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Brian Deer talks back to Andrew Wakefield

7 Jul

I was copied in to the following:

Date: Mon, 06 Jul 2009 18:12:00 +0100
To: “Joanna Bower”
From: Brian Deer
Cc: Thoughtful House

Ms Joanne Bower,
RadcliffesLeBrasseur LLP

Dear Ms Bower,

Your client, Dr Andrew Wakefield, has published, and caused to be published, on his website, thoughtfulhouse.org, and on other sites, false claims that the Press Complaints Commission has issued an “interim order” concerning my investigation into his conduct. Dr Wakefield claims that The Sunday Times has been ordered by the PCC to remove my stories about him from its website.

I understand that the PCC has written to your client to point out that these claims are untrue. In fact, all of my stories concerning him are available at the Times Online website.

thoughtfulhouse.org is unquestionably controlled by Dr Wakefield, and his publication there has caused similar untruths to be published on websites either directly controlled for his interests, such as cryshame.org, which, as you may know was set up by Mrs Isabella Thomas, the parent of two of the children anonymised in the now-infamous Lancet MMR paper, or indirectly controlled for his interests, such as ageofautism.com, operated to promote and profit from concern over children’s vaccines.

It is, of course, nothing new for Dr Wakefield to mislead the public, and especially the parents of autistic children. He has faced the longest ever proceedings before a General Medical Council fitness to practise panel, following the GMC’s reinvestigation of my journalism. In due course, I’d expect he will face a hearing of the PCC, covering much of the same ground on a significantly different evidential base.

However, you may feel it advisable to explain to your client that either he accepts the untruth of his latest claims and takes them down, or he maintains them in publication, in which case his conduct would not merely be wrong, but would be dishonest.

With best wishes,

Brian Deer

http://briandeer.com

US Supreme Court Ruling on Special Education

24 Jun

The US Supreme Court has ruled in the case of Forest Grove School District v T.A. The question was fairly simple: can a child be granted a private placement (outside of the state educational system) if that child doesn’t receive any services from the district?

The district in question argued that the Individuals with Disabilities in Education Act (IDEA) states that a placement could not be paid for (or in this case reimbursed as the parents were footing the bill at first) if:

“previously received special education or related services under the [school’s] authority.”

The family argued that the key provision of the IDEA is the concept of FAPE: the school system must provide a Free Appropriate Public Education. If the district has no appropriate placements, how can the parents be expected to place their child with the district?

The US Supreme Court sided with the parents:

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private school placement is appropriate, regardless of whether the child previously received special-education services through the public school.


Kristina Chew has covered this already at Change.Org, as have others.

This is exactly the sort of topic we as a community and as a part of a greater disability community should be discussing. It is vitally important to those with children in the US. I hope that such decisions will have impact internationally as well.

2-Fatality HBOT Fire

14 Jun

Admittedly, the future for Francesco Martinizi (the boy who was very badly burned in a fire/explosion in a Florida HBOT clinic while apparently being “treated” for Cerebral Palsy), looked quite uncertain.

As I wrote previously:

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

His future is certain now. Francesco died Thursday.

Media reports:

Child Hurt In Chamber Explosion Dies In Hospital

Boy critically burned in Broward oxygen chamber explosion dies

Boy dies from injuries in hyperbaric chamber blast in Lauderdale-by-the-Sea

Boy injured in hyperbaric chamber blast dies

Previous entries at LBRB:

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

HBOT quackery maims 4 year old

Woman and child hurt in HBOT explosion

In Pace Requiescat, Francesco.

Question for commenters: What do you think about the mainstream media’s coverage of this fatality?

ASAN Submits Amicus Brief to the US Supreme Court

2 Jun

I have a very high level of respect for the Autism Self Advocacy Network (ASAN). They one of the few autism groups (if not the only one) that actively works with other disability organizations.

Below is a statement from ASAN on the submission of an amicus (friend of the court) brief for a case before the U.S. Supreme Court.

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court’s analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child’s IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child’s IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

ASAN contact information:

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Does the Lupron Protocol hurt us trying to get insurance parity?

22 May

One of the big issues in the US autism community today is the quest for insurance coverage for autism. Many states are considering or passing laws right now on this very issue.

One question that comes up is how to address alternative medicine. Lawmakers don’t want to make an autism diagnosis a free pass to any and all therapies–be they real, experimental or bad.

So, take a look at the “Lupron Protocol”. This was discussed in a recent article in the Chicago Tribune.

For those who have been lucky enough to not hear about the Lupron Protocol, here is a brief history.

Professor Simon Baron-Cohen proposed a theory that autism might be caused by exposure to higher than normal levels of testosterone in the womb.

Mark and David Geier took this this idea, mashed it up a lot and mixed it with their concept that autism is caused by mercury. Their theory? Mercury binds with testosterone in the brain, forming crystalline sheets which are difficult to remove with chelation.

Utter and complete nonsense.

The Geiers then proposed that reducing the amount of testosterone in the system would allow chelators to access the mercury. They had found a way “to get the mercury out”. Removing the mercury, according to them, would result in improvement or recovery from autism.

Utter and complete nonsense.

Fast forward to today. The Geiers have set up “franchises” across the country to “treat” autistic kids with Lupron, a drug which shuts down testosterone production in the body.

Utter, complete and scary nonsense.

Insurance companies won’t pay for this. For one thing, they don’t usually pay for experimental therapies. Calling the Lupron Protocol “experimental” is just wrong. Experiments are controlled. The subjects are informed that the therapy is experimental and there is some oversight and there is an actual study going on. At best one could call the Lupron Protocol “alternative” medicine.

Or, one could call it, utter, complete and scary nonsense. Just my personal opinion.

Since the insurance companies will not pay for nonsensical autism therapies, the Geiers have decided that autistic kids have a very high incidence of early onset or “precocious” puberty. They test for this:

To treat an autistic child, the Geiers order $12,000 in lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone-related level falls outside the lab’s reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.

$12,000?!? I am trying to find out from a reputable source how much the tests to determine precocious puberty really should cost.

Note that they do a LOT of tests. If they get any single test which indicates precocious puberty, they diagnose and start treatment.

I am not alone in questioning these tests. Experts in precocious puberty have questioned them as well. From the Tribune story:

The blood tests the Geiers use as proof of excessive testosterone don’t show that at all, and other data they cite mean nothing, said Paul Kaplowitz, chief of endocrinology at Children’s National Medical Center in Washington, D.C., and an expert on precocious puberty. They also leave out test results that could help show whether the children are in early puberty, he added.

Looking at the tests, Kaplowitz said he asks himself: “Is Dr. Geier just misinformed and he hasn’t studied endocrinology, or is he trying to mislead?”

If the tests cost $12,000, how much do you think the treatment costs?

The cost of the Lupron therapy is $5,000 to $6,000 a month, which health plans cover, Mark Geier said. However, two families told the Tribune that they had trouble getting insurance to pay for the treatment.

Yep, $60,000 plus per year. Again, I am trying to find out how much a legitimate course of Lupron should cost. Also, I am very interested to know how long a course of Lupron should take. Should it go on indefinitely, as apparantly the Geier protocol does? Or, is there some finite time involved?

Given the opinions of the actual specialists interviewed by the Tribune, it seems pretty clear that the Geiers are neither treating mercury poisoning nor precocious puberty. What they are doing is charging for a lot of expensive tests and even more for a long regimen of Lupron.

Is it any wonder that the insurance companies are balking?

Is there any question that this will make it harder for the rest of us to get real insurance parity for people with autism?

Autistic boy killed with ‘chemical cosh’

21 May

Disability Scoop reports today on the awful story of an autistic child killed at a group home:

Denis Maltez, who had autism, died in 2007 at age 12 after being restrained by staff members employed by the group home where he lived in Miami. An autopsy determined that he was experiencing serotonin syndrome, a condition where the body produces too much serotonin, the chemical that regulates a person’s mood. The syndrome can be caused by a combination of psychiatric medications.

….

“This is a clear case of a 12-year-old child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision,” said Howard Talenfeld, Quesada’s [the boy’s mother] attorney. “Tragically, this case is one of many cases where foster children and developmentally disabled children are given powerful drugs to control their behavior instead of utilizing appropriate behavioral interventions.”

With echoes of the inappropriate ‘care’ dolled out to Jesse Moores, this seems to me another example of a young person with special needs treated with scant thought or care. Its sickening that there seem to be so many of these stories on both sides of the Atlantic recently. I sincerely believe that there needs to be an _international_ coalition of voices – made up primarily of autistic people and their immediate families – to offer oversight on how autistic people are treated. This cannot be allowed to continue. Closing down homes, jailing perpetrators etc _after_ the fact is all well and good. We need something proactive not reactive.

Autistic man tortured

19 May

If you’re the parent of an autistic person, or if you’re an autistic person then this story is nigh on unreadable. But read it we should and must. Everytime someone says they;ve had enough autism awareness then point them to this story, horrifying as it is.

As a mentally challenged man screamed and pleaded for his torture to end, his attackers held him down, shot him repeatedly with paintball and BB guns, and branded him with searing coat hangers. “Mommy, mommy,” the victim screamed, to no avail.

Here was a 21 year old autistic man who had challenged himself enough to be holding down a job at a local food processing plant in Alva, Oklahoma, USA. And ehre also were three other ‘men’ who wanted to make a ‘Jackass’ style video. But rather than just use their own bodies, they thought it’d be good to take advantage of someone who was vulnerable.

The video depicted Wallace [one of the attackers] and others branding the letters B, M and C into Dahling’s chest, the affidavit states.

Wallace told police those letters stand for boredom, mayhem and chaos, Orcutt [police representative] said.

During the branding, the victim is heard screaming, “No, no, no, stop it, I don’t want to go through any more pain,” according to the affidavit.

After being shot several times with the BB pistol and another gun, the victim cries and attempts to leave, but is cornered by Wallace and another man and told to get down or he will be shot again, the affidavit states.

He screams, “I’ll be good, I’ll be good” but Wallace uses the gun barrel to push the man’s head to the floor, according to the affidavit.

In another scene, Dahling is shot several times with a paintball gun, then lifts his shirt to reveal welts.

What do you do with ‘men’ like this? According to the paper, the ringleader has previous for torturing an animal and abusing a two year old. What a big brave guy. I can only hope that ‘men’ like these are in the minority and that they get exactly what is coming to them by way of a long jail sentence.

Autistic man dies

12 May

In November 2005, 26 year old Mr Jesse Moores died after choking to death on ‘a golf ball sized piece of food’.

Moores was autistic with a low IQ (therefore classed as ‘severe’. He was described as having the mental age of 8). He lived in the Chine Care Home in Enfield, North London, a residential group home owned and operated by Robina Care Group Ltd. He had a history of choking incidents.

The day Mr Moores died, the home was being managed by Deputy Manager Patience Etchu-Abangma. Also on duty with her that day were two agency care workers.

It transpired during court proceedings that Etchu-Abangma had a secret second job and that she had left the home on that day to work at that secret second job. Before that fact came out however, she lied and said she was out shopping at Boots.

When one of the two agency staff called Etchu-Abangma to tell her that Mr Moores was choking to death, Etchu-Abangma told her not to phone an ambulance for 15 minutes. This gave her time to leave her second job and return to the care home. Only then was an ambulance called.

During the police investigation following Mr Moores death, Glen von Malachowski, who was chief executive of company Robinia, said ‘shit happens in our business’.

Some people are pure scum.

http://www.telegraph.co.uk/news/uknews/4801880/Care-home-left-illegal-immigrant-in-charge-as-resident-choked.html
http://www.disabilitynow.org.uk/latest-news2/care-group-fined-a31-4m-in-jesse-moores-case
http://www.google.com/hostednews/ukpress/article/ALeqM5gFQx9OWLwIuu90RSisqLabRiVZ7w
http://www.thisislondon.co.uk/standard/article-23678359-details/S**t+happens+,+says+boss+after+care+home+death/article.do

Richard Deth – gambling man

27 Apr

Maybe you don’t know, or have forgotten who Richard Deth (pronounced to rhyme with ‘teeth’) is.

He is:

Richard Deth, Ph.D., is a neuropharmacologist, a professor of pharmacology at Northeastern University in Boston, Massachusetts, and is on the scientific advisory board of the National Autism Association. Deth has published scientific studies on the role of D4 dopamine receptors in psychiatric disorders, as well as the book, Molecular Origins of Human Attention: The Dopamine-Folate Connection. He has also become a prominent voice in the controversies in autism and vaccine controversy, due to his theory that certain children are more at risk than others because they lack the normal ability to excrete neurotoxic metals.

Deth became ‘hot property’ in the anti-vaccine autism groups after publishing a paper (with which there were numerous issues – see Bart Cubbins excellent video for details) that was funded by one of those anti-vaccine groups – Safe Minds. Interestingly, during an exchange with Kathleen documented at neurodiversity.com, it also came to light that Richard Deth was registered as a paid expert witness in the vaccine litigation omnibus proceedings. Professor Deth said:

“I thank you for alerting me to the fact that my name was included on that expert witness list. It was done so without my knowledge or permission. It might be related to a phone call from that law office that was logged to my office while I was away on vacation in February. I never returned the call.”

To which Kathleen replied replied:

“It was quite an oversight for the attorneys to fail to confirm your willingness to serve in that role prior to naming you as a plaintiffs’ expert in the Petitioners’ Initial Disclosure of Experts, and filing that document with the Court of Federal Claims. However, their certainty is understandable, given your indication during our brief telephone conversation that the lawyer with whom you discussed the matter was “Andy” Waters, lead attorney in the thimerosal cases.”

Deth didn’t comment any further. As many have discovered, if you want to go head to head with Kathleen you better make sure your i’s are dotted and your t’s are crossed.

One of the statements Deth made during their exchange stood out to me at the time.

…I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty. If you are willing, I’ll let you name the stakes.

Deth sent his email on March 22 2006. Luckily for him, Kathleen took pity on him and declined his rather gauche offer.

So what does this mean? What does it prove?

Why, nothing. Nothing at all. I just wanted LB/RB readers to be perfectly clear that a strong _belief_ in a scenario doesn’t make one right. In fact, when we look at all the recent evidence for the various beliefs of the various anti-vaccine/autism groups – from the prediction that the Omnibus Autism cases would be a walkover for them, to David Kirby’s certainty that thiomersal causation would be vindicated by CDDS data in 2005, then 2007, to this example of ego from Richard Deth what we see is a clear picture of a set of people who are consistently and unerringly wrong. This is because they simply cannot see the science right in front of them. Even such an august figure as Richard Deth, Ph. D.

Nothing to do with us: Measles in Wales

25 Apr

The recent measles outbreak in Wales occurred near Swansea. The local newspaper in the area gave publicity to the autism-MMR vaccine hoax, and may have been behind the area’s relatively poor vaccination rate. Tammy Boyce’s Health Risk and News: The MMR Vaccine and the Media described an examination of the Swansea MMR uptake rates:

Mason and Donnelly (2000) examined coverage of the MMR/Autism story in the local Swansea paper The South Wales Evening Post (SWEP) and compared the Swansea MMR uptake rates with the vaccination rates across Wales. Since 1997, coverage of the MMR vaccine in the SWEP has primarily challenged the safety of the triple jab and supported Wakefield’s theories. Many stories, predominatly written by one journalist, covered the experiences of parents who claimed their child’s autism was linked to MMR vaccine.  Mason and Donnelly found the MMR uptake in the Swansea area declined by 13.6% compared to 2.4% in the rest of Wales, ‘a statistically significant greater decline in the distribution area of the SWEP’. They admit their conclusion cannot claim a causal relationship but they do suggest the newspaper ‘has had a measurable and unhelpful impact over and above any adverse national publicity’.

The newspaper concerned does not make the link between its reporting and reduced MMR vaccine uptake, when reporting the recent outbreak. On August 24th, 2007 the paper was reporting that the low uptake rates for MMR vaccine were a ticking time bomb.

SWANSEA is facing a ticking health time bomb, GPs have warned.
They say unless more mums and dads make sure their youngsters are protected by the MMR jab, the city could face a measles epidemic.
Latest figures show thousands of schoolchildren are being placed at risk because they are not fully protected by the MMR vaccination.
Health chiefs say around 10,000 youngsters aged under 15 are not completely covered because they have not had the full course of treatment. For the vaccine to be effective, children need two jabs. The injections should then protect youngsters from measles, mumps and rubella.
However, uptake in Swansea is among the lowest in Wales.

This can hardly be a surprise to the paper, since less than a month earlier the paper had published an article called “Doctor calls for truth on vaccines” (July 30th 2007) which provided free publicity for Dr Richard Halvorsen. The following extract will allow you to play “anti-vaccine” statement bingo:

Dr Richard Halvorsen, raises his concerns – warning that the Government “misleads us about vaccines”.
Author of a new book, The Truth About Vaccines, he claims that UK children are being used as “guinea pigs” and given “unnecessary” jabs for illnesses such as mumps, and a vaccine for whooping cough which has been “ineffective” in stamping out the illness.
Halvorsen is a GP who has spent five years researching vaccination.
He said: “Vaccine programmes are not the magic bullet cure that they are claimed to be, and bombarding children with a cocktail of vaccines could be causing some serious health problems, with hundreds if not thousands of children adversely affected every year.”
Dr Halvorsen points out that a child is supposed to have 25 vaccines by the time they are 15 months old.
“There remains uncertainty whether the growing number of childhood vaccinations is contributing to the rising numbers of children affected by asthma, diabetes and other immune related disorders,” he claimed.
[…]
“I have been told that there is no one study that can disprove that MMR may cause 10 per cent of autism cases in this country in susceptible children. Studies can show that MMR does not cause all autism.

The Mason and Donnlly paper cited by Boyce is here:

Mason, BW and Donnelly, PD (2000) ‘Impact of a local newspaper campaign on the uptake of MMR vaccine’, Journal of Epidemiological Community Health, 54: 473-474 [link]

Seven years after warnings about their reporting on MMR vaccine, SWEP continued to publish dangerous nonsense about vaccines.

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