Left Brain/Right Brain

End insurance discrimination?

2009-07-13T19:40:36Z

There is one very important thing that is missing in the call to action on insurance reform put out by Autism Speaks. It is posed as a call to end insurance discrimination. To end insurance discrimination for autism.

Why only autism?

If there is insurance discrimination (there is), it is not limited to autism. We are part of a larger disability community. Therapies for people with autism (such as speech an occupational therapy) are often denied because insurance plans often include specific exclusions for developmental disabilities.

While much of the discussion on this site has focused on ABA, speech and occupational therapies are both commonly used with children with autism and are expensive. ST and OT can easily run $10,000 to $20,000 per year. Easily.

Is it right for insurance companies to deny benefits based on disability?

Is it right to call for an end to discrimination, but only for autistics?

I say no to both.

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Federal mental health insurance parity

2009-07-10T04:51:20Z

As noted recently, there is a push to keep mental health parity in US Federal laws for insurance.

Why do I say “keep”? Because there is already an act to include mental health parity (which includes autism) on the books, which if I recall correctly, is set to go into effect Jan 1, 2010.

I discussed this while the legislation was ongoing. It is now public law 110-343, and can be found here. Don’t be put off by the fact that the abstract states:

To provide authority for the Federal Government to purchase and insure certain types of troubled assets for the purposes of providing stability to and preventing disruption in the economy and financial system and protecting taxpayers, to amend the Internal Revenue Code of 1986 to provide incentives for energy production and conservation, to extend certain expiring provisions, to provide individual income tax relief, and for other purposes.

“Other purposes”...they don’t even mention the mental health parity act until page 98! Ironic considering that the bill started out as the “Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act”.

So, why the push to lobby Nancy Pelosi and others to “end discrimination”? First is that this “Equity Act” didn’t apply to everyone with insurance in the US. But, mostly, the reason is ecause the Federal government is discussing big changes in the way insurance is governed (per Obama’s campaign promises).

Call congress to support autism insurance

2009-07-09T04:47:46Z

Autism Speaks has been working in many states to institute insurance parity for autism. “Parity” means that therapies to treat autism must be given on the same level as other medical conditions.

One big loophole in this is that many insurance programs do not fall under state law. In the US, most people who have medical insurance get it through their employer. Generally, we all think that our employer buys a policy for us from some carrier like Blue Cross or Kaiser. But, what if the employer acts as the insurer? I.e. what if your company pays your medical bills? Well, one thing is that your company is not bound to follow state laws.

So, say you live in a state that has a parity law requiring that autism be covered, what then? Since the federal government doesn’t have insurance parity, you and your family don’t benefit from your state’s law.

You have to imagine this is one reason why companies self-insure.

That aside, Autism Speaks is heading a campaign to get the federal government to pass legislation to end “discrimination” in insurance coverage. They are asking people to call legislative leaders: house speaker Nancy Pelosi (contact info) and Senate Majority Leader Reid (contact info).

Up to this point I think this is very good. I would encourage people to contact these leaders, as well as your own congressperson and senators.

However, the TV ad really bugs me. Take a look and form your own opinion:

To people in the autism community, I think the message is clear. Insurance means funding ABA to make a kid normal. The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.

I am not anti-ABA, but I really don’t like that message.

I also am not wrong in my interpretation. From Autism Speaks’ site “autism votes”

“Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

Fourteen states have already acted to amend insurance laws and require insurers to cover medically-necessary, evidence-based autism therapies. In the other 36 states, insurers explicitly exclude coverage of these behavioral therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Applied behavior analysis therapy (ABA), recognized as an effective, evidence-based treatment for children with autism, costs upward of $50,000 a year – a cost well beyond the means of most American families. A federal law would supersede state laws and require all insurers to cover ABA.

Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”. Since this subject seems to come up in discussions of ABA, I will also make it clear that I don’t think any therapy should be mandated for autism. Mandating ABA is not the intent of this initiative, from what I can see.

Don’t let Autism Speaks or the commercial stop you if you support insurance parity for autism. It is a good cause.

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Guilty plea in Texas “fight club”

2009-07-07T22:04:14Z

One of the worst stories in the last year was the “fight club” environment in a Texas school for children with disabilities. I was disgusted then, it is disgusting now. But, at least there is some justice on the horizon.

From Disability Scoop:

D’Angelo Riley pleaded guilty Monday to three counts of causing injury to a disabled person. A former employee of the Corpus Christi State School in Corpus Christi, Texas, Riley was one of six charged after cell phone videos were discovered in March showing employees forcing residents to fight. Police said fights went on at the facility nearly every night for over a year. Riley is expected to be sentenced Thursday.

Meanwhile a judge said Tuesday that the cell phone videos would not be admissible as evidence at the trial of another former employee, Timothy Dixon. Prosecutors in the case said they would appeal the ruling and Dixon’s case is now postponed.

According to one news story, the reason the phone videos are out is because the evidence was obtained illegally. The person who found the phone didn’t intend to return it.

I await information on sentencing.

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Brian Deer talks back to Andrew Wakefield

2009-07-07T13:25:27Z

I was copied in to the following:

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

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

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Eric London resigns from Autism Speaks

2009-07-06T23:30:21Z

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

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Wakefield’s false claims backfire

2009-07-06T20:27:07Z

Last week Andrew Wakefield announced to the world that the Press Complaints Commission (PCC) had ordered the Sunday Times to take down some articles about him from its website. Wakefield suggested that this was a tacit admission by the Times that its story was inaccurate and this message was dutifully repeated by Age of Autism and the rest of Wakefield’s online supporters.

As I reported previously, the PCC is waiting on the final outcome of the GMC disciplinary hearing against Wakefield before conducting its own inquiry over the articles and felt it would be fairer all round if the material was temporarily removed from the Times website. The Times agreed and removed the articles as a courtesy to the PCC. The Times was not impressed by Wakefield’s ungracious response and as a result the material is now back on their website.

This is not the first time that Wakefield’s actions have backfired on him. Four years ago he tried to sue Channel 4 and Brian Deer for libel over a documentary, MMR: What they didn’t tell you, that contained damaging revelations about Wakefield’s role in the MMR scare. As with his current complaint to the PCC and his recent press release, Wakefield’s action in bringing the case seems to have been motivated by a desire to please his loyal supporters rather than a serious attempt to settle the issue. Unusually for a litigant, Wakefield showed a marked reluctance to clear his name in court, seeking to delay the hearings for two years. When the court decided that Deer and his legal team were entitled to see the unredacted medical records of the children who were the subjects of Wakefield’s original Lancet paper Wakefield withdrew the action and agreed to pay costs to Brian Deer.

It is ironic that without the libel action by Wakefield it is unlikely that Deer would have been granted access to the medical records. And without the records he would not have sat through months of the GMC and so written the story that Wakefield is now complaining about.

According to Brian Deer (private communication, quoted with permission)

There’s also the irony that it was Wakefield who in February 2004 called for a GMC investigation into my allegations that he had a conflict of interest over his research for lawyers, and no proper ethical cover, prompting me to hand over all my materials to the GMC’s lawyers, producing the longest doctor’s discplinary hearing ever.

I understand that the Press Complaints Commission has written to Dr Wakefield about the claims on his website, and he’s now in a tricky position. Either he admits that was he says is untrue, and takes down his claims, or he leaves them up in circumstances which would then be both dishonest and actionable.

I expect Wakefield to withdraw his complaint to the PCC once the GMC deliver their verdict. He will claim that it is impossible for him to get a fair hearing in the UK. It may suit him to continue to play the martyr from his self-imposed exile in America while enjoying the adulation that befits a “brave maverick doctor.” But he is and will remain the author of his own misfortune.

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Ritalin and the Health Ranger

2009-07-05T09:06:57Z

According to the Natural News Network they “focus on providing empowering content for intelligent readers.” A recent example is a report on research into potential dangers from ritalin and similar stimulants that are prescribed to an increasing number of children and adolescents for the treatment of ADHD. According to the American Journal of Psychiatry an estimated 2.5 million children and teens in the USA are taking these drugs and their use amongst adults is increasing. So it is important to assess their safety.

Whatever their intelligence, readers are unlikely to feel empowered after reading Mike Adams’ (aka the Health Ranger) recent article for Natural News Network, “Ritalin ADHD Drug Linked to 500 Percent Increased Risk of Sudden Death in Children.”

He tells us that

According to scientific research funded by the FDA and the National Institute of Mental Health, drugs such as Ritalin increase the risk of sudden death by five hundred percent among children and teens

And that is all he tells us. There is nothing else about the research in the article, not even a reference or a web link to the research. We are told that according to other research (again no references are provided) “ADHD drugs stunt the physical growth of children while impairing brain development.”

Then we get the usual tirade about ADHD being a fictitious disease, invented by the drug companies in order to boost profits from drug sales. And of course they are in cahoots with the FDA and the psychiatric profession. This wholesale chemical poisoning of our children in the name of profit is, of course, a holocaust and children are dying day by day while the mainstream media remains silent.

The media are so compromised that our trusty Lone Ranger had to use all his ranger skills to unearth this story. Well no. Actually he set up a Google news alert and read it in the Washington Post and on ABC News. So much for the media conspiracy of silence.

Of course he had to rely on the media because the drug companies are busy supressing negative research and hiding it away in obscure journals aided and abetted by “Corrupt, dishonest psych doctors “ Except that the paper is published in the American Journal of Psychiatry and it is open access so anyone can read it for free.

This conspiracy of silence seems even more unlikely when you read that the study was supported in part by a contract from the Food and Drug Administration and a grant from NIMH (R01-MH56250) and many of the study’sauthors have received funding from drug companies.

Dr. Walsh has received research support from AstraZeneca. Dr. Duan has received research support from Pfizer. Dr. Olfson has received research funding from Eli Lilly and AstraZeneca and has worked as a consultant for AstraZeneca and Pfizer and as a speaker for Janssen. Dr. Greenhill has received research support from Johnson & Johnson, Otsuka, and Forest. The remaining authors report no competing interests.

The study did something very simple.

Mortality data from 1985–1996 state vital statistics were used to identify 564 cases of sudden death occurring at ages 7 through 19 years across the United States along with a matched group of 564 young people who died as passengers in motor vehicle traffic accidents. The primary exposure measure was the presence of amphetamine, dextroamphetamine, methamphetamine, or methylphenidate according to informant reports or as noted in medical examiner records, toxicology results, or death certificates.

So the research team compared deaths in traffic accidents, on the assumption that children’s medication status would have little bearing on survival rates in such circumstances, with other instances of sudden death. They found that the rate of methylphenidate usage for unexplained sudden deaths was five times more than for deaths in road accidents. So does this mean that Ritalin will make your child five times more likely to die unexpectedly than a child who is not taking Ritalin?

Not exactly. The study did find a clear difference in rates of medication between the two groups and subsequent statistical analysis indicated that this difference was significant and not just an artefact. But what does it signify?

Around 4% of American children are currently taking prescribed medications like Ritalin for ADHD. So you would expect that if Ritalin was not a factor in sudden deaths amongst children, we could expect to find around 4% of such children on Ritalin or similar medications. That works out at around 45 children or 22/23 in each group. In fact they only found 12 children on such medications – 10 in the sudden death group and 2 of the victims of traffic accidents.

Rather than Ritalin increasing the likelihood of sudden death, it is plausible to argue from these figures that Ritalin protects against sudden death. Instead of an expected figure of 22/23 Ritalin users they found only 10. and for traffic accidents the figure is even more dramatic – 2 instead of 22/23.

The authors point to all sorts of reasons why their results hould treated with caution: the small sample size; recall bias amongst parents; the rarity of sudden unexplained deaths in children; even the idea that Ritalin protects against sudden death by making children less likely to engage in potentially life threatening actiivities.

If our intrepid health ranger had read the study he would have known this. He would have also known that he has completely misrepresented its findings. Actually, if he had only read the press reports that he links to, he would have known that he has completely misrepresented its findings. I think he does know this and has deliberately misrepresented this study. Either that or he is the victim of his own conspiracy theoryand is totally impervious to any evidence that contradicts his preconceptions.

Whatever the case may be, anyone studying at the University of Google is more likely to get a D minus than a PhD if they rely on the Health Ranger and Natural News for their information. Though to be fair he does do a nice line in organic hair care products from The Valley of Longevity and he will even help you to buy real estate in the actual Valley in southern Ecuador.

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Wakefield, distortion and the Sunday Times

2009-07-02T23:11:53Z

The journalist Brian Deer has done as much as anyone to investigate the background to what Ben Goldacre describes as the MMR Hoax. In the course of his investigations he discovered undisclosed conflicts of interest by Andrew Wakefield that led to most of the authors of the original paper in the Lancet withdrawing their names and the editor publishing a retraction.

Then in February this year Deer published his latest investigation. The Lancet paper had already been dismissed as bad science. Now, if Deer’s findings were correct, it would seem that some of the data had been deliberately falsified. Wakefield responded by complaining about the article to the Press Complaints Commission. The Times stood by its story and also forwarded all details to the General Medical Council who are still investigating Wakefield over allegations of misconduct.

And that was it until this week, when Thoughtful House, the clinic that Wakefield has established in Texas, issued a press release announcing

Press Complaints Commission Orders Sunday Times to Remove MMR journalist’s Stories on Dr. Wakefield from Paper’s Web Site

It goes on to suggest that this “interim order”

appears to indicate there are questions about the accuracy of the Deer stories.

Of course it does no such thing. Thoughtful House even quote Stephen Abell of the PCC as saying that

Given the ongoing nature of the dispute the articles should be removed from the newspaper’s website until this matter has been concluded. This would not be an admission of any liability on the part of the newspaper.

The wording reveals what actually happened. The Sunday Times has not been ordered to take down the articles. The PCC decided to postpone its investigation until after the GMC reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. That tallies with the email I received from the PCC

The PCC has considered the matter initially and has elected to stay its investigation until the conclusion of the GMC inquiry. It has reached no formal decision on the substance of the complaint and there is no published ruling on our website.

The Commission has asked that the paper remove the articles temporarily until the conclusion of the PCC investigation. This is without any admission of liability on the paper’s part.

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. His friends on the web may try to pretend that this is further proof of the brave maverick doctor’s innocence in the face of a vicious campaign against him. I think they are clutching at straws.

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Time for a cordon sanitaire?

2009-06-28T16:52:07Z

The politics of autism are enmeshed in the debate about vaccine safety over the past ten years, and will take years to be disentangled. In the UK things might be changing, but in the US high profile celebrities have given a late push to fears that by now should be consigned to history. The BMJ have run a feature piece on the “Vaccine Disputes” currently running, focusing on both the UK and US experience. Here are some points made about the UK’s anti-vaccine movements, that both highlight the problems these groups pose for vaccination policies and autism, and their weaknesses.

One of the main drivers of the safety fears are antivaccine groups. Prominent among the UK groups is Warrington based JABS, whose website still maintains that “some children have and will continue to be damaged by combined and single dose vaccines.” Founder Jackie Fletcher has a son with epilepsy and brain damage, which she blames on the MMR vaccine. Her views are widely quoted by the mainstream media.

Another group is the One Click Group, whose tactic is to circulate by email a digest of antivaccination press cuttings, “Mother wants answers as baby dies from vaccine,” is one recent headline taken from a local paper in Trinidad and Tobago. The group has emailed several members of BMJ staff, all of whom found themselves unable to unsubscribe from the unsolicited email. The group, run by a former public relations worker, Jane Bryant, is especially uncompromising in its message. Ms Bryant first came to prominence campaigning to get chronic fatigue syndrome treated as a medical condition.

[...]

Pru Hobson-West, a senior research fellow at the Centre for Applied Bioethics, University of Nottingham, has identified and studied 19 groups in the UK that are critical of vaccinations.5 They included Action against Autism in Glasgow and the London based vaccination.co.uk. She found the groups were all relatively small and led by one or two parents, with a membership base ranging from 60 to 2000.

Ms Hobson-West discovered the more radical groups didn’t necessarily have personal experience of vaccine damage but were often seasoned campaigners for causes such as alternative health and animal testing.

Pru-Hobson-West’s comments ring perfectly true. The same names tend to reappear like weeds in pavement slabs, and a degree of cross-over of key individuals between organisations seems apparent. What we have are highly motivated axe-grinders, some of whom may be motivated because they feel they have genuine grievances. Some, however, are complete crackpots with no stake in either vaccine safety or autism, apart from slightly unhinged views on a variety of subjects. These lead them to take an anti-vaccine stance. So, we have alternative health practitioners with a ideological opposition to vaccines, obsessional individuals who think Roy Meadows is part of a huge establishment conspiracy, and the author of a website that believes vaccines are part of a genocidal plan, while at the same time promoting holocaust denial material. The One Click Group has even resorted to homophobic arguments. These are not people to be taken seriously. In fact, these are people to studiously avoid. Any autism organisation would do well to throw up a cordon sanitairearound such parties and their associates. Here’s how they treat individuals.

David Salisbury, director of immunisation at the Department of Health, says he has received threats at home and at work from activists. He says the “degree of anger” seems similar to that of animal rights activists. “One GP who used to be connected to JABS recommended that capital punishment was appropriate for me. Why should I accept it? This degree of personalisation.”

Neither Generation Rescue nor JABS replied to my questions.

The One Click Group was hostile when I approached them with some straightforward questions. I was directed to another charity and, bizarrely, Peter Fletcher, former chief scientific officer at the Department of Health. When I asked to be taken off its mailing list I was told: “Unsubscribing from the One Click News Alerts requires one mouse click. If this is beyond you, never mind eh?”

And yet the media (including the BBC and broadsheets) continue to give these organisations publicity.

Professor Salisbury says: “There is no doubt that the media give disproportionate weight to the [antivaccine position]. Look at the frequency that journalists writing articles about immunisation go to Jackie Fletcher for a comment.”

“For some campaigners no study is acceptable if it continues to show no link—you get answers by rote: the study was weak, didn’t look at the right children, didn’t use the right method. It’s like AIDS denialists, and there are evidence denialists. The constituency base [of these groups] has got narrower and narrower. There are a diminishing number of people who think [there is a link]. Look at the number of people who contribute to the JABS website; it’s down to a tiny number.”

He’s right. These groups are increasingly talking to themselves (at least in the UK). They have nothing to offer.

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