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Chatting with Seth Mnookin

18 Jan

I don’t want to call what follows an interview as:

a) I’m not that grand
b) It was more friendly than that

So what follows was a meandering email chat Seth and I had about the release of The Panic Virus (Amazon UK, US and CA) and the content in it.

KL: You mention in the book that one reason for writing it was that as a new dad you were keen to explore the issue of vaccination in relation to autism. Do you feel that you’ve come away from the writing process with a greater personal (as a dad) idea(s) of what the vax/anti-vax opposing beliefs are?

SM: Actually, I started the book before I was a father…and before my wife was pregnant. I think it was one of the reasons I was so curious about the topic: I hadn’t experienced the debate on a personal level and so I found it hard to understand how different people I respected could disagree so strongly about the facts.

I’m not sure whether this is a result of the writing/research process or of my becoming a dad, but I feel like I have an understanding of where both sides are coming from–and why they get so frustrated. I can’t pretend to know what my reaction would be if I believed that vaccines had harmed my child.

KL: Do you feel you share the sense of frustration that ‘pro-vaccine’ people have now the book is completed?

SM: That’s a hard question to answer. Overall the situation is extremely frustrating. I feel frustration that the issue has been so poorly covered by the media, and I think our handling of the story has as much as (or more than) anything else to do with where we’ve ended up. I’m also frustrated by the handful of self-anointed experts, like Bob Sears, who give the impression that heeding their (or parents’/patients’) instincts are the proper way to go about dealing with medical decisions.

But I think one of the things that makes this such an intractable issue is that there are not a lot of opportunities for people on opposing sides to sit down and have an actual, human-to-human conversation — at this point emotions are so pitched and the stakes are so high (or feel so high) that a sort of bunker mentality has set in. I was lucky: I cam to this without a horse in the race, as it were, so I was able to have what I think were open and honest conversations with people that I know disagree strenuously with the conclusions I ultimately arrived at.

KL: Thats an interesting thought. At what point in writing the book did you think ‘I know I’ve reached my own conclusions’?

SM: I don’t think there was one point at which I felt like I’d made up my mind about the issues that came up because it didn’t feel to me that there was any one single issue. It’s part of what I found interesting and bewildering about this whole thing. I went to an AutismOne conference in Chicago, and after watching a presentation by Mark and David Geier, I knew I had some real concerns about their approach to treatment. There were some other presentations I saw that I knew from the outset were just factually incorrect, and there were claims about government conspiracies to poison children that I found to be…well, I guess unconvincing is a good word to use.

But I certainly didn’t feel like I knew enough at that point to say whether some of the other treatments that came up had validity, and I didn’t feel like I could say with any confidence whether some of the theories regarding causality had any grounding in fact. There’s a lot of very complicated science involved, so when David Kirby stood in front of an auditorium and talked about mitochondrial disease and genetic susceptibility, I hadn’t done enough research at that time to know whether what he was saying made sense or not.

I did find the all-or-nothing quality to the debate to be disturbing. At AutismOne, it was made very clear to me that I’d be judged in absolutes: If I expressed skepticism about the Geiers, the assumption was that I didn’t think anything else that was being discussed at the conference had any type of validity.

I was open about this when I spoke with people. If I was interviewing someone and the Geiers came up — and I don’t mean to pick on them, but they’re a good example of this because they’re such prominent figures — I’d say that I found their approach to science unconvincing.

I think that there is, among some people at least, a feeling that it’d be better for everyone involved if that with-me-or-against-me attitude wasn’t quite so prevalent. I spoke with Jane Johnson about Andrew Wakefield’s departure from Thoughtful House after the GMC decision was released early last year. I really like Jane — she’s smart and thoughtful and very generous with her time and every time I spoke with her she made me think about things in new ways. And when I asked her why Wakefield had left she didn’t say that it had anything to do with the contents of the GMC ruling, which I really respected: There was not really any new information in the report. Instead, she said that he had become too much of a lightening rod and that Thoughtful House wanted to do more work with Texas medical authorities. I don’t want to misquote her, and these aren’t her words, but she essentially went on to say, This doesn’t all need to be about vaccines. There’s lots of other work to be done here that has nothing to do with vaccines. That’s an attitude I wish more people had.

KL: I know you didn’t set out to write a book about *autism* as such but it seems to attract authors – do you think you’ll always maintain a passing interest in the autism/vaccine issue now?

SM: I think I’ll maintain more than a passing interest in the issue. It’s hard to learn about it – and certainly hard to write about it – without become passionately involved in it, so it’s hard to imagine my not continuing to have some connection to a lot of these issues moving forward.

Salon retracts RFK Jr. article

16 Jan

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

Well done Salon.

Salon retracts Robert Kennedy’s “Deadly Immunity”

16 Jan

One of the worst pieces written claiming that mercury caused an autism epidemic was the piece “Deadly Immunity” by Robert Kennedy Jr. Salon.com and Rolling Stone co-published the piece. It was immediately met with criticism and corrections: multiple correction pieces were published.

Salon has decided to review the piece and decided that corrections were not enough. They’ve pulled the piece from their site. Here’s the statement.

Correcting our record
We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

The Panic Virus

13 Jan

Seth Mnookin’s book, the Panic Virus, debuted this week. Mr. Mnookin took a look at the vaccine scares and started a two year project of in-depth research resulting in this book. Not too surprisingly, much of his work relates to the autism-parent groups who promote the ideas of an autism epidemic caused by vaccines. Andrew Wakefield and the MMR scare also play a role.

The book is very well written. I believe I have spent more time than most on the subject and I still found a lot of new and interesting information in this book. Mr. Mnookin had great access. He interviewed David Kirby and Lyn Redwood, including a discussion of how the book Evidence of Harm came into being. He spoke repeatedly with Andrew Wakefield. He attended AutismOne. This is not a “Google Ph.D.” research effort. He got down into the trenches and he brings new information to light.

In many ways, the book is a discussion of how people come to believe and promote ideas that are false. Unfortunately for us, vaccine-rejectionists and parts of the autism communities present the best example of this behavior in modern history.

Mr. Mnookin brings an outsider’s eye to the story and comes down clear and decisive that there really is no debate on these issues, no real controversy. The science is in and it is clear.

He also takes journalists to task for being uncritical of the stories presented to them. There is likely no better example of this than how the press treated Andrew Wakefield and his studies, starting with the 1998 Lancet article. Even now we still see a lot of “he said/she said” type reporting on Mr. Wakefield which gives a false impression that the evidence and support for both sides is somewhat equal. Unfortunately, things are getting worse rather than better with time as media outlets downsize and science writers are let go.

This is from the press release:

Seth Mnookin—the New York Times-bestselling author of Feeding the Monster and Hard News (a Washington Post Book World “Best of 2004” selection)—delivers a real-life detective story that exposes what may well be the biggest health scare hoax of all time in THE PANIC VIRUS: A True Story of Medicine, Science, and Fear (Simon & Schuster; January 11, 2011; $26.99). Mnookin, a contributing editor at Vanity Fair with a Harvard degree in the history of science, looks at the bogus vaccine panics—which started with a single, now totally discredited paper linking the measles, mumps, and rubella (MMR) vaccine with autism—that have cost tens of millions of dollars and resulted in the deaths of an untold number of infants and children around the world.

Mnookin explains how dishonest researchers and snake-oil salesmen have taken advantage of desperate parents by perpetrating a fraud, and how the media—by ignoring facts and pretending that all points of view are equally valid—has through its irresponsible coverage fueled a controversy that never should have arisen in the first place. He explores how cultural relativism and insular online communities have blurred the distinction between facts and feelings to the point that the traditional American ethos of individualism has been transformed into one in which individualized notions of reality, no matter how bizarre or irrational, are repeatedly validated. In addition, he gives readers fresh and fascinating insights into the scientific process, the nature of knowledge, and the subconscious forces that drive much of our daily lives.

Why are we so willing to believe things that are false?

Mnookin’s interest in the anti-vaccine movement began in 2008, as a newly married man looking forward to having children, after a series of conversations with parents of young children regarding their anxiety about vaccines and autism. Much to his surprise, a significant number of this group of well educated professionals in New York City had decided to deviate from the recommended vaccination schedule for their children, despite the fact that there is overwhelming scientific consensus supporting vaccination on one side and quack doctors, New Age healers, and celebrities like Jenny McCarthy on the other. The subject took on even greater significance for Mnookin with the birth of his son in 2009.

After he began researching the issue and arrived at the conclusion that there was no evidence supporting a link between childhood inoculations and developmental disorders, Mnookin realized that this pseudo-controversy raised a series of broader questions that go to the heart of social dynamics and human cognition: Why, despite all the evidence to the contrary, do so many people remain adamant in their belief that vaccines are responsible for harming hundreds of thousands of otherwise healthy children? Why is the media so inclined to air their views? Why are so many others so readily convinced? Why are we so willing to believe things that are, according to all available evidence, false?

In an effort to answer those questions, Mnookin interviewed scientists and doctors, healers and mystics, government appointees and elected officials. He also spoke with dozens of parents who watched helplessly as their children withdrew behind a wall of autism. “The suffering of parents who feel unable to protect their children is almost impossible to describe – and helplessness only begins to cover the range of emotions they endured,” Mnookin writes. There was also guilt, resentment, bitterness, isolation, and anger: Surely someone or something was to blame for the ways in which their lives had been upended.

Every year, some two thousand parents of autistic children travel to Chicago for the annual conference of AutismOne, which claims to be the single largest producer of information about the disease in the world. What is paramount for these parents, as Mnookin discovered when he attended, is the sense of support and fellowship they receive. Nevertheless, the organization is relentlessly and virulently antivaccine, with one presenter claiming that vaccines are a “de facto selection of the genetically vulnerable for sacrifice” and calling doctors who administer vaccines the moral equivalent of “the doctors tried at Nuremberg.”

Mnookin writes: “If you assume, as I had, that human beings are fundamentally logical creatures, this obsessive preoccupation with a theory that has for all intents and purposes been disproved is hard to fathom. But when it comes to decisions around emotionally charged topics, logic often takes a back seat to what are called cognitive biases – essentially a set of unconscious mechanisms that convince us that it is our feelings about a situation and not the facts that represent the truth.” These same mechanisms – and the same rejection of the scientific method and the principles of deductive reasoning that have been the foundation of rational society and medical progress since the Enlightenment – are dangerously at work in the so-called debates about evolution and climate change, he suggests.

Brimming with vivid personalities, engaging anecdotes, authoritative science, historical sweep, and plain-English explanations, THE PANIC VIRUS is one of those rare books that entertains at the same time that it illuminates the mysteries of medicine and addresses a subject of vitally important concern to millions of parents, with life-and-death repercussions for everyone else on the planet.

Book Sales: The Age of Autism and Callous Disregard

15 Dec

I tapped my source one last time for book sales figures for “The Age of Autism” and “Callous Disregard”. The Age of Autism was written by Mark Blaxill (board member of SafeMinds and one of the three principle editors of the blog, Age of Autism) and Dan Olmsted (former UPI editor, principle editor and, from what I can tell, owner of the Age of Autism blog). Callous Disregard is Andrew Wakefield’s account of the events which landed him before the General Medical Council and resulted in him being removed from the UK medical register.

Total book sales to date:

Age of Autism: 2301
Callous Disregard: 2925

Last week five copies of Callous Disregard were sold.

Last week The Age of Autism sold 130 copies–38 in Minneapolis St. Paul and 35 in Norfolk, Virginia. This appears to coincide with book signing events in those locations. The week before that, The Age of Autism sold 57 copies.

These figures must be disappointing. If not to the authors, to the publishers.

I may post an update with this week’s book sales. Either way, there isn’t much reason to continue the discussion of these books. When they are available in the remainder book outlets (with this few sales, there won’t be a lot of used copies and little chance for paperback editions) I will likely obtain copies of each. I’ve already read them, but they are interesting from a historical perspective. It will be a good exercise to see how these books read ten years from now. If history is kind to these authors, it will be by neglecting them.

Don’t Take the Risk: Get the Facts on SafeMinds

1 Dec

No matter what your position is on SafeMinds, I bet you found that title somewhat overly sensational. You may have thought that there was a not-so-hidden message in it. I’d love to know what your initial reaction was. Think it over before going on.

Here is one of the banner icons from the SafeMinds website. “Don’t Take The Risk” (big letters) above “Get the Facts on the Flu Vaccine” (smaller letters, below). What message does this send?

So, once again I’ll ask you to think about your initial reaction to the title of this blog post. If you found it sensational, if you found it leading, what do you think about the SafeMinds banner?

That banner is from the site you go to if you follow their advice to get more information at “safemindsflu.org”. You may recall that SafeMinds was collecting donations to fund the placement of their advertisement about flu vaccines, an ad that asked you to go to safemindsflu.org. As it turns out that fundraising effort was at least partially for naught. You can read about it in Orac’s Something to be thankful for: No anti-vaccine propaganda with my Harry Potter, or at skepchick’s Let’s all go to the movies and save ourselves some lives.

As you might guess from Autism News Beat’s, AMC says no to shouting fire in a crowded theater, AMC movie theaters decided that they would pass on the opportunity to show the SafeMinds advertisements.

Why? Well, according to a comment left on the AMC community discussion forum by an AMC employee:

Ryan Noonan, Official Rep, replied 12 hours ago
Thank you for your feedback.

I understand there’s a lot of passion on both sides of this issue, however, as an entertainment company, AMC feels our movie screens are not the proper forum for this debate.

Quite right: public service announcements aren’t for the promotion of a debate. As if to prove AMC’s decision correct, the forum then devolved into the usual debate on mercury in vaccines, with much of the usual misinformation and, as Mr. Noonan notes, name-calling:

Thank you all for taking the time to post. As I have addressed, AMC Theatres have not and will not be airing any spot about this topic. While we appreciate the feedback received, we consider this matter closed.

Per Get Satisfaction’s community guidelines, discussion about topics unrelated to AMC Theatres, as well as name calling are against Get Satisfaction’s community guidelines. Despite numerous requests to refrain from debating issues not related to AMC Theatres, there continues to be discussion and debate about vaccination. Because this is not the proper forum for this debate, I am deleting this thread, as well as any subsequent discussion about this topic in this community.

The advertisement was to put both SafeMinds and their position in the public eye. Those who wanted to could then read more on the SafeMindsFlu.org website. Here is an example of what you will find there. Under the heading “If You Are Pregnant or Have Small Children . . .”

Look at the evidence and decide if you consider the influenza virus a true threat to your family. Also consider the evidence regarding, the effectiveness of the flu vaccine in actually preventing influenza.

If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.

Do not combine the flu vaccine with other vaccines.

Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine

Let’s look at those points.

1) “Look at the evidence and decide if you consider the influenza virus a true threat to your family.” Well, unless you are immune to influenza, then, yes, it is a threat to your family. The question is how much of a threat, not whether it is a threat. The second part is valid, consider the effectiveness of the vaccine. I would add, consider that any medical procedure, including vaccines, carries some risk.

2) “If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.” Sounds like they’ve made up your mind for you on the mercury discussion.

3) “Do not combine the flu vaccine with other vaccines.” Why would that be? Especially, why would that be from the position of mercury exposure? If, as SafeMinds claims, this discussion is about reducing the exposure to mercury, why avoid, say, a mercury free flu shot in combination with a mercury free measles/mumps/rubella shot?

4) “Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine “. But do let yourself get pressured by SafeMinds, as they have already made up your mind that you must have mercury-free vaccines.

SafeMinds goes on:

All vaccines pose some risk, with or without mercury content. However, the influenza vaccine is of great concern, as many brands contain high levels of mercury. SafeMinds recommends that consumers read package inserts for any vaccine prior to immunization.

No idea given as to what constitutes a “high level” of mercury. Given that SafeMinds bills themselves as an autism organization, one would assume that flu vaccines have a low level of mercury. Why? Because the level of mercury in a flu vaccine doesn’t cause autism. (It is worth noting that no level of mercury exposure has been shown to cause autism).

There are valid questions that should be raised about any medical procedure, vaccines included. One reason why SafeMinds gathers so much criticism is that they do not act as a vaccine safety organization. Instead, they are an organization which uses vaccine safety information and questions.

SafeMinds cites studies in Pediatrics, some authored by employees of the CDC or vaccine manufacturors to support some of their claims that the influenza vaccine may not be effective in pregnant women and their infants. Those familiar with SafeMinds will find this ironic as any of those affiliations appear to be a basis to immediately disregard any paper that goes against the SafeMinds positions.

Another example of the methods used by SafeMinds which are deservedly criticized is their approach to the issue of the flu-mist vaccine. They give citations which conclude that the flumist vaccine (which is thimerosal free) is more effective than the injected vaccine. However, SafeMinds stops short of a clear statement such as, “Ask for the nasal spray version of the vaccine”. Why? They have no problem making a clear decision for their readers in regards to avoiding mercury. Why not recommend a vaccine that they claim is safer and more effective? Why not recommend a vaccine? Many critical readers would question whether SafeMinds is, as they would like to say, an organization promoting safer vaccines or if they are, instead, an organization which can not bring itself to recommend a vaccine because they will not support a vaccination.

Can you “get the facts” from SafeMinds? Well, you won’t get all the facts in any place as there is so much material. But, one paper I couldn’t find on the SafeMinds website was this very recent one:

Eick, A., et al, Maternal influenza vaccination and effect on influenza virus infection in young infants.

Here’s the abstract:

Objective To assess the effect of seasonal influenza vaccination during pregnancy on laboratory-confirmed influenza in infants to 6 months of age.

Design Nonrandomized, prospective, observational cohort study.

Setting Navajo and White Mountain Apache Indian reservations, including 6 hospitals on the Navajo reservation and 1 on the White Mountain Apache reservation.

Participants A total of 1169 mother-infant pairs with mothers who delivered an infant during 1 of 3 influenza seasons.

Main Exposure Maternal seasonal influenza vaccination.

Main Outcome Measures In infants, laboratory-confirmed influenza, influenzalike illness (ILI), ILI hospitalization, and influenza hemagglutinin inhibition antibody titers.

Results A total of 1160 mother-infant pairs had serum collected and were included in the analysis. Among infants, 193 (17%) had an ILI hospitalization, 412 (36%) had only an ILI outpatient visit, and 555 (48%) had no ILI episodes. The ILI incidence rate was 7.2 and 6.7 per 1000 person-days for infants born to unvaccinated and vaccinated women, respectively. There was a 41% reduction in the risk of laboratory-confirmed influenza virus infection (relative risk, 0.59; 95% confidence interval, 0.37-0.93) and a 39% reduction in the risk of ILI hospitalization (relative risk, 0.61; 95% confidence interval, 0.45-0.84) for infants born to influenza-vaccinated women compared with infants born to unvaccinated mothers. Infants born to influenza-vaccinated women had significantly higher hemagglutinin inhibition antibody titers at birth and at 2 to 3 months of age than infants of unvaccinated mothers for all 8 influenza virus strains investigated.

Conclusions Maternal influenza vaccination was significantly associated with reduced risk of influenza virus infection and hospitalization for an ILI up to 6 months of age and increased influenza antibody titers in infants through 2 to 3 months of age.

So, vaccinating a pregnant mother reduces the risk of the infant getting the flu (and getting hospitalized as a result). That is contrary to the message I see coming from SafeMinds. They do host another, older study that showed no statistically significant difference in children of vaccinated or unvaccinated mothers. Will they update their webpage to include this new study?

SafeMinds does bring up some valid questions on vaccine safety. And, contrary to how they like to present the discussion, vaccines (and all medical procedures) are not above challenge. However, they tend to use safety questions more as a tool rather than as honest discussion points. Perhaps I missed it, but can you find them bringing up these questions? How can we make influenza vaccines more effective? Isn’t that a laudable goal? Isn’t a universal influenza vaccine be a good goal, rather than the current method of trying to guess which specific strains will be in circulation for the upcoming season? Why haven’t simple safety improvements been made sooner. Changes such as the move to cell-based cultures over egg based cultures which run the risk of allergic reactions. Note that a new flu vaccine plant was being built in the US which would make the move to cell based cultured vaccines. Instead they concentrate on mercury and autism–mercury being the most thoroughly studied vaccine ingredient when it comes to autism (as in, multiple studies, large studies, good studies, have failed to find a link).

What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Reading Age of Autism – All I can handle, I’m no Vladimir Nabokov

13 Nov

I read Dan Olmsted’s latest post on Age of Autism and was reminded I had yet to publish a closing post on my experiences with the book. Here’s a quote from Dan:

It’s doubly disappointing to see traditionally progressive outlets – from Salon to Daily Kos to The Atlantic to National Public Radio and PBS – ignore the evidence presented in our book and so many other places, twist the facts they can’t deny, belittle those who believe otherwise including beleaguered autism parents, and glibly trumpet tired reassurances that the concern over vaccines has been “asked and answered,” that “study after study” has refuted any relation, and that continuing to point out disturbing patterns of evidence to the contrary endangers children and infants.

Quick translation for you: “Waaah, nobody liked our book or thought it was valid. What a bunch of pooh-pooh heads!”

The embarrassing truth for Dan Olmsted and Mark Blaxill is that their book has been still-born. Take a look at the Amazon rankings compiled by Broken Link and its hard to come to any other conclusion. But why has this happened?

First off, the book is badly written. Its not an easy read in the way that Evidence of Harm was. Of course the style is different but Age of Autism is not even a well written poor story.

Secondly, the content is – well – embarrassingly one sided. Whilst B & O claim to be not anti-vaccine, the whole book – particularly part II is rife with anti-vaccine sentiments designed not so much to lead the reader to a conclusion but to batter the reader over the head with the conclusion B & O reached before sitting down to write even.

Thirdly, the content is old hat. There is literally nothing new in the book. For those of us who have followed the the whole story, AoA has nothing _new_ to add to the overall scenario. Whereas Defeating Autism, Autism’s False Prophets and Evidence of Harm all had something _new_ to add to the story, AoA merely dully repeats truthiness from 3 or 4 years ago and couples it with a retelling of historical speculation that simply reiterates what everyone already knew – mercury isn’t so good for you.

So thats that for me reading purgatory. I’m reading something very much better now that I think Sullivan and I will be blogging at length in the new year.

Safeminds defends treatments the FDA deemed “dangerously misleading”

18 Oct

The United States Food and Drug Administration (FDA) recently announced that they had sent warning letters to eight groups who were promoting chelation products without prescriptions and with unproven claims of efficacy.

Chelation is a mainstay of many alternative medical practitions, especially in autism. There is a hypothesis that autism is caused by mercury poisoning. Autism symptoms don’t look like mercury poisoning and multiple studies have been performed testing the hypothesis and shown no link. But the idea lives on. Autistics, mostly children, are subjected to chelation “therapy” to remove heavy metals from the body. After over a decade of this practice, there is still no demonstration that chelation does anything to help autistics. There are studies on Peruvian hamsters which are used to support the idea that autism is caused by mercury poisoning. No, seriously, one of the supports for the mercury/autism link is a study on Peruvian Hamsters. Just goes to show how tenuous the “science” backing chelation is.

Here is part of the FDA statement:

Federal regulators are warning eight companies to stop selling so called ‘chelation’ products that claim to treat a range of disorders from autism to Alzheimer’s disease.

The Food and Drug Administration (FDA) says the companies have not proven their products are safe and effective in treating autism spectrum disorder, cardiovascular disease, macular degeneration, Parkinson’s disease or any other serious illness. Some of the companies also claim their products can detect the presence of heavy metals in the body in an attempt to justify the need for chelation therapy.

One of the more vocal organizations promoting the mercury/autism “link” is a group called SafeMinds. So it isn’t a surprise that they would respond to the FDA warnings..

Here is the opening paragraph from the SafeMinds response:

The FDA issued a media release and held a press conference on over-the-counter chelating products. A recording of the press conference was made available this afternoon (recording available at 800-839-7073). FDA issued warning letters to 8 companies promoting over-the-counter nutritional supplements for chelation therapy (HERE). Chelation is a method of removing heavy metals from the body. The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.

“Nutritional Supplements”? How does a chelator count as a “nutritional supplement”? The human body does not produce chemicals like DMSA which are used for chelation. SafeMinds is well aware of the falacy of the “nutritional supplement” argument after the recent debacle over the chelator turned “supplement” OSR, which had to be pulled from production.

So, SafeMinds starts downplaying the fact that chelators are drugs and, as such, should be regulated.

But they quickly change the tune and acknowledge that these are drugs: “The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.”

As I read this, I had to ask myself “Why did SafeMinds chose such imprecise language?” Let me explain:

Assume a medical professional, say a chiropractor or a nutritionist, “supervises” my use of the prescription drug DMSA, but sells the drug to me without a prescription (as these professionals can not write prescriptions). That would fit into the SafeMinds interpretation, but is clearly not the intent of the FDA statement.

Here is an accurate statement: The FDA warning does not have bearing on the use of chelation drugs prescribed by and supervised by a medical professional.

Continuing with the SafeMinds statement:

In its press conference, the FDA implied that chelation products were being used by parents of children with autism without a doctor’s supervision, but on questioning by reporters, FDA representatives were unable to back up the claim with any evidence of use of OTC chelation products by autism parents or of their use without medical supervision. The FDA asserted that the OTC products being promoted were dangerous and could lead to kidney damage, dehydration and death. On questioning by reporters, the FDA admitted that it had received no reports of adverse reactions to the products or to chelation in general, other than 1 death 5 years ago which was due to a medical error and in which a prescription drug was used.

Note that SafeMinds chose their words carefully. They don’t state that the practice doesn’t occur. SafeMinds just states that the FDA didn’t have the evidence on hand of the “use of OTC chelation products by autism parents or of their use without medical supervision.”

Is Safeminds so out of touch with the online autism community that they can’t find groups promoting over-the-counter (OTC) chelators by autism families? The practice is common. Surely SafeMinds members peruse the exhibitor booths at the parent-conventions (like Autism One).

Google search: “how to buy DMSA without a prescription”. Lot’s of hits.

Here is hit #2: dmsachelation.com/autism/. Pretty clear they are targeting autism treatment there, just from the URL. The blurb on Google for this site? “This page IS intended to show you where to buy DMSA without a prescription. You can get DMSA prescribed, however the cost will range from $2-3 per pill. …”

I didn’t capitalize “IS” in that statement, they did. They wanted to emphasize that one could buy chelators without a prescription.

SafeMinds states that the FDA has received no reports of adverse events from chelation in general. I find this odd. The FDA must not follow online autism parent groups such as those on Yahoo. The FDA must not have read transcripts of the Omnibus Autism Proceeding, which included a description of a child who regressed after being given chelation therapy (under the watchful eye of a prominent alt-med doctor). The FDA must not have performed a google search on chelation deaths with site set to CDC.gov.

First hit, “Deaths Associated with Hypocalcemia from Chelation Therapy — Texas, Pennsylvania, and Oregon, 2003–2005“.

When it comes to the question of “why” adverse events are not commonly reported I am again reminded of the OSR fiasco. The company that sold OSR specifically told their clientele to contact the company in case of adverse reactions. No mention was made of contacting the FDA (which can be done here). I guess I could search the websites of the groups that promote OTC chelators to see if they inform their clients of the ability to report their drug/supplements to the FDA. Somehow I feel confident that I would be able to find groups (possibly many or most) do not give that information.

SafeMinds posted their statement on the blog they sponsor, The Age of Autism. Another sponsor of that blog is Lee Silsby, a compounding pharmacy. They list chelators such as DMSA and EDTA under the category “autism treatments” (Specialties | Autism Treatments | Transdermal DMSA Cream, or Specialties | Autism Treatments | EDTA (calcium)). Not under “heavy metal poisoning” treatments, autism treatments.

The Autism Research Institute, a group which promotes much in the way of alternative medicine as therapies for autism, has a chart that is often used to promote chelation. In their survey, they claimed that over 70% of parents reported that their child got better with chelation. The survey has been often criticized as being unscientific and very biased. Even with this biased sample, 3% of parents reported that their child “got worse” with chelation.

A couple side notes are worth mentioning. First, in that survey the ARI list chelation under “Biomedical/Non-Drug/Supplements”. Non drug? Supplement? I doubt the FDA will agree. Second, the ARI survey lists secretin therapy as beneficial for autism. Secretin hit the news in the 1990’s as a potential autism therapy and has since been shown to be no more effective than a placebo. The survey is very, very biased towards “biomedical” treatments.

Surely SafeMinds is aware of this survey. As in, definitely they are aware of it. Just as Safeminds are certainly aware of the child in the Omnibus proceeding who suffered after chelation. But SafeMinds pretend as though there are no adverse reactions. It is disingenuous, to say the least.

SafeMinds ends their statement with this paragraph:

SafeMinds agrees with the FDA that products being promoted as drugs and biologics should have thorough and unbiased assessments for safety and that parents should work with their healthcare professionals when considering health interventions. SafeMinds feels that FDA has tried to cast autism parents in a negative light without any supporting evidence, by implying that autism parents were giving their children dangerous products without medical oversight. Only on questioning by the media did the FDA have to back off from its wild claims. SafeMinds feels the FDA owes the autism community an apology.

Basically, SafeMinds have taken the Human Shield defense. Rather than actually discuss the facts, SafeMinds attacks the FDA for “wild claims” and claims that the FDA owes the autism community an apology.

From the perspective of this autism parent I would say, yes, the FDA owes us an apology: for taking so damned long to address this issue. The abuse of chelation as a “treatment” for autism has been going on for many years. It is about time that the FDA cracked down and made the “wild claim” that a prescription drug should be given by perscription.

Heck, the FDA isn’t even making the “wild claim” that toxicology treatments should be performed by toxicologists. Just someone with a prescription pad.

Why isn’t SafeMinds telling autism families to seek out medical toxicologists to test and treat heavy metal poisoning? The answer is painfully clear. The methods of diagnosis and treatment that groups like SafeMinds promote do not compare to the methods used by those trained specifically to treat heavy metal intoxication.

Should make one pause to wonder.

FDA: Chelation not proven safe or effective in treating autism

14 Oct

Chelation is a process whereby metals are removed from the body using a drug, a chemical which binds to the metals and allows them to be excreted. Because of the incorrect notion that autism is caused by mercury or is a “novel” form of mercury poisoning, chelation is one of the more common alternative medical therapies applied to autistics.

The FDA has recently issued a warning to many of those who market unapproved chelators. Two articles appear on the FDA website today:

FDA Tightens Reins on Unapproved ‘Chelation’ Drugs

and a press release

FDA issues warnings to marketers of unapproved ‘chelation’ products.

They have also issued a printer-friendly pdf: FDA chelation warning pdf

From that pdf:

Federal regulators are warning eight companies to stop selling so called ‘chelation’ products that claim to treat a range of disorders from autism to Alzheimer’s disease by removing toxic metals from the body.

The Food and Drug Administration (FDA) says the companies have not proven their products are safe and effective in treating autism spectrum disorder, cardiovascular disease, macular degeneration, Parkinson’s disease or any other serious illness. Some of the companies also claim their products can detect the presence of heavy metals in the body in an attempt to justify the need for chelation therapy.

The groups that have been warned are:

• World Health Products, LLC: Detoxamin
Oral, Detoxamin Suppositories, and the
Metal Detector test kit
• Hormonal Health, LLC and World Health
Products, LLC: Kelatox Suppositories,
and the METALDETECTOR Instant Toxic
Metals Test
• Evenbetternow, LLC: Kids Chelat Heavy
Metal Chelator, Bio-Chelat Heavy Metal
Chelator, Behavior Balance DMG Liquid,
AlkaLife Alkaline Drops, NutriBiotic
Grapefruit Seed Extract, Natur-Leaf,
Kids Clear Detoxifying Clay Baths, EBN
Detoxifying Bentonite Clay, and the
Heavy Metal Screen Test
• Maxam Nutraceutics/Maxam Laboratories:
PCA-Rx, PC3x, AFX, AD-Rx, AN-Rx,
Anavone, AV-Rx, BioGuard, BSAID, CF-Rx,
CreOcell, Dermatotropin, Endotropin,
GTF-Rx, IM-Rx, Keto-Plex, Natural Passion,
NG-Rx, NX-Rx, OR-Rx, Oxy-Charge,
PN-Rx, Ultra-AV, Ultra Pure Yohimbe, and
the Heavy Metal Screening Test
• Cardio Renew, Inc: CardioRenew and
CardioRestore
• Artery Health Institute, LLC: Advanced
Formula EDTA Oral Chelation
• Longevity Plus: Beyond Chelation
Improved, EndoKinase, Viral Defense,
Wobenzym-N
• Dr. Rhonda Henry: Cardio

I wonder how the FDA chose these groups for the first round of warnings. I also wonder if/when there will be more warning letters.

Also from the FDA pdf:

FDA says consumers should avoid nonprescription products offered for chelation or detoxification. FDA-approved chelating agents are available by prescription only and are approved for use in specific indications such as the treatment of lead poisoning and iron overload. The agency says even the prescription medications carry significant risks, and they should only be used with medical supervision.

I don’t know why the FDA has taken so long to step in and take action. Chelation has been going on for years, and has never had a sound basis in science or even a good rationalization for the treatment of autism.

Trine Tsuderous has an article on the Los Angeles Times website, FDA warns about treatments for autism, heart disease.

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