Like many cases of children with cancer whose parents tried to deny them curative therapy in the past that I've written about, I've become intensely interested in the case of 10-year-old Amish girl with lymphoblastic lymphoma. Her name is Sarah Hershberg, and, in a rare instance of the state actually stepping in to protect the life of a child whose parents choose quackery over effective therapy, the court actually named a guardian to make medical decisions for her, leading the quacks and quack apologists to lose their minds. Sadly, the Hershbergers have reportedly fled the country, although, curiously, no mainstream news outlet has reported this, only quack-friendly sources, such as Chris Wark.
As I've mentioned before, the outraged pro-quackery contingent has been flooding the Facebook page of Akron Children's Hospital with their anger. The messages have a very depressing similarity. The parents' rights are being trampled. Sarah Hershberger is being poisoned by fascist jackboot pharma shill thugs. Yada yada. Interestingly, however, a man named LeRoy Keim, who is apparently related to Isaac Keim, Sarah Hersberger's grandfather, who gave an interview to Chris Wark over the weekend in which a number of highly dubious claims were made, made an appearance on the ACH Facebook page touting the interview with Chris Wark. In response, a "friend" posted a link to a fairly comprehensive post about the Sarah Hershberg case, which led LeRoy Keim to respond:
As i said before those that are ignorant abut natural healing and health are the once that will suffer for it ! Its interesting to see the perspective from someone with a different view and does not know the people involved ! if there is any child out there that was diagnosed with exactly the same kind of cancer that Sarah had and they did the full 27 mo chemo or are still in the process of doing it i would like to know how she is doing and see which one has the best quality of life , just a thought . I will leave a link to my website and if you check it out that is why I believe in the benifit of getting the right nutrition ! www.leroykeim.myzija.com
No one's arguing that quality of life isn't important. However, an even better question to ask is this. Out of children diagnosed with lymphoblastic lymphoma, the type of cancer that Sarah has, how many of those treated with the full 27 month course of chemotherapy are alive after five years compared to the number alive who were not so treated? The answer is: A lot more. As I've explained many times before, back in the early days of chemotherapy for pediatric malignancies, doctors would stop the chemotherapy after patients went into remission after the first induction round of chemotherapy. The cancers invariably came roaring back. That's what Sarah's doctors fear will happen if she doesn't complete her course of chemotherapy, and that's why ACH sued to appoint a medical guardian for her after her parents stopped her chemotherapy.
What's more interesting to me is Mr. Keim's website. I had never heard of Zija before; so I did a bit of investigating. Perusing the website, I learned that Zija is some sort of "natural" weight loss system that claims:
Designed to work with your body’s natural abilities, Zija’s Weight Management System utilizes the amazing health benefits of Moringa to deliver maximum nutrition all day and night. Each product provides a healthy dose of 90+ verifiable, cell-ready vitamins, minerals, vital proteins, antioxidants, omega oils, and other benefits. Our unique system focuses on balance and energy, including healthy eating, consistent exercise, and restful sleep. You’ll be amazed how much easier it is to meet your weight management goals with nature on your side!
Based on what? Apparently this:
Our story begins with one man viewing a documentary about a plant grown in far away lands. His interest piqued as he observed people being sustained by consuming small amounts of this “miracle tree”, which is being called “the most nutrient-rich plant ever discovered.” This man was Ken Brailsford, a pioneer in the nutritional supplement industry, the “Father of Herbal Encapsulation”, and the Founder of Zija International.
Ken began asking the right questions and learning as much as he could from scientists, biochemists and pharmacologists the world over. He worked closely with Monica Marcu, Ph.D., a highly respected botanical researcher and clinical pharmacologist, as well as the author of “Miracle Tree”, a book about Moringa’s qualities and benefits. He also enlisted the help of Russ Bianchi world-renowned Scientist and Food Formulator, to develop new ways to maximize Moringa’s amazing health benefits. The result is Zija’s collection of Moringa-based products including nutritionals, natural energy drinks, a weight management system, and a line of skin care products.
Ongoing Moringa research has been validated with hundreds of thousands of positive individual experiences. Moringa is changing lives every day, and Zija is positioned to deliver it to the world!
If you search for "Moringa tree" on Google, you'll find a plethora of health benefits claimed for it, ranging from weight loss to all sorts of health benefits, such as controlling hypertension, improved digestion and mood, and, of course, the ubiquitous "boosting of the immune system." If Mike Adams' NaturalNews.com says it's true, it must be true, right? Well, not so much. As Botswana Skeptic points out, there has actually been a fair amount of research, done on various Moringa products, with 313 entries on PubMed. However, there are no randomized controlled studies, other than for a veterinary study and as a means of assisting the purification of drinking water. There are all sorts of suggestive preclinical studies, but nothing definitive.
It's also obvious that Zija is a multilevel marketing (MLM) company very much like a depressingly long line of MLM "opportunities" that supplement manufacturers promote. It's basically the Herbalife that I hadn't heard of before.
So what does this all mean? Who knows? However, it is rather interesting that Sarah Hershberger's family believes in "nutritional healing," while having a relative who is a distributor in an MLM scheme that sells supplements using overblown health claims. Clearly, there is a contingent of the Hershberger family that is steeped in woo, with one family member a distributor in an MLM system to sell supplements and "natural" weight loss products. Unfortunately, that belief in woo could cost a little girl her life.
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Hmmm - I have a small bottle of moringa oil I got as a gift, but I use it mostly to moisturize the ends of my hair. It does a decent job of smoothing over the rough hair, but I have yet to see any of the other benefits claimed by Zija.
MLMs are yet another scam that just refuse to die, aren't they? Nobody ever stops to ask themselves why the business model puts so much emphasis on recruiting your own competition (other sales reps) instead of selling the products. And if the products are really so miraculous, why can't they compete in the standard retail market?
There is plenty of talk about the reduced quality of life during Chemotherapy but little mention of the quality of life when the disease becomes terminal after non-invasive and ineffective treatment. At that point one has a very poor quality of life then none at all. Of course with untreated cancer this is completely "natural".
Indeed. http://scienceblogs.com/insolence/2009/05/20/chemotherapy-versus-death-…
Cancer is a mean, nasty beast - you don't die pretty (and I've seen some pretty horrible situations at the end - with people who didn't seek conventional treatment until it was far too late).
I've also seen friend recover or at worst, be able to enjoy live to their very last days, because of the palliative care that was offered by their medical teams and hospice care.
Nobody ever stops to ask themselves why the business model puts so much emphasis on recruiting your own competition (other sales reps) instead of selling the products.
Because the goal is to sell the product to those other sales reps, not the end users. It's a bit like Milo Minderbinder's scheme to buy eggs in Malta for seven cents apiece and sell them in the mess hall for five cents and turn a profit. The trick is that Milo buys the eggs in Sicily for one cent and sells them in Malta for four and a half cents. It all benefits the M&M Syndicate (the initials stand for Milo & Minderbinder--we can't have anyone think this is a one-man operation), in which everybody in the squad has shares--as opposed to actually useful stuff, like morphine in first aid kits.
Edith: I have a small bottle of moringa oil
There's your problem, moringa oil suffers from separation anxiety if left in a bottle under 500 ml. Please immediately buy a larger bottle, with a refill subscription to make sure it never falls below the 250 ml level. Only then will you see the amazing effects.
LeRoy Kim's facebook page claims he is this girl's uncle and that he left the Amish: "Hi John I'm Sarah Hershbergers uncle, I left the Amish religion! There is a hearing tomorrow@11 will post update then!!" (https://www.facebook.com/leroy.keim)
"Ken Brailsford, a pioneer in the nutritional supplement industry, the “Father of Herbal Encapsulation""
If he plans to use that as an epitaph, he'll need the Mother of All Tombstones.
#8: Or figure out how to encapsulate it better...
(Hit submit too soon...)
He'll need the Father of Verbal Encapsulation.
Bacon @8 -- That reminds me: The earth's magnetosphere gives rise to a phenomenon called a "whistler", so called because it generates a radio signature that sounds like a whistle.
I'm thinking that if a magnetospheric physicist found a uniquely strong example of this phenomenon, he or she would be duty-bound to write a paper entitled "The Mother of All Whistlers".
There is a certain shortage of surnames in these communities. (The Christian names as well, but I don't know whether that has some sort of rule set.)
Anyway, I guess I oughtn't to be surprised that that one mode of becoming "ex-Amish" is specialized evangelism. This LeRoy pops up over there. And MLM seems right as rain – "Mormons Losing Money" didn't come out of nowhere.
Stoltzfus was the most common surname I saw when I visited the Amish community near Lancaster Pennsylvania, years ago.
http://amishamerica.com/what-are-common-amish-names/
Miller is the most common Amish name, seen most prevalently in the Midwest, in communities such as Holmes County, Ohio and northern Indiana. Other common names in the Midwest include:
Hershberger
Yoder
Hochstetler
Troyer
Schrock
Isaac Keim is Swartzentruber (offshoot). The name Yoder, of course, should be familiar to anyone who's given religious exemptions more than a passing thought. MAP is in part a different Jonas Yoder.
I'll skip the digression into who's saving whom and go straight for the commentary on shape-note singing.
I'm still trying to locate the area in the United States where Farkle is a common Amish surname, Narad:
http://www.youtube.com/watch?v=gD8iR25kBYI
^ Farkle or Farkel...that is. :-)
I think I mentioned a while ago that a similar religious group, the Bruderhof, has a community in my neighborhood in London UK. I had assumed, from their appearance, that they were Amish of some sort until my wife got into conversation with one of them recently. They make living publishing books, making children's toys and gardening.
My wife and I have been invited to visit their community some time. There are a number of topics of conversation I should probably avoid, but I am curious about their attitudes towards medicine, especially vaccination.
Bleah.
I can't remember what other patient and family member have this same exact shtick. I remember the patient was 'treated' in Mexico and that a close relation is shilling for an alt med product that reminds me much of this - the next superfood kinda thing.
Maybe it will come to me. Or not.
Spammer alert above.
F.Y.I. LeRoy is Issac's ex Amish son.Issac is also a distributor of homeopathic products possibly Zija.My question is what happens if Sarah Hershberger does die because she isn't getting proper treatment?Will the people involved in preventing her treatment be prosecuted?Maybe a whole new can of worms.Wonder if the family has thought about that or are they caught up in the idea that everyone will live happily ever after?My prayers are with the little girl and what this whole thing is doing to her!!
http://rawforbeauty.com/blog/amish-girl-being-forced-into-experimental-…
And asdf, we would care what that website says because...?
How does it disprove what Orac has written here? Be specific.
"that’s why ACH sued to appoint a medical guardian for her after her parents stopped her chemotherapy." The hospital has NO moral NOR legal right to FORCE their treatment onto the girl, but the hospital has the right to provide their treatment if the family chooses to accept the hospital's treatment. The hospital and the state govt should stay out of the family's affairs once the family makes that decision. How about a little respect!?????
Mr. Smith, do you believe parents should be allowed to deny their children access to lifesaving treatment?
Did these parents have the right to kill their child by not allowing him treatment for his appendicitis?
http://seattletimes.com/html/localnews/2009758878_apwafaithhealingdeath…
See the word in boldface? You lose.
And now we see Grandpa the MLM Dude saying that Sarah's been "cured" but of course he won't let real doctors see her to test this:
http://www.nydailynews.com/life-style/health/amish-girl-hiding-avoid-fo…
Check out the labels on chemotherapy drugs. There are bold warnings to wear special gloves during administration due to danger of poisoning. Yet they inject this garbage directly into patients! As they say, medical PRACTICE. On you.
Because the dose to one patient would be a lot less than repeated doses administered to someone who does not need the chemotherapy, yes.
For the same reason, your dentist stands behind a shield when she or he uses the x-ray on your teeth. It does not mean the dose you are receiving will kill you. It does mean that over a long period of time, if he or she doesn't take precautions, it probably will not be good for your dentist.
Your dentist is not trying to kill you.
Oh, yeah, that's what they say.
Hey, Wonton Smith, are you dumb enough to take drugs that were prescribed for somebody else?
No?
Why not? Could it possibly be because what their medical circumstances call for is not what your medical circumstances call for? Perhaps your heart doesn't need that digitalis?
Easy enough to understand, and yet you try to argue that if the doctor takes precautions to prevent him or herself from accidentally getting drugs prescribed for someone else, it must mean they're bad even for the person they're prescribed for.
So are you utterly stupid, or are you utterly dishonest?
Orac,
I was reading your blog amid all of the ad hominem attacks from both sides and was looking for some real data. i was reading your reference you had previously mentioned in this article.
http://www.ncbi.nlm.nih.gov/m/pubmed/10627444/
I see the survival rate is 90% for the prescribed treatment, but are there any data showing that regression is ensured stopping after two rounds of chemo? At least to a reasonable enough degree of certainty to override the wishes of the parents?
Two? As with the seemingly ever-varying "number" of legal actions, it strikes me that this is something that one might want to get correct before posing the question whether there are appropriate data.
@Jeff: This would be old data from the earliest days of chemotherapy for cancer. Docs noticed that even if the tumor melted away after one or two cycles it would come roaring back in a more resistant form if chemotherapy was stopped then. That's how multimodality therapy with multiple steps (induction, consolidation, etc.) was developed.
In the meantime, here's an update on Sarah's situation:
http://scienceblogs.com/insolence/2013/12/02/confirmed-sarah-hershberge…
LW - your dentist doesn't want to kill you; (s)he wants you to pay to obey instructions, not talk, have things stuffed in your mouth, be told how badly you floss, and suffer pain when needed.
Dentists are the dominatrixes of the medical world...
MOB
My dentist mostly tells me my dad should take better care of his teeth and he should follow my example.
Alas my dad hardly listens to me.