The family of the Amish girl with cancer who needs chemotherapy flee the country and claim natural healing has “cured” her

A couple of weeks ago, I commented on the story of 10 year old Amish girl in northeast Ohio with cancer whose parents, alarmed by the side effects of chemotherapy, had decided to stop the chemotherapy and treat their daughter with folk medicine instead. As a result, alarmed at the likelihood that Sarah Hershberger would suffer and die unnecessarily at a young age, the hospital treating her, Akron Children’s Hospital, went to court. It lost the first round, but earlier this month the original ruling was overturned, and it was ordered that Hershberger undergo chemotherapy to save her life. The odds of her survival with chemotherapy were estimated to be on the order of 85%. Her odds without chemotherapy? About as close to zero as you can imagine.

One of the most disturbing things about this case is the reaction of so many people to it. It was not what you might hope. In reality, the predominant reaction was outrage that the state would so usurp parental rights. Indeed, if you go to the hospital’s Facebook page, you’ll see that there are still people ranting over it, with posts like this:

I won’t EVER EVER EVER step foot in Akron Children’s Hospital EVER EVER EVER again. My children will NEVER go there after what you’ve done to this family.

You should all be ashamed of yourselves. You want people to vote on something in November? I can tell you that I won’t be voting for anything for your hospital. Was it worth it? Putting this family through all of this? Was it WORTH IT? You’ve ruined your public image. You’ve ruined the confidence of parents trusting you and bringing their children to your doctors and hospital. I can tell you that I am not the only person who feels this way about your hospital now. People are scared to death to bring their children to you now. People talk and they don’t trust your hospital any more. It’s your own damn fault.

There was a lot more of this on the Facebook page a couple of weeks ago, all with generally the same hysterical tone. There were post after post after post by people claiming all sorts of evil intent on the part of the hospital, accusing it of “poisoning” the girl, and all sorts of other nastiness. What caught my interest, though, was the article cited in the mini-rant above, entitled Amish Girl Being Forced into Experimental Chemotherapy Taken Out of US and Recovers with Natural Treatment.

That’s right. Sadly, but not entirely unexpectedly, the Hershbergers have apparently taken their daughter out of the country to avoid chemotherapy. The longer they do that, the more likely it is that their daughter will die a horrible death, and it will be her father Andy Hershberger’s fault. I realize that he has nothing but the best intentions and believes he is doing the best thing for his daughter, but he is wrong, so very wrong. If his decision is not reversed, his daughter will almost certainly pay a very unpleasant price.

As an aside, let me just make a brief mention of the first thing I thought of when I saw the name of the author, David Michael. Way back in the day, when I first discovered Holocaust denial and cut my teeth on combatting online Holocaust deniers, one of the deniers I tangled with the most often was named David Michael. He’s the guy I mentioned back in 2005 who gloated over the 9/11 attacks, calling the attack a “truly wondrous thing” and the day a “glorious day.” No, this David Michael is not that David Michael. For one thing, that David Michael is British, and this David Michael lives in northeast Ohio and writes for a website called the Journal of Natural Food and Health. He’s also very obviously antivaccine and pro-quackery. I only mention this because it’s a weird coincidence, and it’s hard for me to stop thinking about it. In any case, let’s take a look at what he claims:

Early in October 2013, the entire nation heard about how Sarah Hershberger, a 10-year old Ohio Amish girl with leukemia (now recovered), is being forced into a two-year unproven experimental chemotherapy study by Akron Children’s Hospital (ACH). It was just learned the parents, Andy and Anna Hershberger, took their significantly recovered daughter out of the United States before the court ruled that a hospital-affiliated, attorney-nurse, Maria Schimer, was made the medical guardian to make sure Sarah will get her treatments. Parents reported this week the child is fully recovered through natural treatments. Schimer is General Counsel (chief legal advisor) for Northeast Ohio Medical University (NEOMED), a close affiliate and business partner of the hospital. According to Andy, Ms. Schimer has never met Sarah or him and his wife and they were never told their child was being used in a research study—among other things.

Although they do not know it yet, the hospital now has a big problem they must deal with. Sarah is completely recovered, as of October 23, according to Andy. The hospital told them and the news media that Sarah would die in a few months without the treatment they recommend. Three doctors that have treated her with a natural, biochemical protocol using nutrition, supplements and plant extracts have declared Sarah cancer free based on cat scans and blood tests—confirmed three times.

Well, this is mighty convenient. Nothing fishy here, right? Now that court has ruled that Sarah Hershberger has to undergo conventional treatment, suddenly the father claims that Sarah is cancer-free, thanks to the quackery to which he subjected her. The three doctors who allegedly treated her with “natural therapies” are not identified, and no evidence that Sarah Hershberger is, in fact, cancer-free is presented. All of this puts the hospital at a profound disadvantage, because it can’t comment on Sarah Hershberger’s case because of patient confidentiality laws. In contrast, Andy Hershberger can say whatever he wants and doesn’t have to produce any actual evidence. I’d love to know the names of the three doctors to see what sorts of treatments they recommend for cancer and what sorts of tests they order to determine if someone is “cancer-free.” Let’s just put it this way. David Michael won’t take the hospital’s word for it that Sarah Hershberger will die without chemotherapy. I won’t take his or Andy Hershberger’s word for it that Sarah is cancer-free. Let me just challenge Mr. Michael: Identify the three doctors who allegedly treated Sarah Hershberger with “a natural, biochemical protocol using nutrition, supplements and plant extracts.” Let us know what the protocol is.

That isn’t to say that I think Mr. Hershberger is lying. He is almost certainly telling the truth as he sees it, but he also clearly grossly misunderstands cancer treatments, specifically why pediatric oncologists do what they do. Unfortunately, quack apologists are taking advantage of Mr. Hershberger’s ignorance about cancer, an ignorance shared by most people. Most likely what happened is that the chemotherapy shrank Sarah’s tumors to the point where they are no longer detectable on CT scans. This is a common initial outcome after early rounds of chemotherapy. The problem with lymphoma is that, although it is fairly easy to put lymphoma into an apparent complete remission, making that remission permanent is difficult. It takes a lot more than just a round or two of chemotherapy, a lesson learned painfully by pediatric oncologists back in the 1960s and 1970s. For example, for the type of tumor that Sarah has, lymphoblastic lymphoma, the treatment is two years duration. It consists of an eight drug induction over nine weeks followed by an eight week consolidation course and then maintenance therapy for a total therapy duration of 24 months. For chemotherapy for lymphoma, there are three phases, as listed above. The induction phase is designed to put the patient into remission. Consolidation chemotherapy is given to patients who have gone into remission and is designed to kill off any residual cancer cells that might be present, thus increasing the chance of complete cure. Maintenance chemotherapy is the ongoing, longer term use of chemotherapy to lower the risk of recurrence after a cancer has gone into remission. It’s basically lower dose chemotherapy given for two to three years to help keep the cancer from returning.

So it’s quite possible that Sarah has no detectable cancer. If that’s the case, it’s the chemotherapy that she’s received thus far that almost certainly did it, not the herbs and vitamins. If that’s the case, it also means that failing to consolidation and maintenance chemotherapy greatly increases the chance that Sarah Hershberger’s lymphoma will relapse, a chance that is probably a near certainty if she only received one or two rounds of chemotherapy, as has been reported. That is the price of quackery. Worse, relapsed cancer is always harder to treat. The first shot at treating cancer is always the best shot, with the best odds of eradicating the cancer. Letting cancer relapse through incomplete treatment breeds resistant tumor cells the same way that not finishing a complete course of antibiotics contributes to the development of resistant bacteria.

The next part of Mr. Michael’s analysis is even more unbelievable:

The Hershberger family says they never were told the chemotherapy was part of a research project using experimental chemicals. They also said the hospital did not get their signature for the second phase of different chemicals and only Sarah was asked to “put her name on the line.” They claim they were not told of the serious side effects. They said Sarah’s confidential medical information was given to the news media violating federal privacy laws. After a significant improvement in killing the cancer, they saw that the chemo was starting to kill Sarah and decided to stop the treatment and employ a better option to stop the cancer altogether. This is when the hospital took legal action to keep Sarah in the treatment study.

This part sounds highly dubious. One thing that you need to understand about pediatric cancer is that a very high percentage of patients with pediatric cancers are enrolled in clinical trials, well over 50%. Compare this to the 5% or so of adults with cancer who participate in clinical trials. Indeed, this is one of the reasons why survival rates for pediatric cancers have improved so much over the last four decades. So it would not be the least bit surprising if Akron Children’s Hospital enrolled Sarah Hershberger on a clinical trial. In fact, I’d be disappointed in the hospital if its doctors didn’t at least offer her parents a clinical trial.

Clinical trials run by facilities that receive any federal funding or grants (as Akron Children’s Hospital surely does) are overseen by the Office of Human Research Protections (OHRP Department of Health and Human Services, and children are considered a vulnerable population for which extra protections are mandated. I find it highly unlikely that Akron Children’s Hospital didn’t get the appropriate informed consent. However, I never completely dismiss the possibility that I could be wrong. So here’s what I propose. If Andy Hershberger really thinks that Akron Children’s Hospital failed to obtain proper informed consent, he has only to report it to the OHRP. If the drug in the study is a new drug, then he could report the issue to the FDA as well. In fact, I would very much urge him to do so if he thinks that he was not offered adequate informed consent for a clinical trial.

Next up, Michael accuses the hospital of being all about the money:

ACH will lose as much as $1,000,000 or more by not treating Sarah the full 110 weeks in this study and, according to our sources close to the case, has already billed $130,000 for the first five weeks. Add to this the various pediatric cancer research grants and other funds it is receiving directly or indirectly for this type of study. This is not counting the billings for treatments for the long-term side effects such as other cancers, kidney dysfunction, heart problems and nerve damage—all common for those that survive chemotherapy.

This is, of course, a misrepresentation of how clinical trials work. In clinical trials, the funding agency pays for all clinical trial-related treatments and tests that are not standard-of-care. The rest are billed regularly. Moreover, for the most part, hospitals do not make money off of clinical trials. The infrastructure to run them is hideously expensive, and funding agencies often don’t quite cover the full cost, particularly in these days of the sequester, which has hit NIH-funded clinical trials hard.

Ironically, Michael asks a question that should make all of those ranting about how greedy and evil Akron Children’s Hospital supposedly is think:

Why is the hospital going to all the time and expense, even with the risk of tarnishing their reputation, all to make sure their advice is taken as opposed to other available treatments widely known in Europe as well as clinics in the U.S.? After all, these are Amish people, and it could become an extremely costly public relations nightmare. ACH and NEOMED may have banked on the Amish to stay quiet and not talk to the outside world, knowing also the Amish does not sue in court thereby making more information public.

I’ve been asking the same question myself. It would have been so much easier for ACH to do nothing, to shrug its collective shoulder and let the Hershbergers do whatever they wanted to with Sarah. It would have been far easier, far less trouble, and far less expensive. By any stretch of the imagination, it would have been the easy way out. But ACH didn’t take the easy way out. While conspiracy theorists might fantasize that this is because there is some amazing prize that makes all the bad publicity and harassment by the “health freedom” crowd worthwhile. Reasonable people know that this is a matter of principle. The hospital is willing to go through all this hassle because making sure that Sarah Hershberger is treated according to science-based medicine is the right thing to do.