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The sad saga of an Amish girl with a curable cancer whose parents are refusing chemotherapy in favor of “natural healing”

Over at my not-so-super secret other blog, one common type of story that I’ve blogged about has been that of the “chemotherapy refusenik.” It’s a topic I write about here not infrequently as well. People like Suzanne Somers and Chris Wark come to mind, mostly people who had effective surgical therapy for their cancers and then decided to forego adjuvant chemotherapy in favor of quackery. Not surprisingly, they attribute their having beaten cancer not to the surgery that saved them but to the woo du jour that they chose instead of chemotherapy, not understanding that such chemotherapy is not the cure; it only reduces the risk of recurrence after surgical extirpation of the tumor. What I haven’t discussed as much here as I have over there are cases of children with cancer whose parents refuse effective chemotherapy to treat their malignancy (other than Daniel Hauser). Because most childhood cancers are not treated with surgery, chemotherapy ± radiation therapy really is the primary therapeutic modality for most of them; so refusing it has a very high probability of resulting in the unnecessary death of a child. Generally pediatric cancers have an 80-90% five year survival, and recurrences after five years are rare, which, as I described recently, is an enormous improvement over 40 years ago.

Sadly, there have been many such cases, such as the aforementioned Daniel Hauser, Abraham Cherrix, Kate Wernecke, and Jacob Stieler. All of these are stories of children who were diagnosed with highly curable cancers who refused either chemotherapy or radiation therapy and were supported in that decision by their parents. Indeed, of these, Cherrix, Hauser, and Wernecke ran away with their parents to avoid chemotherapy. They all came back, but with different results. Hauser came back, started chemotherapy again, and is doing well. Cherrix ultimately came back, but the court made a deal with his parents that let him be treated by an “integrative medicine” doctors who treated him with low dose radiation and a bogus “immunotherapy.” As a result, several years later his tumor recurred, and he was last seen earlier this year asking for money for treatment. His battle in the courts in Virginia also inspired the passage of a supremely bad law that basically allows open season on teens for quackery. Wernecke disappeared when her parents refused radiation therapy after having undergone chemotherapy and took her for intravenous high dose vitamin C. In 2007, her cancer recurred, but the recurrence appeared to have been treated successfully. It’s not clear how much conventional therapy she had received, at least as of 2010, which was the last time I could find anything about her online.

The latest of these cases that has come to my attention is the case of a 10-year-old Amish girl from Medina County in Ohio named Sarah Hershberger, who developed T-cell lymphoblastic lymphoma, an aggressive form of lymphoma, underwent chemotherapy for a few weeks, and then decided she didn’t want it anymore. Her parents, convinced that the chemotherapy was killing her, instead of insisting that she undergo potentially curative therapy, which her doctors estimated to have an 85% chance of eliminating her cancer, refused to let undergo any further therapy. This led to a court case in which Akron Children’s Hospital (ACH) sued to obtain medical guardianship of the girl in order to make sure that she would undergo curative chemotherapy. The first ruling in the case in a Medina County court was for the parents. Then on appeal the 9th District Ohio Court of Appeals ordered Medina County Judge John Lohn to take another look at the case, ruling that he had failed to weigh adequately which course would best serve her interests — the decision of her parents to withhold treatment (at her request) or to appoint a limited guardian to make medical decisions, as proposed by Akron Children’s Hospital. Amazingly, Judge Lohn reiterated his previous ruling, finding that appointment of a guardian would interfere “with Sarah’s need and desire to be cared for by her loving parents” and stating that “the guardianship will not promote Sarah’s interests.” One month ago, Judge Lohn’s decision was reversed on appeal to the 9th District Ohio Court of Appeals, which caused everyone’s favorite quackery supporter to lose his mind in rage.

Since then the case has only gotten stranger, as hard as it is to believe. Indeed, it’s hard to know exactly what is going on, although discussing the case allows me to discuss a both the science and ethics of treating children with cancer using science-based modalities.

Whose rights matter here, anyway?

One of the most disturbing things about this case is the reaction of so many people to it. The predominant reaction was outrage that the hospital and state would attempt usurp parental rights, combined with undue credulity that “natural therapies” could cure patients. Indeed, on the hospital’s Facebook page, there are still people ranting about it, with posts like this:

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.

Even today, a month after the ruling, ACH’s Facebook page is still deluged with posts by people claiming all sorts of evil intent on the part of the hospital, much of it based on two articles, one from a week ago, one from just the other day. The first is entitled Amish Girl Being Forced into Experimental Chemotherapy Taken Out of US and Recovers with Natural Treatment. The second is an interview with Isaac Keim, Sarah Hershberger’s grandfather, that appeared on the Chris Beat Cancer website over the weekend. (Yes, it’s that Chris.)

If this article is to be believed (and, as you will see below, it’s hard to know whether to believe it or not), 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. The author of the piece, David Michael, writes for a website called the Journal of Natural Food and Health. He’s also very obviously antivaccine and pro-quackery. 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. 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 unnamed “nutritional therapies” to which he has 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 condition 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.”

None of this should be construed to mean 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.

Unfortunately, it takes a lot more than just a round or two of chemotherapy, a lesson painfully learned by pioneering pediatric oncologists back in the 1960s and 1970s. For example, for the type of tumor that Sarah has, lymphoblastic lymphoma, the duration of one standard treatment is two years. For chemotherapy for lymphoma, there are at least three phases. 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. In Sarah Hershberger’s specific case, her oncologist, Dr. Prasad Bodas, testified that her chemotherapy would have five phases: induction (5 weeks), consolidation (seven weeks), interim maintenance (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks), for a total duration of two years, three months.

At this point, it is 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 caused that result, not the herbs and vitamins her father has been giving her. If she is apparently tumor-free, 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 her induction chemotherapy. 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. It’s evolution in action.

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.

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. This is a very good thing indeed for children and 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 ACH had enrolled Sarah Hershberger in a clinical trial. In fact, I’d be disappointed in the hospital if its doctors didn’t at least offer her parents participation in a clinical trial.

The other thing you need to know is that 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 for a clinical trial, then 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 people ranting about how greedy and evil Akron Children’s Hospital supposedly is wonder. Namely, “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.?” 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 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, the more likely conclusion is that ACH was willing to go through all this hassle because to make sure that Sarah Hershberger is treated according to science-based medicine.

I should also point out at this point that I have as yet been unable to find any corroborating evidence that the Hershberger family has, in fact, actually fled the country. Make no mistake, I searched a whole bunch of mainstream news sites, including the local news site for the Akron Beacon-Journal, and I found no stories of the Hershbergers fleeing the country last week, only reprints of the original story claiming that she fled and reports of a fundraiser to let her come back into the country. My guess is that she and her family are probably still in Medina County, but who knows?

In which we learn what likely caused the Hershbergers to reject chemotherapy

Over the weekend, as I alluded to above, I learned that Isaac Keim, Sarah Hershberger’s grandfather, gave an interview to Chris Wark of Chris Beat Cancer fame. (To reiterate, Chris did beat cancer, but it was the surgery, not his quackery, that cured him.) In any case, here is the telephone interview:

As you will see, the interview with Isaac Keim is enlightening in that he and Chris Wark inadvertently confirm that what I’ve written thus far is very likely spot on accurate in describing what probably happened.

We learn from Mr. Keim that the family first noticed something wrong when they found a lump on Sarah’s neck. So they took her to the doctor, and she ended up being referred to ACH. Ultimately she was diagnosed with a T-cell lymphoblastic lymphoma, and a workup revealed tumor in her neck, kidneys, and “in her body,” whatever Mr. Keim means by that, which seems to be elsewhere in her abdomen and chest. The Hershbergers were told that this is an aggressive tumor, but treatable with an 85% five year survival achievable with a 27 month course of chemotherapy consisting of five phases. All of this is consistent with what’s been reported and what I’ve just discussed.

Mr. Keim relates next that Sarah underwent the first phase of chemotherapy, which lasted 4-5 weeks and resulted in the lump on her neck nearly disappearing within a week. She also tolerated this first phase very well. It was at this point that the Hershbergers started to wonder why more chemotherapy was needed, given how good her response had been. Here’s where the story gets dicey. According to Mr. Keim, the doctors wanted to start the second phase but didn’t have the parents’ permission. Yet, according to him they just went ahead with the chemotherapy anyway. Clearly, there had to have been a breakdown in communication here, because, having worked in multiple hospitals over the years, I know that, if there’s one thing that major academic center hospitals are very, very compulsive about, particularly pediatric academic medical centers, it’s getting informed consent for almost everything, particularly now. Indeed, most such hospitals take it to an extreme, getting formal informed consent for tiny procedures like a punch biopsy of the skin. It stretches belief that ACH would subject a girl to further chemotherapy involving what sounded like intrathecal chemotherapy (chemotherapy injected by lumbar puncture into the central nervous system), requiring general anesthesia to administer and have a visiting nurse come out to administer chemotherapy at home, without having had the parents’ permission. At the very least, no anesthesiologist would put a child to sleep without the parents first signing permission, and no interventional radiologist would put a catheter into the spinal canal without permission. If it is really true that the hospital did all this without their consent, the parents would have a hell of a lawsuit that they could file, and I would urge them to file it.

In any case, from Mr. Keim’s account, it sounds as though the second phase was what caused Sarah to become really ill. He described her as feeling so weak that she wouldn’t get out of bed for a week and wouldn’t eat. At some point a nurse came to give the first of three weekly injections. She apparently was going to leave the remaining two injections at the Hershberger’s house and instructed them to keep them on ice. I found this to be rather odd, not the least of which because this was Amish territory and there was likely no refrigeration. True, the Hershbergers probably have an ice box, but if it’s so critical to keep a drug refrigerated, I doubt that a hospital would leave it in an Amish household where there might or might not be adequate ice to keep it cold enough long enough.

Whatever the case, if Mr. Keim’s account is accurate, that nurse then did something that arguably set the whole family off. She told the family to keep the syringes away from any children, which is certainly reasonable advice given that these were undoubtedly powerful chemotherapeutic agents, although I would wonder why the nurse would leave the drugs in a household where syringes of powerful chemotherapeutics would likely be placed next to food sitting in the icebox where children might be able to get at them. That wasn’t what set the family off, though. What set the family off was when the nurse also told the family that the chemotherapy in the syringes could cause cancer.

That’s when all hell broke loose. That’s when the Hershbergers decided to stop the chemotherapy.

At this point, Mr. Keim said that the Hershbergers were never told that cancer was a risk from chemotherapy, leading to an exchange with Mr. Wark castigating cancer doctors for not telling patients everything where Mr. Wark claims that most cancer patients aren’t told that chemotherapy can cause cancer. Again, this claim stretches credulity beyond the breaking point. If you’ve ever read the consent forms for chemotherapy regimens, you know that it’s right there in black and white, a statement that the chemotherapy can increase the risk of cancer years down the road. For childhood cancers, the risks are clearly listed as Dr. Bodas testified: infertility, an increased risk of cardiovascular disease, damage to various organs, an increased risk of contracting other cancers, and a “small but appreciable risk” of dying from the treatment itself. Yes, these are significant risks, but lymphoblastic lymphoma will kill without treatment; so these risks are not unreasonable weighed against the rewards. I’d be willing to bet that those risks are listed on the informed consent that the Hershbergers signed when induction therapy was begun, and I’d be doubly willing to bet that the oncologists who discussed chemotherapy with the parents mentioned those standard risks.

At this point, the Hershbergers went to ACH and brought Mr. Keim along to tell the doctors that they had decided to quit chemotherapy and go for “natural” healing. Sarah didn’t want any more, and they were convinced that the chemotherapy was killing her. To say that the session was contentious would be an understatement. The hospital must have been expecting trouble, because apparently within an hour it was able to mobilize a lawyer, “PR people,” doctors, and nurses. One thing that disturbed me to learn was that the hospital first referred the case to Medina County Job and Family Services in June, but that MCJFS refused to file neglect and dependency charges against the Hershbergers. This is confirmed in the second ruling that went in favor of the Hershbergers. All I can say here is that MCJFS completely dropped the ball here, and I agree with the doctor’s characterization of this decision as “child abuse.”

Much of the rest of the interview consists of attacks on ACH and Maria Schimer, the general counsel for the Northeast Ohio Medical University (NEOMED), the medical school with which ACH is affiliated and the person petitioning the court to be Sarah Hershberger’s medical guardian; conspiracy mongering, and unverifiable claims. For example, Wark and Keim claim that Schimer’s only qualification to be Sarah’s medical guardian is that she had been appointed guardian to people who had been on life support for over a year but had no guardians, all so that the hospital could “pull the plug,” characterizing her as a “witch” standing their ready to “pull the plug” by getting Sarah back on chemotherapy. Yes, they not-so-subtly implied that Ms. Schimer wants to kill Sarah. This is pure slander, as a reading of the actual opinion of the Ohio Appeals Court, Ninth Appellate District reveals. Yes, she was appointed ward of the court for people on life support in the 1990s, but she has also served as ward for “several medically compromised, developmentally disabled adolescents, who were unable to speak for themselves and had no family members to speak for them.”

The conspiracy mongering was of the standard variety, in which it was claimed that ACH was paid a million dollars by a medical company to win this case, echoing the accusations of David Michael’s article. The claim was bookended by Mr. Keim saying, “I have no proof of this but I have been told by several people” and then, “I don’t know this to be true, but I’ve heard that.” One wonders who those “several people” were, one does. One also wonders why Mr. Keim would repeat something that he himself does not know to be true. Could it be to poison the well? There’s no “could” about it. At the very least, it allowed our friend Mr. Wark to go off on a rant about tyranny and how “they” (whoever “they” are) don’t want parents to make decisions for their children and how “they” don’t want people to have “options” and “they” want to force therapy. No such rant would be complete without that old alt-med cancer trope that “it’s not about a cure, it’s about healing” and how “only the body can heal cancer.”

The unverifiable or very difficult to verify claims fly fast and furious, as well Mr. Keim claims that Sarah was taken to “one of the top cancer centers in the U.S.,” but doesn’t mention what that cancer center was. He claims that all her tests there show that she is free of cancer. He claims that county sheriffs have been out to the house but that they don’t want anything to do with this case unless they’re forced. (I actually believe that one; police generally don’t like the idea of taking children away from their parents.) He claims that a doctor in Cleveland took over her care but doesn’t know who that doctor is. One notes that Mr. Keim’s claims conflict with claims made earlier that Sarah Hershberger is being treated by three doctors and that she was on “experimental” chemotherapy in a clinical trial without her parents having been given informed consent.

Finally, Mr. Keim laments that he contacted several television stations to try to give the family’s side of the story but that they wouldn’t do it unless the Hershbergers appeared on camera, which they would not do because they are Amish. This, too, is hard to believe. No, it’s not hard to believe that television news producers wouldn’t present the family’s side of the story if the Hershbergers wouldn’t appear on camera. What’s hard to believe, given that this story has made international news, is that a newspaper wouldn’t eagerly interview the family if approached or that a radio station wouldn’t eagerly have the Hershbergers phone in, as Chris Wark had Isaac Keim phone in. No, what the Hershbergers likely wanted was an outlet sympathetic to their point of view that wouldn’t challenge them, and Isaac Keim got it in Chris Wark.

Here’s the final irony. At about 29:00 in the interview, Mr. Wark basically admits that my interpretation of events described above could well be correct. In other words, he admits that chemotherapy could well be what rendered Sarah Hershberger cancer-free, if cancer-free she is at the moment:

I do want to be fair about this. Leukemias and lymphomas and testicular cancers respond better to chemotherapy than most cancers do, and it is entirely possible that those few treatments she did got rid of her cancer…Even if that’s the case, if that is what got rid of her cancer—now typically chemotherapy only gets rid of it for a short time; it’s only a temporary solution; it doesn’t address the root cause of disease—the point is freedom. It’s about the freedom of choice, the freedom that a parent has to make decisions for their child, medical or otherwise…It’s a bigger fight about a parent’s right to choose what’s best for their child, what medical treatment is best for their child versus whether or not chemo is going to help her. And that decision belongs to the parents and belongs to Sarah.

This is what I’ve been saying all along, that to people like Chris Wark, parental rights trump all else. It doesn’t matter if the child is only 10 and thus too immature to make such a monumental decision. The life of the child apparently doesn’t matter to Wark, at least not in comparison to parental “rights” to choose quackery. He’s perfectly willing to sacrifice Sarah Hershberger on the altar of “health freedom” to the point that he’s willing to help raise money for the Hershbergers to fight for the right to let their daughter die using a Pledgie and a GoFundMe campaign.

In the meantime, Isaac Keim also revealed that the Hershbergers have been subpoenaed to appear in court on November 6. We’ll see what happens.

Posted in: Cancer, Medical Ethics, Religion

Leave a Comment (89) ↓

89 thoughts on “The sad saga of an Amish girl with a curable cancer whose parents are refusing chemotherapy in favor of “natural healing”

  1. Lawrence says:

    I wonder what the “Forces of Quack” would think if a family believe that repeated punches to the head would “knock the Cancer” out of their kid’s brain?

    I mean, it is their choice, right?

  2. Jann Bellamy says:

    “. . . Wark and Keim claim that Schimer’s only qualification to be Sarah’s medical guardian is that she had been appointed guardian to people who had been on life support for over a year but had no guardians, all so that the hospital could “pull the plug,” characterizing her as a “witch” standing their ready to “pull the plug” by getting Sarah back on chemotherapy. ”

    These two are apparently as incompetent in understanding legal issues as they are in medical matters. They seem to think that once a guardian is appointed she can just go off and do as she pleases. As is evident from these proceedings, getting appointed as a guardian in the first place requires a hearing before the court. (Note that even though the probate court ruled against guardianship in the original proceeding, the competency of Schimer to act as guardian was not questioned by the court.) A guardian can’t just “pull the plug” on anyone. Guardians are supervised by the court appointing them and must account for all of their actions to the court. They are required to file periodic reports with the court justifying their actions on behalf of the ward (the person over whom they exercise guardianship). Guardianship can be revoked any time the court finds the guardian is not acting in the best interest of the ward. In short, everything they do is publicly scrutinized in a manner that no parent has to undergo when acting on behalf of their children. Schimer sounds like a saint to me for her willingness to take on guardianship in extremely tough cases.

  3. Kathy says:

    I don’t know much about the Amish. Are women not allowed to speak? The one person one hears nothing at all from is Sarah’s mother. I wonder what she really thinks about it all.

    1. windriven says:

      @Kathy

      I do not claim to have encyclopedic knowledge of Amish ways but grew up near an Amish community and have had a bit of contact. Women are definitely subservient to their husbands. Within the family they certainly speak their minds but their husband’s word is the last word.

      Gimme that old time religion ;-)

      But what difference does it make in the larger context? Perhaps she is totally in favor of continuing chemotherapy, perhaps she is the one who instigated removing her daughter from the program. It is interesting on an individual level but does little to inform the larger discussion of parental rights versus medical judgment.

      Most Amish education takes place outside of the public school system, ends after the 8th grade, and does not include any science education. The culture positions itself in the 19th century and its adherents lack the context to make informed judgments about advanced medical procedures.

      1. Kathy says:

        @windriven: “It is interesting on an individual level but does little to inform the larger discussion of parental rights versus medical judgment.”

        I don’t think it is irrelevant to the big picture, windriven, even if it is about one special case. Parental rights are contentious, but imho this may not be about parental rights so much as paternal rights. If the mother has not been asked her opinion, or if she is pushed by her religion to agree with her husband regardless, where are her rights?

        The other thing that’s nagging at me is along similar lines and that is, how much did the child know and how much freedom of expression did she have? Did she really want to stop treatment? Or did she, a girl and a junior, feel she had to agree with her father, the head of the house?

        Something wise I learned from Lifeline: don’t only listen to what is said; what is not said may be even more important. I’m wondering what is not being said here.

        1. windriven says:

          You make some good points, Kathy.

          “If the mother has not been asked her opinion, or if she is pushed by her religion to agree with her husband regardless, where are her rights?”

          My experience with Amish is that the women are conditioned from an early age to be servants of first their fathers and then of their husbands. When you think of it, this is little different than the way that females have been treated in conservative societies for millenia. Remnants of this are still rampant in American and European culture.

          Without wandering too far afield, I once read an article by a Muslim woman extolling the virtues of everything from the burqa to the comfort of not having to make her own decisions. People can be twisted into strange shapes through operant conditioning. And from here we can easily cross the event horizon into a discussion of the meaning – even the existence – of free will.

          I don’t disagree that the mother and child are both at a disadvantage in this situation – whether or not they themselves recognize the disadvantage. And that is why in extreme circumstances I support the intervention of the state.

          1. WilliamLawrenceUtridge says:

            Probably less operant conditioning than the innate human tendency to rationalize decisions made after the fact. The process is rarely “think, explain, decide”, it’s more often “decide, explain, don’t think at all”. It’s why science, feminism and so many other iconoclastic topics have a hard time gaining traction. Human minds are set up to justify past decisions, not challenge them.

  4. windriven says:

    Nothing but a sense of overwhelming sadness in this story. A life and death decision is being made for a minor by parents who likely have an eighth grade education that has been devoid of science instruction.

    But beyond Sarah Hershberger, what happens as more states recognize and license quacks? The clamor for IV drip vitamin C and coffee enemas and antineoplastons will inevitably increase. The invoice for this outrage can be found on the doorsteps of those in academia who embrace quackery and pseudo-science because ‘patients demand it’ or to avoid being judgmental or exclusionary. This intention debasement of medical science is as inexplicable as it is evil.

    Actions have consequences. Unfortunately, the consequences of this will be borne by a patient population that had nothing to do with the actions taken.

    1. David Gorski says:

      If the state recognizes and licenses quacks, then quackery becomes legitimate, and children subjected to quackery risk being seen by the state as undergoing perfectly legitimate therapy. So much for protecting children…

      1. Kathy says:

        Seems to me that, as the old tyre advert had it, “This is where the rubber meets the road”, with respect to recognition of CAM practitioners. That’s all fine and well (but it isn’t really fine, yes I know) to dish out woo to someone who isn’t really sick, but what about those who are?

        This is where the governmental fan-dancing has to stop, and the governmental foot firmly down be put. And no, I haven’t been smoking anything. I wonder if there is any medication for chronic hopefulness? I always have dreams that the government, yours or mine, will stop chasing after every bandwagon in town and start acting in the best interests of the people.

        Maybe I should ask the woomeisters … a course of bleach enemas should fix my problem of excessive and childish hopefulness speedily.

    2. Carl says:

      What happens when states license quacks is Obamacare Section 2706:

      SEC. 2706. NON-DISCRIMINATION IN HEALTH CARE.
      (a) PROVIDERS.—A group health plan and a health insurance issuer offering group or individual health insurance coverage shall not discriminate with respect to participation under the plan or coverage against any health care provider who is acting within the scope of that provider’s license or certification under applicable State law.

      1. David Gorski says:

        States have to license them first, before the nondiscrimination clause can even have a hope of being invoked. For instance, naturopaths are not licensed in Ohio. Yet.

        1. Carl says:

          Yeah, the naturopaths (or any other general-purpose nuts) are what I think might be the most trouble. With a licensed acupuncturist (which we have in TX), the insurance company can cite the lack of effect from the only thing they offer. But if naturopaths get licenses, even if their stuff is all 100% bunk, they might try to claim a “pattern of discrimination” if all of the different stupid stuff they do is rejected.

  5. pmoran says:

    “In Sarah Hershberger’s specific case, her oncologist, Dr. Prasad Bodas, testified that her chemotherapy would have five phases: induction (5 weeks), consolidation (seven weeks), interim maintenance (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks), for a total duration of two years, three months.”

    Seems simple enough for us doctors, as we strain for optimal outcomes. One or two more precious lives saved will justify much else. This is what we are paid to do.

    Yet what a horrendous prospect this must be for parents whose lives have already been turned upside down by the cancer diagnosis! The lumps have already gone, the kid is sicker than they have possibly ever seen her before, and there is this two-year vista of much the same? stretching out in front of them, of constant medical attention and potential ill-effects from treatment.

    Taking a kid off their parents and forcing treatment upon them is such an appalling prospect that we need to be sure that everything possible being done to anticipate such problems and forestall them.

    Some thoughts –

    Where is the data showing what will happen to such a child with treatment, or without? We doctors expect the public to accept our opinion on that, but they are entitled to a simple account of the studies upon which that opinion is based. Just seeing the hard data in black and white may be enough to see some parents over their qualms.

    Also, I think few of those who unwisely use alternative cancer treatments are not already aware that they are gambling on something that may not work or which works only rarely. They may try to justify their decisions with various CAM “tropes” but it is the seeming “awfulness”, the patent harmfulness, of the chemotherapy that is weighing the scales against it.

    So, have the parents been adequately informed as to what to expect?

    Presumably the first couple of months of treatment will be the most intense and later treatments will be better tolerated. Have the parents had the opportunity to talk to families that have already been through this regime, so as to know what they can expect? Seeing another child well and thriving years after the completion of similar regimes may do wonders.

    1. windriven says:

      Peter,
      You frame the dilemma well. But:

      “Where is the data showing what will happen to such a child with treatment, or without?”

      Can parents with an 8th grade education – none of it in science – adequately grasp the import of that data when some scoundrel quack is preaching the virtues of ‘natural’ therapy in the other ear?

      1. WilliamLawrenceUtridge says:

        I would expect the doctors to have provided the data anyway, I would suspect that the emotional reaction to their daughter’s subsequent ill health completely over-rode the raw numbers regarding the benefits of adjuvant chemotherapy.

      2. goodnightirene says:

        windriven, I wouldn’t dismiss an eighth grade education–except for the lack-of-science part, of course. I spend a fair amount of time in the Amish community here in Wisconsin and the women are definitely subservient to their husbands, and yet they sneak away to altie “herbalists” and beg for birth control because they are too afraid to ask a doctor for same, as their husbands might find out. Sadly, the silly “herbalist” gives them yam root and other nonsense. So it’s hard to say what Sarah’s mother really thinks. Even if she was in favor of medical treatment for her daughter, she may or may not have the courage to speak up or take independent action.

        Mostly, I agree with you that the general nature of Amish isolation and religious commitment prevents most women disagreeing with their husbands, although the women I met who had up to seven children by age 25 (or less) might indicate otherwise. Sadly, while being brave enough to buck their husbands’ authority, they only sought quackery, so that would make it unlikely that Sarah’s mother would have the basic ability to ever disagree with her husband to begin with–so we are back to the lack of science knowledge (which doesn’t explain the rest of the population’s bent for woo).

  6. Jacob V says:

    This is a case our local Children’s Service’s would likely have filed a dependency unless there was an inability to present a case fully supported by the child’s doctors. And full disclosure, I’m a state social worker who spent over 20 years working in Child Protective Services specializing in high profile and medical neglect cases. I successfully filed three dependencies on cases where small children and infants needed blood transfusions and the parent’s were Jehovah’s Witnesses; however the difference I can see in how the state may or may not have responded in this case is related to the immediacy of the concern and risk. Most states have laws that allow immediate intervention when the risk of harm is also immediate. In this case you could argue that the risk was about potential future harm and there was no compelling immediate concern for the child’s welfare. Also in most medical cases CPS needs the opinion of a doctor who is willing to go “on the record” that a child’s health and safety is at significant risk absent intervention. If a MD was not willing to make that kind of very specific statement it’s very unlikely the local CPS office would take any action simply because the judge would have demanded to know why the social worker was saying the risk warranted judicial intervention. In cases like this I would always tell the doctor that I may have opinions about a lot of things concerning a family but they needed to tell me what my opinion was concerning potential outcomes of medical neglect. In this case where the hospital made the decision to seek guardianship I wonder if it was an administrator who signed the court petition or a specific doctor. Sadly I doubt it was a doctor based on my experience; and if no doctor is willing to make a specific statement of potential or current medical harm few social service agencies will take action in this kind of case because the harm has to be based on the medical opinion of a doctor. I’d be curious to know if the hospital’s attempt at legal intervention contained attributed statements of specific oncologists or if the medical opinion was offered up in a generic fashion by an administrator or hospital lawyer. Even in CPS cases where it is absolutely necessary to have specific statements and opinions of medical doctors it has been surprising to me over the years how excruciatingly cautious or hesitant many doctors are to make clear statements about risk and harm to the state agencies charged with protecting children.

  7. David Gorski says:

    here is the data showing what will happen to such a child with treatment, or without? We doctors expect the public to accept our opinion on that, but they are entitled to a simple account of the studies upon which that opinion is based. Just seeing the hard data in black and white may be enough to see some parents over their qualms.

    Five year survival with treatment is 85%, as has been discussed, and in most pediatric malignancies, particularly lymphomas and leukemias, recurrence after five years is quite rare. As for what happens without effective treatment, we have historical data from 50-60 years ago, where mortality was virtually 100%. I’m not sure what else you can ask for. Indeed, before the 1960s, pediatric malignancies of this type were a death sentence. Now they are highly treatable and curable with a high likelihood of success. But it takes the full chemotherapy regimen to achieve these results.

  8. Do you really want the state government to be your mother and father?

    Thats the bigger question here, think North Korea, think Soviet Union, when family rights are thrown out and replaced with the interests of the empire, you have tyranny.

    1. windriven says:

      “Do you really want the state government to be your mother and father?”

      No, I want to die of a curable disease instead.

      North Korea is a Stalinist swamp of 24 million people and the USSR went out of business in the last century. Only a complete wingnut could think that we’re a few dependency judgments away from either.

    2. Carl says:

      If it were scientifically proven that my mother and father were as stupid as the ones who gave birth to this poor kid, the government would be a decent second option.

    3. Jacob V says:

      The notion that children are the property of their parents is the worst of all tyrannies and the abdication of not only a sane communities responsibility, it is also the theft of liberty from those who can not stand for themselves.

      1. Babies are born helpless, so they are somebody’s responsibility for a long time. If it’s not the parent who is it going to be, the third deputy to the pediatric sub-commissar in the Department of Medical Supervision?

        Handing over your parental rights to the state you dont get to choose how the state will use that power. Yeasterday it was used to force chemotherapy on the amish, which might be ok with you, today it was used to Deny MRI scans for a child with brain tumor and tomorrow when government changes you may get mandatory reiki energy sessions for your kids tumor, with a state guardian appointed to ensure you dont interfere with the healing.

        The loss of rights is a packaged deal, you get the bad with the good really bad.

        1. windriven says:

          @FBA

          What does the story you linked have to do with parental rights or the government planting thoughts in your head? It is the tragic story of a young girl and a missed diagnosis.

          I don’t have a very high opinion of government or its general ability to do things well or cost-effectively. After all, governments, among other misdemeanors, license quacks. But the children of parents who can’t or won’t provide reasonable care need a backstop. OT god isn’t stepping up to the plate to smite the errant parents so that leaves government.

          The US and Canada are democracies. If you don’t like the direction it is taking, speak to your friends and neighbors and vote to change that direction.

          1. What does the story you linked have to do with parental rights

            - Child, 16, experiences headaches, vomiting, blurry eyesight, numbness
            - Parent goes to a neurodoc, asks for an MRI scan, the doc refuses since the state regulations in britain allow MRI for “life and death situations” only, and he doesnt see this as this being one.
            - the kid dies from untreated brain tumor

            What does that have to do with parental rights? You figure it out.

            1. hat_eater says:

              the state regulations in britain allow MRI for “life and death situations” only

              Oh thank God I live in Poland where MRI is performed when there are medical indications towards it and not when “it’s a life or death situation” (why you deleted the “!!!1!” is beyond me).

              Btw, there’s a typo in you post, Fantasyland is spelled with a capital letter and all the letters except “ta” are different.

              1. Harriet Hall says:

                “the state regulations in britain allow MRI for “life and death situations” only”

                I don’t believe that. Reference, please!

              2. hat_eater says:

                Just in case – I was quoting FBA.

              3. @Harriet

                The source is here

                Diagnostic procedure use is rationed in European state-run healthcare systems, something Obamacare is trying to copy. In this kid’s case the state decided her symptoms are not serious enough to warrant a scan, so she couldnt get one.

                On a related note, in asia there is a flourishing “medical tourism” industry, where frustrated europeans fly to get their procedures done. Want an MRI? In Singapore you get one the same day you walk in the door, and get a doctor to interpret the results as well right there.

              4. Harriet Hall says:

                The source you cite does NOT say the state decided she couldn’t get a scan. It says one doctor thought her symptoms were not serious enough to warrant a scan. What on earth gave you the idea that it was the state? Are you hallucinating? And who says diagnostic procedures are “rationed” anywhere? Prove it!

              5. Chris says:

                Again, your reading comprehension comes into question.

                To repeat a what James said below: “I think he is confusing when a doctor chooses not to prescribe an MRI because the doctor believes it is only for ‘life and death’ situations vs state regulation.”

                Oh, and read what windriven says.

              6. WilliamLawrenceUtridge says:

                Hey FBA, did you notice in the article you linked to the words ”
                The scan showed a rare cancer – a disseminated oligodendroglioma-like leptomeningeal tumour”? Rare cancers are harder to diagnose, because they are rare. The signs are less frank, the symptoms less serious, and thus that particular cancer is low on the diagnostic inventory.

                Turns out it’s not “state rationing”, it’s “medicine is hard, and imperfect”. This story is the opposite of Sarah Hershberger’s, and as usual your comments are irrelevant, deceptive and basically wrong.

              7. mousethatroared says:

                WLU “Turns out it’s not “state rationing”, it’s “medicine is hard, and imperfect”. Regarding the girls with the rare cancer.

                FBA is deluded as usual, but without more details and a outline of how well the doctors followed the best practices for diagnosing the girl’s symptoms…it’s difficult to know whether the failure to find the cancer was due to the difficulty of diagnosing a rare disease or missteps on the doctors’ parts. Hopefully it will be seriously looked into.

                As an aside the whole rationing, not rationing comparison between national and private health care is silly. Insurance in the U.S. doesn’t approve MRIs for anyone who wants one either. We ration health care here, the rationing just follows different criteria. (if you have a job that provides insurance, what kind of insurance, etc)

              8. @William

                Hey FBA, did you notice in the article you linked to the words ”
                The scan showed a rare cancer – a disseminated oligodendroglioma-like leptomeningeal tumour”?

                I did notice. And no, she didnt die because it was hard to diagnose. The physicians didnt make an effort to diagnose, she was repeatedly dismissed as a case of uncomplicated migraine. The parent asked for diagnostic procedures and the request was dismissed.

                Now in a country where the physician makes the decisions and not the National Health Bureau (not your country!), the following would have taken place:

                - Physician would perform a Neurological Examination, testing eye reflex, pupil function, hearing test, reflex test (the hammer on the knee), balance and coordination, sense of touch, memory and thinking assessment.

                - Then a computed tomography image would be reviewed and electroencephalogram
                - For further detail, MRI scan of the skull and a tap of cerebrospinal fluid

                All that been said, the prognosis for leptomeningeal tumor is not good (also due to presence of tumors elsewhere in the body for patients who have it), but thats no excuse for the epic fail in diagnosis.

            2. James says:

              @HarrietHall
              I think he is confusing when a doctor chooses not to prescribe an MRI because the doctor believes it is only for ‘life and death’ situations vs state regulation.

              Here is source
              http://www.dailymail.co.uk/news/article-2486789/Natasha-16-complained-headaches-She-died-13-doctors-failed-diagnose-brain-tumour.html

              1. Chris says:

                An MRI is first not easy to schedule, and second it is a long and trying to be tested in one. They are not easy, and so one usually needs a real good reason to get one. And usually given after a CATscan.

                My son was admitted to the emergency department with slurred speech, and his left arm was numb (he has a heart condition). He got a CAT scan of his head and chest X-ray that evening, but he had to wait almost a day to get a head MRI. And then several hours to have it read. All it all it was three days in the hospital, all because of the MRI.

                A cardiac MRI took longer to schedule, which was used for his later heart surgery.

                After reading that article, with full 20-20 hindsight, I wonder why a head CAT scan and/or X-ray were not ordered.

            3. windriven says:

              @FBA

              “What does that have to do with parental rights? You figure it out.”

              Are you stupid, illiterate or just batshit crazy? Even if MRIs were limited to life and death situations in the UK – and I don’t believe that to be the case – the issue would be health care delivery parameters, not parent rights.

            4. WilliamLawrenceUtridge says:

              …because you know what a real doctor does.

              You think thirteen doctors missed her diagnosis because every single one of them was maliciously denying someone an MRI. It’s certainly not that oligodendroglioma-like leptomeningeal tumors are clinically poorly described, or that migraines, numbness and other symptoms can have myriad causes, that a tumor that involves the spinal cord as well as the brain is going to have wildly different symptoms than a tumor that solely affects the brain, that diagnosis of such a tumor is difficult, that it can be unexpectedly invasive or indolently pernicious, that it is explicitly a rare tumor, no, never mind all those nuances and difficulties. No, you’ve decided, with your wisdom and training as a homeopath, but really solely based on the benefit of hindsight, that Ms. Simmonds’ doctors were executing a state-wide ban on MRIs because of rationed care. Never mind that Ms. Simmonds got an MRI, and was operated on, twice, between her MRI and her death. Never mind that her symptoms improved between appointments. Never mind all of that. No, you’re right, the problem is that Britain is exactly like North Korea in their efforts to take away parental rights.

              Now in a country where the physician makes the decisions and not the National Health Bureau (not your country!), the following would have taken place:

              Look for the name “Colin Downie” in this news story, then tell me again how the National Health Bureau makes the decisions about who gets an MRI. MRIs are limited resources, not risk-free, and often produce spurious findings. In most cases, I’m sure the set of symptoms Ms. Simmonds had, remitting and flaring as they did, are not indications of a common brain tumor.

              An inquest will be held. Doubtless it will find that this was a difficult case and incompetence is probably not going to be the finding. You will interpret this as protectionism and cronyism, but that’s because you think medicine is easy and that you’d be better at it than a real doctor. That’s because you aren’t a doctor. You really think that the doctor didn’t do a neurological exam, that the standard tests weren’t performed? Or perhaps the results were equivocal.

              Yeah, I bet it’s easy to diagnose such a tumor when you already know the diagnosis.

              1. mousethatroared says:

                @ WLU – Natasha “complained of headaches, numbness in her limbs, back pains, vomiting and problems with her eyesight.”

                She had back pain and numbness in her limbs…these are symptoms of nerve compression in the spine, …and it turns out she had a tumor in her spine. Just because the type of cancer causing the tumor is rare, does not mean the signs of some type of tumor or other spinal problem (such as injury or congenital disorder) shouldn’t have been on the doctors radars.

                You really seem to be erring in favor of an unavoidable mistake. I don’t really get it. I have intermittent pain in my neck and numbness/tingling and the docs zeroed in on nerve compression right away…why did they attribute all her symptoms to migraine without more thorough testing to rule out other causes of back pain with numbness in the limbs?

                I wonder if the first doctor made a hasty diagnoses based on a perception of a teen being melodramatic and then the other docs just based their conclusions on the first docs diagnoses.

              2. WilliamLawrenceUtridge says:

                I totally admit that my comment is mostly irritation at FastBuckArtist’s latest and recurrent douchebaggery, but my ultimate core point stands – for some reason, diagnosing this tumor was apparently difficult. The symptoms came and went, it was a rare tumor, and for some reason thirteen doctors failed to recognize what was causing them. Perhaps the inquest will reveal oversight of the diagnosis because of personality. Perhaps Ms. Simmonds was given a diagnosis of mental illness and nobody looked past it. Perhaps this particular tumor had some bizarre characteristics that made its symptoms unusually uninterpretable, or perhaps it grew in such a way that mimicked psychosomatic complaints (i.e. causing tingling that ceased at the wrist rather than according to the more normal pathways of innervation. I don’t know. You don’t know. But most of all, it had nothing to do with state rationing, everything to do with doctor’s oversight, and FastBuckArtist is a fucknut who systematically distorts evidence to maintain his preconceived notion that real medicine is somehow unimaginably wrong and evil, completely ignoring the fact that this news story is widely reported because of its unusual nature (and also ignoring that an MRI was ordered, by the initial pediatrician who first saw Ms. Simmonds, who at some point obviously either caved, or, and this is an interpretation that Fucknut failed to consider, realized that these bizarre symptoms may have had a physical rather than purely psychological or neurological component) meanwhile failing to disclose his true purpose – false dilemma. If this story is true, then somehow it means Fucknut’s coyly-concealed profession works.

                None of us know the actual situation, the presenting complaint, how labile the symptoms were, and so on. None of us have ever diagnosed such a tumor (in fact, almost nobody has since it is so rare, single case studies are the unit of reporting and analysis). Pretending that this is somehow an indication of the fundamental cruelty and unreliability of the state or modern medicine is simply wrong and arrogant.

              3. mousethatroared says:

                @WLU – What make you think the fact that Natasha’s symptoms were episodic was not suggestive of a brain tumor or lesion? Every source that I have looked up suggests that a very large percentage of patients with brain lesions have episodic rather than constant symptoms. Vision changes and nausea/vomiting are other symptoms that Natasha reported, that are on the list of red flags that suggest an investigation into a brain lesion is warranted.

                The U.K. organization Headsmart suggests that the time to diagnose brain tumors in children in the U.K. is longer than the U.S. and European nations. To me, this suggests an opportunity to improve care through increased public and health professional awareness of the symptoms and signs of brain tumors in children. If that IS the case, throwing up your hands and dismissing Natasha’s misdiagnoses as an example of “Medicine is Hard” is a cop out.

                Science should be looking for opportunities to improve outcomes, not excuses for failure….particularily when those excuses may reinforce misperception, such as the wrongly held belief that intermittent symptoms rule out brain/spinal lesions.

              4. mousethatroared says:

                WLU – “completely ignoring the fact that this news story is widely reported because of its unusual nature”

                Actually, I would say reviewing some similar U.K. stories. I think it is widely reported due to a growing concern that the U.K. may be lagging behind other nations in their ability to diagnose brain tumors in children in a timely manner.

                “(and also ignoring that an MRI was ordered, by the initial pediatrician who first saw Ms. Simmonds, who at some point obviously either caved, ”

                An A and E (is that british for E.R.) doc suggested that Natashas symptoms did not seem to fit the diagnoses of migraine. so the girl’s GP ordered the MRI – but didn’t put a rush on it….Does this decision meet best practices for those symptoms? I don’t think so.

                “or, and this is an interpretation that Fucknut failed to consider, realized that these bizarre symptoms may have had a physical rather than purely psychological or neurological component) meanwhile failing to disclose his true purpose – false dilemma. ”

                Whatever. We all know FBA is wrong. The point is that you shouldn’t be so busy standing in the way of an obvious idiot that you also stand in the way of progress.

                Also psycosomization is a diagnoses of exclusion because it’s well know that psycosomization can mimic tumors. You need to show evidence that appropriate exclusion took place to show that any doctor could arrive at that diagnoses correctly. The fact that she was seen by doctors is not adequate evidence.

              5. WilliamLawrenceUtridge says:

                I don’t know near enough about tumors, neural conduction or this particular cancer to say why the findings were not considered suggestive of cancer versus migraines. I don’t think it’s a cop-out to say “medicine is hard”, but it’s far harder than I understand it because I don’t understand it. For 13 doctors to miss the diagnosis, that suggests the symptoms were unusual and uncharacteristic of a tumor, but perhaps Ms. Simmonds was slapped with a label then ignored or belittled. I’m content to wait for the conclusion of the inquest rather than concluding now it was a matter of doctors being malicious, neglectful or her treatment the result of pigeon-holing. I could be wrong, a consistent complaint found among doctors themselves is “this patient got slapped with a psych diagnosis and it was never revisited”.

                As for the lagging of the UK regarding the diagnosis of tumors, that suggests medicine is doing what it is supposed to – reflect on its own conduct and improve. In the meantime, patients suffer and die. It means medicine is imperfect, it never means that CAM is the answer, the subtext of Fucknut’s whinging.

                An A and E (is that british for E.R.) doc suggested that Natashas symptoms did not seem to fit the diagnoses of migraine. so the girl’s GP ordered the MRI – but didn’t put a rush on it….Does this decision meet best practices for those symptoms? I don’t think so.

                I don’t know. I simply don’t know. I do not, and will never, have the skills necessary to determine why the diagnosis of this tumor fell through the cracks. While our interpretation of the symptoms reported in the paper is that it is obvious she should have had an MRI earlier, I certainly don’t know enough about diagnostics to say that it was an obvious miss or she was the victim of an inappropriate label.

                I also don’t know how long a normal wait time is for an MRI in Britain. That could have been a rush.

                I don’t know what the best practices for her symptoms would have been. I don’t even know the full extent or details of her symptoms. I’m satisfied to wait until the outcome of the inquiry, and I hope it’s discussed again on this blog – where I rely on the editors for their context and training for interpretation.

              6. mousethatroared says:

                WLU “As for the lagging of the UK regarding the diagnosis of tumors, that suggests medicine is doing what it is supposed to – reflect on its own conduct and improve. In the meantime, patients suffer and die. It means medicine is imperfect, it never means that CAM is the answer, the subtext of Fucknut’s whinging.”

                Yes, medicine should reflect on it’s conduct and improve – particularily when that conduct included not investigating back pain with numbness in a pediatric case. And fighting CAM should NEVER get in the way of that. When you suggest that it’s unlikely that all these doctor made a mistake…you did so without any background in what they should have been doing. Blind trust of a group of doctors is not science and it’s not anti-CAM it’s just blind trust. How strong is your anti-CAM argument when it becomes clear that you are uninterested or incapable of spotting doctors who are screwing up in a conventional way?

                Doctor suggests a child not get a flu shot, the horror. Doctor refuses to do a MRI in the case of back pain with limb numbness in a pediatric patient, oh well, they must have had a good reason.

                If you don’t know the standard of care for a particular case, then you shouldn’t assuming that the doctor was correct, particularly when the failure resulted in a tragedy. Just saying you don’t know what happened, but there is no evidence that rationing was the cause, makes your point without overstepping on a conclusion.

              7. WilliamLawrenceUtridge says:

                I’m not saying none of the doctors made a mistake, obviously all 13 did make a rather egregious one. I’m saying that there is probably a reason for this, and at least part of that reason is almost certainly the difficulty in diagnosing this particular type of tumor. Perhaps it was a systematic error that was due to poor training, perhaps it was a unique confluence of circumstances which, in retrospect, is easy to understand. Perhaps they all need to be delicensed and fired, perhaps nobody would have ordered an MRI. I don’t know.

            5. sue says:

              Utter crap ! my grandmother had an MRI scan on the British NHS to test for mild dementia just a couple of weeks ago. She is 91. No life or death dilemma. Just an attempt to improve her quality of life.

          2. morelenmir says:

            - Parent goes to a neurodoc, asks for an MRI scan, the doc refuses since the state regulations in britain allow MRI for “life and death situations” only, and he doesnt see this as this being one.

            With the greatest of respect, that is total and complete BULLSHIT!!!

            I personally have had an MRI this very year for what in no way could be considered a ‘life or death’ problem, as in the past has my partner.

            In Britain an MRI is in fact often the first choice for NON-emergency, non-broken bone imaging, as the extra unnecessary X radiation is considered a far greater problem than any perceived increase in treatment cost.

            Whatever the many problems the NHS may have, we receive standard-of-care across the board. What sticks in the public’s mind – especially the public of other nations who are unlucky enough to lack socialized health care – are of course the few occasions where something does go wrong. In these cases the various levels of administration do their damnedest to put it right.

            1. Chris says:

              “In Britain an MRI is in fact often the first choice for NON-emergency, non-broken bone imaging, as the extra unnecessary X radiation is considered a far greater problem than any perceived increase in treatment cost. ”

              What! In the emergency department my kid was given a CAT-scam (a fancy X-ray), and had to wait for a day in the hospital for an MRI.

              There is some serious mus-communication going on about this.

        2. Harriet Hall says:

          I’m beginning to think you can’t read. You cited a link as an example of the state denying MRI scans. According to that link, the state had nothing to do with that case. It was a case of doctors not realizing the patient’s symptoms justified doing an MRI.

        3. WilliamLawrenceUtridge says:

          Yeasterday it was used to force chemotherapy on the amish, which might be ok with you, today it was used to Deny MRI scans for a child with brain tumor and tomorrow when government changes you may get mandatory reiki energy sessions for your kids tumor, with a state guardian appointed to ensure you dont interfere with the healing.

          So…the UK government specifically issued an edict that Simmonds not be given an MRI? It’s not merely a case of medical error? This was a deliberate attempt to cause someone to die of a brain tumor?

          Also, the comparison of reiki is completely inapt. Chemotherapy is a well-validated intervention to reduce death rates due to cancer, particularly for pediatric cancer. Reiki is nonsense that CAM proponents assert exists and is effective, with completely zero evidence.

        4. Jacob V says:

          Your notions of state vs. parental rights are so grossly ill-informed as to be laughable. Nearly all civilized first would countries have specific laws that not only protect parental rights. but these same laws allow state intervention when a parent is being negligent or maltreating their child. The notion that a child is parental property and separate from the concerns of the broader community is absurd. Perhaps you really think the state has no vested interest in parents providing minimum standards of care? If that is the case you then are absent common decency or so completely ignorant of child safety and welfare issues that your residence must be under a very large rock indeed.

    4. WilliamLawrenceUtridge says:

      I expect the mother and father to be the mother and father. This includes recognizing that sometimes you have to do something of short-term pain or inconvenience for the child (i.e. vaccination, chemotherapy, homework) in order to ensure, or increase the likelihood of their long-term health. The fact that the mother and father aren’t doing this, the fact that they are irrationally putting their child’s health at risk, is the reason the state steps in. It’s not quite as basic as removing a child from their parent’s care in the face of blatant physical and sexual abuse – but it’s close.

      Thats the bigger question here, think North Korea, think Soviet Union, when family rights are thrown out and replaced with the interests of the empire, you have tyranny.

      You’re an idiot. There are no state-wide implications here. If the child is not treated, she might die. If treated, she could live a long life well into what we would consider retirement years. Where are the implications for the state? You really think the North Korean government is sending its jackbooted thugs to kick in doors to ensure their citizens get chemotherapy? It’s probably doing what real tyrannies do – restricting the freedom of movement, expression and association of its citizens, failing to provide most basic services including power, clean water and decent medical care, and shoveling so many resources into the military and ruling family that people starve unless they felch the Kim Jong family on a regular basis.

      Way to trivialize the suffering of millions of people. Good one.

    5. mousethatroared says:

      FBA – I know a woman who’s daughter was adopted through foster care after her biological mother lost custody. The biological mother failed to follow-up on a life threatening congenital disorder (correctable with surgery). She had a severe substance abuse problem. The CPS social worker who made the home visit to investigate the doctor’s complaint, found the infant sleeping on the floor of a dirty house, with dogs wandering around, she (the infant) was unwashed, unchanged and severally ill.

      You would have us believe that state intervention in this situation is a slippery slope to becoming North Korea. Please, give me a break.

  9. Birdy says:

    A parent could believe that humans don’t require oxygen to live as much as they want, but if they tried to deny oxygen to their child on the basis of that belief, the authorities should step in, as they should. A parent’s wants or beliefs don’t outweigh the child’s basic right to live.

  10. Lawrence says:

    I don’t want the State to have to step in, but I also want parents to make sane, rational decisions regarding the care and treatment of their children……when they don’t then Society must take action in the best interest of the child.

    Basically, parents – stop doing stupid things & making these kinds of actions necessary.

  11. Sciencenerd says:

    I find it very interesting that these parents are probably totally against abortion, because in denies life, and yet would assert their parental right in an action that could very well result in the premature death of this child. So often these cases involve Christians who believe that the fetus has more rights than the mother, but the mother and father have more rights once that fetus becomes a child.

  12. Skeptiquette says:

    I think there are some legitimate avenues to explore in “alternative microbiology” , which in my mind means microbiological ideas that are nascent (like Dr. Crislip pointed out in his first quote, unifying theories or understandings are built from fragments through arduous scientific research) and only a piece of the greater puzzle.

    I will just point out one idea that I think holds some water and could alter the way we do “business” in the medical world. That is the idea of microbial endocrinology. Here is a link to a quick primer:

    http://www.asm.org/ccLibraryFiles/FILENAME/000000004816/znw00409000169.pdf

    This idea is prefaced on the fact that bacteria have co-evolved with various organisms that secrete hormones and have developed receptors for these exogenous macro molecules, and so, have the ability to alter their patterns of genetic expression depending the state of the host.

    In a sense, this bridges that gap of the oft touted quote that: “it is the terrain that matters” meaning it is the state of the host that makes one sick, not the bacteria.

    The interplay between host and pathogen is very important and could unlock clues to potentially therapeutic avenues of treatment for infectious disease that are more effective than current approaches.

    Some of the seminal work done in the field in the last decade has explored how stress hormones can alter the expression of genes in bacteria, eliciting the expression of virulence factors. It is certainly an interesting notion to think that the state of the host may be provoking the virulence of a normally symbiotic bacteria or even an invading pathogen. It also makes sense that this would be the case. To what extent we can alter this provocation and prevent infection is up in the air.

    Some other ideas that come to mind when contemplating this are:

    How does the state of the immune system regulate bacterial genetic expression? Is the inflammatory state a provocateur of virulence in normal flora (strep pneumoniae, B. Pertussis, etc.) think secondary bacterial infections post viral infection. (this idea in contrast to the concept of secondary infection due to compromised immune system from primary viral infection)

    How does the normal flora regulate the tone of the innate immune system? i.e. circulating cytokines (regulatory, anti-inflammatory, and pro-inflammatory).
    How does diet affect the milieu of normal flora? Which may ultimately impact the above questions?

    Do, and if so, How do vaccines affect the trajectory of bacterial colonization of the neonate? Via alteration of the cytokine milieu? Via alteration of normal pathogen exposure?

    Just some thoughts to spark discussion…

    skeptiquette

  13. Skeptiquette says:

    Sorry, I posted the above comment in the wrong thread… I re posted in the alternative microbiology thread.

    thanks,

    Skeptiquette

  14. Susan says:

    Bullshit propaganda site, funded by big pharma

    1. WilliamLawrenceUtridge says:

      Even assuming this is true (it’s not, SBM has frequently criticized Big Pharma, see here, and this positive review of Bad Pharma, and this discussion of fraud in medicine and this call for better research transparency, and this criticism of mainstream methodology, and this criticism of statistical errors, and basically any mention of John Ioannidis), how would this invalidate the criticisms? Even if this site were funded by Big Pharma, does that somehow prevent chiropractors, acupuncturists or proponents of cancer quackery from conducting good research and abandoning methods that don’t work? Does Big Pharma force “natural cure” proponents from conducting clinical trials rather than relying on anecdotes? Does Big Pharma prevent patients from realizing that surgery for solid tumors is highly curative for many people, and that chemo and radiation are only useful for preventing metastases and recurrence?

      If complementary and alternative medicine is so effective, why does this effect vanish every time it is tested scientifically?

      Also note that your sentence fragment is Dr. Hall’s list of spurious complaints ventured by science-based medicine’s critics. Just sayin’. I’ll also point out how lazy it is. “It’s Big Pharma” is basically your way of saying “I can’t think of a reason why you are wrong, but I think you’re wrong anyway”. Lazy.

  15. Paige Regen says:

    Re: Your inflammatory remarks about Chris Wark:

    You state and I quote – “chemotherapy is not the cure; it only reduces the risk of recurrence after surgical extirpation of the tumor”. Chris Wark was told after his surgery that they wanted to give him 6-9 months of radical chemotherapy. As a PATIENT WITH RIGHTS, he made an informed decision to not undergo chemo. I find your remarks to Chris’ choice as “Quackery” very offensive at best.

    You sir, are a Big Pharma/Medical Mafia pig!

    As far as the Amish family; I’m SO glad they had the guts to escape from the clutches of a despicable Corporate Machine. The U.S. Medical Industry as far as I’m concerned, are Government protected Serial Killers.

    1. David Gorski says:

      As a PATIENT WITH RIGHTS, Chris made his own informed decision to pass on the chemo and implement Alternative Therapy. Your inflammatory statement that Chris’ choice was “quackery” is very offensive!

      His decision was anything but informed, as is evidenced by the pseudoscience and clear lack of understanding in everything he says. I’ll also clarify. Refusing chemotherapy isn’t necessarily quackery. What is quackery is what Chris decided to do instead of chemotherapy and the treatments he promotes on his website. He promotes dangerous misinformation by proclaiming that it was the quackery that cured him, not the surgery he had before he started using the quackery.

      Of course, calling what Chris did quackery is so very, very offensive to you, but apparently calling me a “Big Pharma/Medical Mafia pig” is not. Your double standard amuses me.

  16. Paige Regen says:

    Re: Chris Wark

    You state and I quote “chemotherapy is not the cure; it only reduces the risk of recurrence after surgical extirpation of the tumor”. After surgery, it was recommended that Chris Wark undergo 6-9 months of radical chemotherapy. As a PATIENT WITH RIGHTS, Chris made his own informed decision to pass on the chemo and implement Alternative Therapy. Your inflammatory statement that Chris’ choice was “quackery” is very offensive!

    As far as the Amish family – I’m SO glad they had the guts to escape the clutches of the Medical Mafia and do what they feel is best for their daughter and family.

    You sir, are a Big Pharma/Corporate Medical pig! You speak on behalf on an Industry that are Government protected Serial Killers as far as I’m concerned.

    1. David Gorski says:

      As a PATIENT WITH RIGHTS, Chris made his own informed decision to pass on the chemo and implement Alternative Therapy. Your inflammatory statement that Chris’ choice was “quackery” is very offensive!

      His decision was anything but informed, as is evidenced by the pseudoscience and clear lack of understanding in everything he says. I’ll also clarify. Refusing chemotherapy isn’t necessarily quackery. What is quackery is what Chris decided to do instead of chemotherapy and the treatments he promotes on his website. He promotes dangerous misinformation by proclaiming that it was the quackery that cured him, not the surgery he had before he started using the quackery.

      Of course, calling what Chris did quackery is so very, very offensive to you, but apparently calling me a “Big Pharma/Medical Mafia pig” is not. Your double standard amuses me.

  17. Mennonite Maiden says:

    This country (United States) is sick – as in deranged. In any other industrialized country (and many 3rd world countries) a family is not ruined financially because of medical bills. You need a dentist – you go to one. You need a doctor – you go to one. The US is truly a deranged country. Run by corporations, banks and insurance companies. May the FDA, Big Pharma and the American Cancer Society burn in hell. Monsters.

    1. Chris says:

      ” May the FDA, Big Pharma and the American Cancer Society burn in hell. Monsters.”

      Your comment is more about the lack of a national health insurance system, who are they responsible for that? Perhaps you should direct your ire to those in Congress who held our country hostage for two week with a “government shutdown” because they don’t like “ObamaCare.”

    2. Dave says:

      I agree with the first part of your statement. It irritates me that I live in the only developed nation where I have to worry about the financial burdens of getting sick. However, the FDA and the American Cancer Society have no more to do with that than the queen of England. Direct your ire towards Congress and the people who elected the representatives who are so against comprehensive health care reform.
      Witness all the furor over the ACA, which is a stab at minor insurance reform. A universal payor or public option was not even put on the table and had not a prayer of passing if it were.

      1. windriven says:

        ” A universal payor or public option was not even put on the table and had not a prayer of passing if it were.”

        I was struck by that at the time too. The Dems at that time controlled both houses of Congress. But a single payer system never got a serious airing.

        I have become convinced that we have to move that way but I will also admit that I doubt the Feds can administer an efficient system that brings our spending more in line with our peers. A single payer system that does nothing to rationalize health care delivery is little better than ACA.

  18. Slv says:

    This is a perfect example of how poorly the oncology industry treats its patients. So many doctors just don’t care about side effects, they only care about their “records”, meaning the percentage of their patients that hit the five year benchmark. They give the usual pills- Zofran, Compazine, Emend, Decadron, Norco, etc, but if your suffering is not relieved, they just say hmmm, or “that’s unusual”.

    I am three years out from adjuvant chemo, and my feet, lower legs, and hands are still partially numb and tingling. My stomach is a mess, I cannot have sex anymore due to the pain, and my memory is still a mess. Not to mention all the daily aches and pains. I know one leukemia patient who is done with chemo, yet is still numb from the waist down from neuropathy. Her physical therapist scolds her for “not trying hard enough”.

    If I’d had a crystal ball, I would rejected chemo. And everything is so glossed over these days it is ridiculous. My so called “informational booklet” about chemo ports had pictures of people ballroom dancing, arranging flowers, and playing the piano. I had to do my own research, which the interventional radiologist refuted. I could go on and on, but I would just bore everyone. Needless to say, I respect anyone’s decision to reject chemo, whether it is adjuvant or “life saving”. Because the life you get afterward may not be worth the pain.

    1. windriven says:

      “I am three years out from adjuvant chemo, and my feet, lower legs, and hands are still partially numb and tingling. My stomach is a mess, I cannot have sex anymore due to the pain, and my memory is still a mess. Not to mention all the daily aches and pains.

      “If I’d had a crystal ball, I would rejected chemo. Because the life you get afterward may not be worth the pain.”

      The sun rises every morning to unveil a day that you can watch birds flitter across the sky, hear the murmurs of children in the park down the way, smell the aromas emanating from the bakery. Another day to read Proust or Joyce or Annie Proulx, to listen to a Bach cantata or Jay Z.

      You made a choice and with that choice came a cost. You can focus on the cost or you can focus on the miracle that you bought. I really don’t give a shit which you choose. But I find it disgusting that you impugn the character of the men and women who struggle to bring that sunrise to thousands every day – at no small cost to themselves.

  19. Dave says:

    I’m sorry that you developed a neuropathy from your chemo, Slv. However, let me ask you a question.

    Suppose you are an oncologist, and you are seeing an 8 year old girl with a T cell lymphoma, as this one had. You know that with current regimens there is an 85% chance of cure (not 5 year survival, cure) for this girl. You also know that without chemo she will certainly die a miserable death. You have the following options:
    1) You can tell the parents that chemo has many side effects which are so bad that you would not recommend it. You can however refer the parents to a hospice unit as their daughter will surely die.
    2) You can advise the parents that chemo has many side effects but that it offers a good chance of cure for their daughter. There will certainly be some short term side effects and possibly long range side effects. Hopefully these will be manageable but the odds are she will live.
    3) You can reduce the dose of the chemo. The odds of cure are much less and she will still be exposed to chemo. Side effects will probably be less but so will the cure rate and this would be considered substandard care.

    What would you do?

  20. Dave says:

    This comment will not be appreciated by many here, but I’m going to make it anyway, partly because I’m now reading a book about the large hadron collider and the Higgs boson discovery and have come to realize how pathetically little I know about quantum physics even though I’ve read numerous lay books on the subject and even taken a Teaching Company course on quantum mechanics. It will be rgarded as appeal to authority, but here goes.

    I’m a general internist in practice for almost 40 years. I am based in a rural hospital where a visiting oncologist comes a few times a week, and I am therefore more engaged in the care of cancer patients than most internists who refer and then have little direct involvement. I’ve also read more about oncology therapy than most internists because of this. Despite this, at tumor board I am made aware of how little I know compared to the oncologist, especially when the discussion turns to the significance of various molecular markers found on flow cytometry on hematologic malignancies and the newer gene mutations on solid tumors, and how that relates to therapy with new cancer agents whose names sound like Babylonian gods. Yet I am amazed that many patients seeing this oncologist, (who has college, medical school, an internal medicine residency, an oncology fellowship, and 25 years of practice as his experience), think they can look on the internet for a couple of hours, talk to a few friends and relatives, and then know more than he does. And yet he’s the arrogant one! I have to say, he gives them the data, lets them decide, and then moves on. I’ve never seen any irritation if they reject his advice, and if they return when the naturopathic treatment fails he does whatever he can for them.

    Ok, shoot this full of holes. It’s just my opinion.

    1. weing says:

      I just want to add that I took that Teaching Company course on QM too. Watched it several times in fact. I still don’t know it.

  21. Trixie says:

    I just wanted to point out that Amish do, in fact, use refrigeration. Their refrigerators generally run off of gas powered generators. They use a good bit more technology than you’d think.

  22. Shelley Valdivia says:

    If I were the parent of such a child, my husband and I would talk it over extensively with our child. We would be sure that she understood both sides in an age appropriate way. If she did choose chemo, then wanted to stop, we would let her. It all depends what an INDIVIDUAL wants for their life.

    http://www.sacbee.com/2013/12/01/5959711/for-childhood-cancer-survivors.html

    1. windriven says:

      @Shelley Valdivia

      “If she did choose chemo, then wanted to stop, we would let her.”

      This is a 10 year old girl we’re talking about. I’m not quite sure how one explains “both sides” of cancer treatment in an “age appropriate way” and still have something that would meet the legal, much less the ethical, standards of informed consent. Further, I understand the medical side. What might the other side of “both sides” be?

      Does this technique apply to broccoli, homework, household responsibilities, etc? Does it apply at age 9? 7? 3? Just trying to understand the outlines of your approach.

      1. Harriet Hall says:

        I had the same thought. If an age-appropriately informed child decided she wanted to eat nothing but candy bars and junk food, became massively obese, and refused to exercise, bathe, change her clothes, or wear a bicycle helmet or a seatbelt, would you respect that that was what she wanted for her life and do nothing? At some point, this amounts to child neglect.

      2. Chris says:

        This reminds me when my younger son got his first set of braces in the fourth grade. He told me that the orthodontist said he had to eat soft food for a while. Food like cake and ice cream, and to avoid those hard foods like carrots and other veggies.

        I actually laughed, because I told my mom the same thing when I got my first braces at about the same age.

        [sarcasm] Kids between the ages of three and thirteen are very good about making serious health decisions. [/sarcasm] Especially when one side is a several months of chemo with side effects but an 85% of living long enough to grow up, and the other side is death. Great choice.

  23. Liz says:

    Chemotheraphy is continually praised in this article and these comments. I’m sure everyone here knows or has known someone at some point with cancer. Chemo sucks the life out of the person and ravages the body killing every cell in it’s wake because it does not have the power to determine which ones are good and which ones are bad. This leaves the patient at a high risk of contracting disease or infection and they are forced to be secluded from the rest of the world so as avoid these infections. There are alternative forms of medicine and taking care of the body- one of which is food. It is this girl and her parents’ choice what treatment is right for them. Who died and made science the god of all disease cures? 3% of cancers are genetic. We are doing this to ourselves. I lost a childhood friend at the age of 13 to cancer that she fought for 10 years. She took chemo and radiation every time and still lost the battle. Considering she spent so much time on these treatments, she spent the majority of her life sick and bald. Is this not some form of abuse? If she didn’t have cancer it sure would be but I guess disease makes that acceptable- not even considering the effects that these treatments can have on the body long term. So tell me this, if chemotherapy and radiation aren’t 100% successful then why does it matter if someone chooses science or alternative medicine? There are now current reports that this young girl is doing very well and her cancer is receding. It would seem as though alternative medicine is not so abusive after all.

    1. Andrey Pavlov says:

      Chemo sucks the life out of the person and ravages the body killing every cell in it’s wake because it does not have the power to determine which ones are good and which ones are bad

      Not quite. Used to be the case, still is to a degree, but chemotherapy has advanced significantly and we have many targeted chemotherapies. Draining you is still, usually, better than dying of cancer though.

      This leaves the patient at a high risk of contracting disease or infection and they are forced to be secluded from the rest of the world so as avoid these infections.

      Almost correct, but once again we are getting better at that. And have drugs to help stimulate the immune system. And it is only for the time undergoing chemotherapy, not afterwards. And in many cases it really isn’t “seclusion” from the rest of the world. In fact, the vast majority of chemo is done as outpatient and the person goes home afterwards, which sort of completely nullifies your argument. Maybe I was being too kind with the “almost.”

      There are alternative forms of medicine and taking care of the body- one of which is food.

      Citation needed. Actually, not really. We’ve written about that very topic many times here. And it just doesn’t actually work.

      Who died and made science the god of all disease cures?

      Nobody died. A lot of smart people figured out that this is by far the best – and so far only – way of finding an answer to any question, particularly complicated ones. What other method besides science would you suggest we use to determine therapies for cancer?

      <blockquote.3% of cancers are genetic.

      Depends on what you mean. Technically all cancers are genetic. If you mean inherited, then yes a relatively small fraction is and that is variable depending on the cancer. 3% seems a little on the low side to me, but that doesn’t really matter. What is your point? That all the rest of the cancers can be prevented somehow? Well, yeah, actually a lot can. By stopping smoking and decreasing harmful environmental exposures. Want to guess how we figured that out? But ultimately, if you live long enough, you have a very high likelihood of getting some kind of cancer no matter what you do.

      I lost a childhood friend at the age of 13 to cancer that she fought for 10 years.

      That, by the way, would be a likely example of a genetic cancer.

      She took chemo and radiation every time and still lost the battle. Considering she spent so much time on these treatments, she spent the majority of her life sick and bald.

      Yes it is sad how we can’t cure all cancers. Especially back whenever you were 13. But we are getting better and better at it all the time. You know, by using science.

      Is this not some form of abuse? If she didn’t have cancer it sure would be but I guess disease makes that acceptable- not even considering the effects that these treatments can have on the body long term.

      Well, yeah. That is kind of exactly the point. Why on earth would we give drugs with harmful side effects to someone who has no need or benefit at all from them? That would indeed be torture and abuse. And yes they have long term effects on the body. Want to take a guess what the long term effect of cancer is?

      So tell me this, if chemotherapy and radiation aren’t 100% successful then why does it matter if someone chooses science or alternative medicine?

      Because a rational person would choose something that has less than 100% chance of success but greater than 0% chance. And alternative medicine provides, to a close approximation, 0% chance of success. Well, 0% additional chance. Every cancer has at least some people who will survive it no matter what we do. But chemotherapy greatly increases those odds. Which is why childhood leukemia now has a 95% 5 year survival when 30 years ago it was almost universally fatal.

      Your question is like saying “If a helmet won’t protect you from dying in a crash 100% of the time, why does it matter if you choose to wear a magical invisible helmet?” It’s called the nirvana fallacy. Or, as in one of my all time favorite SNL sketches with Mike Myers and Patrick Stewart, “If it isn’t Scottish, it’s crap!”

      There are now current reports that this young girl is doing very well and her cancer is receding. It would seem as though alternative medicine is not so abusive after all.

      You do realize she actually had some chemo, right? I genuinely hope she beats the odds and that the chemo she got was enough. Only time will tell, but it is absolutely too early to declare victory for quackery… I mean “alternative medicine.”

    2. Chris says:

      “I’m sure everyone here knows or has known someone at some point with cancer. ”

      Perhaps you should read about the author who wrote the above article:

      David H. Gorski, MD, PhD, FACS is a surgical oncologist at the Barbara Ann Karmanos Cancer Institute specializing in breast cancer surgery, where he also serves as the Medical Director of the Alexander J. Walt Comprehensive Breast Center and Cancer Liaison Physician for the American College of Surgeons Committee on Cancer.

      I am pretty sure he has met several with cancer, every week.

      “There are alternative forms of medicine and taking care of the body- one of which is food.”

      Citation needed. And by citation we don’t mean unverifiable anecdotes, but actual studies that shows these alternative forms of medicine works.

      “Who died and made science the god of all disease cures?”

      Um, the fact that the process of science over the past several hundred years is pretty much given us all the cures we know about. What would you rather we use instead?

      I would suggest you read The Emperor of All Maladies for a listing of some of those who did the science, and made cancer much more survivable than in previous years. And it does discuss the children that they desperately tried to save from cancer decades ago. If that is too long for you, then read this other article by Dr. Gorski: Chemotherapy doesn’t work? Not so fast… (A lesson from history).

      “So tell me this, if chemotherapy and radiation aren’t 100% successful then why does it matter if someone chooses science or alternative medicine? ”

      Because nothing is 100% successful, that is the “Nirvana Fallacy.” And the survivability with scientifically proven methods, even if it is only 30% (many are actually higher, childhood leukemia is about 90%), is much better than 0.000% with “alternative medicine.”

      Some people have unfortunately died by trying alternative methods for what were treatable cancers, only to have the cancer progress until it was too late. See Dr. Gorski’s August 11, 2008 article titled The Orange Man. Google “penelope dingle cancer”, about an Australian woman who was discouraged from getting real medical help by her husband.

      If you know of an alternative treatment that actually works, then go up to the top of this page and put its name in the search box. More than likely it has been discussed on this blog. Things like Hoxsey, Max Gerson, high dose vitamin C, and even one article on hash oil as a treatment for glioma. Then after you have checked to see it not being discussed anywhere on this blog, then tell give us the PubMed indexed studies by qualified reputable researchers that the chosen modality actually works.

      1. Uhm, qualified researchers say if you need chemo chances are you’re already dead. http://www.burtongoldberg.com/home/burtongoldberg/contribution-of-chemotherapy-to-five-year-survival-rate-morgan.pdf
        This isn’t a 50/50 chance like hollywood and the government agenda paint, unless the cancer is litterally outside of your body you are as good as dead (in these circumstances)

        1. David Gorski says:

          Ah, the fallacious “two percent gambit.” Wrong, wrong, wrong.

          http://www.sciencebasedmedicine.org/chemotherapy-doesnt-work/

          1. Ahh, well I don’t *think* I’ll get lung cancer anyway.

        2. MadisonMD says:

          Chris:
          David Gorski is a qualified researcher. I am as well. Scientifically you are wrong. Even anecdotal evidence can refute your claims. I have given chemotherapy to hundreds of cancer patients– and the vast majority live. They come back for regular follow up to see me for years afterwards. I have also treated physicians and nurses.

          Perhaps you are specifically talking about receiving chemotherapy for metastatic/incurable cancer. In this scenario, chemotherapy will not cure you, but it has a chance of prolonging your life and improving your quality of life. Whether to receive it for this purpose would depend on your personal values, the likelihood of benefit from chemotherapy, and the expected side effects (for some chemotherapy regimens side effects can be low).

          But, also, this issue indicates the need for improved therapies with better efficacy, predictability, and fewer side effects than chemotherapy. This is why I (and probably Dr. Gorski) have dedicated my career to cancer research.

          1. Sawyer says:

            In this scenario, chemotherapy will not cure you, but it has a chance of prolonging your life and improving your quality of life.

            One of the hidden premises that all the anti-chemo people on this blog seem to promote is the idea that doctors refuse to share this information with patients, and that the patients are too dumb to understand it. I know there is real evidence of a communication gap between oncologists and patients, but good lord, how stupid to they think people are? Even the worst doctors in the world will explain the difference between curing you and prolonging your life if you ask them. This information is not difficult to gather. Hell, you could figure this stuff out just by watching the evil “Hollywood” depictions of cancer that Chris bewails.

            Amazing how many critics of modern medicine adopt a strategy that is so clearly doomed to fail – “Doctors and patients don’t see eye to eye on cancer treatments? Let’s treat cancer patients as if they are mindless saps and are incapable of interpreting medical data regarding survival rates and side effects. Let’s prevent them from making a difficult, personal decision about the treatment they desire because they are too stupid to choose the right one. Somehow this cynical strategy will improve medicine in the long run.”

        3. Harriet Hall says:

          Did you even read the paper you cite? The increase in survival ranged from zero to over 40%. It makes a big difference what kind of cancer is being treated. Chemotherapy even offers complete cures in some cancers. And the purpose of chemo is not always to increase survival, but sometimes to improve symptoms. A friend of mine had pancreatic cancer that they knew would be fatal, but they used chemotherapy in an attempt to relieve her bowel obstruction.

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