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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.

Successful blogging by Steven Novella: the Desiree Jennings story

26 Feb

I stayed away from this story until now. It isn’t about autism at all, except that “Jenny McCarthy and Jim Carrey’s Autism Organization–Generation Rescue” decided to take the story on. Why a supposedly autism organization took on the story of an adult who was supposedly injured by a flu vaccine is not clear to this reader. But, this story shows the power of quality blogging to affect the discussion of a national topic.

Short version of the story: Desiree Jennings was given a seasonal flu vaccine. Sometime after that she developed problems in movement and speech. She attributed these problems to the vaccine, citing dystonia as the condition. This was questioned by some bloggers, including a neurologist, Dr. Steven Novella. As a neurologist, Dr. Novella is experienced in conditions such as dystonia. Ms. Jennings was treated by a well known name in the autism-alternative-medicine community, Dr. Rashid Buttar. The story was given national attention, including a segment on the U.S. TV show Inside Edition.

The whole story of the alleged vaccine injury is long and strange. The current status, it gets even stranger. Ms. Jennings appears to have made a full recovery, walking and driving a car. She talks better, with the addition of a rather strange accent. This was found when Inside Edition decided to do a followup on Ms. Jennings, apparently after reading Dr. Novella’s take on the story. From Dr. Novella’s recent blog post:

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night

One reason to bring this story up now is highlighted by Dr. Novella: the effect of science bloggers on a major news story:

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.

Dr. Novella did well in blogging this story, and Inside Edition did well to reconsider the story in light of the well-reasoned discussion of Dr. Novella.

Video of the recent Inside Edition segment is here:

U.S. Department of Justice opens investigation on Judge Rotenberg Center

23 Feb

The Judge Rotenberg Center (JRC) is probably the best known and most controversial special education school in the world. The JRC describes itself as:

The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.

If you haven’t heard of them, you are probably wondering how they could be controversial. From the JRC website:

If positive and educational procedures alone are not effective, then after trying them for an average of 11 months, we approach the parents to suggest supplementing the rewards with a corrective (aversive) consequence for the problem behavior. If the parent approves, and if we obtain an individualized authorization from a Massachusetts Probate Court, we apply an aversive in the form of a 2-second shock to the surface of the skin, usually on the arm or leg, as a consequence each time the problem behavior occurs.

Yes. The JRC uses aversives. Not just any aversives, they use electric shocks. When I first read that it sounded like they get parental and Court approval for each shock. Not so. Children are fitted with backpacks or “fanny packs” which have control units. Children are monitored 24/7. If a staff member believes an aversive is called for, the JRC staff can remotely signal the control unit to apply a shock to the child. Children can be shocked 30 times–or more–in a single day.

A coalition of disability organizations have filed a complaint against the Judge Rotenberg Center with the United States Department of Justice.

The Department of Justice responded with a letter stating they have opened a “routine investigation”.

A letter from Nancy Weiss informing people of the investigation is below. Ms. Weiss is from the National Leadership Consortium on Developmental Disabilities and the University of Delaware.The Complaint letter, signed by 31 disability organizations, is quoted below that.

Disability advocates have cause for celebration today. In response to the September 30th letter signed by 31 disability organizations, the U.S. Department of Justice, Civil Rights Division has announced that they have initiated an official investigation of the Judge Rotenberg Center (JRC); see the Department of Justice letter attached.

I’ve been waiting to receive the official notice before announcing this exciting news for the 31 disability organizations that signed the September 30th letter and for all of the disability advocates who have been fighting for over twenty-five years to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation as methods of behavior control. Our September 30th letter was sent to seven government agencies and three human rights organizations (see list of letter’s recipients below and the letter and addendum, attached).

The initial response of the Department of Justice was that they didn’t believe that they could take action because they didn’t believe they had jurisdiction over privately operated facilities (like the Judge Rotenberg Center) since CRIPA, the Civil Rights of Institutionalized Persons Act (http://www.justice.gov/crt/split/cripa.php) applies only to state-run (not state-funded or -licensed) institutions. I suggested to them that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities (see my email to them below). Their letter states that they are pursuing this investigation under Title III of the ADA which prohibits discrimination against people with disabilities.

None of the other government or human rights organizations that were recipients of the letter have so far been able or willing to take action – Human Rights Watch and Physicians for Human Rights had other priorities; Amnesty International is seeking guidance through their international headquarters in London but, as has been our experience in the past, they have shown little interest. The U.S. Department of Education referred us to their efforts with regard to seclusion and restraint, which, while related and important issues, do not address the concerns about electric shock and other aversive procedures described in the letter. The Office on Disability suggested that advocates should “think about finding a way to connect this issue to regulatory compliance,” though clearly we have pursued this approach with limited success for over twenty-five years.

While it is not possible to say how long the Department of Justice investigation will take (they just chuckled when I asked this) or what the impact of this investigation will be, we know that Department of Justice investigations are customarily thorough and rigorous. I will certainly keep the 31 signing organizations and others who have expressed interest in this effort informed along the way. If you are not sure you are on that list and would like to be kept posted, just send a reply email.

If you have first hand knowledge of JRC/BRI related issues and would like to be interviewed by the Department of Justice investigators, please let me know and I will pass this on to them.

To each of you who has maintained energy for this issue over a long, frustrating and mostly unproductive battle, I am most appreciative of your continued commitment. When you think about how long these abuses have been known and generally ignored, I know you share my sense that we must have fallen down the rabbit hole. We can only keep our fingers crossed that this is the first step in righting a long history of wrongs.

With renewed hope,

Nancy

This is the complaint letter.

September 30, 2009

We are writing to ask the above Government agencies and human rights organizations to take action to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation – all inhumane and unnecessary methods of behavior modification used in some schools and residential facilities for children and adults with disabilities in the United States. This letter is signed by 31 disability organizations concerned with the humane treatment of people with disabilities.

The attached information focuses on the practices of the Judge Rotenberg Center in Canton, Massachusetts. While there are examples of the use of prolonged seclusion and unnecessary restraint in schools and residential facilities across the country, studies prepared by government agencies and investigative reports that have appeared in the media suggest that the Judge Rotenberg Center uses these procedures as well as painful electric shock and food deprivation. According to public sources, residents of the Judge Rotenberg Center receive painful electric shocks for behaviors as innocuous as stopping work for more than ten seconds, getting out of their seats, interrupting others, or whispering1. In the view of the undersigned, the use of painful and dehumanizing behavioral techniques violates all principles of human rights. We are sending this letter to a number of government and human rights organizations. We ask that you show leadership in protecting the rights of all people in the United States by acting to put an end to these inhumane practices wherever they occur.

The type of practices against which we ask you to take action have been documented in numerous government reports and other public documents. One of the best documentations of these practices is the June, 2006 New York State Education Department report2 that noted the following concerns about the Judge Rotenberg Center (JRC):

“Students wear the GED device [the device that delivers the electric shock] for the majority of their sleeping and waking hours, and some students are required to wear it during shower/bath time. The GED receivers range in size and are placed in either “fanny” packs or knapsacks. Staff carry the GED transmitters in a plastic box. Students may have multiple GED devices (electrodes) on their bodies. For example, one NYS student’s behavior program states, “C will wear two GED devices. C will wear 3 spread, GED electrodes at all times and take a GED shower for her full self care.” (p.7)

“A combination of mechanical restraint and GED skin shock is also used to administer a consequence to students that attempt to remove the GED from their bodies. In instances where this combined aversive approach is used, the student, over a period of time specified on his or her behavior program, is mechanically restrained on a platform and GED shocks are applied at varying intervals. … An example of this is found on one NYS student’s behavior program; a consequence for pulling a fire alarm is to receive 5 GED [shocks], over a 10-minute period, while being restrained on a four-point board.” (p. 9)

Another example of these inhumane practices was documented by NPR Health Reporter Joseph Shapiro, in his book No Pity. His observations of The Judge Rotenberg Center include the following:

” … one young man got tired of picking out matching shapes on a computer screen. But his teacher demanded that he continue and pinched him on the palm for disobeying. The young man …made a guttural noise of protest and tried to get up. In a second, two staffers had thrown him face down on the floor. This only made him more agitated. Then came a squirt in the face with ammonia water. The man spent a minute on the floor, trying to move and protest, but was restrained by one staffer’s knee in his back and another’s grip on his arm.”3

The JRC website describes these practices as “intensive treatment procedures”4 but almost every national disability organization agrees that the use of painful procedures to change a person’s behavior is unnecessary, inhumane, and should be banned.5

With this letter, we ask The House Committee on Education and Labor to take legislative action to end the use of these practices. In our view the practices described in the New York State Education Department report on JRC meet the definition of torture in the United Nations’ Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment that is, “any act by which severe pain or suffering, whether physical or mental; is intentionally inflicted on a person; for such purposes as:

* obtaining from him/her or a third person information or a confession;
* punishing him/her for an act s/he or a third person has committed or is suspected of having committed;
* intimidating or coercing him/her or a third person;
* or for any reason based on discrimination of any kind;

when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity.”6

We the undersigned urge you to review the attached information which documents extensive instances of inhumane practices and take legislative and regulatory action to halt the continued abuse of children, adolescents and adults with disabilities. Through numerous pleas and campaigns, advocates have seen little action from federal, state or local regulatory agencies or the criminal justice system. These entities have been aware of the documented abuses for over thirty years. Even though there is broad professional agreement that a wide range of positive interventions are available which are at least as effective in managing dangerous behaviors, and which do not inflict pain on or dehumanize individuals with disabilities, no regulatory agency has been able or willing to act to eliminate these practices.

As a group of advocates concerned with the support of persons with disabilities, we call on these Government agencies and human rights organizations to work with us to expose and condemn these behavioral techniques, take the legislative and other necessary steps to protect the rights of people with disabilities, and bring an end to these practices.

For additional information, to discuss proposed action, or to contact the organizations below, please contact Nancy Weiss by phone: 410-323-6646 or e-mail: nweiss@udel.edu

Signed:

Alaska Youth and Family Network and YouthMOVE

Anchorage, AL

American Association on Intellectual and Developmental Disabilities

Washington, DC

Association of University Centers on Disabilities

Silver Spring, MD

The Arc of the U.S.

Silver Spring, MD

Autism National Committee (AutCom)

Forest Knolls, CA

The Autistic Self Advocacy Network

Washington, DC

Center on Human Policy, Law, and Disability Studies, Syracuse University

Syracuse, NY

The Coalition for the Legal Rights of People with Disabilities

Boston, MA

Cobb and Douglas Counties Community Service Boards

Smyrna, GA

Connecticut Council on Developmental Disabilities

Hartford, CT

Disability Rights Education and Defense Fund

Berkley, CA

Easter Seals

Chicago, IL

Exceptional Parent Magazine

Johnstown, PA

Hope House Foundation

Norfolk, VA

The Learning Community for Person Centered Practices

Annapolis, MD

The Maine Independent Media Center

Waterville, ME

Maryland Coalition for Inclusive Education

Hanover, MD

National Association of County Behavioral Health and Developmental Disability Directors

Washington, DC

National Association of Councils on Developmental Disabilities

Washington, DC

National Association for the Dually Diagnosed (NADD)

Kingston, NY

National Disability Rights Network

Washington, DC

The National Leadership Consortium on Developmental Disabilities, University of Delaware

Newark, DE

Respect ABILITY Law Center

Royal Oak, Michigan

RHA Howell, Inc.

Raleigh, NC

Self Advocates Becoming Empowered

Kansas City, MO

TASH

Washington, DC

United Cerebral Palsy

Washington, DC

Values Into Action

Media, PA

University of Medicine and Dentistry of New Jersey, School of Nursing

Newark, NJ

University of San Diego Autism Institute

San Diego, CA

The Voices and Choices of Autism

Lakewood, CO

Here is an addendum letter.

Addendum to Sept ’09 Letter from Disability Advocates – End Inhumane Practices.doc

If you can stand reading more about JRC, Mother Jones ran a story on JRC in 2007, School of Shock.

The disability advocates say it much better than I ever could. Picking but one sentence: We cannot condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population.

Andrew Wakefield’s Autism Organization?

22 Feb

There has been a major push to show support for Dr. Andrew Wakefield following the clear and decisive ruling against him in by the General Medical Council and the retraction of his flagship paper in The Lancet and his departure from Thoughtful House.

I have some advice for those who are supporting Dr. Wakefield. I realize advice from me is about as welcome to them as me seeing Dr. Wakefield in my pediatricians’ office, but here goes:

If you want to show real support, add him to your board of directors. Add him to your Science Advisory Boards. Call yourselves “Andrew Wakefield’s Autism Organization”. When big donors call, have them speak with Dr. Wakefield. When you lobby the legislature, bring Dr. Wakefield.

Don’t keep him at arm’s length while trying to rehabilitate his reputation.

The way I see it, right now Dr. Wakefield is a liability. It is one thing to write blog posts or letters to newspapers. It is quite another to spend your organizations reputation.

Between the time I started a draft of this post and it now, Dr. Wakefield has made his first public statement about his departure from Thoughtful House. He mentions that he has an “entirely new sort of opportunity that will allow me to continue my work on behalf of autism families”. Who knows, maybe one or more of the existing orgs will take him on.

Proposed HHS budget has $16M more funding for autism research

21 Feb

The United States Department of Health and Human Services is proposing an increase in autism research funding of $16 million, or about 8% over the 2010 budget:

Addressing Autism Spectrum Disorders: The Budget includes $222 million, an increase of $16 million, for Autism Spectrum Disorders (ASD). NIH research will pursue comprehensive and innovative approaches to defining the genetic and environmental factors that contribute to ASD, investigate epigenomic changes in the brain, and accelerate clinical trials of novel pharmacological and behavioral interventions. CDC will expand autism monitoring and surveillance and support an autism awareness campaign. HRSA will increase resources to support children and families affected by ASD through screening programs and evidence-based interventions.

The Obama administration had originally projected $210M by 2011, so if this gets approved they will be ahead of the original plan.

Last year the Obama administration proposed $211 million:

Supports Americans with Autism Spectrum disorders (ASd). The President is committed to expanding support for individuals, families, and communities affected by ASD. The Budget includes $211 million in HHS for research into the causes of and treatments for ASD, screenings, public awareness, and support services.

If I do my sums correctly, congress actually funded $206 million. Don’t be surprised if the amount funded for 2011 is less than the $222 million proposed. Then again, according to Jocelyn Kaiser at Science:

And in any case, the president’s budget proposal doesn’t mean much because Congress usually ends up giving NIH more than the president requests.

The budget mentions autism in other places:

INVESTING IN SCIENTIFIC RESEARCH AND DEVELOPMENT
Exploring Scientific Opportunities in Biomedical Research:
The Budget includes $32.2 billion for NIH, an increase of $1 billion, to support innovative projects from basic to clinical research. This effort will be guided by NIH’s five areas of exceptional research opportunities: supporting genomics and other high-throughput technologies; translating basic science into new and better treatments; reinvigorating the biomedical research community; using science to enable health care reform; and focusing on global health. The Administration interest for the high-priority areas of cancer and autism fits well into these five NIH theme areas. In FY 2011, NIH estimates it will support a total of 37,001 research project grants, including 9,052 new and competing awards.

Emphasis added.

also,

Autism and Other Developmental Disorders: The Budget requests $55 million, an increase of $7 million, as part of the President’s Initiative to support children with autism spectrum disorders and their families. This funding will continue to expand Federal and State programs authorized in the Combating Autism Act to research, and support screening and vidence-based interventions when a diagnosis is confirmed.

also,

National Vaccine Injury Compensation Program: The Budget requests $7 million for the Vaccine Injury Compensation Program to prepare for projected increases in claims and continue reviews of over 5,100 claims from autism proceedings.

also, under ADDRESSING RESEARCH PRIORITIES IN FY 2011:

In FY 2011, for autism spectrum disorders, again building on significant Recovery Act investments, NIH will undertake complete genome sequencing and comprehensive DNA analyses of 300 autism spectrum disorder cases, and will launch the first epigenomic studies of brain samples from individuals with and without autism. NIH will also use a network of health maintenance organizations to identify patterns of environmental exposure during pregnancy and perinatal life that may contribute to autism.

and,

In FY 2011, NIH will also accelerate Phase 3 clinical trials of a promising mGluR5 antagonist, begin a clinical trial of the drug rapamycin, and create a translational pipeline for advancing additional small molecule drugs for autism.

Would I like to see more funding applied to autism? Heck yeah. But, this is twice the commitment that the previous administration made in autism research.

The proposed budget continues the NIH commitment to research on environmental and gene-environment causation of autism.

Mark Blaxill attempts to support Andrew Wakefield?

20 Feb

As most have now gathered, Andrew Wakefield’s career in the UK is finished. However, the PR machine keeps spinning in the USA as a new fascinating web piece from Brian Deer reveals.

Brian tells the story of how Max Clifford’s daughter – who works for her father – had apparently been ready to take on Andrew Wakefield as a client:

They are looking to take us on for a few months…

However, her father – who previously refused to work with Michael Jackson – had other ideas:

It’s my company, and my daughter works for me, he said

…

We are not involved, and we will not get involved unless they are backed by top medical experts…

Heh. Not much chance of _that_ happening.

During the piece Brian discovers who might be financing Andrew Wakefield’s about-face in the public eye. He suggests a couple of names to Clifford’s daughter who confirms the participation of one Mark Blaxill:

…she appeared to take the bait over Blaxill. “Right, Mark. Okay. Mark is…” But then she paused to ask: “Brian, what’s your background?

Amazing that someone who was preparing to work with Brian Deer didn’t know who Brian Deer was but more interesting to me was the possibility that Mark Blaxill was preparing to fund Max Clifford’s PR firm to try and rehabilitate Andrew Wakefield’s public image. Go read the whole thing, its pretty interesting.

It’s official, Dr. Krigsman to leave Thoughtful House

20 Feb

Thoughtful House, the clinic and research center founded by Dr. Andrew Wakefield, is losing both Dr. Wakefield and, now, Gastroenterologist Dr. Arthur Krigsman.

From a Yahoo group (as posted by Mike Stanton in the comments on LeftBrainRightBrain):

Re: Dr. Krigsman

Dr. Krigsman’s decision to relocate his clinical practice to a facility outside Thought House reflects his belief that the complexities inherent in a referral-based practice can be best addressed by his working independently. We will continue to refer patients for GI evaluations when appropriate, and we look forward to continuing to work with Dr. Krigsman on research projects. We are grateful to Dr. Krigsman for his dedication to Thoughtful House and for the work he does on behalf of the children we serve.

Just to be clear, this is official.

Jane

Was Dr. Wakefield the complainant in his own GMC case?

19 Feb

Pop quiz: of these two people, who was the first to request that the General Medical Council (GMC) investigate Dr. Andrew Wakefield

a) Brian Deer
b) Dr. Andrew Wakefield?

Ah–trick question! Brian Deer didn’t ask the GMC to investigate Dr. Wakefield. Mr. Deer offered and gave information to the GMC, but, it turns out, only after Dr. Wakefield called for an investigation.

Let me start by saying I hesitated to publish this post as it will be just make it seem like there is a real controversy here. There isn’t. But after noting that the addendum to the Press Complaints Commission (PCC) complaint filed against Brian Deer included citations to LeftBrainRightBrain I decided to check into the “complainant” question.

Here’s the PCC complaint. Here’s the addendum.

There is a long “forensic analysis” argument to make the case that supposedly Brian Deer was the complainant. This struck me odd. Why do a “forensic” argument, unless you don’t have substantial proof.

In the matter of Dr Wakefield and the GMC, and based upon forensic analysis of all the available documentary evidence, one is entitled to believe that Mr. Deer was the original and only substantive complainant to the GMC, whether or not he was the ‘Complainant’ who instructed the legal prosecution of the case (which was the GMC through its lawyers Field Fisher Waterhouse).

OK, Brian Deer was the complainant, whether or not he was the ‘Complainant’. Everyone got that? Clear as mud?

It wasn’t to me, so I contacted the General Medical Council to ask a simple question:

I am sorry to bother you, but I was hoping you could help with a question. Is it public knowledge whether Mr. Brian Deer was a “complainant” for the Wakefield case? Was there any “complainant” or was this case brought forward by the GMC itself?

I received a very simple answer:

Dear Sir/Madam

The General Medical Council can act in response to complaints about doctors but we do not require someone to make a formal complaint to us before we can act. We can in fact initiate action against doctors of our own volition. This enables us to launch an investigation in response to publicly expressed concerns about the conduct of doctors, whether or not those concerns have been directly and formally referred to us.

The case against Dr Wakefield, Professor Walker-Smith and Professor Murch was brought by the GMC there was no complainant in this case.

I hope you find this information helpful and if you have any further queries relating to this case please do not hesitate to contact me.

When I asked if I could make this public, I was informed that this information is already public. Yes, I forgot the fact that Brian Deer had a letter from the GMC’s attorneys already. That is from May, 2005. I guess this whole, “he’s a complainant even if he isn’t a Complainant” thing has been going on for some time.

The “forensic analysis” seems to rest on the fact that Brian Deer has communicated with the GMC. There doesn’t seem to be any actual complaint filed, but, as we are told:

But what Deer does not reveal is that on February 25, 2004, three days after his article attacking Wakefield had been published in the Sunday Times, he had written to the GMC…

Yes, according to this timeline, Brian Deer published his article and then contacted the GMC 3 days later. It is characterized as a “spontaneous” communication in the complaint. As in, Brian Deer just out of the blue decided he needed to contact the GMC.

Dr. Wakefield left out an important part of the timeline. Namely, his own call for a GMC investigation. Here is a timeline:

February 22, 2004, Brian Deer’s article, Revealed: MMR research scandal is published.

February 23, 2004: Dr Wakefield states, “I’d welcome inquiry”

“Serious allegations have been made against me in relation to the provision of clinical care for children with autism and bowel disease, and the reporting of their disease. It has been proposed that my role in this matter should be investigated by the GMC. I not only welcome this, I insist on it and I will be making contact with the GMC personally.”

Two days later, on February 25, 2004: Brian Deer emails the GMC. This appears to be the first contact between Mr. Deer and the GMC. According to the excerpt in the PCC complaint filed by Dr. Wakefield:

email from Brian Deer to Tim Cox-Brown, Caseworker GMC, 12.16 pm 2.25.04. This is a sixpage letter concluding with the statement “As a matter of public duty, I write to offer this outline of my main findings, and to offer the GMC my fullest cooperation in getting to the bottom of these matters”.

Which, according to Dr. Wakefield, makes Brian Deer the “complainant” in the GMC hearing:

This reads as a spontaneous and intentional contact with the GMC for the purpose of requesting to put before them the substance of his complaint and in fact, doing so i.e. making a complaint.

Spontaneous? I guess if you leave out critical details like Dr. Wakefield’s own call for investigation. As I titled the post, couldn’t one say that Dr. Wakefield is the complainant? After all, it is Dr. Wakefield who appears to have called for the investigation.

Dr. Krigsman “steps down” from position at Thoughtful House?

18 Feb

In an article in the Times Online, the departure of Dr. Wakefield from Thoughtful House is confirmed, but also a statement is made:

It has also emerged that Arthur Krigsman, director of the gastroenterology clinic at Thoughtful House, has stepped down in recent weeks. The departure is not thought to be directly related to Dr Wakefield’s situation

Dr. Krigsman is still listed on the Thoughtful House website, where he is still listed as director of the gastroenterology clinic.

Dr. Krigsman is the director of the gastroenterology clinic at Thoughtful House Center for Children in Austin, Texas.

I am unclear on whether “stepping down” means he is still with Thoughtful House but not as director, or whether he has left Thoughtful House altogether.

Dr. Krigsman is the lead author on a paper which came out recently purporting to support Dr. Wakefield’s research.

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