I fear that Sarah Hershberger is now doomed

I am afraid. I am afraid that the Amish girl with cancer whose parents’ battle to treat her with “natural” therapy instead of effective science-based chemotherapy has made international news, is doomed. It might take longer than doctors have estimated, but it seems inevitable now. I will explain.

It’s hard to believe that it’s been two months since I first became aware of the case of Sarah Hershberger, the now 11-year-old Amish girl from Medina County, Ohio near Akron with lymphoblastic lymphoma whose parents stopped her chemotherapy after only two rounds. It was around that time that, after having failed before, the hospital caring for the Sarah, Akron Children’s Hospital (ACH), succeeded in having the court appoint a medical guardian, which caused the alternative medicine world to lose its mind. After that, reports started coming out of the cancer quackery underground that Sarah’s parents, Andy and Anna Hershberger, had fled the country to avoid the 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 long Thanksgiving weekend, the story was confirmed in the mainstream media.

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, 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, “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 nearly certain to prevail, Sarah Hershberger will almost certainly die, unless she happens to be one of the lucky minority of children with this form of cancer 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 time and time again in cases like this, 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 the current standard of care for lymphoblastic lymphoma can produce. 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 and everyone else who helped the Hershbergers win the right to treat Sarah with “natural” therapies. Already her chances of survival are fading. We just don’t know how much because we don’t know enough about her clinical situation.

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 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

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 is 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 it 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, as I’ve discussed before.

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 lost 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.