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A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud

16 Oct

Andrew Wakefield and Brian Hooker have been making claims that the CDC are involved in misconduct in autism research. In case you haven’t followed the story, it basically goes like this:

1) the CDC planned on a study of MMR and autism using the MADDSP data.

2) That the CDC created a research plan.

3) That the CDC found results they didn’t want to report: an calculated odds ratio for African American boys. So the CDC team allegedly deviated from that plan and didn’t report that result.

4) That the CDC introduced a new analysis after the plan: that they would include birth certificate data.  While the CDC rationale for this new analysis was to provide more data (confounding variables) for the analysis, the allegedly real reason was to dilute the sample set and make statistically significant results disappear.

Here’s a paragraph from one of the press releases about the Hooker study:

According to Dr. Thompson’s statement, “Decisions were made regarding which findings to report after the data was collected.” Thompson’s conversations with Hooker confirmed that it was only after the CDC study coauthors observed results indicating a statistical association between MMR timing and autism among African-Americans boys, that they introduced the Georgia birth certificate criterion as a requirement for participation in the study. This had the effect of reducing the sample size by 41% and eliminating the statistical significance of the finding, which Hooker calls “a direct deviation from the agreed upon final study protocol – a serious violation.”

Or so goes the story. But as is often the case with Andrew Wakefield and Brian Hooker, the facts don’t match the claims.

In a recent video, Mr. Wakefield shows us the research plan the CDC had drafted.  One red flag with Mr. Wakefield’s approach so far has been how he tries to tightly manage the flow of information.  He has not shared the analysis plan in total and only now has he provided us with a couple screenshots.  Begs the question: what are they hiding?

Here’s one screenshot from that video. This one is where he gets the idea that the plan was to report race for the entire sample.

draft analysis plan screenshot 2

Here’s the full text, in case that’s difficult to read:

Statistical Analysis

We will use conditional logistic regression stratified by matched sets to estimate the odds ratios for association between age at MMR vaccination and autism. In the main analyses, we will include all autism cases.

Potential confounding variables will be evaluated individually for their association with the autism case definition. Those with an odds ratio p-value < 0.20 will be included as covariates in a conditional logistic regression model to estimate adjusted odds ratios for the association between age at vaccination and autism. The only variable available to be assessed as a potential confounder using the entire sample is child’s race. For the children born in Georgia for whom we have birth certificate data, several sub-analyses will be carried out similar to the main analyses to assess the effect of several other potential confounding variables. A recent case control study (CDC, 2001) carried out with a subset of the autism cases from this study found that age matched cases and controls differed on several important background factors including maternal age, maternal education, birth type, and parity. The variables that will be assessed as potential confounders in this study will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education. (See Table 2 for how variables will be categorized.)

There are two interesting points in the above.  First, the sentence Mr. Wakefield highlights doesn’t say what he claims.  The only variable available to be assessed as a potential confounder using the entire sample is child’s race. The plan doesn’t say that they will test and report race.  Consider the context: this is a section of the plan called “statistical analysis”. Put in context with the entire paragraph, this sentence is clear: the full dataset is limited because it only has one variable available.

The CDC didn’t deviate from the plan when they didn’t report on race for the total sample because that was never in the plan.  If you want more evidence of this, the end of the paragraph says “See Table 2 for how variables will be categorized”.  Table 2 is titled “Descriptive Statistics for Children Born in Georgia with Birth Certificate Records”.  The variables will be categorized in the birth certificate sample.

The second interesting point from the paragraph Mr. Wakefield has shown us is this: the CDC plan included a birth certificate sample.

Here’s a screenshot of the analysis plan from that new video, showing the front page of the analysis plan:

draft analysis plan screenshot

Shown with this voice over by Mr. Wakefield (while the screenshot above is shown going up in flames…very dramatic)

“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”

So, in case you were thinking, “that’s an analysis plan, how do we know it’s the analysis plan”, well, you have Mr. Wakefield’s word on it.  This is the “approved analysis plan” that the CDC allegedly had to revise.

What interests me about this as that’s the same plan that I have and was preparing to write about.  It’s nice now to be able to be able to say that this is, indeed, the same document that Mr. Wakefield and Mr. Hooker are working with.

We’ve already seen two big mistakes by the Wakefield/Hooker team: first that the analysis plan doesn’t include a call to report on race separately in the total sample (the group without the birth certificates), second that the CDC “approved analysis plan” included analysis of a subset with birth certificate data.

So, what were the objectives of the study as in the plan?

Objectives:
We did not have information regarding onset of symptoms for most cases in this study and this limited our ability to do certain types of analyses such as case series analyses. In addition, a totally unexposed group (i.e., never received the MMR vaccine or other measles containing vaccine) was not available since measles, mumps, and rubella vaccination are required for school attendance in Georgia. The following objectives are considered the primary objectives for this study.
1) To determine if case children were more likely than their matched controls to have been vaccinated with MMR before 36 months of age. DSM-IV criteria for autism require that onset of symptoms occur before 36 months of age. Therefore, the 36-month cut-off is one that by definition can be used to classify a definitely “unexposed” group.
2) To determine whether there was a difference between cases and controls in the proportion of children exposed to their first dose of MMR vaccine before 18 months of age. This objective is based on the research that suggests the timing of first parental concern for the development of autism appears around 18 months of age (Taylor et al, 1999). In addition, Cathy Lord has reported that the range of first parental concern for regression was between 12 and 23 months of age with a mode of 19-21 months.
3) To determine whether the age distribution for receipt of the MMR vaccine differs between cases and controls.

They showed the data for the 36 and 18 month cutoffs.  Age distribution was covered in Table 2.

Analysis of Autism subgroups

The IOM (2001) specifically recommended additional research regarding autism subgroups and MMR. We will examine several subtypes of autism in this study. Data from the Metropolitan Atlanta Congenital Defects Program will be included in the sub-analyses to identify particular sub-groups. The following sub-group analyses will be conducted:

1) Analyses excluding cases with an established cause for autism or a co-occurring condition suggesting an early prenatal etiology (e.g., tuberous sclerosis, fragile X, or other congenital/chromosomal anomalies.)

We propose to conduct a case-control sub-analysis looking at cases without an established or presumptive cause for autism, such as tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies. The purpose of doing this analysis is to create a more homogeneous case group that may be more likely to be impacted by the timing of the MMR vaccine. The objectives from the primary analyses will be replicated in this sub-analysis.

2) Analyses of Isolated versus Non-isolated Autism.

Isolated autism cases are cases with no other co-morbid developmental disability while non-isolated cases do have a co-morbid developmental disability. Previous research suggests that the majority of non-isolated cases have a co-existing developmental disability of mental retardation (CDC, 2001). Both isolated and non-isolated cases will be compared separately to controls. The objectives from the primary analyses will be replicated in this sub-analysis.

3) Analyses examining Gender Effects

Males are at substantially higher risk for autism and may be more vulnerable to the exposure associated with the MMR vaccine. We will analyze males and females separately and replicate the main objectives of the primary analyses as well as examine the potential confounders available from Georgia birth certificates.

4) Analyses excluding autism cases with known onset prior to 1 year of age.

For a subset of autism cases, we were able to identify the timing of parental concern. This sub-analysis will exclude all cases excluded with an established or presumptive cause for autism (e.g., tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies.) and children for whom we have been able to identify first parental concern prior to 12 months of age.

Just in case anyone reading this is one of the few that has been following Mr. Wakefield’s video releases: in a new video Mr. Wakefield is trying to claim that the isolated autism subanalysis was not done.  Except that it was.  They made a minor change to autism without MR, which gave essentially the same result that Mr. Wakefield claims was hidden.

Destefano_table_4 highlighted

Autism without MR has an odds ratio of 2.45 with a 95% confidence interval of 1.20 to 5.00.  I’ll write about this new video soon as there’s much sleight of hand going on, but Mr. Wakefield is claiming that a result of odd ratio = 2.48 with confidence interval of 1.16 to 5.31 was not reported.  Besides ignoring the fact that the data were reported by the CDC, Mr. Wakefield ignores the fact that these are raw-data results.  Total sample, unadjusted analysis.  In the adjusted analysis the result does not suggest an association.

But, getting back to the main point: the claims of fraud are just not founded on fact.  The two main claims of “fraud” are just wrong.  The analysis plan did not state that they would do a subanalysis by race for the total sample.  The addition of the birth certificate data is in the plan, not in some sort of revision.  And Mr. Wakefield and Mr. Hooker knew this.

I am reminded of a quote from an ABC News article recently

“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.

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By Matt Carey

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Brian Deer: Wakefield ‘MMR mother’ fabricated injury story

12 Oct

Brian Deer, the reporter who broke the story on Andrew Wakefield’s conflicts of interests, has a new story on his website:

Wakefield ‘MMR mother’ fabricated injury story
In a newly-released judgment from England’s Court of Protection, a prominent anti-vaccine campaigner is branded a manipulative liar. Brian Deer reports

The story is quite sad. And while it presents an extreme case, there are themes here which have been seen elsewhere.

A British “mother warrior”, who claimed that the combined measles, mumps and rubella vaccine is responsible for autism, fabricated accounts of injury to her son and persistently lied about his health, a London court has ruled.

The mother, “E”, who cannot be named so as to protect her son’s identity, concocted a story about how he reacted to an MMR shot in January 1991. She said that he became distressed with fever and then lost speech, eye contact and play immediately following his three-in-one at the age of 18 months.

She claimed that he screamed after immunization, and that this was followed by six hours of convulsions and vomiting, and then six months in a “persistent vegetative state”.

But in a landmark 45,000-word judgment, which entered the public domain last week from the Court of Protection, the mother was dismissed as a manipulative liar. It was found that she had made up the story so as to bring attention to herself and had plied her developmentally delayed son with a mass of sometimes bizarre “biomedical” interventions so as to gain “total control” over his life.

Mr. Deer’s story goes on (Wakefield ‘MMR mother’ fabricated injury story) with more details. Many more details are in the court’s judgment which is linked to at the end of Mr. Deer’s article. I won’t copy it all here, I encourage you to read it there.

Here’s a paragraph from the judgment that goes to the evolution of the story surrounding the day in which the child received the MMR vaccine. The fact that the allegation of a vaccine reaction was not made until is important as this was 10 years after the event. Also worth noting is that this individual showed developmental issues well before the MMR vaccine.

After the allegation of an adverse reaction to MMR was eventually recorded in 2001, it became more dramatic in subsequent accounts. Thus, in 2001 the description was: “Distressed after injection. Had fever. Eyes glazed, dilated and fixed.” E’s account became more florid over time, with references to screaming, jolting, spasming and a persistent vegetative state. In her final statement she said that: “M died within six hours of the MMR.” In the witness box she gave a full account of the events on the day on which the MMR was administered and M’s reaction to it. E acknowledges in her final statement that she uses certain words and phrases in her own particular way. For example, for her the phrase “vegetative state” means “slipping in and out of consciousness, not responding and appearing lifeless.” And her use of the word “died” to describe what happened to M means “stopped breathing and lost consciousness”

I’d be very interested when “died” became part of the story. Reading the above I was very much reminded of Jenny McCarthy’s statement that her son died from vaccine injury. Ms. McCarthy was referring to her son’s very serious seizures. The timeline has never been made clear, but those seizures appear to have began a year or more after her son’s vaccinations. But her vague choice of words led many to claim that her son “died” shortly after vaccination.

As to “E”‘s experience taking her son to the Royal Free Hospital:

Throughout the hearing, E insisted that M had been given the diagnosis of autistic enterocolitis or leaky gut syndrome and alleged that some of the Royal Free medical records must be missing. I reject that assertion. I find that not even the Royal Free team, who at that time were leading the way and postulating the link between autism and a form of colitis, found any evidence in 2001 of significant gut disorder in M. In his case no diagnosis of autistic enterocolitis or leaky gut syndrome was ever made.

There’s a great deal more, in both Mr. Deer’s story and the 92 page judgment.

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By Matt Carey

Citizen Autistic screening October 19 in Redwood City, California

11 Oct

A documentary, Citizen Autistic, will be shown on October 19th in Redwood City, California. The event page at BrownPaperTickets.com can be found here: Citizen Autistic Screening in Redwood City, October 19.

Citizen Autistic Trailer from William Davenport on Vimeo.

Here is a description of the event:

The documentary Citizen Autistic will be shown on October 19, 2014, 5-7 PM, at the Unitarian Universalist Fellowship of Redwood City, at 2124 Brewster Avenue, Redwood City, CA 94062.

Director William Davenport will be present, as will some of the documentary’s interviewees. Ticket proceeds will benefit the Autistic Self-Advocacy Network, http://www.autisticadvocacy.org.

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By Matt Carey

ABC News covers Brian Hooker’s study: Hooker “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

10 Oct

A recent ABC story (How a Now-Retracted Autism Study Went Viral — Again) discussed Brian Hooker’s flawed and retracted study.  Here are the first few paragraphs:

An autism study that was slammed by experts and retracted this week by its publisher is still alive and well on the Internet, thanks to what critics are calling a perfect storm of lax publishing standards.

Experts say the lone study author played fast and loose with statistics to show a link between autism and the MMR vaccine for measles, mumps and rubella, some experts going as far as saying that the author deliberately did this, but the dubious results took off online anyway, quickly going viral.

“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.

Good to see this coming from outside the blogOsphere. Let’s pull one sentence out for emphasis, shall we?

She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

When people ask about data manipulation and the MMR/Autism story, there it is.

The story continues at ABC: How a Now-Retracted Autism Study Went Viral — Again. Included in the story is a CDC statement that I’ve seen before but warrants quoting here.

Centers for Disease Control and Prevention statement regarding Brian Hooker’s reanalysis of its 2004 study Aug. 27, 2014

There was no cover up. The study did not find any statistically significant associations between age at MMR vaccination and autism. In the CDC paper, similar proportions of case (children with autism) and control children (no autism) had been vaccinated before 18 months or before 24 months. While slightly more children with autism (93.4%) than children without autism (90.6%) were vaccinated between 24 and 36 months, this was most likely a result of immunization requirements for preschool special education program attendance in children with autism.

As this topic was so sensitive and complex, the CDC study published in Pediatrics in February 2004 underwent clearance at CDC, the usual process of internal review for scientific accuracy that all CDC papers undergo. In addition, before submission to the journal, the manuscript was reviewed by five experts outside of CDC and an independent CDC statistician (see acknowledgements section of the paper for specific names). Finally, all reputable journals undergo peer-review of all submitted papers before final publication.

The 2004 CDC study was designed as a case-control study. This means, children with autism (cases) were specifically identified, and children without autism (controls) were identified to be similar to the children with autism in other respects. When data are collected in a specific way for a specific type of statistical analysis (a case-control study in this instance), using those data in a different type of analysis can produce confusing results. Because the methods in Dr. Hooker’s reanalysis were not described in detail, it is hard to speculate why his results differed from CDC’s.

Since the 2004 Pediatrics paper, CDC has conducted additional studies of vaccines and autism. In 2004 the Institute of Medicine reviewed published and unpublished findings from the US and other countries and concluded that there was no association between MMR vaccination and autism. In 2011, another IOM committee reviewed additional research, and once again found that evidence favored rejection of this association.

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By Matt Carey

Jude Mirra’s mother takes the stand in murder case

9 Oct

Jude Mirra was an autistic 8 year old.  Was as in he’s dead.  His mother killed him with a fatal overdose of drugs and alcohol.  His mother, Gigi Jordan, is now on trial for his murder.

If you have followed this story, you likely know what a strange story she has told.  At one point someone (presumably associated with her) posted multiple documents online (gigijordanbail.com as I recall).  Rather than focus on her account, let’s consider the facts.  She killed her son.  The only question now appears to be whether she forced the drugs into his mouth or not.  From the New York Times, In Testimony, Mother Who Killed Son, 8, Denies She Forcibly Drugged Him:

The police found the boy, Jude Mirra, dead in a bed at the Peninsula Hotel at about noon on Feb. 5. The door had been barricaded with a chair. Ms. Jordan was on the floor next to the bed, surrounded by pills. A pill crusher and a syringe used to force feed patients were discovered, along with empty vodka bottles.

An autopsy showed Jude had ingested fatal doses of several medications, including the sleeping pill Ambien and the tranquilizer Xanax. A medical examiner testified the boy had bruises on his face and chest consistent with having a mixture of pills forced down his throat.

She claims that her son was being abused by multiple people, including his biological father.  And, her story goes, she was being stalked by her son’s legal father (her former husband) who was trying to have her murdered. And, if I recall correctly, he also was allegedly abusing Jude.  She had to kill her son, you see, to protect him from falling into the hands of his abusers.

The Post discusses her stories in Someone lock up Gigi Jordan once and for all!.  But what do we have except another version of “I had to kill him to protect him”.

CNN is also reporting the story, noting:

“His fate was sealed,” assistant district attorney Matt Bogdanos said in opening statements. “He didn’t die fast. One by one, his vital organs shut down. It didn’t take minutes. It took hours to die.”

While Jude lay dying, Bogdanos said, Jordan sent an email to a financial adviser instructing him to transfer the $125,000 trust she set up for her son to her personal account.

It took him hours to die.  And the mother, who supposedly was attempting suicide, transferred money out of his account while he was dying.  It’s not like the police arrived just in time to save the mother from her pills, either:

The exact time of the boy’s death could not be determined, but Jude’s body temperature was 80 degrees, suggesting that when police arrived, he had been dead for 8 to 14 hours, Bogdanos said.

Sadly, Jude’s mother appears to have been a part of the “cure at all costs” community.  The New York Times is also reporting.

For several years, Ms. Jordan took him to medical specialists across the country, seeking a cure for his symptoms and subjecting him to experimental chemotherapy, injections of powerful steroids and filtering his blood to counteract autoimmune disorders.

How much did the false hope sold by charlatans play into this murder?  We may never know.  Jude died in 2010 at age 8.  He grew up during the height of the “better dead than autistic” rhetoric.

Jude’s mother is reportedly using her defense to obtain a manslaughter conviction rather than murder.  She’s quoted as calling this a “mercy killing”.

This is no mercy killing.  This is murder.  Brutal murder.  I hope the jury sees through Ms. Jordan’s bizarre stories.

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Matt Carey

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Mother who tried to kill her autistic daughter sentenced: 10 to 22 years

9 Oct

Isabelle Stapleton is an autistic teenager with extraordinary needs. She is also a teenager who will grow up without her mother, as her mother has been sentenced to 10 to 22 years for first degree child abuse. The mother was originally charged with murder, but she pled to the lesser child abuse charge. Details can be found at Mom who tried to kill daughter gets 10-22 years and Kelli Stapleton, who tried to kill autistic daughter, sentenced to minimum 10 years prison.

Here’s a quote from the prosecutor:

“My office strives to protect our most vulnerable victims,” she said. “In this case, Isabelle’s autism did not mean she deserved less protection. Her life has value, and she deserves justice for the attempt on her life. The right outcome was achieved in this case. The defendant was sentenced as recommended by our state’s sentencing guidelines, and justice was obtained for Isabelle.”

It is difficult to find words to discuss cases of murder and for me especially attempted murder of the disabled. As the parent of an autistic kid with very great challenges, this story affects me personally. The disabled are at a great risk of abuse–including from their caregivers. We can not excuse or diminish what Isabelle’s mother tried to do. What she did do. We do this because it is right, not because of loyalty to one group over another as many have described this.

Online one can find very active discussions about this case. Mrs. Stapleton’s friends have jumped forward to defend her. Others, possibly after seen “Dr. Phil” cover this story are also out there. Lot’s of people downplaying what this was–attempted murder. People using Isabelle’s disability to diminish the acts of her mother. People who see loyalty first not to the parents, but to the guilty. One can now find people attacking the father. Everyone is at fault…except the mother. The person who tried to kill Isabelle.

If loyalty is to come into play in this discussion, our first loyalty as parents is not to our fellow parents. Just as Isabelle’s mother’s first loyalty was to the protection of her daughter, ours is to the protection of our children and autistics like our children.

And for those who see great sympathy for fellow parents, consider this. How would you feel if your spouse killed or tried to kill you child? You want to feel loyalty to a parent, Isabelle’s father now has to raise a family alone. Isabelle’s siblings now have to grow up without a mother. It isn’t the court who took their mother away. It’s the mother who left them by her actions.

For those who think that by accepting that justice was served when Isabelle’s mother was sentenced we diminish the challenges of the mother: you are wrong. We can have the discussion of how difficult it is to be a parent. How difficult it is to be the parent of a disabled child. That conversation must start with the challenges and needs of the child. And what greater responsibility do we have than to protect our children’s lives?

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By Matt Carey

Retracted: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data

5 Oct

About two months ago an autism parent published a study: a “reanalysis” of a CDC dataset. That study: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data.

Here’s a screenshot of how the article looks online today (click to enlarge):

BadStudyRetracted

The retraction reads:

The Editor and Publisher regretfully retract the article [1] as there were undeclared competing interests on the part of the author which compromised the peer review process. Furthermore, post-publication peer review raised concerns about the validity of the methods and statistical analysis, therefore the Editors no longer have confidence in the soundness of the findings. We apologise to all affected parties for the inconvenience caused.

Previously, the editors had an “expression of concern” about the article:

The Publisher of this article [1] has serious concerns about the validity of its conclusions because of possible undeclared competing interests of the author and peer reviewers. The matter is undergoing investigation. In the meantime, readers are advised to treat the reported conclusions of this study with caution.

Further action will be taken, if appropriate, once our investigation is complete.

Comment on

Brian Hooker. Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data. Translational Neurodegeneration 2014, 3:16.

An excellent discussion of this study and the questions raised by it can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

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By Matt Carey

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Brian Deer’s original 2004 Channel 4 report on Andrew Wakefield: MMR: What they didn’t tell you

5 Oct

When Andrew Wakefield presented his hypothesis linking autism to the MMR vaccine in 2014 1998, he fueled a vaccine scare that is still alive today. It wasn’t until 6 years later that specifics about Mr. Wakefield’s actions were to surface. First in a newspaper story by Brian Deer (Revealed: MMR research scandal). Later that year in a BBC Channel 4 investigation: “MMR What they didn’t tell you.” I’ve never seen that Channel 4 program. Until today. Mr. Deer has placed it on YouTube. In three parts.

Part 1 introduces the topic. The MMR scare, the Wakefield 1998 Lancet paper and the press conference and the Royal Free’s video given out to the press. A discussion with an epidemiologist about the fact that there was nothing in Mr. Wakefield’s own work to support the triple MMR vaccine. Which leads us to the Wakefield patent for a substance that could be used as a vaccine–a vaccine which could only reasonably be expected to make a profit if the existing measles vaccine were considered unsafe–and as an autism “cure”.

Mr. Deer speaks with Ian Bruce, a researcher who worked with Andrew Wakefield on the patent. “The interpretation of that is quite clear to me..and that is that they have a vaccine for measles. Which presumably is an alternative to the existing vaccine.”

The thing is, the public was not told that Mr. Wakefield and the Royal Free had these commercial interests prior to Mr. Deer’s show.

Part 2 discusses the patent–the cure and vaccine aspects. The idea was that measles virus would be injected into a mouse. Those would be extracted, frozen, thawed, mixed with human cells, and injected into pregnant goats. The colostrum (part of the goat’s milk) would then form the basis of this vaccine/cure substance.

Sound like a strange idea to you? Well, Mr. Deer interviews medical experts who also think so. “the whole technique doesn’t make sense”. “It’s not credible”. “It’s strange”.

Mr. Deer tries to interview Dr. Roy Pounder, Mr. Wakefield’s former supervisor at the Royal Free. Mr. Pounder at first agrees then refuses to be interviewed.

Mr. Deer then goes to American and interviews Hugh Fudenberg, collaborator with Mr. Wakefield and co-inventor on the patent. Mr. Fudenberg at the time was charging up to $750 an hour to see and treat autistic children. He too considers Mr. Wakefield’s treatment to be unfounded. However, Mr. Fudenberg had a cure of his own, made from his own bone marrow.

Mr. Deer discusses some of the criticism of Mr. Wakefield’s work, including a statement from someone who worked in the Royal Free Hospital, including a comment that the work amounted to abuse.

Part 3 includes a discussion with Nick Chadwick, a student in Mr. Wakefield’s laboratory during the MMR/Autism research. Mr. Chadwick tested the tissues for measles virus, and found there was none in the autistic children being seen by Mr. Wakefield’s team. Also interviewed was Ian Bruce, a colleague of Mr. Wakefield’s, and also a supervisor for Nick Chadwick. Both Chadwick and Bruce are highly confident that if there were measles virus in the tissues, they would have detected it.

Mr. Deer discusses the 2000 measles outbreak in Ireland. He interviews the parents of one of the children who died in that outbreak. For those who keep saying that measles is mild, that in first world countries no one dies or is injured, here’s what a child dying of measles looks like in the first world. She took 11 months to die.

Result_of_Wakefields_Scare

Mr. Deer then goes to America to find and try to speak with Mr. Wakefield. Mr. Wakefield was listed as “research director” for Jeff Bradstreet’s clinic in Florida, but wasn’t there. The Bradstreet clinic had a host of supplements that one could purchase to “treat” autism. Mr. Deer eventually finds Mr. Wakefield at an Autism Society of America convention. Whereupon Mr. Wakefield runs away.

By the way–Thank you ASA for no longer inviting Andrew Wakefield to speak.

This investigative report together with the Sunday Times articles earlier in 2004 made a huge impact at the time. I know as I lived through it. The retraction of interpretation published by most of Mr. Wakefield’s co-authors on the 1998 Lancet paper (since fully retracted by the journal), was a big statement that this work was not solid. Of course, Brian Deer would eventually go on to win a U.K. Press Award for his MMR journalism and Mr. Wakefield would eventually be found to have been unethical in his research and struck off the register (lose his medical license).

The embedded version below should go through all three parts in sequence.

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Autism Science Foundation Named as a Top Rated Nonprofit by Great Nonprofits

2 Oct

The Autism Science Foundation funds research related to autism.  They have been named as a “Top-Rated Nonprofit” by Great Nonprofits.  Below is the overview from the announcement website.

Mission:

The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

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Results:

ASF has awarded over one million dollars in funding to scientists doing autism research since our founding in 2009. We also provide travel awards for autism stakeholders to attend the International Meeting for Autism Research each year.

We launched an awareness campaign to encourage brain tissue donation so scientists can investigate the neural underpinnings of autism spectrum disorders.

ASF advocated successfully for a new medical classification code for autistic wandering, which became possible after the ASF-funded wandering study published in the journal Pediatrics.

ASF board members and staff are frequently sought after by major national media (CNN, Wall Street Journal, Washington Post, USA Today, etc) to comment on autism related issues.

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By Matt Carey

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Press Release: IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership

1 Oct

Below is a press release about the nomination process for the next Interagency Autism Coordinating Committee (IACC).  Note: I served as a public member to the previous IACC but my comments here and elsewhere are my own.

IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership (PDF – 94 KB)

On August 8, 2014, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (PDF – 256 KB) into law, reauthorizing and expanding the provisions of the Combating Autism Act of 2006 (PDF – 142 KB). New provisions include an increased focus on services and supports, a report on the needs of transitioning youth and adults, and the creation of an Autism Initiative within the Department of Health and Human Services to ensure accountability and ongoing implementation of autism activities across the Department. The new law also reauthorizes the Interagency Autism Coordinating Committee (IACC) to continue until September 30, 2019.

The IACC is a federal advisory committee composed of federal officials and non-federal public members, including autism self-advocates, family members, representatives of private autism organizations, and other public stakeholders. The committee is charged with:

  • Providing annual updates on its Strategic Plan for Autism Spectrum Disorder (ASD) Research, which under the new law will be expanded to include recommendations on services and supports provision;
  • Providing annual updates on its Summary of Advances in ASD Research, a document that summarizes each year’s top ASD research advances;
  • Providing advice and recommendations to the HHS Secretary regarding issues related to ASD;
  • Providing a forum for public discussion of issues related to ASD.

As a federal advisory committee, the IACC does not have authority or appropriations to fund research or services activities, nor to implement federal programs. The IACC’s role is to provide advice that can be used by federal agencies to guide them in setting program and funding priorities, and in developing partnerships with private organizations to address issues of importance to the autism community.

Under the Combating Autism Reauthorization Act of 2011 (covering the period from 2011-2014, PDF – 121 KB), the IACC completed several important projects, including issuing: a letter to HHS Secretary Kathleen Sebelius regarding the need to fill critical gaps in health coverage for people on the autism spectrum; a statement from the Committee on the 2012 update in the ASD diagnostic criteria, which emphasized the importance of basing healthcare and service provision decisions on the need of the individual; and an in-depth 2013 IACC Strategic Plan Update that analyzed progress made over a five-year period (2008-2012) toward implementing the recommendations in the IACC Strategic Plan.

Reflecting on the completion of the current IACC members’ terms on September 30, 2014, IACC Chair Dr. Thomas Insel stated, “We deeply appreciate the contributions and accomplishments of the IACC members who served on the Committee from 2012-2014, and we look forward to working with the new committee, starting in 2015, to address the community’s most pressing ASD research and services needs.”

The Autism CARES Act extends the work of the IACC another 5 years to 2019. The Department of Health and Human Services (HHS) is currently seeking nominations of individuals to serve as non-federal public members on the next iteration of the committee. Members of the public are welcome to nominate individuals with personal and/or professional experience with ASD for public membership on the committee. The Office of Autism Research Coordination (OARC) at the National Institutes of Health, which manages the IACC, will assist the Department in collecting public member nominations. Selections and appointments of public members will be made by the Secretary of Health and Human Services.

For more information on the IACC public member nomination process, please see the 2014 IACC Call for Nominations Announcement.***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

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