It figures.

Whenever there's a holiday or a break where I'm not paying as much attention to the blog as usual, something always seems to happen regarding a story I'm interested and have been blogging about. Remember Sarah Hershberger? She's 11 year old Amish girl who developed lymphoblastic lymphoma, underwent one round of chemotherapy, suffered highly unpleasant side effects from the second round of chemotherapy, and then refused to undergo further chemotherapy. Her parents, distressed at her suffering, decided not to make her continue her therapy. They also see that her cancer has shrunk (or even disappeared) and question why further chemotherapy is necessary. It's an all too common story, an all too common misunderstanding, one we've seen time and time again. No parent wants to see his child suffer, and some parents can't stand it. Add woo-ish tendencies, and rejection of further chemotherapy becomes almost inevitable. From the perspective of parents, it seems reasonable. The tumor has shrunk and maybe even disappeared, and the child is feeling the toxic effects of further chemotherapy. Why should she suffer more? The tumor is gone, right?

As I've explained time and time again, wrong. Oncologists learned the hard way decades ago that if you stop the chemotherapy too early, the microscopic deposits of cancer left after the first onslaught of chemotherapy develop resistance and come roaring back. They don't pour more chemotherapy into children's veins because they want to make them suffer. They do it because they know that if they don't recurrence is virtually guaranteed. Today's treatments are the result, and they are highly effective, with five year survival rates of 85% or more for Sarah Hershberger's particular tumor. Moreover, unlike the case with some cancers, five year survival for lymphoma is very close to total long term survival.

In any case, regular readers will recall that Sarah Hershberger's parents refused further chemotherapy for her last summer. Then, Akron Children's Hospital, in an amazingly responsible move demonstrating exceptional devotion to children's health, sued for medical guardianship. It lost the first round, but eventually it prevailed. Again, as we see all too many times, rather than comply with the court order to make sure that Sarah received science-based treatment, the parents reportedly fled, leading quacks and quackery supporters to go to great lengths to try to spin the story as one in which "natural" therapies had cured Sarah. They even lied about Sarah's therapy, claiming that it was experimental and the parents did not give informed consent. The odd thing, however, was that when I last wrote about the flight of Sarah Hershberger's family, I saw no evidence in the mainstream press confirming all the claims from quack websites.

Over the Thanksgiving weekend, I got that confirmation, first from a local Medina paper right before Thanksgiving, then from local news stations, and then the rest of the world. From Medina:

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. “All I know is that she and her parents don’t seem to be at her house,” he said.

Of course, the question here becomes: Why the hell isn't there a court order? It just goes to show how pervasive the attitude is that children are in essence the property of the parents, who can do anything they see fit with the child. Clearly, Medina law enforcement and court officials are dragging their heels because they sympathize with the parents more than they care about a child who will almost certainly die fairly quickly without proper science-based therapy. Yes, I'm talking to you, Medina County Sheriff Tom Miller. Yes, I know that no one wants to take a child from a family, particularly a family that is likely viewed as fine, upstanding, God-fearing citizens. The girl has been without treatment since June, according to this account.

It is also possible that, because the case is now being appealed to the Ohio Supreme Court, the hospital is reluctant to act now, as Schimer's attorney claims. On the other hand, I can't help but think that it's also a distinct possibility that Akron Children's Hospital might have given up. Contrary to the paranoid conspiracy mongering of the crowd who thinks that the hospital went to court to make sure this child receives proper therapy because it wants the money that it would get for administering the therapy, the hospital went to a lot of trouble and withstood a lot of abuse, while spending lots of its own money to bring the legal action that ultimately resulted in the court order that Sarah Hershberger's medical decisions would be made by Maria Schimer. In reality, it has little incentive to continue to pursue this course of action beyond what it has already done, because it will only cost more money and result in more attacks on the hospital. I hope that's not what's going on here, but I can totally understand if it is. The leadership of Akron Children's Hospital is to be commended for going as far as it has, but sooner or later the bean counters and the PR people are going to bring pressure to bear to let the matter drop. It is quite possible that the hospital has reached the limit of how far it is willing to go and is afraid of images of officers forcibly returning Sarah to ACH to undergo treatment.

We also learn:

David Augenstein, who publishes the online Journal of Natural Food and Health, said he had spoken to the family this month. He said the family had left the U.S. to seek alternative treatment in late September. He said they have since returned but haven’t gone back to their farm for fear their daughter will be forced into treatment by the hospital. “I can’t tell you where they’re at, but they’ll call periodically from an undisclosed location using someone else’s phone,” Augenstein said. “I know they are in the United States.” Augenstein, who lives in the Canton area, said he first reached out to the family after seeing their story published in local news media. “One of the big issues in this case is not just parental rights — not just about Sarah — but that this opens the door for these hospitals to create a lot of fear in the parents if you don’t obey their orders,” said Augenstein, who is a self-described advocate for parents’ choice in vaccinating their children. He regularly writes and reports on parental medical choice issues in his online journal. He also serves as the co-director of the Foundations of Health Education, which has set up a fund to help the girl’s family pay for her treatments. “This case is not just about Sarah and her cancer treatment,” he said in a press release. “It is about the right for anyone to obtain a second opinion and the freedom to choose you own medical treatments without fear of losing your child.

Utter piffle. It is about the right of a child to sound, science-based medical care that has a good probability of saving her life. Competent adults can decide on whatever therapy they want, quackery or science-based. They can refuse all therapy if they wish, as long as they understand the consequences. Parents do not have the same unfettered control over their children, nor should they. While wide latitude is and should be given to parents to decide the best course of treatment for their children when they become ill, there are definite limits. At the very least, those limits should at least encompass situations when parents make decisions that will have a high probability of converting a highly treatable, curable even, disease into a fatal disease through ineffective treatment. Sarah Hershberger's case falls into just such a situation. Worse, the parents don't understand how Sarah will die, how much she will suffer, if untreated:

Without the chemo, doctors say girl could die within a year. The family tells ABC they are willing to take that risk. "If we do chemotherapy and she would happen to die, she would probably suffer more than if we would do it this way and she would happen to die," her father told ABC this summer.

No. Death from cancer is worse—often much worse—than death from chemotherapy. The parents, as well-intended as they are, are likely condemning Sarah to a horrible death from her lymphoma, all while whatever quack they've found to treat her keeps telling her that her cancer is gone and she's doing fine. It's unclear who the quack is, as it's not entirely clear whether Sarah is in the US or still in the Central American clinic where she was reportedly receiving treatment. Meanwhile other quackery supporters spread blatant misinformation like this:

Andy Hershberger has said that they will resume chemotherapy if the traditional methods fail. There are no published statistics on the survival rate for lymphoblastic lymphoma when administered to a child of 10. There are also no published statistics on the deaths due to side effects from the chemotherapy on a 10 year old child.

Wrong. Wrong. Wrong. Wrong. Wrong. (Actually, I could have listed hundreds of "Wrongs," but as I write this the mid-season finale of The Walking Dead is fast approaching, and I need to finish this post.) Basically, Sarah Hershberger's case has become a rallying point of quacks and supporters of quackery, as well as "health freedom" advocates who don't care that their "health freedom" means, more than anything else, the freedom of quacks from pesky interference from laws designed to protect patients from quacks.

In an earlier story, Andy Hershberger said that if they couldn't do anything more for Sarah, they'd bring her back to Akron Children's Hospital. I hope he does, but I fear that by the time he realizes his daughter is getting sick again, it will be too late, and she will be dying. As many have pointed out, this is unlikely to end well. Worse, if the Ohio Supreme Court sides with the Hershbergers, it will not end well for any of the children of the state of Ohio.