The AMA acts to try to rein in doctors spreading misinformation

Even if you're a relative newbie to this blog, you probably wouldn't be particularly surprised to learn that I don't much like Dr. Mehmet Oz, a.k.a. "America's Doctor." Of course, I refer to him as something slightly different, namely "America's Quack," for a whole host of reasons, including his featuring psychic mediums like John Edward and Theresa Caputo, faith healers, Ayurveda, homeopaths, dubious dietary supplements, and even antivaccine loons like Robert F. Kennedy, Jr. Indeed, when about a year ago Senator Claire McCaskill (D-MO) hauled him in front of her Senate committee over his unethical promotion of diet supplements as miracle weight loss aids and humiliated him, skeptics rejoiced. Unfortunately, that setback was only temporary, and Dr. Oz was soon back to his usual antics, just a little more circumspect about the "flowery" language.

Ever since Dr. Oz went over completely to the dark side and became "America's quack," skeptics have asked what can be done about him. After all, he was once a highly promising young academic surgeon and is still a prominent member of the faculty of Columbia University. A couple of months ago, a group of physicians and scientists, some of whom, unfortunately, were associated with industry and known for how the views they promote almost always align with industry, wrote a letter to Lee Goldman, MD, the Dean of the Faculties of Health Sciences and Medicine at Columbia University to complain about Dr. Oz's extracurricular activities. It was a tactic that backfired spectacularly, as the dean predictably invoked academic freedom in response, and Dr. Oz did a whole show attacking them all as industry shills. The result was the status quo. Dr. Oz is still doing his show, even though leaked e-mails from the Sony hack revealed that he was looking for some sweet, sweet shilling opportunities of his own.

Perhaps if medical boards, universities, and other regulatory bodies won't do anything, then maybe medical societies can address the problem of quack celebrity doctors like Dr. Oz. He's not alone, after all. Just looking at the pediatricians, for instance, who spread antivaccine misinformation, such as Dr. Bob Sears and Jay Gordon, shows that it's not just Dr. Oz. He's just the biggest offender because he has a syndicated daily television show seen by millions every day to spread his views, compared to the much smaller audience to which Sears and Gordon and their ilk can tap into. Not that they don't have influence. We've seen that they do, rallying opposition to SB 277 in California. Fortunately, in this case they failed.

In trying to address this problem, the American Medical Association (AMA) is taking the lead. Benjamin Mazer, the same medical student who has spearheaded Doctors in Oz, a blog and project whose purpose is to highlight and publicize the harm caused by bogus medical advise given by Dr. Oz, has co-authored a resolution with Joy Lee, another medical student and member of the AMA-MSS Committee on Legislation and Advocacy. This resolution asks the AMA to issue a public statement reiterating the importance of transparency to the profession and to craft guidelines on how doctors can ethically use media to help the public. In addition, it asks the AMA to issue a report on what disciplinary pathways might exist for doctors who continue to abuse their access to the media to spread medical misinformation:

WHEREAS, Patients receive medical information from a variety of sources other than their physician, including media outlets such as news programs and talk shows which feature physicians as experts; and

WHEREAS, The medical information disseminated in the media reaches millions of Americans, affects public health, and changes health behaviors; and

WHEREAS, The talk shows The Dr Oz Show and The Doctors draw 2.9 million and 2.3 million viewers per day, respectively; and

WHEREAS, a study published in the BMJ found that for 80 randomly selected recommendations made in The Dr Oz Show in 2013, only 46% were supported by evidence, 15% were contradicted by evidence, and evidence was not found for 39%; similarly, 80 randomly selected recommendations made in The Doctors in 2013, evidence supported 63%, contradicted 14%, and was not found for 24%; and

WHEREAS, it has been shown that only 0.4% of recommendations on The Dr Oz Show and The Doctors were accompanied by disclosure of potential conflicts of interest; and

WHEREAS, A physician is bound by the profession’s code of ethics to “participate in activities contributing to the improvement of the community and the betterment of public health”, a responsibility which encompasses the provision of accurate and relevant information; and

WHEREAS, A board-certified physician releasing inaccurate medical information is in violation of professional ethics, including but not limited to the oath to do no harm; and

WHEREAS, The AMA finds incompetence, corruption, or dishonest or unethical conduct by medical professionals “reprehensible” and has created a system by which individuals can report misconduct to the AMA and other medical societies for disciplinary measures; and

WHEREAS, In the case of Andrew Wakefield’s inaccurate and unscientific study linking vaccines with autism, the medical community responded by publicly retracting the relevant published article and banned Wakefield from further practice, setting a public precedent for self-policing within the medical community; and

WHEREAS, The AMA has policy which supports the provision of accurate medical information and authentication of medical credentials (E-5.04, H-445.997), active physician participation in the prevention of medical misinformation (H-225.994), proactive responses to misleading media releases (H-445.995), standards of conduct for social media, general public health, and the protection of public confidence in the medical profession; therefore be it

RESOLVED, That the AMA Council on Ethical and Judicial Affairs report on the professional and ethical obligations for physicians in the media, including guidelines for the endorsement and dissemination of general medical information and advice via television, radio, internet, print media, or other forms of mass audio or video communication; and be it further

RESOLVED, That our AMA release a statement affirming the professional and ethical obligation of physicians in the media to provide quality medical advice supported by evidence-based principles and transparent to any conflicts of interest, while denouncing the dissemination of dubious or inappropriate medical information through the public media including television, radio, internet, and print media; and be it further

RESOLVED, That our AMA study existing and potential disciplinary pathways for physicians who violate ethical responsibilities through their communication on a media platform.

This resolution was accepted a week ago at the AMA's annual meeting in Chicago. Interestingly, it was approved at the same meeting that produced a public position statement from the AMA in favor of eliminating personal belief exemptions to school vaccine mandates, a fantastic bit of news that I took notice of last week. As Mazer puts it:

"This is a turning point where the AMA is willing to go out in public and actively defend the profession," Benjamin Mazer, a medical student at the University of Rochester who was involved in crafting the resolution, said. "This is one of the most proactive steps that the AMA has taken [on mass media issues]."

The AMA will look at creating ethical guidelines for physicians in the media, write a report on how doctors may be disciplined for violating medical ethics through their press involvement, and release a public statement denouncing the dissemination of dubious medical information through the radio, TV, newspapers, or websites.

Of course, the AMA can't really enforce anything. It's not a regulatory or governmental body. Enforcing standards or laws is beyond its purview, as it's a trade association for physicians that has generally represented the interests of doctors in a variety of areas. However, despite its membership having fallen from approximately 75% of American physicians in the 1950s to less than 20% of physicians today, it is still the single largest medical association in the US; so its position statements do carry weight. As well, it is still important that the AMA take a position on this issue because it still represents the single largest megaphone that physicians have to the public. As such, it could pioneer new ethical guidelines for how physicians should disseminate information in the media, and it's never a bad thing for such a prominent doctors' group to reiterate formally that a physician has an obligation to be evidence-based in all medical information that he promotes in public.

Certainly, it's clear to me that the AMA is taking a move in the right direction from the reaction of quacks to the announcement. For example, the Alliance for Natural Health USA (ANH-USA), other wise known as one of the foremost promoters of "health freedom" (a.k.a. the freedom of quacks from being impeded by pesky government laws and regulations) is not pleased with this news. No, it is not pleased at all, so much so that earlier this week it published a screed lambasting the AMA and this resolution, describing it as a "gag order for medical dissenters." What's ANH-USA afraid of? Take a guess:

Dr. Oz is a high-profile example, but countless integrative doctors in states across the country routinely face harassment and the threat of having their licenses revoked by state medical boards for the most specious reasons—you may recall our past coverage of the Washington state board’s appalling crusade against Dr. Jonathan Wright as only one example among many. But when conventional doctors engage in behavior that is similar to that of integrative physicians—or when conventional docs flout the laws in the most egregious ways—state boards are far more lenient, if any action is taken at all.

The bias, then, is already overwhelmingly against integrative practitioners, and now the AMA is looking to take further steps to silence them. What will happen to doctors who don’t unflinchingly support the CDC vaccine regime, or who inform their patients of any alternative treatment that clashes with conventional orthodoxy? In Europe, it is already illegal for doctors to use the terms “probiotic,” “superfood,” and “antioxidant” when used in relation to commercial food products or supplements—and European doctors who even mention the benefits or health claims of any food, supplement, or non-drug product to patients face jail time. Will we allow free professional speech to be similarly suppressed here? Has the US come to this?

Gee, ANH-USA says this as though it were a bad thing.

Of course, it's the same old whine and distortion that we hear all the time, as the regulations in Europe being complained about don't even say what ANH-USA claims they say. No, it is not illegal to use terms like the ones described above. Certainly it isn't in the US. It's illegal to use such terms in advertising to make health claims that are clearly not supported by the evidence, particularly claims to diagnose or treat diseases. As for conventional doctors being treated more leniently when they engage in behavior similar to that of "integrative" quacks, I'd go the other way. I'd say that conventional doctors engaging in such practices should be treated every bit as harshly as any "integrative physician." The real problem, though, is that neither are really treated all that harshly. It's amazingly difficult to discipline and delicense physicians practicing alternative medicine because of the double standard promulgated by pulling various forms of quackery under the "integrative medicine" umbrella by so many doctors. It's what we call "quackademic medicine" when it's in academic medical centers, but it's also finding its way out into the community.

In case you doubt me, just wander over to Dr. Wright's website. You'll find what I consider to be a veritable cornucopia of quackery, including thermography, blood viscosity, naturopathy, treatments (including IV) with minerals, amino acids, and vitamins, and prolotherapy. He should be shut down. The ANH-USA's whine about being "muzzled" or "gagged" is utter nonsense. Medical professional societies have the right—no, the duty—to uphold professional standards, and this is all that the AMA is trying to do.

In the overall scheme of things, the AMA's action probably won't do much by itself. But if it serves as a start, an action that inspires other professional societies and—dare I dream it?—even state medical boards to follow suit, it could have a real impact. Imagine, for instance, not just Dr. Oz facing professional ostracization by the AMA. Imagine that, for instance, the American Academy of Pediatrics actually ostracizing antivaccine doctors like Dr. Bob Sears and Dr. Jay Gordon, the latter of whom prominently features "FAAP" after his name as an indication that he's a fellow of the AAP. Now that would be something.

Categories

More like this

The vast majority of what is known as "alternative medicine" is quackery. Let's just get that right out front right from the very beginning of this post. That's where I'm coming from, and where I'm coming from is a science- and evidence-based viewpoint. To quote a cliche that is true and modified…
Well, that didn't take long. I knew it had been too quiet on the Burzynski front. In retrospect, that was almost certainly because of the holidays, but the holidays are over, and real life is here again. Yes, the year 2014 is only a little more than a week old, and here comes Stanislaw Burzynski…
I realize that I just wrote about infamous cancer doctor Stanislaw Burzynski yesterday. (Note how I refuse to call him an "oncologist," mainly because he isn't one, having never completed an oncology fellowship—or even an internal medicine residency, the usual prerequisite to do an oncology…
Now that we're solidly into 2015, it's a good time to check in on what the legislative priorities are going to be among various advocates of quackery and "health freedom" (but I repeat myself). There's a new Republican Congress, and a lot of chairmanships are going to be reshuffled, with various…

Imagine that, for instance, the American Academy of Pediatrics actually ostracizing antivaccine doctors like Dr. Bob Sears and Dr. Jay Gordon, the latter of whom prominently features “FAAP” after his name as an indication that he’s a fellow of the AAP. Now that would be something.

If only. AAP really needs to grow a spine and do something about their members that actively work against the AAPs basic tenets and recommendations.

Todd W @1 -- Completely agree!

Though for "grow a spine" I suggest the pithier and gender-neutral term "grow some gonads".

By palindrom (not verified) on 19 Jun 2015 #permalink

Yes, it's particularly embarrassing for the AAP that Dr. Gordon is a fellow. I could forgive them for having Dr. Gordon and Dr. Sears as members: those doctors are, for better or for worse, licensed physicians practicing pediatrics, so if AAP works anything like my primary scientific society does, all Sears and Gordon have to do to be members is write dues checks that don't bounce, and I don't advocate changing that rule if I have stated it correctly. But the AAP bears responsibility for making Gordon a FAAP[1], so they have more of an obligation to enforce their recommendations in his case.

[1]This would ordinarily be a rather unfortunate acronym, but it's too appropriate in Dr. Gordon's case, as CREEP was for Nixon's 1972 campaign committee.

By Eric Lund (not verified) on 19 Jun 2015 #permalink

Geez, does it have to be the girl who says, "Grow some balls?"

I do not understand why the AAP continues to allow Gordon and Sears to remain fellows of their organization, given their behavior.

Uh-oh. The crazies who think the A.M.A. (and the ghost of Morris Fishbein) have ultimate power over physicians will go ape over this news.

"I do not understand why the AAP continues to allow Gordon and Sears to remain fellows of their organization, given their behavior."

They evidently pay their annual dues and haven't been convicted of felonies (this is pretty much all it takes to be a fellow in professional MD societies). The AAP could boot them out, but a better alternative might be to require anyone like them who puts "FAAP" after their name in a web posting or ad, to also list a disclaimer: "The American Academy of Pediatrics does not endorse my particular brand of jackassery and is embarrassed by my membership in the organization."

By Dangerous Bacon (not verified) on 19 Jun 2015 #permalink

Congratulations and a thank you to Benjamin Mazer for getting the AMA to sit up and take notice of Oz.

Regarding the new AMA policy on nonmedical vaccine exemptions, a similar news article (http://www.medpagetoday.com/MeetingCoverage/AMA/52000) also reported the AMA's new policy (http://tinyurl.com/pfwx3ro) calling for the elimination of non-medical vaccine exemptions

Also in this article it was mentioned that former AAP president David Tayloe, MD, told AMA members that AAP policy calls for no nonmedical vaccine exemptions whatsoever. Tayloe then said:

"The AMA does not need to leave a loophole in its policy for the likes of Jenny McCarthy, Bob Sears, etc ... Our vaccines are extremely safe, and children need to be immunized at 90% or more to achieve herd immunity, and we can't do this with choice."

1) How astoundingly ironic that someone who himself as AAP President completely failed to sanction Sears in any way, shape or form would then have the gall to lecture the AMA not to leave a loophole for Bob Sears. For anyone from the AAP to worry about another group's potential "Sears loophole" is ludicrous when the AAP gives Sears a medical home for his quackery along with free reign--as Robert Sears, MD, FAAP--to do and say whatever he wants about vaccines.

2) Although Tayloe refers to an AAP policy that calls for no nonmedical vaccine exemptions whatsoever, I can't find any such AAP policy on nonmedical vaccine exemptions . Yes, you can find policy stating the AAP is for high vacicnation rates (http://pediatrics.aappublications.org/con.../125/6/1295.full), but I can't find anything stating the AAP is for eliminating nonmedical vaccine exemptions. If the AAP has no such policy, then it is just really, really sad that the AMA is running circles all around the AAP when it comes to supporting vaccination.

I can't figure out what it will take to knock the AAP our of its current state of denial/stupor. I do know I won't rejoin the AAP as long as they refuse to speak out against those profiteering media-hogging anti-vaccinationists FAAPs Sears and Gordon, both of whom continue to put children in harm's way.

By Chris Hickie (not verified) on 19 Jun 2015 #permalink

I truly have no idea why more pediatricians won't speak out against Sears/Gordon. After 6 years of trying to rally fellow pediatricians while watching vaccination rates continue to fall, the lack of response from pediatricians as a whole is disturbing.

By Chris Hickie (not verified) on 19 Jun 2015 #permalink

Jay Gordon takes a great deal of heat here on RI over is anti-vax stance, and it is well and proper that he should. But even if he spun on a dime, and became the worlds leader in vaccine advocacy, I still wouldn't take a stray cat to him, much less a human.

Gordon advocates a great deal of woo on his website. Here are a few selected quotes (bolding mine, no links included to avoid moderation) -

For colds

Here are some natural treatments for colds that can be used in children and are also safe while nursing…

The first thing you’ll want to do is boost your body’s immune system. Echinacea, 2 capsules 3 times per day, and Colloidal Silver are great immune system boosters. You may also want to boost your intake of vitamin C, up to 500mg 4 times per day, and eat foods with plenty of fresh garlic….

Aromatherapy can be a great tool as well.

For depression

There are herbs that may drastically alter your feeling of well-being. These may be something you’d like to consider before resorting to medications.

For anxiety, a mix of Kava and Siberian Ginseng is good.

For depression, Gingko Biloba or Borage. There has been a good amount of success with a combination of the two as well.

Keep in mind when combining herbs to treat one symptom or illness to use a proportional dosage. (i.e., two herbs would be half dosage of each, three herbs would be one-third dosage, etc.)

Here is a link that goes into homeopathic remedies for depression. The info given is on postpartum depression simply because all of these are safe while nursing. They are all used to treat general depression as well, so they’re not specific for use for PPD.

In a first aid kit

I am a big fan of homeopathic remedies including teething tablets, arnica for wounds and pain, pulsatilla for earaches and sinus congestion and Boiron’s “Cold Calm” for scratchy throats. I recommend Nux Vomica for tummy aches and also suggest weak “tummy teas” like peppermint and chamomile.

Sears seems to be much more anti-vax than Gordon, but at least Sears doesn't advocate any other woo on his web site (at least, not that I could find).

I don't care for either one of these guys, but Gordon is the more disgusting of the two.

Dr. Hickie, Between plain inertia and fear of sticking one's neck out, I suspect that there isn't much incentive for physicians who care to take a strong position publicly against the likes of Sears, Gordon, Rosen and Palevsky. Mentioning Pavlevsky, I believe he even sits on some quack board of the AAP so I doubt the AAP has any incentive either. As a bit of an aside but an indication of the AAP's flaccidity, they won't take a strong position against routine infant circumcision nor strongly encourage/endorse breastfeeding.

By Science Mom (not verified) on 19 Jun 2015 #permalink

Sears seems to be much more anti-vax than Gordon, but at least Sears doesn’t advocate any other woo on his web site (at least, not that I could find).

Sears is every bit and even more dangerous than Gordon. Sears is a big proponent of dangerous "autism treatments" and pushes them, in guess what? His Autism Book as well as speaking engagements and his involvement with TACA

By Science Mom (not verified) on 19 Jun 2015 #permalink

yeah, Science Mom--the AAP's section on integrative medicine is a really doozy-- chock full of doctors who really shouldn't be doctors of anything.

By Chris Hickie (not verified) on 19 Jun 2015 #permalink

I wouldn't recommend Echinacea to anyone unless they've got a bare spot against a sunny wall and are looking for a spot of garden color.

They're very effective when banked with Shasta daisies.

Here are some natural treatments for colds that can be used in children and are also safe while nursing…

The first thing you’ll want to do is boost your body’s immune system. Echinacea, 2 capsules 3 times per day, and Colloidal Silver are great immune system boosters.

Ever seen a Smurf with a cold?

I had a friend-of-a-friend recommend Colloidal Silver to me recently (I'd injured my eye and was using antibiotic/steroid drops in it.) FOAF told me it was much better than what I was using. I politely declined and she didn't press the subject. (FOAF is also a huge fan of chiropractic for everything, homeopathy, reiki, etc. Friend puts up with her silliness while sticking to her own EBM guns. I don't talk medicine with FOAF, who is otherwise a very nice person.)

It is easier to spot the physicians spouting misinformation when they are TV celebrities, but much tougher to find the quacks when they are giving patients bad advice in their private practices. In that situation it might take the patient making a complaint to a review board, and that may not happen often if they are going to the doctor because they want the quack treatments.
http://darwinskidneys.blogspot.com/

By Rich Feldenberg (not verified) on 19 Jun 2015 #permalink

And Stanislaw and Gregory Burzynski are both still members of the AMA.

I was somewhat shocked to see the AMA come out and actually endorse a policy of trying to rein in some of the crazy quacks. With the unchecked proliferation of quackery into medical schools, hospitals, and clinics, I didn't figure they would have the gonads to step up and say anything. Here's hoping they actually do keep up with this. I wish the AAP would come out similarly but given Dr. Chris and ScienceMom's posts above I think they have their heads too far in the sand to take a stand that might be the teensiest bit unpopular. Kudos to the AMA.

Chris Hickie@ 7

I wish there was some way to comment on that MEDPAGE Today article as a guest.I see Hannah Poling's mother has commented.I would love to have an exchange with the Polings.

I still find it very puzzling that the Polings were awarded lifetime compensation for Hannah,who we heard had a genetic mitochondrial disease.Why didn't the vaccine court dismiss the case,because of Hannah's pre-existing condition?

I say this as someone who has mitochondrial disease,and autism that was low functioning before my cerebral folate deficiency was discovered.What most people do not realize is that in someone with mitochondrial disease and autism,any fever will cause a regression,be it vaccine induced or from a wild disease.Which is why we need to be protected by herd immunity.What's more,autistic regression in mitochondrial disease is a lifelong thing.It starts as a baby or a toddler,but it does not end there.It happens over and over again for the rest of your life,any time there is a fever,as it did with me.

The brain,as in autism,is but one of many organs or systems to be effected by mitochondrial disease.After I started treating my CFD.and began to have severe illnesses,I found my brain was being protected by what I was taking for the CFD.I was no longer having regressions.I was starting to have profound muscle wasting,and serious problems involving other organs instead.

Hannah's father is a pediatrician,her mother is an RN,You would have thought they could have understood all this.I don't think I will ever get it.Unless they wanted to cause a media circus,and make their daughter an antivax icon.

OK.Back to your regularly scheduled thread.

By Roger Kulp (not verified) on 19 Jun 2015 #permalink

Roger, which article on Medpage Today?

By Science Mom (not verified) on 19 Jun 2015 #permalink

Orac touches on this briefly, but what really gets me about the MDs, NDs, etc., that espouse these sCAM ideas is the double-standard of enforceability (or lack thereof) that they expect should protect them, all in the name of "medical freedom". Huh? How is it that a practicioner (especially in states where the non-MD types are licensed by the state) who goes way off the reservation and recommends beeswax to treat foot cancer gets a pass from all complications and failure to maintain the standard of care, while if I treat a patient and s/he has a bad outcome that is a known complication of surgery, for example, (even though I followed the best evidence/guidelines to a T), I could lose my shirt in court?? Do these people ever get sued, or is the rule that the more outrageous your recommendations are, the more protection you get under the blanket of medical freedom? I find this baffling and upsetting--a whole subset of "practitioners" that are not held accountable in any way.

By Dr. Chim Richalds (not verified) on 19 Jun 2015 #permalink

@#6 Dirt Girl
"A recent study demonstrated that the popular children’s show Doc McStuffins is in fact more evidence based than Dr. Oz."
This is the best line in the whole post. Awesome.

By Dr. Chim Richalds (not verified) on 19 Jun 2015 #permalink

Shay - I mix the echinacea with black eyed Susan's and gay feather (no idea how it got that name). It makes a lovely mix--lots of color. The only flower in my garden that I consume is nasturtium--and chamomile (for tea). I've got chamomile all over the place. It's quite invasive, but very pretty, and blooms for ages. Smells great too!

I eat lots of herbs too, but for flavor, nothing medicinal--unless a hot bath with rosemary and a great meal would be "medicinal".

I have an apple tree as well--and I'm going to SPRAY IT WITH PESTICIDE because last year all my apples were full of little holes from (according to my son) Japanese beetles.

Sorry I'm rambling--it must be the toxins

By darwinslapdog (not verified) on 19 Jun 2015 #permalink

RK: Unless they wanted to cause a media circus,and make their daughter an antivax icon.

I always thought that was exactly what they wanted, which made Mrs. Poling's reaction to certain people at Age of Autism very puzzling. It's possible they didn't realize that making people distrustful of health care workers would come back to bite them in the wallet, or maybe they just wanted to keep Hannah out of the limelight.

By Politicalguineapig (not verified) on 19 Jun 2015 #permalink

But what of the brave, maverick doctors? Will they be shunned for providing wheat grass colonics to treat migraines; providing medical exemptions for vaccines because they will cause children to become EMF sensitive, testing one's stool for the effects of past life trauma, or using auras detected by an associate reiki master for diagnosing cancer of the id? (Hmm . . . maybe I should try to patent a couple of these and . . . no, that would be horribly unethical. I will just continue selling my investment schemes for the diamond mine in Florida and the bridge to Bermuda. Better to stay honest and have less risk of actual harm to others.)

(I was going to post about "cue the fanatics" or the always popular Monty Python "Help, I'm being repressed!" clip, but see that reality beat me to it.)

But the AAP bears responsibility for making Gordon a FAAP

With Jeff Bradstreet making much of his FAAP status, not to forget Yazbak, I am not gaining an impression of high standards.

By herr doktor bimler (not verified) on 19 Jun 2015 #permalink

@ Narad #20

Thanks for the update - I'm looking forward to seeing Orac's take on this clinical trial. In the meantime, I can't resist pointing out the main thing that jumped out at me: all of the patients had already undergone surgery and radiation, and most of them (59%) had had chemotherapy as well. According to Burzynski's own references, the standard chemo treatment (TMZ) has a 20% response rate and 24% 12 month progression-free survival. According to him, ANPs have a 18% response rate and 26% 12 month progression-free survival. He tries to put a positive spin on it, but it looks to my inexpert eye like ANPs didn't improve outcome over what you'd expect in a group of patients who had already received conventional treatment.

But the icing on the cake was the disclosure statement: "The authors have no conflicts of interest to disclose." Are you freaking kidding me?!

#19 I don't have a probem with people in the Poling's predicament getting lifetime support but what ices me is the way the antivaxxers use the vaxcourt payouts as a talking point as if those payouts prove disastrous side effects from vaccines It is really just a political palliative and a form of welfare in many cases unrelated to actual vaccine "injury". i HOPE THAT THE cAma GENERATES SOME HEADLINES DAMAGING THE QUACKDOM SUCH THAT bROWN SIGNS OF ON sb 277.

I hope that the Ca.MA generates some headlines damaging the quackdom such that Gov Brown signs off on SB 277 (grumbling about cap locks time for a new laptop)

@Roger Kulp #19

I just finished promising Narad I'd stick to science and leave the legal stuff alone, but WTH, I'll take a whack at it. The vaccine court was set up to make it as easy as possible for legitimate vaccine injuries to be compensated, so anyone who has a "table injury" within the appropriate time frame post-vaccination is more-or-less automatically compensated. I imagine that they don't exclude pre-existing conditions because this would place an undue burden of proof on the claimants: they'd essentially have to prove that they wouldn't have suffered the injury if they hadn't been vaccinated, instead of proving that they did suffer the injury because they did get vaccinated. Obviously I'm not privy to the Polings' motivations, but I don't see any particular reason to think that they anticipated their case being co-opted by the antivaccine movement - what reasonable person would expect that being compensated for encephalitis, a recognized table injury, would be used as proof that vaccines cause autism? It's easy to forget that most people outside of the autism and skeptical communities know little to nothing about the antivaccine movement.

Narad @20:
And Stanislaw and Gregory Burzynski are both still members of the AMA.
Speaking of which.

A journal published by "Canadian Center for Science and Education"? Now there is a name to conjure with. It is "Canadian" in that the Chinese business journalist who heads it now lives in Toronto. Best-known, perhaps, for threatening to sue Jeffrey Beall for libel, for listing CCSE as predatory.

By herr doktor bimler (not verified) on 19 Jun 2015 #permalink

Truth is an affirmative defense to defamation.

#31 I imagine that they don’t exclude pre-existing conditions because this would place an undue burden of proof on the claimants

IMHO, dubious. Existence or non-existence therof is a point of fact which has nothing really to do with the lowered burden of proof. Probably what matters if whether it is more likely than not that the vaccine EXACERBATED the PEC proximately causing damage to plaintiff.

Roger Kulp: what reasonable person would expect that being compensated for encephalitis, a recognized table injury, would be used as proof that vaccines cause autism? It’s easy to forget that most people outside of the autism and skeptical communities know little to nothing about the antivaccine movement.

Well, first of all, they worked in the health industry, so they had to have some idea of the anti-vax movement. Secondly, anyone who knows anything of anti-vaxxers knows they aren't reasonable people.

By Politicalguineapig (not verified) on 19 Jun 2015 #permalink

This has to be the funniest thread I have ever read on this sad log. So from now on ‘proper doctors’ are not going to be able to practice.
Flu is not caused by vaccine deficiency, claims for efficacy at last will be resigned to the dustbin.
Arthritis will no longer be deficiency in painkillers, anti metabolites, immune suppressants nor tumor necrotising factor inhibitors
Eczema will no longer be steroid deficiency
Autism will no longer be random bad luck

What the hell are you guys gonna do? I can see an orgy of tissue thrashing led by lord Nobred Narad, all staring up at a picture of the now canonized our Lilady, murmuring some PUmed Pubmed hara hari Pubmed EBM type mantra.

Can’t wait to refer a GP to the governing body for malpractice against nature. LOL

So Lord O is running scared, yet again. His little thready weaddy is getting all posted on with nasty comments, pointing out the gaping holes in this latest wash of hog.

This has to be the funniest thread I have ever read on this sad log. So from now on ‘proper doctors’ are not going to be able to practice.
Flu is not caused by vaccine deficiency, claims for efficacy at last will be resigned to the dustbin.
Arthritis will no longer be deficiency in painkillers, anti metabolites, immune suppressants nor tumor necrotising factor inhibitors
Eczema will no longer be steroid deficiency
Autism will no longer be random bad luck

What the hell are you guys gonna do? I can see an orgy of tissue thrashing led by lord Nobred Narad, all staring up at a picture of the now canonized our Lilady, murmuring some PUmed Pubmed hara hari Pubmed EBM type mantra.

Can’t wait to refer a GP to the governing body for malpractice against nature. LOL

Common you bunch of complete cowards, allow the dissing post and get on with something usefull.

Has NobRed been complaining?

We don't want people laughing at you do we, all serious on your sciencey blog. That would be disrespectful and we just can't have any of that, can we?

@PGP

Actually, I'm the one who said that, in response to Roger Kulp. I worked in healthcare (as a nursing assistant) for several years, and I'm currently in graduate school studying immunology, and I can tell you that none of my coworkers or classmates knew much about the antivaccine movement beyond the simple fact that it exists, at least until the Disneyland measles epidemic brought them back into the news.

It's nice to see some good news on RI, however tentative. In that spirit, I take Sarah A's comments about healthcare workers having low awareness of the anti-vax movement as a sign of how marginal the 'true believers' truly are and have always been.

Yes, we can say the hard-core anti-vaxers are not 'reasonable' people by any commonplace meaning of the term. But we would not have had the pockets of drastically low immunization rates, and the Disneyland outbreak, unless worries about vaccines had diffused widely through certain populations of parents, the vast majority of whom are NOT cult-ish nut-jobs, but more or less 'reasonable' in everyday terms. As I've noted here ad infinitum, it doesn't take getting people to hold any kind of ideological commitment to get them to NOT to do something. People will withhold action on the basis of very vague feelings of ill ease. (Yes, there's research on this, though i don't have a cite at hand...) Do we have any reliable research on exactly how much the average parent who sought a PBE in CA knew of or agreed with the details of the anti-vax CTs at AoA, TMR, etc.? My guess is 'not much'. What percentage of non-vaxers could identify Thimerisol or Wlliam Thompson, or even Andrew Wakefield?

The Internet is absurdly shallow. Read any Web item on anything you know a lot about, and you'll find A) the coverage barely scratches the surface, and is more often than not misleading, and B) the comment sections are filled with people pontificating about it as if they know what they're talking about. (This is in my mind especially regarding this totally OT for RI item... http://tinyurl.com/pbzeun5. Gibbons is a friend of a friend, and this tale is way more complex than any of the commentary imagines...) And then there's 'social media'... Propaganda scholars used to speak of a 'tainted wind' stirring the 'herd' — which speaks to the fact that most people are so caught up in the minutiae of their everyday lives their perceptions of the larger world outside are more 'instinctual', tuned to whiffs of possible danger. You skim (x) many Tweets, Facebook posts and forwarded emails with warnings that vaccines can harm your kid — probably not very detailed in terms of 'how' and inconsistent on that count to whatever small degree it's present — and you come away only with the impression that a hella lot of people are hella concerned about vaccines. And if that jibes with any of a number of different confirmation biases you might have, your guard goes up without thinking too much about it: Maybe there's something to this! I don't want to take a chance with my kid! Nobody gets measles anymore anyway! Better safe than sorry...

As long as this mental process stays in the background, it can proliferate. Pull it all up to the front of consciousness, really look into it past the reflex phase, and it's a very different story. Too often comments here imagine the psychology/sociology of not-vaxing can be read off of 'movement' sites like AoA, TMR etc. I would suggest the opposite is the case. The hard-core anti-vaxers ARE off in cloud-cuckoo-land, and the more the sort of typical not-vaxing parents of the mass large enough to threaten herd immunity would know about those clowns, the less they'd want to have anything to do with them.

Time will tell, but it looks like opposition to SB277 is down to the fringey-fringe, and getting more publicity as such. If I'm right, the terrain on which wide-spread not-vaxing behavior is formed is shifting dramatically as a result, and vax rates should start climbing up.

Ben Mazer's AMA resolution rather brilliantly pulls Oz into the post-Disneyland political landscape by tying him to Sears and Gordon. Methinks the AMA might still be ultra-cautious, and this resolution would not have been approved were SB277 not playing out as it is, evidencing a shifting of winds. To get some smack-down of Oz and the supplement slingers on the coat-tails of that is quite deft, but also suggests the impending 'death of anti-vax' in the political sphere might have wider implications. Yeah, if only state medical boards would grow some balls... Now would seem to be the time, eh?

If we take medical pseudo-science to be a form of spiritualism — faith-healing by other names — we might conclude that it will never go away, but that doesn't mean it's public health dangers need be constant. There will likely always be some sort of devastating afflictions for which the diagnoses, prognoses and prescriptions of medical science do not satisfy. It's hard to imagine the market for cancer quacks disappearing. But we could consider Oz-brand woo faith-healing for people who aren't really sick. Which means it's just faith — chalk it up to homo sapiens sapiens being generally hard-wired to engage in some form of spirituality at a point in history where traditional Western religions are facing multiple legitimation crises, shedding followers like mad, and remaining adherents moving deeper into fundamentalism. Now, while New-Age spirituality is obviously open to all sorts of scams, none of them are necessary to it. A lot of commenters here seem to know folks who are some-what woo-ey about some things, but perfectly 'reasonable' about others. Think, for a moment, of how many (non-medical) things such folks could possibly be woo-ey about, but aren't. Perhaps, if the advocates of 'real medicine' play their cards right, many of the current connections between spirituality and health can be severed, and the spiritual impulse be re-directed into less harmful activities... ???

Testimony of Betty D. Fluck for U.S. House of Representatives Committee on Government Reform Subcommittee on Criminal Justice, Drug Policy, & Human Resources. John L. Mica. Chairman

Effectiveness of Hepatitis B Vaccine

May 18, 1999
"In Indiana, a doctor from the Department of Health told the Senate Committee that one of the arguments for the vaccine was that it was the "first anti-cancer vaccine." Fortunately, we were able to show that the "anti-cancer vaccine" theme was taken from the PATH website. PATH is an organization within the World Health Organization. PATH suggested that the "first anti-cancer vaccine" theme was a good marketing tool to bring about interest in a "boutique" vaccine.

I have minutes from a CDC Study Group Meeting on the Hepatitis B vaccine held in March, 1997. The minutes of the meeting show that it would take at least a 60 day study to show the onset of MS. Clinical studies done by the two manufacturers were four and five days in length, respectively. It should be noted that the afternoon session of this meeting was chaired by Dr. Robert Sharrar of Merck. This group was to decide how to identify various types of adverse reactions such as MS and demylenating disease and to plan meaningful studies. When Dr. Sharrar appeared on ABC's 20/20 in January he said that he honestly believed that the Hepatitis B vaccine had not caused any problems. Can an employee of a pharmaceutical company that manufactures the vaccine be objective in designing experiments to show fault in a product that generates close to a billion dollars in sales for his company?"
http://www.whale.to/vaccines/fluck.html

By Toto "the Rock" (not verified) on 20 Jun 2015 #permalink

I just finished promising Narad I’d stick to science and leave the legal stuff alone

Wait, what? Just because I can manage to point out an error every once in a while, it doesn't mean that I've cornered the market or something. I'm as likely to be full of crap as the next Internet not-lawyer.

Mind you, I'm about to hoke it up because I eventually really had to resort to footnotes to maintain some semblance of readability. This of course reveals that I'm actually flying by the seat of my pants.

but WTH, I’ll take a whack at it. The vaccine court was set up to make it as easy as possible for legitimate vaccine injuries to be compensated, so anyone who has a “table injury” within the appropriate time frame post-vaccination is more-or-less automatically compensated.

Right, so long as one makes a prima facie showing and HHS does not then demonstrate, by a preponderance of countervailing evidence, a nonvaccine cause.

Injuries – Table or not – specifically include significant aggravation of preexisting conditions.[1] One would have to look to the legislative history to see whether there was ever any consideration of not including them. Note also that sequelae of a significant aggravation do not enjoy Table presumption even if it exists for the specific event.[2]

Keep in mind that the Poling case was conceded by HHS,[3] so what follows has no real bearing on it.

I imagine that they don’t exclude pre-existing conditions because this would place an undue burden of proof on the claimants: they’d essentially have to prove that they wouldn’t have suffered the injury if they hadn’t been vaccinated, instead of proving that they did suffer the injury because they did get vaccinated.

Nowadays.

This is where it gets complicated. One result of the Whitecotton cases was that the four-prong Misasi approach (which did indeed place the burden on petitioners to show that the postvaccine condition satisfied a but-for test) was tossed.[4]

What one has now is a six-prong test for significant aggravation of a preexisting condition, demonstrating

"(1) the person's condition prior to administration of the vaccine, (2) the person's current condition (or the condition following the vaccination if that is also pertinent), (3) whether the person's current condition constitutes a 'significant aggravation' of the person's condition prior to vaccination, (4) a medical theory causally connecting such a significant worsened condition to the vaccination, (5) a logical sequence of cause and effect showing that the vaccination was the reason for the significant aggravation, and (6) a showing of a proximate temporal relationship between the vaccination and the significant aggravation."[5]

OK, so this leaves the question whether a hypothetical Poling significant-aggravation case would have been on-Table, assuming current law because I'm too lazy to go back and sort out the dates.

The first thing to observe is that "mitochondrial disorder," which is what the concession was for, is not a Table injury, so that's pretty much ruled out.[6]

So that leaves encephalopathy as the hypothetical preexisting condition. This would utterly toast any antivaccine claim of vaccine-induced brain injury, but it also returns the but-for into compensation, as far as I can tell at this point. Returning to Gruber – again, about preexisting encephalopathy – the total award (aside from attorney fees) appears[7] to have been just over $715,000.

That's a long way from the reported Poling damages. GR hosts a redacted copy, but its legality would require chasing down the outcome of the (I think) separate Poling case linked to in footnote 3 below.

[1] 42 U.S.C. § 300aa-11(c)(1)(C).

[2] Probably. See Gruber v. Sec’y of Dep’t of Health & Human Servs., No. 95-34V, slip op. at 17–18 (Fed. Cl. Jul. 28, 2004), h[]tp://www.uscfc.uscourts.gov/sites/default/files/opinions/BRUGGINK.Gruber2.pdf.

[3] See, e.g., Poling v. Sec’y of Dep’t of Health & Human Servs., No. 02-1466V, slip op. at 3 (Fed. Cl. Spec. Mstr. Apr. 10, 2008), h[]tp://www.uscfc.uscourts.gov/sites/default/files/opinions/CAMPBELL-SMITH.POLI… (the "facts of this case meet the statutory criteria for demonstrating that the vaccination Hannah received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism and manifested as a regressive encephalopathy with features of autism spectrum disorder.")

[4] For a review, see Gruber, supra n.2, at 12–15.

[5] Loving v. Sec’y of Dep’t of Health & Human Servs., 86 Fed. Cl. 135, 144 (2009).

[6] See Shalala v. Whitecotton, 514 U.S. 268, 270 (1995), available at h[]tps://www.law.cornell.edu/supct/html/94-372.ZO.html ("A claimant who meets certain other conditions not relevant here makes out a prima facie case by showing that she (or someone for whom she brings a claim) 'sustained, or had significantly aggravated, any illness, disability, injury, or condition set forth in the Vaccine Injury Table . . . .") (emphasis added).

[7] Cursory docket at h[]tp://www.plainsite.org/dockets/7ptbzbrk/united-states-court-of-federal-claim…

^ And, I'm out of PACERbuxx! for this quarter to check. The fact that the very case number is redacted from the GR item suggests to me that its original provenance is sketchy.

Wait - you're not a lawyer? You look up all this legal stuff for fun?! Holy crap O_o

SarahA: I can tell you that none of my coworkers or classmates knew much about the antivaccine movement beyond the simple fact that it exists, at least until the Disneyland measles epidemic brought them back into the news.

Well, no wonder no one vaccinates any more, if the new health care workers aren't trained to know their enemies and counter all the talking points. I still think the Polings should have done some research before doing the equivalent of strapping red meat to their child. And if they weren't anti-vax, why did they go to court?

By Politicalguineapig (not verified) on 21 Jun 2015 #permalink

And if they weren’t anti-vax, why did they go to court?

Being anti-vaxx is a pre-requisite for seeking compensation for a vaccine injury?

By Science Mom (not verified) on 21 Jun 2015 #permalink

You look up all this legal stuff for fun?!

I wouldn't say it was fun, but I realized that I didn't really know how preexisting conditions were handled within the VICP, and there didn't seem to be any convenient modern summaries lying around. (This strikes me as odd, given that Whitecotton was the only NCVIA case to make it to the Supreme Court until Bruesewitz.)

But, yah, it turns out to have gotten much easier for claimants over time (although not as easy as Chief Special Master Golkiewicz would have made it).

Science Mom: Being anti-vaxx is a pre-requisite for seeking compensation for a vaccine injury?

Well, yes, since 99% of those injuries are fictional. I do think Hannah's injuries were real, but I think the parents should have found another venue or insisted on a press blackout.

By Politicalguineapig (not verified) on 21 Jun 2015 #permalink

no wonder no one vaccinates any more
Citation needed.

Well, yes, since 99% of those injuries are fictional. I do think Hannah’s injuries were real, but I think the parents should have found another venue or insisted on a press blackout.

Once again a broad brush-stroke which has no basis in reality. And what other venue should the Poling's have pursued to seek compensation for their daughter's vaccine injury? Just because they made the very bad decision to crawl into bed with the AoA/TMR types doesn't mean they weren't entitled to use the available scheme for redress.

By Science Mom (not verified) on 21 Jun 2015 #permalink

ScienceMom: And what other venue should the Poling’s have pursued to seek compensation for their daughter’s vaccine injury? Just because they made the very bad decision to crawl into bed with the AoA/TMR types doesn’t mean they weren’t entitled to use the available scheme for redress.

First of all, they could have insisted on a press blackout, keeping Hannah's name out of it. Or they could have sued the doctor, not the manufacturer.
The main issue I have with the Polings is that they're trying to pretend they aren't part of the Age of Autism crowd. They should own what they did.

By Politicalguineapig (not verified) on 21 Jun 2015 #permalink

The journal Burzynski's study is released on requires $300 from the author for publication. Is this truly peer review? Are medical journals becoming pay to play?

I am asking the latter, because often journal quality is mentioned unless it is top-tier. I don't know which journals qualify, and thought they weren't requiring payment by author in the better ones.

Why on earth would they sue the doctor?

Shay: To get money, and not sabotage immunizations for ever.

By Politicalguineapig (not verified) on 21 Jun 2015 #permalink

Or they could have sued the doctor, not the manufacturer.

Precisely how dedicated are you to abject cluelessness?

PGP @ 25, 46, 49, 52
The Polings filed their NVICP case in 2002. ( http://www.neurodiversity.com/court/poling_docket.html)
Please do tell what advice you personally would have given the Polings back in 2002 about handling future media attention about their daughter’s case.

How about 2008, when they were compensated? What words of wisdom would you, Politcalguineapig, have given them then? You’ve already contributed several nonsensical suggestions (#52). Exactly how would you, in 2008 have advised the Polings? Get off the armchair, and take off the retrospectacles.

PGP @ 49

Well, no wonder no one vaccinates any more

I assume this comment is based on your discussions with the large numbers of both new parents and parents of young children with whom you socialize at length on a nearly daily basis.

Please correct me if I'm wrong.

Precisely how dedicated are you to abject cluelessness?

Quite so apparently.

By Science Mom (not verified) on 21 Jun 2015 #permalink

The journal Burzynski’s study is released on requires $300 from the author for publication. Is this truly peer review? Are medical journals becoming pay to play?

There are decent journals with rigorous editing and review, following the author-pays model instead of the library-pays model. In theory the effect is just to shift the costs from one section of academia to another.
In practice, though, there are too many academics around the world desperately needing to churn out publications in the hope of getting promotion or just keeping their phoney-baloney jobs. So a new niche has been created -- bottom-feeding mockademic journals that take your money and provide you with a facsimile of a real publication.

And the publisher which the Burzynskis chose for their steaming pile is one of these journal-shaped jizzmops. Suffice to say that the publisher has been mentioned repeatedly at the "Retraction Watch" blog, for happily publishing plagiarised fabrications.

By herr doktor bimler (not verified) on 21 Jun 2015 #permalink

^ Oh, it turns out that it was Kirby who publicized the leaked Poling documents. Whether it was (one or both of) the Polings or just good ol' Clifford Shoemaker himself is, it seems, not known. The Polings' statement at the time, however, was this:

A third party subsequently leaked, without our knowledge or permission, my daughter’s identity and the government’s concession report to the media.

Kev Leitch (I think) cast a more skeptical eye at this a this story over here. One might even recall that, yes, Gerg accused Mrs. Poling* of being a race traitor for not coughing up even more as a result of her basically telling AoA to screw off.

* I see that I also mentioned the Poling decision there, at comments 587 and (sort of) 591.

^^ "at this a this story"

Thank you.Herr DDoktor Bimler.

The second thing that leaped out at me (right after all patients had received standard of care treatment before enrolling) was that

1) All patients had received radiation therapy

and

2) the readout for efficacy was change in tumor volume as determined by MRI scan and other imaging methods

Can you say "pseudoprogression", boys and girls? I'll bet you can...

Chemmomo: First of all, I would have advised the Polings not to assume that the court's data was secure. Secondly, I would have advised them to own their anti-vax stance. Finally, I assume that most parents in my community are anti-vax, since I live in a rather hippy-dippy area.

By Politicalguineapig (not verified) on 22 Jun 2015 #permalink

I think Miss Gulch really ought to have shut that basket far more securely.

By Richard Smith (not verified) on 22 Jun 2015 #permalink

I take Sarah A’s comments about healthcare workers having low awareness of the anti-vax movement as a sign of how marginal the ‘true believers’ truly are and have always been.

And I take it as representative why people answer 'no' to 'smoking pot' and 'still lusting after Mousekateer Mindy Feldman' when applying for a job at Disneyland.

@chim roberts way back in #23

@#6 Dirt Girl
“A recent study demonstrated that the popular children’s show Doc McStuffins is in fact more evidence based than Dr. Oz.”
This is the best line in the whole post. Awesome.

Actually, if you go read the post about that, it is even better. My favorite was

"When asked what factual statements Dr. Oz has made on his show, Dr. Foster paused to think. “The only examples I can recall are ‘My name is Dr. Oz,’ and ‘That’s all the time we have for today.’ Those seemed to be supported by facts.”"

They "seemed" to be supported the facts, although "That's all the time we have for today" could be questionable...

By Marry Me, Mindy (not verified) on 23 Jun 2015 #permalink