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Autism Speaks:  The results of this research are clear: Vaccines do not cause autism…but doesn’t let that statement stand alone.

26 Mar

Autism Speaks has come out with some very strong statements about autism and vaccines.  And the back peddled. 

First, here is a statement by Robert Ring, Chief Science Officer:

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.

Rob Ring
Chief Science Officer, Autism Speaks

 
In the past Autism Speaks had been sympathetic towards the idea that vaccines cause autism.  More than sympathetic, some would say.  Such a clear statement as above would have been unthinkable from Autism Speaks only a few years ago.
I wish they had made these statements earlier, but I am glad they are making these statements now.  The vaccine hypothesis has been the most damaging idea in autism since the refrigerator mother theory.  With Autism Speaks position as a well known autism organization, perhaps even fewer families will get caught in the vaccines-cause-autism trap in the future.Here’s the way the Autism Speaks vaccines and autism page looked just last year.  It includes many problematic statements and concludes: “A list of publications that used VAERS information to study associations with autism can be found here“.  “Here” is a link to pubmed with the search terms “vaers” and “autism”.  No surprise, it’s a list that is padded out by works by Mark and David Geier.  The Geiers have been performing poor research for years and have been discussed here at Left Brain/Right Brain many times.


The above statement by Mr. Ring was picked up by the press in February as it was so clear.
Next, Bob Wright, co-founder of Autism Speaks:
 

Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.

Bob Wright
Co-founder, Autism Speaks

It’s a fairly stilted paragraph in my read.  It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring.  Scientific research has not directly connected autism to vaccines?

Even with that, I can’t imagine that admitting that vaccines are “important” will go over well in some circles.  Close circles.  Even “important” is to positive a word for some.  But, seriously, here we have an invention that has saved more lives that possibly any other in medical history and we get “important”?

Yes, Mr. Wright, efforts must be made to educate parents about vaccine safety.  That’s what your chief science officer did.  Sadly, you can’t let Autism Speaks be a science led organization.

By Matt Carey

Note: I accidentally published an early draft of this article yesterday.

Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.


By Matt Carey

Hey Jimmy Kimmel, thanks from your autism community!

3 Mar

Jimmy Kimmel, member of the autism community (he has an autistic family member) took on the anti-vaccine movement in a segment of his show:

He starts out with a monologue and then gives a PSA. The PSA is well worth watching. All the way through.

As you can imagine, this did not go over well with some people. He got a lot of hatred flung at him and claims that he is attacking the autism community. It’s the “use my kid as a human shield” defense.

And Mr Kimmel (member of the autism communities) stood his ground, with humor:

We need more people standing up against those who scare people about vaccines. And by “we” I mean the autism community and the developmental disability community. Our community is the most at risk for injury or death from infectious diseases. Diseases that injure or kill do so more to our communities (Why vaccination uptake matters to the autism community).


By Matt Carey

Is Andrew Wakefield’s Strategic Autism Initiative failing?

3 Mar

When Andrew Wakefield left Thoughtful House he set up a charity, the Strategic Autism Initiative.  Interestingly even now, years after it was founded, it appears to have no website or Facebook page.  What it does have is tax forms because every charity must make those public.   Last year when I looked these tax forms, a few points became apparent.  Most of the money the SAI had taken in (58%) had gone to salaries, with the lion’s share of that going to Mr. Wakefield himself.  In 2012 more money was spent on salaries that was taken in.  SAI appears to have two employees, Andrew Wakefield and Terri Arranga.  Here are the contributions to the SAI, Mr. Wakefield’s salary and Ms. Arranga’s salary for the years 2010, 2011, 2012.

SAI contributions and salaries

And here are the tax forms:

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

It is worth noting that the SAI was formed towards the end of 2010, hence the low salaries for that year.

Donations were down dramatically from 2011 to 2012 leaving one to wonder: what would 2013 bring?  Did the downward trend continue? Well, here’s the 2013 tax form:

Strategic Autism Initiative 2013 tax form.

Gross receipts: $50,498, down from $113,501 for tax year 2012.  A drop of over 50%.  The SAI ran a deficit of $97,514, nearly twice what they took in.  Mr. Wakefield took no salary, Teri Arranga only $5,000.  The SAI only had $21,396 in assets at the end of the year.

In short: the SAI appears to be failing. OK, in terms of benefit to the autism communities, the SAI has continually failed.

SAI 2013 form 990

Below are the “program service accomplishments” for the SAI in 2012 and 2013.  Program services are the heart of what a charity is doing.  Well, a standard charity.  That said, ignore the money amounts listed and tell me if you can see any difference in the text.  It looks to me like they copy and pasted the accomplishments from 2012 into 2013.  If I wrote the same accomplishments one year to the next, my management would likely let me go for accomplishing nothing in a year.

SAI 2012 program services SAI 2013 program services

This tax form–the most recent one available–is from 2013.  We will have to wait for the 2014 form but if this trend continued, the SAI is either failing or has failed as an organization.

By Matt Carey

Was autism ever a first advocacy priority for those promoting the idea that vaccines cause autism?

2 Mar

Years back the evidence was rolling in debunking the hypotheses that the MMR and/or thimerosal in vaccines causes autism. At that time I naively wrote some colleagues in online writer’s community about how perhaps the groups that had been advocating about autism being a vaccine-induced epidemic would now become actual autism advocacy groups. They were at a fork in the road: become autism organizations or focus solely on vaccines. But acting like they were doing both was no longer going to work. One writer responded in a way that has stuck with me as he has been shown to be dead on right. Dr. David Gorski (who writes at Science Based Medicine among other places) was the colleague and I he said essentially: it has always been about the vaccines for them and it always will.

Years later it’s obvious: Dr. Gorski was correct. I was wrong. And we are seeing good examples of that now in this measles outbreak as groups like Safeminds and, of course, the Age of Autism blog chime in with articles downplaying the dangers of measles. A prime example recently came on AoA from Mark Blaxill. Mr. Blaxill is largely responsible for the thimerosal scare of the past decade. He wrote a paper (published in the non peer reviewed Medical Hypotheses) Thimerosal and autism? A plausible hypothesis that should not be dismissed. It was junk when it was published, it’s junk now.

His recent article on AoA is “Measles Hysteria — The Truth About a Non-Epidemic in Eight Simple Slides”. It’s junk and one could spend an article debunking each point. But Let’s take a more focused look. He has a slide “Why Measles is No Longer a Threat in the U.S.” (click to enlarge)

M Blaxill misinfo 1

So, it was supposedly 1500 infections ago that someone in the U.S. died of measles. Only 1 in 1500 or so and so it’s not a big deal. Mr. Blaxill even called (or got someone from his organization to call) the CDC for a statement. Who knows what was asked, what was said. Maybe the CDC spokesperson made a mistake. You see, Dr. Vincent Iannelli at Pediatrics.About.Com actually tabulated measles deaths in the U.S. in recent years. Even with a low infection rate, people die of measles and have died in the U.S.. After presenting the data for each year he summarizes:

So that’s 10 measles deaths since 2000 and at least 7 measles deaths since 2005.

Why do people say that there have been no measles deaths in the United States in the past 10 years? Whether they are misinformed or intentionally trying to misinform people, they are wrong.

One can confirm this on the CDC Wonder website. Here’s a screenshot.

This isn’t about proving Mark Blaxill wrong on some point. Because in the end it doesn’t matter if it’s one death or ten deaths, it’s too many. But I suspect 1 death or 10 deaths wouldn’t change Mr. Blaxill’s assertion that measles is a minor deasease.

\Those 10 measles deaths Dr. Iannelli mentions are deaths that occur during the infection, usually from complications like pneumonia or encephalitis. But the thing about measles is that it can kill years later. There’s a condition called SSPE, Subacute Sclerosing Panencephalitis. You see, for some people, the measles virus enters the brain and stays there. And slowly kills.

From Dr. Iannelli:

About 6 to 8 years after having measles, children with SSPE develop progressive neurological symptoms, including memory loss, behavior changes, uncontrollable movements, and even seizures. As symptoms progress, they may become blind, develop stiff muscles, become unable to walk, and eventually deteriorate to a persistent vegetative state.

Children with SSPE usually die within 1 to 3 years of first developing symptoms

and

That’s 32 SSPE deaths since 2000 and at least 19 SSPE deaths since 2005. Why so many? Many of them can likely be attributed to the large number of cases associated with measles outbreaks from 1989 to 1991.

There is no cure for measles infection. There is no cure for SSPE. One can read more about SSPE at the link given above or at a recent article at Science Based Medicine: SSPE: A Deadly and Not-That-Rare Complication of Measles.

Mr. Blaxill includes a quote from someone in the 1963 who stated that measles is of “moderate severity” or “low fatality”. Perhaps to someone who lived through the early 20th century when measles was even more deadly, this might seem so. Perhaps. But not now. And how can someone ever use the phrase “self limiting” about a disease that can lead to SSPE? SSPE is only “self limiting” in the death of the patient.

Another of Mr. Blaxill’s slides shows the decline in measles infections and deaths following the introduction of the vaccine. Mr. Blaxill annotated this with his own observations (click to enlarge):

M Blaxill misinfo 2

Here’s the thing that pops out of that graph: the death rate has remained constant at about 1 in 1,000 since at least 1950. Take a look at any datapoint in the deaths and go up a factor of 1,000 and there’s the infection rate. And that doesn’t account for SSPE deaths years later.

Over the years I’ve found that Mr. Blaxill often takes an unreasonable and unfounded stance on issues. But since when is a death rate of 1 in 1,000 low enough to state “Why Measles is No Longer a Threat in the U.S.”?

For comparison, Mr. Blaxill informs us that there have been 80 deaths attributed to measles containing vaccines reported to VAERS (the Vaccine Adverse Event Reporting System) in the past 10 years. He ignores, as most people do who use VAERS in this manner, to include the disclaimer one must acknowledge in order to access VAERS data, which concludes that VAERS data do not imply causality. But let’s for the moment assume that every report to VAERS is causal. 80 deaths. There are about 4 million babies born in the U.S. each year. About 90% get the MMR vaccine. Twice. Over 10 years. That’s nearly 80 million doses of MMR vaccine administered. So, even if we take each report to VAERS as causal, that would be 1 death in 1 million doses. 1 death in 500,000 infants. This is a huge over estimate given the assumptions, but let’s do the difficult: compare these numbers. To Mr. Blaxill 1 in 500,000 is too many, but 1 in 1,500 is “low fatality”.

Even using the Mr. Blaxill’s flawed assumptions, his logic doesn’t make any sense.

Let’s take a look at Mr. Blaxill’s concluding slide so I can bring this back to how it shows that he has abandoned not just logic but also the autism community. I’ve highlighted one sentence that is particularly important. (click to enlarge):

M Blaxill misinfo 3

Measles has ceased to be a dangerous illness? Seriously? First, the idea that we can accept 1 out of 1000 people dying due to measles is just astonishingly bad advocacy. For that point alone we in the autism community need to distance ourselves from Mr. Blaxill and people like him. These irresponsible actions are not the actions of the autism community.

That said, let’s consider this key phrase: “in healthy children”. If you will, try to recall back in the day when Mr. Blaxill presented himself as an autism advocate. Actually, we don’t even have to go back that far, only recently he was telling a congressional hearing:

In New Jersey, 1 in 29 boys born in 2000 were diagnosed autistic.

What’s going on? Why are so many American children sick?

The message he had for many years was that autistic children are sick. Not healthy. His former organization (Safeminds) would be quick to point out a number of conditions that are more common in autistics than in the general population. Since even by his own definition autistics are not “healthy”, why should we let measles return in force to the U.S.? Of course it is Mr. Blaxill’s failed hypothesis that vaccines are making children “sick”. But let’s consider this very real point: the developmentally disabled are more likely to become sickened by infectious diseases and they are more likely to die (Why vaccination uptake matters to the autism community).

And that’s ignoring the fact that a large fraction of autistics are also epileptic. And a huge trigger for seizures is infectious disease and the prolonged fever that comes with it. Perhaps Mr. Blaxill is unaware of the term status epilepticus, the situation where someone gets into a state of constant seizures. And, yes, this can be brought on by infection.

Or perhaps Mr. Blaxill has forgotten the emphasis his community placed on mitochondrial disease and autism just a few short years ago.

From a U.C. San Diego Metabolic Deseaese Center website, the paragraph: What is Mitochondrial Disease?

If a child is stricken with a catastrophic disease affecting three or more organ systems, or if a child has been afflicted with a relapsing disease that affects two or more organ systems and leads to slow but measurable deterioration, he or she may have a mitochondrial disease. At times, mitochondrial diseases can cause isolated symptoms. These may include unexplained seizures, low blood counts, dystonia (abnormal muscle tone or spasms), blindness, deafness, dementia, ataxia (stumbling or tremors), cerebral palsy, heart failure, or progressive muscle weakness. More often, however, several organ systems are affected in sequence, one faltering or failing after another. Good periods are frequently punctuated by abrupt deteriorations that are caused by simple infections. For children with mitochondrial disease these infections can be life threatening, and leave them with deficits that cannot be recovered.

Emphasis added. Some fraction of our population does have mitochondrial disease. Allowing diseases like measles back would put this community (as well as those with mitochondrial disease without autism) at huge risk.

I’d like to say that Mr. Blaxill, like many in the “autism is a vaccine-induced epidemic” camp, has lost his way. A very valid question is whether Mr. Blaxill and his colleagues were ever on the path of autism advocacy. Was it always, as Dr. Gorski opined, about the vaccines?

While I’ve entitled this article “Was autism ever a first advocacy priority for those promoting the idea that vaccines cause autism?”, in the end motivations are secondary. Mr. Blaxill’s actions are and have been irresponsible. They are an example of the actions of a group of faux autism advocates that have a history of irresponsible actions. Not just to public health but to the autism communities.


By Matt Carey

Katie, you should be twelve

1 Mar

Katie McCarron, you were beautiful and wonderful and loved by your father and grandparents and I’m sure so many more. Here’s what your grandfather had to say shortly after your passing:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that Katie was not in pain. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of karaoke. She liked to dance, she loved to do the hooky poky. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I am writing about you today because it is a day of mourning in our community. A day when we remember those we failed to defend. For each of us there may be one out of the many murdered who touches us most deeply. I write about you today because it is a day of mourning. I think about you often.

If I recall correctly you should be turning thirteen later this year. I wonder how that wonderful smile would have matured. I know that there were people in your life who would be cherishing you and loving you. You deserved that.


By Matt Carey

Why vaccination uptake matters to the autism community

27 Feb

With the recent outbreak of measles in California (and spreading elsewhere), we are seeing a lot of new coverage of vaccine related questions. We are also seeing a number of vaccine antagonistic individuals and groups showing that they are, well, antagonistic towards vaccines. There is no surprise that much of the antagonism towards vaccines is coming from a segment of the autism parent community. Besides being highly irresponsible in general, these groups are putting our own communities at risk.

In an outbreak people with developmental disabilities are at heightened risk of becoming infected. Autistic children are nearly twice as likely to see a doctor for an infectious disease visit than a non autistic child. (click to enlarge)

lewin

And multiple studies have shown an increased risk of complications or death from infectious diseases. In a recent influenza outbreak, the CDC reported on the deaths in people with underlying medical conditions. This was discussed here at Left Brain/Right Brain as Children with neurologic disorders at high risk of death from flu. From the CDC press release:

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

Another CDC study, and again discussed here, Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011.

In one facility with 130 residents total 76 residents had acute onset of respiratory illness. 13 were severely ill. 10 were hospitalized, and 7 died. 7 out of 130 dead in one outbreak.

Here’s a 1988 study, Causes of death of patients in an institution for the developmentally disabled.

Respiratory disease, predominantly pneumonia and aspiration, accounted for 72% of deaths

Pneumonia is relatively common following diseases including measles and influenza.

A study from 1996 Large sequential outbreaks caused by influenza A (H3N2) and B viruses in an institution for the mentally handicapped tells us that residents of the facility were about twice as likely to get sick (59% became ill) as staff. Residents were about 5 times as likely to be sickened twice as were staff.

These are just a few studies I’ve collected. Not a thorough search at all. But the point is clear: the developmentally disabled are more likely to be sickened and more likely to be injured or killed by disease.

What is the infection rate and the rate of injury or death from other infectious diseases, say measles, in the developmentally disabled population? We are lucky enough in the U.S. to not have those data. But if we take the approach proposed by those who are opposed to vaccination, we may find out soon.


By Matt Carey

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