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Alleged Cases of Vaccine Encephalopathy Rediagnosed Years Later as Dravet Syndrome

19 Aug

A case study released this week looks at 5 children who were considered to have vaccine encephalopathy caused by pertussis vaccinations. In this case study, all five children were found to have Dravet Syndrome, a genetic condition involving how the brain uses sodium.

The phrasing of “alleged cases” will likely draw some critique. Parents are very sensitive to the accusation that they didn’t see what happened, in this case seizures and regression following vaccination. Alleged in this case doesn’t challenge what the parents saw, but what it means. It appears that individuals with Dravert syndrome don’t get through childhood without regression (there don’t appear to be cases with the mutation and no syndrome in adults). In the words of the vaccine court, these individuals would have Dravert’s syndrome in any event, making it impossible to show that vaccines are the causation in fact.

Dr. Vincent Ianelli reports over at pediatrics.about.com that the cases include:

14-year-old mentally retarded boy with autistic features, who was a healthy infant until he got his vaccines when he was 7 months old
20-year-old with delayed development and autistic-like features who began having seizures right after getting vaccines at 2 months
2-year-old with a mild expressive speech delay who developed seizures after getting vaccines at age 4 months
4-year-old with “slowing development” who began having seizures after the six month vaccines
3-year-old regressed development and autistic-like features who began having seizures after getting vaccines at age 4 months

In these five case, genetic testing resulted in a diagnosis of Dravet Syndrome.

From Dr. Ianelli:

Dravet syndrome is a rare, genetic cause of encephalopathy that causes seizures that are hard to control and developmental delays.

Since fever is the usual trigger of the first seizure and subsequent seizures, it is important that children with Dravet syndrome get all of their vaccines, since natural infections will cause more fever and put them at risk for more seizures. In another study, “A retrospective study of the relation between vaccination and occurrence of seizures in Dravet syndrome,” only 16% of patients with Dravet syndrome had a vaccine related seizure as their first manifestation.

The researchers also state “that although vaccination might trigger an earlier onset of the presenting symptoms of Dravet syndrome, there is no evidence that the outcomes, in terms of subsequent seizure types or intellect, are any different between those patients with Dravet syndrome whose symptoms started within 2 days of vaccination and those whose symptom onset was not related temporally to vaccination.”

Here is the abstract:

Dravet syndrome is a rare epileptic encephalopathy linked to mutations in SCN1A (neuronal sodium channel ?1 subunit) and characterized by an onset in infancy with polymorphous seizure types and developmental decline. It was reported recently that a proportion of patients previously diagnosed with alleged vaccine encephalopathy might possess SCN1A mutations and clinical histories that enabled a diagnosis of Dravet syndrome, but these results have not been replicated. We present here the cases of 5 children who presented for epilepsy care with presumed parental diagnoses of alleged vaccine encephalopathy caused by pertussis vaccinations in infancy. Their conditions were all rediagnosed years later, with the support of genetic testing, as Dravet syndrome. We hope that these cases will raise awareness of Dravet syndrome among health care providers who care for children and adolescents and aid in earlier recognition and diagnosis.

This isn’t the first work linking alleged vaccine encephalopathy with Dravet syndrome in some cases. Last year a study in The Lancet, Effects of vaccination on onset and outcome of Dravet syndrome: a retrospective study (also summarized in Pertussis Vaccination Triggers Dravet Syndrome in Predisposed Children) came to the conclusion:

Vaccination might trigger earlier onset of Dravet syndrome in children who, because of an SCN1A mutation, are destined to develop the disease. However, vaccination should not be withheld from children with SCN1A mutations because we found no evidence that vaccinations before or after disease onset affect outcome.

The anchor author on that study has a previous study, De-novo mutations of the sodium channel gene SCN1A in alleged vaccine encephalopathy: a retrospective study. They found 11 of 14 patients with alleged vaccine encephalopathy had Dravet syndrome (SMEI). Here is the abstract:

BACKGROUND:
Vaccination, particularly for pertussis, has been implicated as a direct cause of an encephalopathy with refractory seizures and intellectual impairment. We postulated that cases of so-called vaccine encephalopathy could have mutations in the neuronal sodium channel alpha1 subunit gene (SCN1A) because of a clinical resemblance to severe myoclonic epilepsy of infancy (SMEI) for which such mutations have been identified.

METHODS:
We retrospectively studied 14 patients with alleged vaccine encephalopathy in whom the first seizure occurred within 72 h of vaccination. We reviewed the relation to vaccination from source records and assessed the specific epilepsy phenotype. Mutations in SCN1A were identified by PCR amplification and denaturing high performance liquid chromatography analysis, with subsequent sequencing. Parental DNA was examined to ascertain the origin of the mutation.

FINDINGS:
SCN1A mutations were identified in 11 of 14 patients with alleged vaccine encephalopathy; a diagnosis of a specific epilepsy syndrome was made in all 14 cases. Five mutations predicted truncation of the protein and six were missense in conserved regions of the molecule. In all nine cases where parental DNA was available the mutations arose de novo. Clinical-molecular correlation showed mutations in eight of eight cases with phenotypes of SMEI, in three of four cases with borderline SMEI, but not in two cases with Lennox-Gastaut syndrome.

INTERPRETATION:
Cases of alleged vaccine encephalopathy could in fact be a genetically determined epileptic encephalopathy that arose de novo. These findings have important clinical implications for diagnosis and management of encephalopathy and, if confirmed in other cohorts, major societal implications for the general acceptance of vaccination.

A recent study out of Germany took a bit more cautious interpretation: A retrospective study of the relation between vaccination and occurrence of seizures in Dravet syndrome. But the abstract does not address the question of whether outcome depends upon whether the first seizure is possibly vaccine related or not.

At least two cases of have been heard in the vaccine court claiming vaccine injury in children with Dravet syndrome. Both cases (here and here) were denied compensation.

More information about Dravet syndrome can be found at the NIH website, and dravet.org

Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders

30 Jul

One of the arguments for the mercury-causes-autism hypothesis is that there are subgroups more susceptible to harm from mercury exposures. It is argued that pink disease gives an example for such a susceptibility group.

Pink disease was a reaction to a teething powder which contained mercury. About 1 in 500 children exposed to the powder reacted with pink disease. Two points are important to keep in mind. First, the levels of mercury exposure from the powder were far greater than from vaccines. Second, the exposures were not the same for all children. Some parents would use more teething powder at a time. Some might use it for longer times. This makes it impossible to claim a susceptibility group as the children who showed signs of pink disease could very likely be the ones who had higher levels of mercury exposure.

In a paper just released, a team of researchers interviewed people who had a history of pink disease. Since that teething powder has been gone for decades, these individuals are now old enough to be grandparents.

This is, at best, a very strange paper. Consider these questions:

1) why aren’t they reporting a high autism prevalence in the people who had very high mercury exposures and who showed signs of pink disease? If there is a genetic susceptibility, why isn’t it seen in those with the greatest exposures?

2) why isn’t there a report of high autism prevalence in the children, just the grandchildren? My guess is that the response from some will be that the grandchildren received higher doses of mercury in vaccines than did their parents. Which again would beg the question of where is the high rate of autism in those exposed to the teething powders, especially those who developed pink disease.

The conclusions of this paper have some major logical hurdles to overcome, to say the least. And this is even before the methods are addressed. For example, this all hinges on reports by the grandparents. Not on an actual prevalence measure of the decendents.

If is already well established that the rise in mercury exposures from childhood vaccines was not the cause of the rise in autism prevalence estimates. It has always been clear that autism is not similar to mercury poisoning symptoms. The mercury hypothesis has been harmful, both to public health and the autism communities The time for papers which pose intriguing questions on this subject has past. Studies with weak methods and poor logic are irresponsible in today’s world.

Here is the pubmed link:
Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders.

Here is the abstract:

Pink disease (infantile acrodynia) was especially prevalent in the first half of the 20th century. Primarily attributed to exposure to mercury (Hg) commonly found in teething powders, the condition was developed by approximately 1 in 500 exposed children. The differential risk factor was identified as an idiosyncratic sensitivity to Hg. Autism spectrum disorders (ASD) have also been postulated to be produced by Hg. Analogous to the pink disease experience, Hg exposure is widespread yet only a fraction of exposed children develop an ASD, suggesting sensitivity to Hg may also be present in children with an ASD. The objective of this study was to test the hypothesis that individuals with a known hypersensitivity to Hg (pink disease survivors) may be more likely to have descendants with an ASD. Five hundred and twenty-two participants who had previously been diagnosed with pink disease completed a survey on the health outcomes of their descendants. The prevalence rates of ASD and a variety of other clinical conditions diagnosed in childhood (attention deficit hyperactivity disorder, epilepsy, Fragile X syndrome, and Down syndrome) were compared to well-established general population prevalence rates. The results showed the prevalence rate of ASD among the grandchildren of pink disease survivors (1 in 22) to be significantly higher than the comparable general population prevalence rate (1 in 160). The results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD.

Lack of association between autism and four heavy metal regulatory genes

30 Jul

One question that has been discussed for some time is the hypothesized role of mercury as a potential cause of autism. The basic idea is that administrative prevalences of autism went up coincident with increases in mercury exposure from vaccines. Plus, it was asserted that autism symptoms are similar to the symptoms of mercury poisoning (they aren’t).

Part of the mercury model held that there could be a genetic susceptibility to mercury in a subset of children.

Researchers at Vanderbilt University have explored the question by testing autistics for genes involved in how the body processes mercury. They did not find any link between the four genes they screened and autism.

Of course one could argue that some other gene or genes are important. One would then need to explain why mercury exposure from vaccines does not increase the risk of autism.

The paper:
Lack of association between autism and four heavy metal regulatory genes.

Here’s the abstract.

Neurotoxicology. 2011 Jul 20. [Epub ahead of print]
Lack of association between autism and four heavy metal regulatory genes.
Owens SE, Summar ML, Ryckman KK, Haines JL, Reiss S, Summar SR, Aschner M.
Source
Department of Pediatric Toxicology, Vanderbilt University School of Medicine, Nashville, TN, USA.
Abstract
Autism is a common neurodevelopmental disorder with genetic and environmental components. Though unproven, genetic susceptibility to high mercury (Hg) body burden has been suggested as an autism risk factor in a subset of children. We hypothesized that exposure to “safe” Hg levels could be implicated in the etiology of autism if genetic susceptibility altered Hg’s metabolism or intracellular compartmentalization. Genetic sequences of four genes implicated in the transport and response to Hg were screened for variation and association with autism. LAT1 and DMT1 function in Hg transport, and Hg exposure induces MTF1 and MT1a. We identified and characterized 74 variants in MT1a, DMT1, LAT1 and MTF1. Polymorphisms identified through screening 48 unrelated individuals from the general and autistic populations were evaluated for differences in allele frequencies using Fisher’s exact test. Three variants with suggestive p-values <0.1 and four variants with significant p-values <0.05 were followed-up with TaqMan genotyping in a larger cohort of 204 patients and 323 control samples. The pedigree disequilibrium test was used to examine linkage and association. Analysis failed to show association with autism for any variant evaluated in both the initial screening set and the expanded cohort, suggesting that variations in the ability of the four genes studied to process and transport Hg may not play a significant role in the etiology of autism.

Mark Geier: under scrutiny in more states

29 Jul

In Home Autism doctor here under scrutiny, The St. Louis Post Dispatch discusses investigations ongoing in Illinois:

A autism doctor who operates clinics in St. Peters and Springfield, Ill., has been suspended in two states for alleged mistreatment of children.

Dr. Mark Geier has been accused of misdiagnosing children with early puberty and treating them with high doses of Lupron, a drug used to suppress the hormone testosterone.

A hearing will be held on August 22nd to consider Dr. Geier’s license in the state of Illinois.

The Post Dispatch notes that Dr. Geier’s hypotheses and methods are far from generally accepted:

Dr. John Constantino, a psychiatry professor and leading autism researcher at Washington University, said Geier “understands the tools of science but has applied them in questionable ways” to justify specific treatments.

“There is currently no scientific evidence to support the clinical use of Lupron to treat autism in anything other than carefully conducted research trials,” Constantino said.

Autism News Beat in Castration doctor’s license now suspended in four states notes:

Dr. Mark Geier, the Maryland physician who chemically castrates disabled children, is still licensed to practice medicine in seven states, down from eleven. Four states have suspended or revoked his privileges since April 27, when his home state took action against him. Washington followed on May 26, then Virginia on June 9. On June 29, Indiana issued an emergency 90-day suspension, citing the Maryland action.

Another manufactured controversy

26 Jul

People are mad at Brian Deer. Really mad. His work uncovered a number of facts behind Andrew Wakefield’s research and business interests. These facts, these actions by Mr. Wakefield, led to many of the problems Mr. Wakefield has suffered in recent years. It is understandable that people are mad at Brian Deer. Andrew Wakefield is rather important to the groups who believe that vaccines caused an epidemic of autism. Mr. Wakefield is the researcher who took the parent’s hypothesis and put it into a prestigious medical journal. Mr. Wakefield has good credentials, and demeanor which makes for excellent TV footage. It is difficult to listen to him and think, “here is a man who lied to the world, caused a fear of the MMR vaccine and vaccines in general, and hid not only his faulty research, but other ethical lapses and shortcuts taken along the way”.

Difficult, but not impossible. The U.K.’s General Medical Council decided that contrary to what Mr. Wakefield had to say in his defense, he had misrepresented his work, he had taken many ethical shortcuts. While the GMC wasn’t interested in the vaccine fears promoted by the faulty, even fraudulent research, the GMC did find Mr. Wakefield guilty of ethics violations, research misconduct and dishonesty and had him struck off the U.K.’s medical register.

And, yes, it was the facts that led to the downfall of Mr. Wakefield. But, that doesn’t shield the messenger. In this case, Mr. Deer. Well, he was more than the messenger. He uncovered the facts as well as presented them.

One thing Mr. Wakefield’s supporters are mad about is the fact that Mr. Deer interviewed one parent using a pseudonym. He presented himself as “Brian Lawrence”, not “Brian Deer”. This is not news, having been in the press for at least 7 years. Much more to the point, it isn’t even a controversy, as I’ll show below. But, it is blog fodder. Apparently enough for Dan Olmsted of the Age of Autism to put out 3, count them 3, articles on the subject.

Since AoA have discussed Mr. Wakefield and Mr. Deer on their blog, it is not surprising that people came here looking to see if there would be a response to Mr. Olmsted’s pieces. There was a time when I read the Age of Autism blog, so perhaps, just perhaps, I was aware of the articles. In a comment on my piece, My comment to the IACC, I got the following

Jim Thompson, frequent commenter here, wrote:

Sullivan:

It seems that your interests parallel those on AoA with a major exception. Have you read this?

See “I was visited yesterday, Friday 28th November 2003 by Brian Lawrence…” at http://www.ageofautism.com/201…..dical.html

I used to get a lot of comments like that. Thread-jacking comments pointing me to one blog or another where some heated discussion was supposedly going on. I pulled the comment this time. In this case I felt it justified. The article it was attached to had nothing to do with the subject of the comment. In fact, to be blunt, I found it both ironic and insulting that the comment was attached to that piece.

Yes, my piece asking for research into better medical care for autistics is so like rehashing the “Brian Deer used a pseudonym” argument. If anything, this serves to show the differences between the Age of Autism and Left Brain/Right Brain. Differences which are becoming more pronounced with time. I’m pushing for a better future. They are rehashing their failures of the past.

Believe me, when I first heard that Brian Deer used a pseudonym in order to obtain an interview, I looked into the question. I asked a simple question: can a journalist lie to a source and if so, when?

The answer is, yes, a journalist can lie. As to when: there are two criteria that must be met. First, there must be a pressing need for the public to obtain the information. Second, the information is not expected to be obtainable by straightforward means.

Let’s consider the news investigation into Mr. Wakefield’s research. It is clear that there was a pressing need for the public to know whether the details were being accurately presented. Mr. Wakefield’s research was creating a fear of vaccines in general, and the MMR in specific. The vaccination rates were dropping to dangerously low levels, presenting a public health hazard. An investigation into the research, even if it required suberterfuge, was warranted, as long as the second criterion was met: there must be a valid expectation that the information would be obtainable by straightforward means.

OK, so point one is met. Let’s look at point two. Mr. Olmsted gives us insight into that question himself:

Deer had written a number of critical articles about parents’ claims of vaccine injury, and if he gave his real name, he doubtless feared, Child 2’s mother would not agree to talk to him. Once she checked his blog, she would be more likely to kick him out of the family home than sit still for what turned into a six-hour inquisition.

Mr. Deer is also described by Mr. Olmsted as being considered at the time of the interview as “a journalist notoriously hostile to people who claimed that vaccines had injured their children. ”

Clearly, the second point is met as well: the information was not expected to be obtainable by straightforward means

Mr. Olmsted is, no doubt, quite aware of the ethics of such methods. The Society of Professional Journalists have the following rules (emphasis added):

Journalists should:
— Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.
— Diligently seek out subjects of news stories to give them the opportunity to respond to allegations of wrongdoing.
— Identify sources whenever feasible. The public is entitled to as much information as possible on sources’ reliability.
— Always question sources’ motives before promising anonymity. Clarify conditions attached to any promise made in exchange for information. Keep promises.
— Make certain that headlines, news teases and promotional material, photos, video, audio, graphics, sound bites and quotations do not misrepresent. They should not oversimplify or highlight incidents out of context.
— Never distort the content of news photos or video. Image enhancement for technical clarity is always permissible. Label montages and photo illustrations.
— Avoid misleading re-enactments or staged news events. If re-enactment is necessary to tell a story, label it.
— Avoid undercover or other surreptitious methods of gathering information except when traditional open methods will not yield information vital to the public. Use of such methods should be explained as part of the story
— Never plagiarize.
— Tell the story of the diversity and magnitude of the human experience boldly, even when it is unpopular to do so.
— Examine their own cultural values and avoid imposing those values on others.
— Avoid stereotyping by race, gender, age, religion, ethnicity, geography, sexual orientation, disability, physical appearance or social status.
— Support the open exchange of views, even views they find repugnant.
— Give voice to the voiceless; official and unofficial sources of information can be equally valid.
— Distinguish between advocacy and news reporting. Analysis and commentary should be labeled and not misrepresent fact or context.
— Distinguish news from advertising and shun hybrids that blur the lines between the two.
— Recognize a special obligation to ensure that the public’s business is conducted in the open and that government records are open to inspection.

As an aside: consider the rules above and Mr. Olmsted’s reporting on autism. “Distinguish between advocacy and news reporting”. “Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.” and more…

Back to the question of whether it is permissible to use “surreptitious methods of gathering information” in obtaining a story. Aside from these being the published rules of the Society of Professional Journalists, Mr. Olmsted is likely well aware of the method. Back when he was at UPE, Mr. Olmted’s journalism partner on what may have been his real intro into medical news reporting (a series on Lariam) was a gentleman named Mark Benjamin. Mr. Olmsted included Mr. Benjamin in the dedication of his book, “The Age of Autism”.

I believe that this is the same Mark Benjamin who went on to write a series for Salon.com called “Getting straight with God“, a “four-part investigation into the Christian netherworld of “reparative therapy,” a disputed practice to convert gays and lesbians into heterosexuals. ”

How did Mark Benjamin, a straight man, obtain the information he needed for the story? ” I told Harley I was gay, although I am straight and married. I used a fake name. ”

He flat out admits, he lied:

When I arrived in Levy’s office, I was asked to fill out roughly 15 pages of questions about myself and my family. Mostly the questions centered on how I got along with my folks. In a section about my problems, I wrote “possible homosexuality.” The fact is, I’m straight, I’m married to a woman, and I have a 3-year-old daughter and a son due in October. I wrote on the form that that I was married with a kid. But I lied and said I was also living a secret life, that I harbored homosexual urges.

This is why I’m calling this out as a manufactured controversy. Brian Deer interviewed someone using a pseudonym. He misrepresented himself. It happens in journalism. It not only happens, it is clearly allowed under specific circumstances. As a journalist, a journalist whose colleagues have used the same techniques, Mr. Olmsted should be quite aware of this.

et

Generation Rescue: taking another small step away from the brink?

14 Jul

Generation Rescue has over the years been one of the more vocal promoters of the vaccines-cause-autism notion. Like any organization, they have changed over the years and their website reflects that. Their website started out with the title “Autism Mercury Chelation” and a very simple (and wrong) statement:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.

Of course, later during the early years of Jenny McCarthy, when Generation Rescue became “Jenny McCarthy’s autism organization. By this point, GR had a prominent link on the main page to “vaccines”. This included a page with Generation Rescue recommended vaccine schedules. Their “favorite” being a schedule that offered no protection against many diseases, including measles, mumps, rubella, pertussis, diptheria and tetanus.

They had a page of “science”, including statements claiming that Andrew Wakefield’s 1998 paper linked MMR to autism (a position Mr. Wakefield has tried to distance himself from in the past few years):

“This study demonstrates that the MMR vaccine triggered autistic behaviors and inflammatory bowel disease in autistic children.”

They had a science advisory board, which included S. Jill James, Ph.D., Richard Deth, Ph.D., Woody R. McGinnis, M.D. and Jerry Kartzinel, M.D.. Not exactly heavy hitters, but at least a couple of people who actually publish in journals.

Times have changed again. The website is revamped. And vaccines seem to be much less prominent. For example, in the current version of the Generation Rescue website, I can’t find “recommended” vaccine schedules (they refer people to Dr. Bob Sears). A search for Wakefield shows he is only mentioned once “Studies by researchers: Horvath, Wakefield, Levy, and Kushak highlight a myriad of gut problems present in children with autism, including abnormal stool (diarrhea, constipation), intestinal inflammation, and reduced enzyme function”. The science advisory board is down to one person (Jerry Kartzinel) and an unnamed “cohesive group of professionals committed to healing and preventing autism”.

Sure, it’s still not a place I would recommend to anyone, especially a parent who just found out their kid is autistic. But just a few short years ago the trajectory was increasing with the vaccine discussion, not decreasing.

Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

11 Jul

The idea that mercury causes autism has been around for over 10 years now. The data have been overwhelmingly against the hypothesis. The risk of autism doesn’t increase with thimerosal exposure from vaccines (e.g. Prenatal and infant exposure to thimerosal from vaccines and immunoglobulins and risk of autism and a number of other studies.) There are still groups which promote the idea, and there are still studies being performed. Case in point, a new study: Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

The idea is straightforward and one that has been used to promote the idea of vaccine/thimerosal causation. If baby teeth have a different level of mercury, that might say something about whether the child was (a) exposed to high levels of mercury and/or (b) whether the child was more or less able to excrete mercury.

Here is the abstract of the study:

To examine possible links between neurotoxicant exposure and neuropsychological disorders and child behavior, relative concentrations of lead, mercury, and manganese were examined in prenatal and postnatal enamel regions of deciduous teeth from children with Autism Spectrum Disorders (ASDs), high levels of disruptive behavior (HDB), and typically developing (TD) children. Using laser ablation inductively coupled plasma mass spectrometry, we found no significant differences in levels of these neurotoxicants for children with ASDs compared with TD children, but there was marginal significance indicating that children with ASDs have lower manganese levels. No significant differences emerged between children with HDB and TD children. The current findings challenge the notion that perinatal heavy metal exposure is a major contributor to the development of ASDs and HDB.

Basically, the levels of mercury and lead were the same for autistic kids as for non-autistic kids. There may be lower levels of manganese.

This isn’t the strongest, nor is it the last, study on mercury and autism. But, yet again, the evidence comes in against the idea that autism is caused by mercury.

The Measles Initiative and the myth of mild measles

9 Jul

Advance warning: this post has basically nothing to do with autism. It is about a group called the Measles Initiative. I found the site for the Initiative while looking for information about the effects of measles in the non-developing world. There have been outbreaks in France, for example, in recent years. Large enough outbreaks that people have died.

Here is a figure from a presentation given by Daniel Floret of the Claude Bernard University Lyon and Chairman of the French NITAG and of the French Working group on measles elimination.

Yes, even in modern times, in developed countries like France, measles can kill. Unfortunately, segments of the autism communities play an active role in disseminating the misinformation about measles (downplaying the risk) and the vaccine (inflating the risk).

One thought: you’ve probably seen groups and people on the net claiming that the developing world doesn’t need vaccines. Clean water and/or improved sanitation they say, will suffice. Of course, we would all like to see better water and sanitation worldwide. But next time you see that argument posed, ask yourself, “Has this group ever advocated for or raised money to improve the water or sanitation anywhere?”

In the past 10 years there has been a major initiative to increase vaccination rates in Africa. This has had a major impact, with measles deaths dropping by 90%. The World Health Organization announced the success of this effort in a press release, Measles deaths in Africa plunge by 91%.

Measles deaths in Africa fell by 91% between 2000 and 2006, from an estimated 396 000 to 36 000, reaching the United Nations 2010 goal to cut measles deaths by 90% four years early. The spectacular gains achieved in Africa helped generate a strong decline in global measles deaths, which fell 68% worldwide – from an estimated 757 000 to 242 000 – during this period.

Unfortunately there hasn’t been a strong focus on measles reduction in South Asia, and measles deaths have not changed. The following image shows that as the number of deaths have dropped in Africa, they have not dropped in south Asia.

It really bothers me that so much of the bad information about vaccination comes from a segment of the autism communities. It bothers me that this misinformation puts people at risk. There is a real risk of injury and death, even in the developed world as we can see from the data from France. Measles vaccines work. They prevent deaths. And, while I haven’t gone into it in this discussion, the MMR-causes-autism notion has been tested carefully and it is wrong.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

8 Jul

The title for this article should have a question mark, “A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population?”. The paper’s faults have already been discussed, but I was unable to sleep earlier this week and I decided to graph some of the data. For some reason, even this didn’t help me to sleep.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

here is the abstract:

The reason for the rapid rise of autism in the United States that began in the 1990s is a mystery. Although individuals probably have a genetic predisposition to develop autism, researchers suspect that one or more environmental triggers are also needed. One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted

The author made a number of strange decisions in this paper, as already discussed (and here, here, and here). First, she chose “autism prevalence” for her title when what she discussed was a combination of autism and speech or language impairment. So, I will put quotes around “autism” in “autism” prevalence, as this isn’t a real autism prevalence. Second, she chose a vaccination rate that is based on 100% completion of the 1995 vaccine schedule. This rate was changing notably, as she starts the study period when the schedule was introduced. So, as states and pediatricians and parents adopted the schedule, the “vaccination rate” as defined by the author increases notably. Again, I will use quotes around “vaccination rate” as this is an odd definition of the term.

Here is the main result of the paper:

The results suggest that if a given U.S. state has a 1% higher vaccination rate than another U.S. state, then the state with the higher vaccination rate might have, on average, a 1.7% higher prevalence of autism or speech disorder

With more than 4 × 10^6 babies born in the United States each year, this finding translates into an additional 680 children (= number of children [4 × 10^6] × coefficient [0.017] × 1% [0.01]) exhibiting autism or speech disorders for every 1% rise in children receiving the 4:3:1:3:3 series of vaccinations by age 2 years.

To put all this simply, the author is claiming that if there is some baseline prevalence of “autism” if the “vaccination rate” is 0, say 5%, then the prevalence rate of “autism” would be 5+1.7=6.7% if the “vaccination rate” were 100%.

One would expect that as “vaccination rates” go up or down, the “autism rate” would go up or down with this proportionality factor. It doesn’t happen that way, though.

The author used household income and ethnicity (%Hispanic, % African America, %Other) as variables in the model. Let’s assume that those numbers don’t change significantly during the time period considered for each state (the author appears to make this assumption, so let’s go with it.)

I took a look at the first 4 states in the table (listed alphabetically): Alabama, Alaska, Arizona and Arkansas. If anyone has a particular interest in any given state, I’ll graph them up (or you can do it yourself).

Here is the “vaccination rate” as a function of study year:

As Prometheus has noted, this rate shows the biggest change in the first two years. Given the result of the study, we should see the biggest changes in “autism rate” in these two years. But we don’t. I took the data for the “vaccine rates” as a function of time and applied the 1.7% increase in “autism” prevalence the author states as a result. Let’s look at these states and what the model predicts and what the actual data showed (click any graph to make bigger):

Alaska:

Alabama:

Arizona:

Arkansas:

The data not follow the predicted trends. Not even close. Not only that, but for two states, the predicted values are higher than the reported values (red curves higher than black) while for the other two states the opposite is seen.

This isn’t a case of “I don’t know how the analysis came to the conclusion but I don’t think it is right” type of paper. This is a case of “how did this get past an editor and referee” type of paper. It is just that clearly wrong.

Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care

29 Jun

With apologies for opening the subject of the Amish and autism once again, a recent paper in the journal Pediatrics explores vaccination and the Amish: Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care. Seth Mnookin has already discussed this at The Panic Virus at PLoS blogs in Anecdotal Amish-don’t-vaccinate claims disproved by fact-based study.

What is worrisome here is the fact that the nderimmunization amongst the Amish is resulting from parental fears. In a very different study from 2001, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, most Amish parents who chose to not vaccinate were citing availability and convenience rather than fear as the reason.

To repeat–in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.

Given that the “Amish Anomaly” notion seems destined to linger on, I have written up another summary of the history and the facts of the story.

Dan Olmsted, now the owner of the Age of Autism, was once an editor for UPI. It was during his UPI time that he took on the autism/vaccine question that has since dominated his professional life. Back in 2005 he ran a series of stories which investigated the proposed link between autism and vaccines and, in specific, mercury. It was right around the time that the David Kirby/Lyn Redwood book “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.” was published. This was likely the high water mark for the public’s acceptance of the vaccines-causation idea.

One of the ideas that Mr. Olmsted explored was that of the Amish. He started with the belief that they don’t vaccinate and set out to investigate whether this correlated with a lower autism prevalence. The idea of the Amish being a largely unvaccinated population was set out years earlier. David Kirby describes in Evidence of Harm how Lyn Redwood of SafeMinds discussed this in a presentation she made to congress in the year 2000.

Mr. Olmsted described his investigation starting in a piece, The Age of Autism: Mercury and the Amish . There was plenty of data even then which Mr. Olmsted could have considered which went against his hypothesis. Since then even more data has mounted against the idea.

And, yet, it persists. Often the “Amish don’t vaccinate and they don’t have autism” story pops up in internet discussions following news stories. Books have incorporated the idea. Of course it ends up in alternative medicine books on autism such as Kenneth Bock’s “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies”. The idea can be found in other boos as well, including “Timeless Secrets of Health and Rejuvenation” (2007) and “Cry for Health: Health: the Casualty of Modern Times” (2010). Again, this is a reason to revisit the debunking of this myth. The myth lives on, even in the face of facts.

In his 2005 UPI article, Mr. Olmsted started out with the assumption that the Amish don’t vaccinate. He set out to see if he could find autistics amongst the Amish, but didn’t look into the vaccination question with any depth:

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn’t expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule.

As is well known now, the Amish do not have a religious exemption from the vaccine schedule. They do not have a religious prohibition against vaccination.

This was something Mr. Olmsted could easily have confirmed at the time. He might have checked the 1993 book Amish Society by John Andrew Hostetler (1993), in which he would have found the following statements about medicine:

“Some are more reluctant than others to accept immunization, but it is rare that an Amish person will cite a biblical text to object to a demonstrated medical need…” ….””If the Amish are slow to accept preventive measures, it doesn’t mean they religiously opposed to them…”

He might have made more than a cursory effort to contact people at the Clinic for Special Children in Strasburg, Pennsylvania. The Clinic, aside from serving special needs children (including autistics) runs vaccine clinics and has for some many years. In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call. No mention is given why Mr. Olmsted didn’t go to the clinic in his visits to Lancaster County

Had Mr. Olmsted done so, he would have known that this statement, again from his 2005 piece, was incorrect when he relied on a source who claimed a very low immunization rate:

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

He also made a misleading statement:

When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

What is left vague in this statement was the fact that the 51 pregnant women were those who contracted German measles. Not surprising that those infected were largely unvaccinated. This doesn’t tell us what fraction of the whole population were vaccinated though, and is quite misleading.

One might wonder why Mr. Olmsted was not aware that the Amish participated in the eradication of Polio. Conversely, he might have questioned how polio was eradicated if the Amish did not vaccinate. Here is a March of Dimes photo from a 1959 vaccine clinic:


(from March of Dimes By David W. Rose, 2003)

An article available to Mr. Olmsted at the time of his 2005 article, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, discussed the reasons why Amish parents did not vaccinate their children. While some did cite “religious or philosophical objections”, the majority said they would vaccinate if “vaccination were offered locally”:

Among Amish parents who did not vaccinate their children, only 25% (13 of 51) identified either religious or philosophical objections as a factor; 51% (26 of 51) reported that vaccinating was not a priority compared with other activities of daily life. Seventy-three percent (36 of 49) would vaccinate their children if vaccination were offered locally.

Since Mr. Olmsted’s original series, more data has come in refuting the “Amish Anomaly”. In 2006, a paper was published: Vaccination usage among an old-order Amish community in Illinois. Here is the abstract:

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and that of their children. In this survey, the Amish do not universally reject vaccines, adequate vaccination coverage in Amish communities can be achieved, and Amish objections to vaccines might not be for religious reasons.

It is clear that the Amish do vaccinate and that it would have been simple for Mr. Olmsted to find accurate information about this at the time. It was certainly more difficult for Mr. Olmsted to ascertain what the prevalence of autism might be amongst the Amish. He made the assertion: ““there are only a few of them [autistic Amish] in the United States”.

Of the “few” Amish autistics Mr. Olmsted could find, six were being treated by Lawrence Leichtman. The children were unvaccinated but the doctor who reported them to Mr. Olmsted attributed their autism to high mercury levels. This is not surprising as Dr. Leichtman was one of the early alt-med practitioners working in autism, being part of the secretin fad of the 1990’s. One wonders if the “elevated mercury” levels in these children would stand up to tests performed by qualified medical toxicologists.

Another six autistic Amish, nearly under Mr. Olmsted’s nose at the time of his article, were being treated by the Clinic for Special Children in Lancaster, PA. Six children who had PDD or Autism were at that time being treated and written up for a study in the New England Journal of Medicine. They were missed by Mr. Olmsted. He has since argued that these children are syndromic and, thus, somehow not as relevant to his story. Those arguments aside, this was a clear miss for Mr. Olmsted.

In 2010, a study was presented at IMFAR: Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A preliminary number of 1 in 271 is a far cry from “little” or no autism amongst the Amish. Given the limitations of working within a community like the Amish, it is surprisingly close to the 1 in 100 often cited as the autism prevalence estimate for the general U.S. population. The study was being prepared for submission when I checked with the lead author last fall. It will be interesting to see what the final number is obtained for the prevalence.

The IMFAR abstract was available, I believe, before Dan Olmsted’s book, The Age of Autism, went to press. Instead of including this information, he chose to paint autism as rare amongst the Amish using quotes he obtained in 2005 and unsupported statements like, “the most aggressive possible count of autistic Amish comes to fewer than 20 cases, which would give us a rate of no more than 1 in 10,000.” It seems unlikely, given the low sales figures, that The Age of Autism will be reprinted. If that should happen, I wonder if Mr. Olmsted will correct this misinformation. The facts are clearly against him. Certainly, his review of internet sources and cursory tour of Lancaster County hardly counts as “aggressive”.

The “Amish don’t vaccinate and don’t have autism” idea was never very well supported. Now, with more data in, it is just plain wrong. It would be a good and honorable thing for Mr. Olmsted himself to make this clear. Good. Honorable. And not going to happen.

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