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Law Firm Faces Legal Action Over Handling Of MMR Vaccine Case

21 Sep

This story is in the U.K. version of the Huffington Post. The article, Law Firm Faces Legal Action Over Handling Of MMR Vaccine Case, brings the question of MMR litigation back up, but in a different way. First, the families are claiming that encephalitis, not autism, was the claimed injury. Second, they are suing the law firm that handled the case, not the vaccine manufacturers.

Three families who claim their children suffered a potentially fatal illness from the mumps, measles and rubella (MMR) vaccine are suing a law firm they say grouped them with a now discredited case over a link between the jab and autism.

A case was brought against the manufacturers of the MMR jab – Smithkline Beecham, Smith Kline & French Laboratories and Sanofi Pasteur MDF – in 2007, over claims that the jab caused autism in children. However three families who say the vaccine caused encephalitis in their children, not autism, believe they were unable to claim compensation because of the way the case was dealt with.

Note that the Huffington Post has the dates wrong in the section quoted above. The case was brought in the late 1990’s and abandoned in 2003 when lack of evidence resulted in a loss of public funds to support the investigation further.

The BMJ also covers the story, noting that in 2002 the then chairman of the UK’s Committee on Safety of Medicines, Alasdair Breckenridge, said: “There is sound evidence that mumps vaccine containing the Urabe stran of virus is associated with a risk of meningitis and [has} no proven additional benefits. The risk to children of a potentially serious neurological complication makes its use unacceptable.”

Since the focus here at Left Brain/Right Brain is primarily autism, and the Wakefield case has been discussed (and discussed, and discussed), I expect that most readers know the basic story. But, indulge me for a moment while I give a short history.

Back in the mid-1990’s, some families believed that MMR caused their child’s autism. They sought both legal and medical expertise to pursue their case. The legal end was led by Richard Barr of the firm Alexander Harris. For medical expertise, they (parents and leagal team) approached Andrew Wakefield, a research gastroenterologist who had just recently implicated the measles vaccine in Crohn’s disease.

After Mr. Wakefield and his team published their first paper in The Lancet in 1998 (a paper since retracted), he became even better known for his views on MMR. Sometime after this, attorney Richard Barr was contacted by a public health insider with concerns about the MMR. Mr. Barr and Mr. Wakefield met with this “whistleblower” in secret.

The thing is, the concern was about encephalitis from the mumps component. Not autism from the measles component, as was Mr. Wakefield’s hypothesis.

The meeting between Mr. Wakefield and this gentleman became known only recently, 1998, while Mr. Wakefield faced charges before the General Medical Council. Mr. Wakefield released details of his story and threatened to disclose the name of the “whistleblower”. Mr. Wakefield later followed through on this threat.

This raises very important questions. Most notably, why didn’t the legal and scientific team working on MMR litigation follow up on the mumps/encephalitis question? The idea was known to Mr. Wakefield and Mr. Barr. The MMR litigation went forward with the theory that the measles component was causing autism, and failed.

And now some parents consider these events to be a strong enough case to sue a law firm handling their case: Alexander Harris.

The families claim the MMR vaccine brought neurological injury and are suing the law firm that brought the original litigation against the vaccine’s manufacturer.

As part of the group autism case, the families claim they were deprived of the compensation likely to come from bringing individual actions.

Mr. Wakefield’s discussion of his meeting with the “whistleblower”, together with commentary from Brian Deer, is in the video below:

While Mr. Deer focuses on how Mr. Wakefield is treating the “whistleblower”, another big question is left open by this discussion: did Mr. Wakefield act on the information he was given? Did the attorneys? The secret meeting in the train station makes a rather dramatic story, but it doesn’t really reflect well on Mr. Wakefield.

Michele Bachmann stands firm on her vaccine comments. As firm as someone who “has no idea” can be.

17 Sep

Some people never back down from a fight. It sounds strong, but in reality many of these people are fools. Never back down from a fight? There are times when a person is in a bad position, often of his/her own making, and it would be better for all to cut one’s losses.

Sure there are many examples of people unwilling to back down from a fight in the autism/vaccine discussion which we could point to. For today, let’s consider a relative newcomer as our case in point: Michele Bachmann, United States presidential candidate. Recently she made comments about the HPV vaccine. She gave a story of the HPV vaccine resulting in mental retardation.

Here’s the video of her speaking on the HPV vaccine.

“Could potentially be a very dangerous drug”

“It can have very dangerous side effects”

“There is no second chance for these little girls if there is any dangerous consequences for their bodies”

Ms. Bachmann held a fund raiser in the San Francisco bay area recently. One attendee wrote about the even in the San Francisco Chronicle Politics blog, an article GOP presidential candidate Michele Bachmann refuses to back down on HPV, slams Solyndra (VIDEO)

Ms. Bachmann is quoted:

On Thursday, Bachmann maintained she was making no claims regarding the drug this week, and that she was merely trying to underscore “an abuse of power” by Texas Gov. Rick Perry in mandating the vaccine for girls in his state.

“I didn’t make any statements that would indicate I’m a doctor, I’m a scientist, or making any conclusions about the drug one way or the other,” she said, adding she was merely relating the concerns of a woman who was “very distraught” and who supported her view that Perry’s actions were wrong.

Not a doctor, not a scientist. Where have I heard that before?

As to the rest of the statement all I can say is, really? And, not good enough. She made some strong statements. Is “”Could potentially be a very dangerous drug”” consistent with “not one way or the other”?

Here’s another video of her defending her statement, Video: Bachmann Asserts Right to Talk Nonsense About Vaccines:

http://c.brightcove.com/services/viewer/federated_f8/823619053

She points out that Rick Perry admitted making a mistake. Like this is a bad thing. This is a time for her to follow his example.

She won’t even answer the question of whether she will apologize for the remark. Come on. Take a stance. Either you made a mistake or you didn’t. Either apologize or tell us that you won’t.

In short: Lead. You are running for president. Show leadership.

In a later story, from Yahoo News, Ms. Bachman adds a qualifier to her “I’m not a doctor…” statement: Bachmann: ‘I have no idea’ if HPV vaccine causes mental retardation

Yes, she “has no idea”.

“I have no idea,” Bachmann said, before repeating the story about the woman. “I am not a doctor. I am not a scientist. I am not a physician. All I was doing was reporting what a woman told me last night at the debate.”

I think the words she is looking for are, “I’m sorry” and “I made a mistake”. That would be leadership. Own your mistakes. Learn from the people in the vaccines-cause-autism camp. Well, learn from their mistakes. A big mistake you can learn from: don’t hang on to disproved ideas that are really out of your area of expertise. When you are shown to be wrong, admit it and move on.

Lessons from the MMR scare

13 Sep

Fiona Godlee, editor of the British Medical Journal (BMJ), recently presented to the National Institutes of Health on the “Lessons from the MMR scare”.

The talk is now online at the NIH site (no embed link is obvious to me at present).

The talk gives a nice hour long discussion of the issues surrounding Andrew Wakefield’s research efforts in autism and the MMR vaccine.

One of the points Ms. Godlee goes into is a good example of the sort of falsification that is prevalent in the Lancet paper. She discusses the fact that 11 of the 12 families thought that the MMR vaccine was linked to developmental regression. The paper reported that only 8 families felt there was a link. Earlier drafts of that more families thought there was a link, but those families reporting long times to onset after MMR were removed.

Another discrepancy to emerge during the GMC hearing concerned the number of families who blamed MMR. The paper said that eight (1, 2, 3, 4, 6, 7, 8, and 11) linked developmental issues with the vaccine. But the total in the records was actually 11. The parents of child 5, 9, and 12 were also noted at the hospital as blaming the vaccine, but their stated beliefs were omitted from the journal.

It is one of those very simple arguments that shows misrepresentation of the facts.

How did the misconduct become exposed? She discusses how 4 factors played into why this case of fraud was exposed:

1) A skilled investigative reporter was put on the case (Brian Deer)
2) the freedom of information act was enacted in 2000 (allowed access to information)
3) Mr. Wakefield’s decision to sue Brian Deer. (This forced Brian Deer to do further digging to defend himself.)
4) The GMC’s decision to take up the case. (This placed much data in the public domain)

It has been discussed a number of times previously that Mr. Deer gained access to the medical records after the lawsuit was started, and that the lawsuit was withdrawn literally as he was reviewing the documents.

She discusses the backlash that the BMJ has received with negative comments. Also some very strange misrepresentations. For example, an article in “Natural News” is incorrect (not surprising to those familiar with the site) in stating “BMJ admits that fraud claim against Dr. Andrew Wakefield has no basis in fact”.

She discusses the claim that Andrew Wakefield’s work has been replicated. It is a common argument that comes up. And, it isn’t true. There are attempts to replicate which his work which failed to do so.

No legal challenge from Mr. Wakefield and no complaints to the press complaints commission. Interestingly (to me at least) is that he declined an offer from the BMJ to write a reply.

I find it intersting that she couldn’t even recall Jim Carrey’s name (and had even less recall of Jenny McCarthy’s name).

She points out that the GMC was not really the proper forum to investigate the research fraud. But, at present the UK has no office of research integrity.

She poses the question of what could have been done to prevent this. She suggests that greater oversight needs to be in place. She also points out that co-authors need to take a more active role in oversight of data reporting. Better peer review is needed. But when an author lies, it is difficult for an editor to discover it. There should be some level of penalty for research fraud–as in, why isn’t this a criminal act?

She calls for better research on vaccine safety research. Also for better autism research.

Mark Geier: vaccine lover

7 Sep

Sometimes reality is just stranger than fiction. Consider Mark Geier. He’s the doctor whose license has been suspended in Maryland for his treatment of autistic children with Lupron. He’s been a regular expert witness in the vaccine court for something like 20 years. He’s got multiple papers out on the dangers of mercury in vaccines.

Think that’s enough to please the vaccines-cause-autism crowd? Think again.

Stroll over to Facebook where a heated discussion is ongoing.

…you’re wrong on that one…. from personal experience having dinner with Dr. Geier….he has no problem with the vaccines other than mercury. He told me to my face at dinner that he gave his patients the H1N1 vaccine last year (Hg free of course). Sorry, but that is from personal experience….he’s a hack in my book.

Yep. Giving vaccines makes one a hack. Treating faux precocious puberty, not so much.

the response?

…thanks for saying that…I detected he was a vaccine lover.

Yep, he’s a “vaccine lover”. Mark Geier. That’s his failing.

… I know I’ll probably make some enemies over this but I call em’ as I see em’ and this was NOT hearsay. He told me that to my face at dinner…I got up, called him a moron and didn’t come back to finish my dinner. I fumed all night!

Well, there you have it. Tell the wrong people you gave vaccinations and you are a hack, a “moron” and you make people lose their appetite.

The world never ceases to amaze.

MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science

6 Sep

In a commentary for the Mayo Clinic Proceedings, Gregory A. Poland, MD writes about MMR and autism. In case you don’t get the idea of his stance from the title of the article, MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science, it starts out with a quote:

Nothing is more terrible than to see ignorance in action.

Johann Wolfgang von Goethe

I’m sure people will counter that they are very “smart” and “well educated” and, therefore, not ignorant when they promote the MMR/autism notion. Is it ignorance, willful ignorance, bias, dishonesty, some mix or something else entirely that is behind the perpetuation of the idea? I don’t know. On a very real level, it doesn’t matter. What matters is the fact that the MMR hypothesis was wrong and that those who continue to promote it are causing a very real danger to society.

That said, here are Dr. Poland’s views in the introduction to his paper:

It is a truism that acting in one’s perceived self-interest is not always in one’s self-interest. Perhaps nowhere is this truer in contemporary public health than for the issue of the measles-mumps-rubella (MMR) immunization and persistent fears about a possible connection with autism. Although each of these 3 diseases had been controlled in the United States with the widespread use of the MMR vaccine, in the past decade those gains have been slipping. Even though the United States has had fewer than 50 measles cases per year during the past decade (mostly imported from other countries), 156 cases have already been identified in the first 6 months of 2011. 1 European countries such as England, Wales, Italy, France, Spain, and Germany are also experiencing substantial increases in measles outbreaks.

Why should we be concerned? Measles is the most transmissible human disease known. Even with modern medical care, approximately 1 of every 3000 infected persons die, and many more are hospitalized or otherwise harmed as a result. Population coverage (herd immunity) needs to be in excess of 96% to prevent outbreaks. In addition, measles is a disease for which eradication is both possible and planned, a goal that obviously cannot be met given current vaccine coverage levels.

This predictable sequence of falling coverage levels, followed by outbreaks of disease, has occurred because of decreased public confidence in the safety of the MMR vaccine. In large part, this has resulted from incorrect assertions that the vaccine plays a role in the development of autism, an idea promoted by Andrew Wakefield. No credible scientific evidence, however, supports the claim that the MMR vaccine causes autism, and indeed, national medical authorities and scientific professional societies have unanimously …

This article is commentary (i.e. not a research article), but there are some good points and questions made:

Why in the face of nearly 2 dozen studies and every scientific committee rejecting such an MMR-autism connection does this myth persist?

As expected, he notes the celebrity aspect of the vaccine-causation notion. He also discusses the recent paper in the PACE Law Review.

Under “Moving Forward”, Dr. Poland writes:

At some point, a point I believe we have well passed, the small group of people who claim such connections, who have no new or credible data, and for which their assumptions and hypotheses have been discredited must simply be ignored by scientists and the public and, most importantly, by the media, no matter how passionate their beliefs to the contrary. Such individuals are denialists at best, and dangerous at worst. Unfortunately, the media has given celebrities who comment on an autism-MMR link far more attention than they deserve, and the public, unfamiliar with the background science, has confused celebrity status with authority. Such a phenomenon has not been lost on those wishing to continue the discussion. As an example, J. Hanlon, cofounder of Generation Rescue (an organization that advocates for an autism-MMR vaccine link) commented, in regard to the finding that both Andrew Wakefield and his assertion of a connection between autism and MMR vaccine had been discredited, that to those who believe vaccines cause autism “Andrew Wakefield was Nelson Mandela and Jesus Christ all wrapped in one.”

Prediction: we will hear all about how this commentary is obviously worthless because the author didn’t correctly cite J.B. Handley. If you are wondering what I mean, read again, Mr. Handley is referred to as J. Hanlon. I wish the author hadn’t made that mistake as such small errors are exploited in exactly this way. But, at the same time, this puts some perspective on the situation regarding Mr. Handley. He is a well known name in a very small community. He has become one of the go-to people for comments critical of vaccination (as in the Jesus Christ/Nelson Mandella article).

Prediction 2: Dr. Poland’s article will be called an attempt at censorship (see the conclusion below). Probably with no sense of irony by the same people who recently stated that Autism Speaks should “Shut up, shut down and go away.”

Prediction 3: People will still refuse to see how strange the “Nelson Mandela and Jesus Christ” comment read to the majority of readers. OK, I am predicting the past here, but I expect this to go forward too. Dr. Poland didn’t pick this quote to place Andrew Wakefield in good light.

That all said, I agree with Dr. Poland. It is well past time for the MMR story to be set aside. Just because there are adherents to the idea doesn’t mean that news organizations need to give it false balance.

Dr. Poland concludes his article with a simple summary: the MMR/autism question has been investigated closely and no link is found. The decision to forgo immunization based on this fear is not without danger. Those who promote the MMR/autism link in the face of all the evidence are not working for the public good:

For anyone adhering to the scientific model of discovery, experimentation, and evidence, the trial is over and the jury back—there is no known scientific association between receipt of MMR vaccine and the subsequent development of autism. Making the decision to not immunize children with the MMR vaccine because of fear of such an association —rather than credible scientific evidence—places children and others at great risk as current measles outbreaks in the United States and Europe illustrate. Vaccine nihilists who continue to claim such associations are simply wrong, and they pedal an agenda other than for the public good. At this point, the antivaccine groups and conspiracy proponents promoting such an association should be ignored, much as thinking people simply ignore those who continue to insist that the earth is flat or that the US moon landing in 1969 did not really occur

He concludes simply but strongly:

There is no law against being foolish, nor any vaccine against ignorance; however, in the meantime the health of millions of children in the United States and worldwide is being placed at unnecessary and real risk through continued deliberate misinformation and discredited unscientific beliefs, and that should be a crime.

Lessons from the MMR scare by Fiona Godlee

2 Sep

Fiona Godlee, editor of the British Medical Journal, will address the National Institutes of Health (NIH) on Tuesday, Sept. 6th. Her talk, Lessons from the MMR scare, will take place at 11am eastern time, and is scheduled for 90 minutes.

It will also be videocast.

Please join BMJ Editor Fiona Godlee for a discussion of the stunning investigation she published earlier this year that revealed the MMR scare was based not on bad science but on deliberate fraud. The three-part series was produced by journalist Brian Deer, who spent seven years investigating Andrew Wakefield’s infamous study linking the MMR vaccine with autism, discovering Wakefield had been paid by a lawyer to influence his results and had blatantly manipulated the study data.

In an editorial accompanying Deer’s report, Godlee and colleagues noted, “Science is based on trust. Without trust, research cannot function and evidence based medicine becomes a folly. Journal editors, peer reviewers, readers, and critics have all based their responses to Wakefield’s small case series on the assumption that the facts had at least been honestly documented. Such a breach of trust is deeply shocking. And even though almost certainly rare on this scale, it raises important questions about how this could happen, what could have been done to uncover it earlier, what further inquiry is now needed, and what can be done to prevent something like this happening again.”

For more information, read the BMJ articles:

The fraud behind the MMR scare, Fiona Godlee, et al
Wakefield’s article linking MMR vaccine and autism was fraudulent
Institutional and editorial misconduct in the MMR scare

Secrets of the MMR scare: Brian Deer

Part 1: How the case against the MMR vaccine was fixed
Part 2: How the vaccine crisis was meant to make money
Part 3: The Lancet’s two days to bury bad news

The NIH website gives a brief biographical blurb on Ms. Godlee:

About Fiona Godlee

Fiona Godlee has been Editor in Chief of the BMJ since 2005. She qualified as a doctor in 1985, trained as a general physician in Cambridge and London, and is a Fellow of the Royal College of Physicians. Since joining the BMJ in 1990 she has written on a broad range of issues, including the impact of environmental degradation on health, the future of the World Health Organisation, the ethics of academic publication, and the problems of editorial peer review. In 1994 she spent a year at Harvard University as a Harkness Fellow evaluating efforts to bridge the gap between medical research and practice. On returning to the UK, she led the development of BMJ Clinical Evidence, which evaluates the best available evidence on the benefits and harms of treatments and is now provided worldwide to over a million clinicians in 9 languages. In 2000 she moved to Current Science Group to establish the open access online publisher BioMed Central as Editorial Director for Medicine. In 2003 she returned to the BMJ Group to head up its new Knowledge division. She has served as President of the World Association of Medical Editors (WAME) and Chair of the Committee on Publication Ethics (COPE) and is co-editor of Peer Review in Health Sciences. She lives in Cambridge with her husband and two children.

hat tip to a commenter at Respectful Insolence for this information.

Internet survey shows high autism rate in unvaccinated children

31 Aug

Informal surveys are fraught with problems. There can be all sorts of biases. Many ways for the data to be skewed one way or another. A great example of this was the Generation Rescue phone survey. The results were all over the map, and clearly flawed. Many of the results pointed to higher autism rates in partially vaccinated over fully vaccinated children.

That was four years ago. Recently an internet survey was undertaken to explore vaccine questions. The survey results can be found on the site vaccineinjury.info. People with agendas certainly can do surveys, but they shouldn’t be surprised when their agendas are pointed out. I won’t go into the survey or results in detail. I have a suspicion the results will be analyzed elsewhere. Rather, let’s just look at the autism results.

Here is the age distribution of the (mostly) children reported on in the study. Very skewed towards the very young.

Here is the distribution of an age distribution of the fraction of kids in each group reported to be autistic (click to make bigger)

If you are wondering, “did they just publish a graph showing high autism ‘prevalences’ in unvaccinated kids?”, you are correct. They are showing that in some age groups the fraction of unvaccinated autistic kids is about 2%. The current prevalence estimate for the U.S. and the U.K. is about 1%.

Do we really want to put any weight on this result? No, not really. It is a nicely packaged internet survey, but it is an internet survey after all. Can we speculate a little as to what this means? Sure. It could mean that the groups that were recruited for this survey included more families with autistic children. Given the high recurrence risk of autism (i.e. the high chances that a younger sibling of an autistic kid would be autistic) it is not only reasonable, but predicted, that such a survey might show a high fraction of autistic kids.

Keep something in mind–the number of autistic kids is small. If I did the math correctly, there are only 37 autistic kids total. [edit to add–this is incorrect. There are 44. I left out two age groups in my total] That means big uncertainties (error bars) in the “results”. Results which, as we’ve already discussed, are pretty skewed just by the design and limitations of the survey.

Must be unexpected for the people doing the survey. Rather than show a low autism prevalence, they show a high one. For those who claim (sometimes over and over) that there are no unvaccinated autistic kids, here is another piece of evidence that they are wrong.

It’s clear enough that even commenters at the Age of Autism blog have noticed it. From “Sarah”:

Help! What am I doing wrong trying to read these graphs? The one titled autism in UNVACCINATED children shows autism percentages above the commonly accepted level in vaccinated children, but in the full study, which also shows a similar graphic, they say only 4 children in the study had severe autism. Are the graphs supposed to be the levels in vaccinated children? What am I missing here? Does this study show higher rates of autism among the unvaccinated?

Yes, Sarah, you are seeing correctly. The study shows higher rates of autism amongst the unvaccinated. That’s what the >1% values for ages 3-12 means when compared to the 1% value currently reported for the United States.

And, you can see people trying to “interpret” these results in interesting ways:

Sarah, I see 0.57% for autism roughly half of the rate seen in vaccinated children.
Note also that many who are not vaccinating are doing it because they have a child with autism already and these families have an increased likelihood of another child having autism as well. These numbers could be much lower in a larger survey and the cases are less severe as noted already. I hope this helps.

Yes, if you want to water down the results by averaging, including infants too young to be reliably diagnosed, you can get a lower prevalence. Of course, to do that one has to ask: what is the prevalence of diagnosed autism amongst infants? We don’t know.

The website notes:

Due to the fact that the majority of children in the survey are between 0 and 2 years of age and some diseases generally do not appear in this age group, the results are subdivided into different age groups (click on the graphic). Information about country, gender, age, age distribution, breastfeeding, preferred tretment[sic] can be found here.

And they are correct. There are no autistic kids in the age 0-2 group reported. Looking at just the ages 3-18 kids, there are 4326 kids, making a “prevalence” of 0.85, if you want to average. That would be within the error bars of the current autism prevalence estimate in the U.S..

As I’ve noted, the Age of Autism blog has already discussed this (thanks to those who sent me the link). I doubt this will get much play from these groups as the results are really not good from their point of view.

The Autism Speaks Book List

29 Aug

I want to like Autism Speaks. I really do. I know some very good people working with Autism Speaks. From a very practical standpoint, they are one of the biggest autism organizations and I need them to be doing good.

Unfortunately, sometimes Autism Speaks does things which I really find difficult to support. Recently, I pointed out that Autism Speaks is sponsoring a conference by the National Autism Association. This conference will be hosting Andrew Wakefield to speak. In my view, Mr. Wakefield is a person whose damage to the autism communities can not (and should not) be minimized. Even though Autism Speaks isn’t directly hosting Mr. Wakefield, I feel that it would be good and appropriate to withhold sponsorship of such an event.

During the discussion of that article I decided to search for how Autism Speaks discusses Mr. Wakefield on their website. The Autism Speaks website is a resource for many families looking for information. I found that Autism Speaks has a book list in their Resource Library (Family Services » Resource Library » Books) and this list includes “Callous Disregard: Autism and Vaccines – The Truth Behind a Tragedy”, Mr. Wakefield’s account of the events surrounding the loss of his medical license.

Frankly, I find this a poor resource for autistics, families, well anyone looking for accurate and useful information. Shannon Rosa did what I should have done and contacted Autism Speaks for comment and reported the response the comments here.

Kim, you are awesome. And I agree, working towards real change is hard; it requires a lot of processing power, a lot of reflection, a lot of synthesis, a lot of perseverance—and an eye on long-term as well as short-term goals.

Re: listing Callous Disregard, Autism Speaks pointed me to their resources section’s legal disclaimer:

“Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool. Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of those listed. The resources listed on this page are not intended as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Users are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.”

But I still think including Callous Disregard reflects badly upon them, and have said so. The conversation continues.

Since that time two small changes have occurred to that page. First, a disclaimer was added (it wasn’t there before, as the Google cache version confirms). The disclaimer:

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on this website is not a recommendation, referral, or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal, or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.

I agree…to a point. Autism Speaks can’t be responsible for everything said in every resource. However, Mr. Wakefield was found guilty of dishonesty and unethical behavior in his research activities involving autistics. Even if one believes Mr. Wakefield’s account (which is clearly contradicted by the facts), it doesn’t give any real information of value to, say, a family with a new diagnosis. Autism Speaks can and does make a distinction of what books to host. You won’t find “The Empty Fortress” by Bruno Bettleheim on the list (surprisingly enough, it is still in print).

The second change to the Autism Speaks books resource page? The link has been removed to “Callous Disregard”. The book is still listed, but there is no link to the publisher’s site any longer.

The vaccine-autism notion has caused a great deal of harm to the autism communities. So much time and money has been thrown at researching the supposed epidemic of vaccine-induced autism. Much more to the point for an organization like Autism Speaks: this idea has caused a great deal of harm to families, a great deal of pain and, most importantly, a great deal of unwarranted and sometimes dangerous medicine to be practiced on autistics. This is why I would go further than to question why Autism Speaks lists a book by someone proven dishonest and unethical. I would ask why continue to give support to ideas whose time has clearly passed.

For example:

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

David Kirby’s book was speculative at best when written. It is now very clearly false. Thimerosal did not cause an autism epidemic. And why list this under the subheading “Medical, Biomedical, Diet Interventions”? Mr. Kirby isn’t anything close to a medical professional and the book is more of a speculative thiller involving conspiracies which didn’t occur to cover up a mercury-induced epidemic that didn’t happen. Here’s the blurb for Evidence of harm:

Evidence of Harm explores the heated controversy over what many parents, physicians, public officials, and educators have called an “epidemic” of afflicted children. Following several families, David Kirby traces their struggle to understand how and why their once-healthy kids rapidly descended into silence or disturbed behavior, often accompanied by severe physical illness. Alarmed by the levels of mercury in the vaccine schedule, these families sought answers from their doctors, from science, from pharmaceutical companies that manufacture vaccines, and finally from the Center for Disease Control and the Food and Drug Administration-to no avail. But as they dug deeper, the families also found powerful allies in Congress and in the small community of physicians and researchers who believe that the rise of autism and other disorders is linked to toxic levels of mercury that accumulate in the systems of some children.

An important and troubling book, Evidence of Harm reveals both the public and unsung obstacles faced by desperate families who have been opposed by the combined power of the federal government, health agencies, and pharmaceutical giants. From closed meetings of the FDA, CDC, and drug companies, to the mysterious rider inserted into the 2002 Homeland Security Bill that would bar thimerosal litigation, to open hearings held by Congress, this book shows a medical establishment determined to deny “evidence of harm” that might be connected with thimerosal and mercury in vaccines. In the end, as research is beginning to demonstrate, the questions raised by these families have significant implications for all children, and for those entrusted to oversee our national health.

Other books of a questionable nature:

What Your Doctor May Not Tell You About(TM) Children’s Vaccinations
by Stephanie Cave

This is a book which links vaccines to autism using, for example, the incorrect comparison of mercury poisoning symptoms to autism, and gives the Wakefield (called “One of the most prominent researchers in MMR vaccine research) hypothesis for MMR causing autism.

Another example from the Autism Speaks book list:

The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic
by Dan Olmsted, Mark Blaxill

This is another in the series of books making the link between autism and mercury. On the one hand, it is nice for Autism Speaks to host a link to a book by people who are such harsh critics of Autism Speaks. But, why be polite when the book is a failed hypothesis wrapped in a bad understanding of science?

Another book:

Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children
edited by Louise Kuo Habakus, MA, and Mary Holland, JD

Amongst other topics discussed, this book includes a chapter which is basically a summary of “Callous Disregard”. I know this is getting repetitive, but Autism Speaks could do families a service by steering them away from this.

The book list is long. No one will agree with all the books listed as being accurate and valuable. I have no problem with that. I do feel that some level of screening is being done and more should be done. A new family deserves better than to waste their time, money and emotions on the failed ideologies of the past decade. They are, after all, trying to perform a service with this book list. I am only asking that they follow through on the spirit of this. Perform a service. Pointing them at sources of misinformation is no service. Disclaimers don’t change that.

Adverse Effects of Vaccines: Evidence and Causality

26 Aug

The United States Institute of Medicine (IOM) has just published a lengthy report, Adverse Effects of Vaccines: Evidence and Causality.

The short summary, via Reuters, is: “the big take-home message is that we found only a few cases in which vaccines can cause adverse side effects, and the vast majority of those are short-term and self-limiting.”

As to autism? There are two main theories of autism and vaccines: MMR and Thimerosal. The autism and MMR theory is one of the most studied and most clear. The committee found that the research “Favors Rejection”. As in,

The committee concluded the evidence favors rejection of five vaccine-adverse event relationships. These include MMR vaccine and type 1 diabetes, DTaP vaccine and type 1 diabetes, MMR vaccine and autism, inactivated influenza vaccine and asthma exacerbation or reactive airway disease episodes, and inactivated influenza vaccine and Bell’s palsy. The evidence base for these conclusions consisted of epidemiologic studies reporting no increased risk; this evidence was not countered by mechanistic evidence

The epidemiological evidence says there is no increased risk. There is no good mechanism known or postulated whereby MMR could cause autism.

Thimerosal is barely mentioned in the report, with only 7 mentions. As far as autism+thimerosal is concerned, the IOM reviewed the literature years back and found no evidence of a link. Since that time, the evidence has grown greater against a link and thimerosal has been removed from the routine pediatric vaccine schedule (e.g. Price et al. Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism
and, while not specific to autism, Thomson et al. Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years)

Previous IOM reports on Thimerosal: Immunization safety review: Thimerosal -containing vaccines and neurodevelopmental disorders.

Previous IOM report on vaccines and autism (especially MMR and thimerosal): Immunization safety review: Vaccines and autism.

I expect much criticism to be focused on the IOM from some circles. The arguments will likely focus on “look at all the vaccines which have not been specifically studied in relation to autism”. It is a semi valid point. The problems with the argument are many, but include: what mechanism is there for these vaccines to cause autism? (Too many too soon is a slogan, not a scientific argument). Without a mechanism, and without some sort of data showing a possible link, there is such a low possibility of finding anything that resources are best spent elsewhere. In addition, the studies to date give a reasonable proxy for vaccine exposure: the more thimerosal an infant was exposed to, the more vaccines. Thimerosal exposure becomes a proxy for the number of vaccines. It has been shown (multiple times) that there isn’t an increased risk for autism with thimerosal.

Lastly, if you read the criticisms claiming “but they’ve only studied one vaccine and one ingredient”, watch for the intellectual honesty. That’s the part where the critic admits that “they’ve only studied one vaccine and one ingredient, and they found that those don’t increase the risk of autism“. Most critics in this field are cake-eaters. They want their cake (the argument that the studies have only looked in depth at MMR and thimerosal) and they want to eat it too (by denying the results of those studies). It’s predictable.

ACHAMP resorts to calling health legislation the “California Pedophile Protection Act of 2011”

25 Aug

ACHAMP, now the “Autism Action Network”, wants Californians to lobby against Assembly Bill 499. Why? Because it would allow minors access to the vaccine against HPV (human papillomavirus) without parental consent.

I have yet to hear a good explanation why supposedly autism organizations have such a fixation on the HPV vaccine. Seriously, has anyone made the claim that vaccines given to 12 year olds cause autism?

Here’s what ACHAMP has to say about this law:

If a twelve-year old child requests a vaccines for a sexually transmitted disease, what conclusion could a rational person come to other than a sexual crime has either occurred or will occur in the near future, which is exactly the standard required by California law for mandated reporters. How can a physician or nurse give a vaccine for a sexually transmitted disease, or other professionals counsel a child on getting such a vaccine, without the child’s parents’ involvement, and obey the mandated reporter laws? We don’t know either, which is why we consider this bill to the California Pedophile Protection Act of 2011.

The “California Pedophile Protection Act of 2011”?!? Wow, ACHAMP. Besides the fact that the logic is completely off, what’s the need for this language?

Here is the text of AB 499

FEBRUARY 15, 2011

An act to amend Section 6926 of the Family Code, relating to minors.

LEGISLATIVE COUNSEL’S DIGEST

AB 499, as introduced, Atkins. Minors: medical care: consent.

Existing law allows minors to consent to specified forms of medical or dental treatment.

This bill would, in addition, allow a minor who is 12 years of age or older to consent to medical care related to the prevention of a sexually transmitted disease.

Vote: majority. Appropriation: no. Fiscal committee: no. State-mandated local program: no.

THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:

SECTION 1. Section 6926 of the Family Code is amended to read:
6926. (a) A minor who is 12 years of age or older and who may have come into contact with an infectious, contagious, or communicable disease may consent to medical care related to the diagnosis or treatment of the disease, if the disease or condition is one that is required by law or regulation adopted pursuant to law to be reported to the local health officer, or is a related sexually transmitted disease, as may be determined by the State Director of Health Services Public Health Officer
.
(b) A minor who is 12 years of age or older may consent to medical care related to the prevention of a sexually transmitted disease.

(b)
(c) The minor’s parents or guardian are not liable for payment for medical care provided pursuant to this section.

As stated, this modifies California Family Code Section 6926

(a) A minor who is 12 years of age or older and who may have come into contact with an infectious, contagious, or communicable disease may consent to medical care related to the diagnosis or treatment of the disease, if the disease or condition is one that is required by law or regulation adopted pursuant to law to be reported to the local health officer, or is a related sexually transmitted disease, as may be determined by the State Director of Health Services.
(b) The minor’s parents or guardian are not liable for payment for medical care provided pursuant to this section.

Aside from the blatant fear mongering and inflammatory language, ACHAMP is wrong on many counts. California already allows for minors to be treated without parent consent for sexually transmitted diseases, pregnancy, abortion, HIV testing and birth control.

Yes, California minors can seek treatment for STD’s, but if we try to amend the law to allow for prevention, it is a “pedophile protection act”.

I wonder how many members of ACHAMP waited until age 18 before participating in sexual activity with their peers? Or, do they allow former pedophiles (by their own definition) into their ranks? (see how your twisted logic works, ACHAMP?)

I’d like to say I’m surprised by ACHAMP. Unfortunately, I’m not. I do have hopes that someday these groups will abandon the cheap shots, inflammatory language and fear mongering. Heck, I have hope that they might focus the majority of their attention on making a better life for autistics.

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