Lawsuit against alternative medical practitioners Usman and Rossignal

5 Mar

A lawsuit has been filed in Chicago claiming that a child has been harmed by the treatments prescribed by Dr. Dan Rossignol and Dr. Anju Usman.

This is being reported in a story, Father of 7-year-old autistic boy says treatment harmed son. (also now on the Chicago Tribune’s website)

Doctor’s Data has also been named:

Coman also alleged that Doctor’s Data Inc., the St. Charles laboratory that performed the tests Usman and Rossignol used to justify these treatments, was negligent for using an “improper method” of testing.

We here at LeftBrainRightBrain have commented many times about the concept of “challenge” testing to “prove” heavy metal toxicity.

The suit spotlights a test often used to diagnose metal poisoning in children with autism. To conduct the test, doctors give children a chelation drug that forces the body to let go of some of the metals that exist in everyone – healthy or sick – in trace amounts. Those metals show up in urine, which is sent to a lab for screening.

In the case of Coman’s son, Doctor’s Data then compared those drug-provoked results to a reference range calculated for people who had never been given a chelation drug. Based on this apples-to-oranges comparison, Coman’s son was found to have elevated levels of lead, aluminum, tin and mercury – some with results Doctor’s Data listed in the “90% range of metal contamination,” according to the lawsuit.

According to the story, there are no comments from Doctor’s Data, Dr. Rossignol’s office nor Dr. Usman’s office.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

Vaccines Don’t Cause Autism

4 Mar

That’s the title of an article at Smithsonian.com. The introduction spells out one of the dilemmas that face skeptics to the “vaccines cause autism” story:

It’s rare in science and science writing to make definitive statements, particularly about causation. We like to add what I call “wishy washy” words like “may” and “probably” and “perhaps.”

It’s the “you can’t prove a negative” thing. Can someone say that in all of history, for every person, vaccines have not caused autism through some mechanism not yet described? No. But, is there “overwhelming evidence”?

So when scientists or science writers make definitive statements like “vaccines don’t cause autism” and “vaccines save lives,” it’s because we have overwhelming evidence to back it up.

I expect that soon the author, Sarah Zielinski, will see what happens to blogs that dare make such bold statements. Links to the embarrassingly bad “fourteen studies” website will be posted. Comments that “only one vaccine and one ingredient” will be trotted out by people who lack the courage to acknowledge that the studies clear that vaccine (MMR) and that ingredient (thimerosal). “Too many too soon” will be spouted as though this is some real hypothesis rather than a mere slogan.

Ms. Zielinski finishes with:

Vaccines work. They don’t cause autism. Now, perhaps, scientists can spend their resources on figuring out what does instead of wasting them on a debunked theory.

And that is where the frustration comes in. Groups like SafeMinds and Generation Rescue, while they claim to be interested in environmental causes of autism, really only care about vaccines.

Sorry for yet another vaccine story, but it is nice to see people coming down with hard, clear statements. Real people use strong language all the time. Those pushing the vaccine-causation story use language that is completely unsupported by the facts.

Sometime scientists need to speak like regular people, as Sarah Zielinski has just done.

UK Advertising Standards Authority Rules on Options Institute

3 Mar

The Kaufmans ran an Ad in the regional press over here which read:

AUTISM RECOVERY 2 Hours to change your child’s life With American Autism expert Raun K. Kaufman, himself fully recovered from Autism. Free Public Lectures

ASA recieved 2 complaints on the adverts (no, neither were me) and investigated based on the following:

1. Two readers believed the ad was misleading because it implied that autism was a temporary condition, which was curable.

2. One of the readers also believed the ad was misleading because it implied The Autism Treatment Center of America’s programme would be effective within two hours.

3. The ASA challenged whether the testimonials were genuine.

Points 2 and 3 were not upheld which meant ASA were satisfied that point 2 referred to the length of time the lectures went on for and that the testimonials in point 3 were genuine.

However, point 1 was upheld:

The ASA noted the ad referred to “AUTISM RECOVERY” and considered that the word recovery was likely to be understood by readers to mean that OIF were offering a treatment or “cure” for autism. We also noted OIF’s acknowledgment that results of the programme varied.

We noted we had not seen full copies of the three earlier studies on The Son-Rise Program to which OIF had referred. However, we understood from the summaries provided that none of those studies assessed whether the programme could cure Autism. We noted the discussion paper described how the principles of The Son-Rise Program were compatible with a more general understanding of autism and autistic behaviour, established through research carried out over the last 50 years. We also noted, however, that that paper did not assess the efficacy of The Son-Rise Program itself, but suggested that further independent research into the programme was needed. We therefore considered that the studies and discussion paper were not sufficient to support the efficacy claim made for The Son-Rise Program.

We noted two studies were currently being conducted on The Son-Rise Program, but considered that, whatever the initial observations might be, because the results of the studies were as yet unknown, unpublished research did not substantiate the claim. Because we had not seen robust scientific evidence to support the claim of recovery from autism, we concluded that the ad was misleading.

On this point, the ad breached CAP Code clauses 3.1 (Substantiation), 7.1 (Truthfulness) and 50.1 (Health and beauty products and therapies – general).

New national autism strategy launched in UK

3 Mar

Download:

1) Equality Impact Assessment

2) Fulfilling and rewarding lives – The full strategy

Its a fairly momentous day for autism in the UK. The gvmt has finally launched its national autism strategy and placed adults at the heart of it. The first step:

…the Department of Health is funding a study to explore rates of autism in a representative samples of adults in England and build on the small-scale study which began in 2008 to help identify a suitable way for improving the accuracy of estimating prevalence in the adult population.

I think this is a commendable first step. Accurately estimating prevalence is vital to any strategy. It should also be noted that the strategy is ensuring adults across the entire spectrum are included:

In addition, the Department of Health, as set out in Valuing People Now (2009), is committed to establishing a new three-year Public Health Observatory (PHO) in relation to people with learning disabilities. The work of this new PHO will include the collation of existing data on the prevalence of people with autism who also have a learning disability, what services they access, and the quality of those services.

The best place to get a grasp on the entire strategy is with the Executive Summary starting on page 6. The first point reads:

The Government’s vision is that ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream
public services to treat them fairly as individuals, helping them make the most of their talents.

I tend to be skeptical of government strategies but I very much like how this one came about (autistic adults were included as part of the consultation) and the goals it sets out – i.e. recognising that autism is a lifelong thing and trying to set out how to make things better for adults with autism. I hope its successful.

One reason why I vaccinate

3 Mar

I know this isn’t at all autism related, but this story just keeps bugging me.

South Bend couple loses baby to pertussis

The story is heartbreaking. A couple has fertility problems and tries for years to have a baby.

But the couple’s desire to have children soon turned to heartache as Katie suffered miscarriage after miscarriage.

“We started to think that it would never happen,” Craig said during a recent interview at the family’s home.Katie later went to see a specialist in Chicago and was diagnosed with a rare blood clot disorder that doctors said was affecting her ability to carry a baby to full term. She was prescribed medication.

Finally, after five years, Katie became pregnant with a baby girl that far surpassed previous pregnancy terms.

They finally have a baby, only to lose her at one month from pertussis.

Days later, pertussis tests came back positive.The diagnosis blindsided the family. How could Callie have contracted the illness? She had been far too young to yet be immunized against the bacterial infection. Series of shots against pertussis do not begin until infants are 2 months old.

The couple had also kept outside family and friends away while Callie was home in an effort to protect her from sickness. She had been home from the hospital only 2 1/2 weeks.

St. Joseph County coroner Dr. Michael O’Connell confirmed to The Tribune that Callie likely died of an infectious-type illness such as pertussis, but he said conclusive tests will not be complete for several more weeks.

These sorts of stories are very difficult to discuss. This family is going through pain beyond anything in my experience and I certainly don’t want to add to that. But this story is a real example of one reason I vaccinate myself and my family. I can’t imagine thinking that I or one of my family had passed on an infectious disease to a family with an infant or someone else vulnerable.

DSM V and Rett Syndrome

2 Mar

Sullivan recently posted about the proposed changes to the DSM V that would include dropping Aspergers and PDD-NOS. However, whats not so widely realised is that the changes also encompass Rett Syndrome, proposing dropping it entirely.

Rett was originally included in the DSM because it was a disorder with autistic features of an unknown cause. Now that the genetic cause has been identified, the rationale for removing Rett is that it is more its own distinct entity. Another reason pertains to the transient nature of autism features in Rett patients.

However, this may be a very short sighted move. RSRT scientific advisory board member and Rett Syndrome researcher Huda Zoghbi , M.D. discussed the reasons for this on the Rett blog:

I actually do not agree with this approach. I think the approach should be to see what clinically fulfills criteria for autism. I would be in favor of a more precise categorization and dividing DSM V into two types: DSM V A and B. One would be used for syndromic autism and one would be non-syndromic autism. There would be genetic etiologies for both syndromic and non-syndromic. Currently most of the known genetic causes are for syndromic autism but in time, as we do more sophisticated sequencing and we study patients with simplex autism (one case in a family, with no features other than classic autism) we will find etiologies for non-syndromic as well. In my view this would be a much more useful distinction. Bottom-line: having a known genetic cause should not eliminate a disorder from DSM V.

Whats not widely known about Rett is that not all females with a diagnosis of Rett have an identified mutation. Conversely there are females with MECP2 mutations who do not have Rett Syndrome symptoms. Removing Rett from the DSM V seems to be cutting these females off from autism entirely.

The DSM V could be a huge clinical step forward but not at the expense of cutting off people from the support and services they need.

Parental Vaccine Safety Concerns in 2009

1 Mar

A paper in today’s issue of pediatrics looks at vaccine safety concerns amongst parents. The paper

Parental Vaccine Safety Concerns in 2009
by
Gary L. Freed, Sarah J. Clark, Amy T. Butchart, Dianne C. Singer, and Matthew M. Davis. All of the University of Michigan.

the abstract states:

OBJECTIVE: Vaccine safety concerns can diminish parents’ willingness to vaccinate their children. The objective of this study was to characterize the current prevalence of parental vaccine refusal and specific vaccine safety concerns and to determine whether such concerns were more common in specific population groups.

METHODS: In January 2009, as part of a larger study of parents and nonparents, 2521 online surveys were sent to a nationally representative sample of parents of children who were aged ?17 years. The main outcome measures were parental opinions on vaccine safety and whether the parent had ever refused a vaccine that a doctor recommended for his or her child.

RESULTS: The response rate was 62%. Most parents agreed that vaccines protect their child(ren) from diseases; however, more than half of the respondents also expressed concerns regarding serious adverse effects. Overall, 11.5% of the parents had refused at least 1 recommended vaccine. Women were more likely to be concerned about serious adverse effects, to believe that some vaccines cause autism, and to have ever refused a vaccine for their child(ren). Hispanic parents were more likely than white or black parents to report that they generally follow their doctor’s recommendations about vaccines for their children and less likely to have ever refused a vaccine. Hispanic parents were also more likely to be concerned about serious adverse effects of vaccines and to believe that some vaccines cause autism.

CONCLUSIONS: Although parents overwhelmingly share the belief that vaccines are a good way to protect their children from disease, these same parents express concerns regarding the potential adverse effects and especially seem to question the safety of newer vaccines. Although information is available to address many vaccine safety concerns, such information is not reaching many parents in an effective or convincing manner. Pediatrics 2010;125:654–659

The study was a survey of households with children. They contacted extra Hispanic and African-American households to get better statistics on those groups. But they normalized the data to account for this “oversampling”.

Table 3 shows that 11.5% of parents have rejected at least one recommended vaccine. Most listed the HPV (human papillomavirus) as the rejected vaccine. HPV is new, and is given to teenage girls to prevent a viral infection known to be a cause of cervical cancer. (click to enlarge)

Parental Vaccine Refusal

Table 4 shows parental attitudes for a number of vaccines. Reasons for rejecting vaccines vary from “I would rather my child got this disease” to “I personally know someone who experienced a harmful adverse event”. (click to enlarge)

Parent experiences and attitudes on childhood vaccines

The survey explored the views of parents on the autism/vaccine question:

One current specific immunization safety concern has been the spurious association of vaccines with autism. Although peer-reviewed original scientific research and multiple expert committees that have reviewed all available data on this issue have failed to show any association between vaccines and autism, anecdotally the concern continues to affect parents. Our study indicates that a disturbingly high proportion of parents, >1 in 5, continue to believe that some vaccines cause autism in otherwise healthy children. This finding indicates that current public health education campaigns on this issue have not been effective in allaying the concerns of many parents. Officials must attempt to develop more effective and targeted education campaigns that focus directly on this issue if their goal is to match parents’ level of concern with the available scientific evidence. Recently, the use of newer social marketing techniques have been suggested as potential strategies to address vaccine safety concerns.

>1 in 5 believe the “vaccines cause autism” story. Amazing. I’m sure that will be seen as a both a victory and a challenge to the groups pushing that message.

I hate to say it, but someone needs to. This study may be the most valuable study the trial lawyers working on autism/vaccine cases have seen. Much more so than the bad science of the Geiers or the speculation in Medical Hypotheses. Where this will be valuable will be in helping select a jury that is as sympathetic to their cause as possible.

Did TACA change the rules to deny a blogger attendance at a conference?

27 Feb

Two years ago, AutismNewsBeat was Expelled! from an autism “conference” (AutismOne). Today, he was denied admission to the TACA Real Help Now Conference in Wisconsin.

TACA’s stated policy on the website is:

TACA strives to ensure that the focus of our conference is education and support, and to provide a safe, supportive environment for our attendees. TACA reserves the right to refuse admittance to any individual.

But this seems to be a new addition to the website. The Google Cache version of that page, from February 11, doesn’t have that language at all.

Two years ago, AutismNewsBeat attended a conference and did what many other parents were doing: he videotaped.

That didn’t get him thrown out (although it was used as the excuse for why he was thrown out)

What got him thrown out was asking an important question in a respectful manner:

I also attended a Q&A with Dr. Jon Poling, MD, PhD, and his wife, Terry. The Polings have been on a media blitzkrieg since March when they were identified as test case petitioners in the Vaccine Omnibus hearings. The details of the case are shrouded in speculation, since the Polings have not publicly released their daughter’s relevant medical records. I asked the Polings if they plan to release those records soon. Terry Poling said she and her husband would not discuss their daughter’s case as long as there was ongoing litigation.

Soon after I asked my question, a hotel security official asked me to turn off my video camera. At the conclusion of the Q&A, 15 minutes later, I was surrounded by hotel security and escorted out of the building. I had registered six weeks earlier as media, and received a confirming email. I was handed a press pass and told to fill it out myself at the registration desk Friday morning, after being told the computer system was down and my name could not be pulled up. But the conference organizers were having none of it, although by now Westin security no doubt realizes I was totally truthful and cooperative, even turning over my driver’s license for photocopying.

The story as to why AutismNewsBeat was expelled has changed over time.

The first was that I had snuck into the gathering without registering. When conference organizer Ed Arranga realized that I was indeed registered, the story changed to “you broke your agreement not to videotape any of the meetings.” There was, of course, no such agreement, and no evidence of such an agreement. I filmed openly for two days without incident, as were dozens of other parents, not to mention film crews from local television stations. So that couldn’t be it either.

So, now he has been denied entry to a conference for a reason which may not have been in effect when he registered.

It should be noted that after AutismOne, AutismNewsBeat did what many people have done before: he posted his videos to YouTube. Videos such as this one from an autism and the media session.

Perhaps AutismNewsBeat breaks the unwritten code: don’t expose those parts of the autism parent conventions that are best kept behind closed doors.

In praise of pediatricians

27 Feb

Caught in the crossfire of the autism/vaccine debate are the pediatricians. Often the discussion of vaccines and autism devolves into insinuating that pediatricians all know about vaccines causing autism, but they make most of their much money from vaccines.

It is a disgusting lie, and one so transparent.

Maybe I have the only good pediatrician in the free world. Who knows, it could be true. But that guy has stayed with us and our kid at the hospital until midnight, stayed on the phone with the nurses until 2am, and then showed up again a 8am to review the lab tests from the previous day. On another occasion, that guy woke up every two hours through the night to check in with nurses to monitor the lab results and adjust the treatment.

It is very clear when we are in the waiting room of his office that most people there are not there for their kids vaccines. How anyone can say that pediatricians make most of their money from vaccines is beyond me. It is just so plainly, clearly a lie.

Maybe I have the only good pediatrician in the world. I kinda doubt it.

Here’s to pediatricians. They are good people fighting the good fight.

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