationale for two years of chemotherapy. They don’t understand that by stopping therapy so early they are greatly increasing the chances that their child’s cancer will return.

Other aspects of these stories are maddeningly similar. Usually what happens next is that either the hospital or the state’s child protective services go to court to make sure that the child receives proper cancer care. What follows is then usually a court battle in which the parents and their allies (and, yes, they always find allies like the 1851 Center for Constitutional Law) portray the hospital and child protective services as fascistic tools of big government doing the will of big pharma to torture an innocent child for fun and profit. I only exaggerate a little. Actually, no, I am not exaggerating at all. In the uncommon case in which the court actually rules that the child must undergo treatment, it is not uncommon for the parents to flee with the child. We’ve seen it with Daniel Hauser; we’ve seen it with Abraham Cherrix and Katie Wernecke; and we now see it with Sarah Hershberger.

It is this demonization of medical professionals and case workers trying to do the right thing that reveals a very disturbing aspect of the American psyche, and that’s the attitude that children are property and parents’ rights trump the well-being of the child. If you go to the Akron Children’s Hospital Facebook page, you’ll find comments like this one by a man named John Strangis (whose YouTube channel is chock full of HIV/AIDS denialism and videos on chemtrails), who writes on the ACH Facebook page:

Looks like the family won and the girl recovered with NATURAL TREATMENTS regardless of your efforts to force her into something which went against the wishes of her parents.

Then someone by the name of Elect Sys writes:

The Lord has given parents custody of children–not the state or worse yet someone who has a conflict of interest with the parents such as Akron Hospital. Flee the place at all cost!

Here’s someone named Madison Treiber:

THIS HOSPITAL IS VIOLATING HUMAN RIGHTS!!!! They are forcefully administering chemotherapy to a child who does not wish to be treated with such a method. Her parents are being legally required to allow this treatment that they, nor their daughter support.

This hospital, in conjunction with the Ohio court, are violating human rights. They are legally mandating what this girl do her body! It is not their choice. What sort of a country do we live in if the courts can decide how we treat our ailments?? They are robbing this child and her family of their freedoms. There are so many other options in treating cancer, and everyone should be able to pursue the treatments THEY prefer, not be legally required to do what the state thinks is best.

Note how Ms. Treiber doesn’t seem to consider endangering the life of a child by withholding potentially life-saving treatment to be a violation of human rights. If you scroll back to the early part of October on the posts on the ACH Facebook page, which is around the time the ruling that Sarah Hershberger should undergo chemotherapy was handed down, you’ll find screed after screed after screed castigating ACH using similar arguments. They all boil down to outrage that any entity, be it the hospital, the courts, child protective services, or any other agency of the government, would dare to interfere with the parents’ absolute right (in their view) to care for their children the way that they see fit. It doesn’t matter that the parents are endangering Sarah Hershberger’s life by withholding the only treatment that can save her in favor of “natural healing” that can’t. While many commenters try to argue that this “natural healing” will work better than chemotherapy, more than a few of them seem to realize deep down that it won’t. They’ll qualify their statement by saying that the parent has the “right to choose” what is “best” for their child even if it’s clearly not, even as they express outrage that the state would try to intervene in the best interests of the child.

This belief that parental rights over their children are absolute and inviolate is not only common, but it takes some insidious forms, particularly when the abuse of children is based on religion. Given the strong tradition of religious freedom in this country that is inscribed in our very Constitution, it is understandable that people don’t want the government telling them how to practice their religion or interfering with their religion. However, as with all rights, the parents’ right to raise their children as they see fit has to be balanced with the rights of the child to life. When the exercise of a parents’ religion endangers the life of a child, the life of the child takes precedence—or should. It doesn’t always. It’s rare that parents who deny their children medical care suffer any penalty. (It does happen occasionally, but cases like this are rare.) Indeed, so much do government authorities bend over backward to respect parental rights that it is possible for parents who let one child die of pneumonia untreated because they believed Jesus would heal him retain custody of the rest of their children so that they could do it again and let a second child die.

We see this particular attitude among antivaccinationists as well. For instance, just the other day, the antivaccine crank blog Age of Autism published a little screed by someone named Dr. Karol Osborne entitled Concerns: UN Convention on Rights of Persons With Disabilities. Noting that the U.S. Senate has not yet ratified this treaty, Osborne is upset because this treaty would adopt a standard that is based on the “best interests of the child,” and she fears that such a standard might interfere with the ability of antivaccine parents to not vaccinate. She also fears (likely with more justification) that such a standard would make it far more difficult for antivaccine parents to subject their children to “autism biomed” quackery such as when Kent Heckenlively subjected his daughter to bogus “stem cell” treatments in Costa Rica or when parents risk the lives of their children by subjecting them to quackery like the Lupron protocol or chelation therapy.

If you read the actual text of the convention, however, it’s nowhere near as ominous as people like Osborne try to paint it. Article 5, for instance, states that “States Parties shall respect the responsibilities, rights and duties of parents or, where applicable, the members of the extended family or community as provided for by local custom, legal guardians or other persons legally responsible for the child, to provide, in a manner consistent with the evolving capacities of the child, appropriate direction and guidance in the exercise by the child of the rights recognized in the present Convention.” I will say that parts of the document strike me as a bit utopian, but not any horrific threat to parental authority.

I actually do understand to some extent how parents might take a dim view of too much government interference in how they raise their children, particularly if government views conflict with cultural views. I also recognize that there are gray areas, where it’s not clear whose vision of the best interests of the child should prevail. I am not talking about such gray areas. I’m referring to how an utter insistence the inviolability of parental rights leads to children being harmed, even dying. It’s an insistence that has led to a Proposed Parental Rights Amendment to the U.S. Constitution that would essentially neuter the government with respect to protecting children from parental medical neglect or mistreatment. No wonder antivaccinationists like it.

Cases like that of Sarah Hershberger are also directly attributable to the “health freedom” movement—or, as I like to refer to it, the freedom from pesky interference from laws and regulations designed to protect patients from quacks. I’ve said many times before that competent adults have the right to refuse any and all treatments and choose quackery if that is what they want to do. Acknowledging that right, however, is only part of what the “health freedom” movement is about. The other part is to free quacks from the shackles of having to abide by FDA and FTC regulations designed to protect consumers from false medical claims and allow them to claim anything they want.

Sometimes these goals entwine with various political movements, particularly libertarian or libertarian-leaning political movements. For example, in 2011, Ohio voters passed a “health freedom” amendment to its constitution. Obviously, this amendment was intended to shield Ohio from the individual mandate in the Affordable Care Act. However, in the Hershberger case, the 1851 Center for Constitutional Law is using it as an argument for why Sarah Hershberger should not be compelled to undergo chemotherapy, although how this amendment applies to a child whose parents are subjecting her to medical neglect—and, make no mistake, that is what the Hershbergers are doing, as well-intentioned as they are—is beyond me. (Perhaps Jann Bellamy will help me out here.)

“Health freedom” amendments and laws aside, this is about more than just antivaccinationists. This deference to parental rights over the health of the child plays out again and again and again in these chemotherapy “refusenik” stories. Daniel Hauser? His mother ran away with him. Fortunately, the story had a happy ending, with the Hausers ultimately accepting science-based treatment. Abraham Cherrix and Katie Wernecke? Their parents ran away with them, too. In particular, Cherrix’s story, which is still going on as he continues to battle recurrences of his lymphoma, even led to a horrible law in Virginia known as “Abraham’s law,” that states that the parents of a child at least 14 years old with a life-threatening disease or condition could refuse medically recommended treatment without the refusal being considered medical neglect, provided (1) the parents and child made the decision jointly, (2) the child is sufficiently mature to have an informed opinion on the treatment, (3) other treatments have been considered, and (4) they believe in good faith that their choice is in the child’s best interest. Unfortunately, this law essentially opened the door for a 14-year-old with a life-threatening illness to be given whatever quackery he or his parents choose, in place of treatment with proven efficacy.

Now it’s Sarah Hershberger’s turn. The fact is that no one wants to take a child away from her parents, and no hospital wants to, either, the rants about big pharma profiteering as a motive for crushing parental prerogatives notwithstanding. In the case of ACH, the easiest course of action would have been for the doctors there to shrug their shoulders and mourn the loss of another child to superstition after having done their best to persuade the parents of the disastrous outcome their decision would lead to. It didn’t. The hospital tried to stand up to defend the best interests of the child, the best interests of Sarah Hershberger. It failed. Unfortunately, now that the Ohio Supreme Court will likely moot the case because there is no longer anyone assigned to be her medical guardian (or even anyone petitioning to be her guardian), Sarah Hershberger is likely to die unnecessarily in a manner far worse than what she would suffer if her parents let the doctors treat her with chemotherapy as she needs.

Thanks, David Michael and the 1851 Center for Constitutional Law. Yours won’t be a victory for parental rights. It will be a major defeat for children and their right to effective medical treatment. Particularly disturbing is how Sarah’s impending demise doesn’t appear to matter much to them beyond making them feel obligated to downplay the seriousness of Sarah’s cancer. They care far more about “parental rights” than they do about Sarah’s life. I only hope that Andy and Anna Hershberger figure that out before it’s too late.

Posted in: Cancer, Medical Academia, Medical Ethics, Politics and Regulation

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