Dr Gordon is aggrieved
Over at Respectful Insolence, Science Blogger, Orac has been visited by Dr Jay Gordon in the comments section of his blog, Dr. Jay Gordon: No vaccines needed, just quit eating cheese and ice cream. Dr Gordon, you will remember, is a paediatrician to the children of the rich and famous, including Jenny McCarthy’s son Evan. He appeared with her on the Larry King Show when she tried to shout down Dr Tayloe of the American Association of Pediatrics. He appeared with her on the platform of the Green Our Vaccines demo which was actually an anti-vaccine campaign, as evidenced by the slogans on many of the banners. He enjoys being feted on a yahoo group devoted to Jenny McCarthy and her ideas. Recently he used this group to make disparaging remarks about Paul Offit, which reappeared in the comments section of Respectful Insolence
“From: Jay Gordon
Date: Fri, Jul 25, 2008 at 7:44 PM
Subject: [JennyDCAutismRally] I’M TIRED OF THE DISRESPECT FOR DR PAUL OFFIT
To: JennyDCAutismRally@yahoogroups.com
Dr. Offit is a tireless advocate of vaccination and a respected medical authority.
I am tired of hearing people refer to Dr. Offit as a “shill” and a dishonest profiteer willing to lie repeatedly. I tired of hearing people on this list imply that he lacks integrity, hides his profits and is a disgustingly disingenuous man.
Actually, I’ve decided I’ll never tire of people say those things about Dr. Offit. Carry on!!!”
Dr Gordon appeared on Orac’s blog to complain that he was not anti-vaccine; that he was a good man and a good doctor and we should not be mean to him by countering his off beat ideas with hard science and evidence based medicine. His message can be summarized thus;
Don’t be mean to good people. They are only trying to help and what if they are right and you are wrong?
Well I have news for Dr Gordon. Asking for hard evidence is not being mean. And if we ask and you come back with the same old nonsense while still failing to provide any evidence, you will get laughed out of court. If you were a worried parent or even an ill-informed journalist we would probably give you more of our time and patience and try and explain things to you. But you are a doctor, a national media figure with a following amongst parents of autistic children. When giving health advice it is your job to check the facts and get it right. What are we to make of this, where Orac quotes you from an interview you recently gave to Cookie Magazine?
I think that the public health benefits to vaccinating are grossly overstated. I think that if we spent as much time telling people to breastfeed or to quit eating cheese and ice cream, we’d save more lives than we save with the polio vaccine.
I also happen to think that Dr Offit is good people. He is trying to help and doing a very good job with the rotavirus vaccine he helped to develop that is now saving lives. What if Dr Offit is right and Dr Gordon is wrong? Both have years of clinical experience. Dr Gordon somehow thinks his clinical experience entitles him to disregard the collective experience of his fellow pediatricians at the AAP. His clinical experience even trumps the evidence from clinical trials. Dr Gordon may be right to have such unbridled regard for his own professional judgement. But we have the right to a better justification than, “because I say so.” He may also be right to ask for a respectful hearing and for people not to be rude. In which case he ought to apologize to Dr Offit for his own rudeness in maligning him behind his back, in a forum where he had no right of reply.
Dr Offit is abused
Unfortunately this sort of behaviour, maligning people with whom you disagree instead of engaging in a respectful discussion or debate about the issues, seems to be a standard response from some of the more vocal purveyors of anti-vaccine propaganda linked to autism. David Kirby, writing on the Huffington Post, described Amanda Peet as
a well-meaning but grossly misinformed actress who is guided by a doctor who will likely make money from his own work helping to develop a childhood vaccine.
Amanda Peet was worried about vaccines. She did her research, not like that other “grossly misinformed actress,” Jenny McCarthy, who googled autism and clicked on an advert for quack autism treatments. Ms Peet asked her paediatrician brother-in-law. He arranged for her to speak with Dr Offit whose explanations eased her concerns. And what sort of a slur is that supposed to be on Dr Offit? He gets paid for helping to develop a life saving vaccine and of course that equals conflict of interest. Is David Kirby conflicted because of his close ties to advocacy groups like Generation Rescue? Should we disregard the message he brought on his recent visit to London because that trip was sponsored by anti-vaccine organizations? Or should we question him on the strength of his argument and his knowledge?
Jay Gordon agreed with Kirby on Orac’s blog and held up an execrable piece of journalism that has been roundly condemned by my fellow bloggers Orac, Kev and Autism Newsbeat as evidence.
I would find it easier to take Dr Gordon seriously if he was at least consistent and publicly condemned the slurs and character assassinations that are regular repeated about good people like Dr Offit. I expect he knows JB Handley (known as “Brad” to his friends). They would have met up at the Green Our Vaccines rally. Brad helped to set up the organization, Generation Rescue, that sponsored the rally and has recently added Jenny McCarthy to its board. Generation Rescue always had money for full page adverts in national newspapers. Now that Jenny and boyfriend Jim Carrey are attracting stars like Britney Spears to Generation Rescue fundraisers they are branching out and adding to their web presence. Brad already has a track record for cybersquatting but the latest antic by Generation Rescue is both puerile and malicious.
They have set up a website, PaulOffit.com that traduces the man’s motives and his reputation. Perhaps not enough people were reading Brad’s rants against Offit on his Age of Autism website, the anti-vax alternative to the Autism Hub. I wonder how long a similar site, BradHandley.com would stay up before Handley’s lawyers intervened. Kev was almost forced to stop blogging with Left Brain Right Brain when threatened by the long arm of Brad Handley’s legal department. The “offending” material has now been removed and Kev had to apologise. That’s the way to settle an argument about autism. Use your wealth to try and bankrupt a fellow parent who disagrees with you.
Still, if all the rumours are true and Paul Offit is indeed a multimillionaire from the proceeds of his “vaccineering” and has the power and money of the drug companies at his disposal, perhaps he will put it to good use and sue the pants off his detractors. Somebody ought to.
Footnote
Friends have suggested that my tone in this post is angrier than usual. I apologize for the tone but I am angry with journalists who curry favour with anti vaccine groups and distort the evidence to suit their purpose. I am even more angry with doctors who play up the risks of vaccines and downplay the risks of vaccine preventable diseases.
According to The Measles Initiative in 2000 757,000 children died from measles. A mass vaccination campaign has reduced that figure to 242,000 children. In Africa there has been a 90% reduction in deaths from measles but there is still a lot to do in parts of Asia.
According to the CDC
Rotavirus is the leading cause of severe acute gastroenteritis among infants and young children, accounting for an estimated 527,000 deaths among children aged <5 years worldwide in 2004 (1,2). In the United States, rotavirus causes few deaths (20–60) each year, but remains a substantial cause of morbidity among children, resulting in approximately 55,000–70,000 hospitalizations, 205,000–272,000 emergency department (ED) visits, and 410,000 physician office visits (3). In the continental United States, rotavirus activity follows a distinct winter-spring seasonal pattern (4). In winter months, approximately 50% of hospitalizations and ED visits and 30% of outpatient visits for acute gastroenteritis among U.S. children aged <3 years are caused by rotavirus (5).
Dr Offit’s vaccine, Rotateq, is already having an impact on those figures and has the potential to prevent a lot of those estimated 527,000 deaths among children aged <5 years worldwide. The hate campaign against him does make me very angry and on second thoughts I do not apologize for the tone of this post. According to Aristotle,
”Anyone can become angry. That is easy. But to be angry with the right person, to the right degree, at the right time, for the right purpose and in the right way - that is not easy.”
July 31st, 2008
Posted by
Mike |
Autism, Quackery, science, vaccines |
19 comments
I have just spent a very pleasant weekend at the Maryport Blues Festival with my wife and my son, who has Asperger’s Syndrome. My daughter elected to go to Glastonbury instead. And a good time was had by all of us. There was even an autistic angle to our trip. Jools Holland, who was headlining the Sunday night concert in the main marquee at Maryport, has previously allowed the National Autistic Society to fundraise at his concerts and had compered a charity event for the Autism Research Centre: Autism, Art and Music in 2006. The DVD of this event was on sale alongside other marketing opportunities at the Sunday night concert. I decided to google it when I got home and opted instead for CDs by the excellent support band, The Sherman Robertson Band and Jules’ guest singer, Ruby Turner.
I am very happy with my choices, (correction; our choices, Sherman Robertson was my son’s purchase). But on returning home I was dismayed to find that the only link to the Autism, Art and Music DVD was broken. If any gentle reader knows where I can puchase this item I shall be forever grateful.
Meanwhile, back to the festival. It was fantastic. I was ready to be disappointed by Chuck Berry on the Friday night. At 81 years of age he ought to be well past his prime. Believe me, he is still prime. The guy was amazing. He finished his set by inviting members of the audience on stage to dance. His daughter Ingrid, who performed on stage with him made a special point of embracing a young dancer on walking sticks.
On Saturday we over-indulged, joining the Town Trail of lesser artistes performing in pubs and clubs around Maryport Harbour on a very hot afternoon before retiring to the main marquee for the evening concert. We may have been too tired to do Jimmie Vaughan justice, but he gave us his best from the main stage, ably abetted by Lou Ann Barton
And regarding those lesser artistes, on any normal weekend I would have felt privileged to be in their presence. I still feel privileged. But they were opals and pearls in the company of emeralds and diamonds. Ignoring my own preference for Guy Tortora and Sam Kelly we went in search of pastures new and discovered Starvin’ Sid from my home time of Grimsby and Little Stevie and the Business.
For some reason I cannot upload the video I took at the festival. When I work it out i will do my best to share it with you. Meanwhile you will just have to take my word for it that the musically diverse are just as rewarding as the neurodiverse.
July 29th, 2008
Posted by
Mike |
Autism, Uncategorized, recreation |
one comment
Channel 4 News carried a worrying story on Monday, 14 July. While I would not go as far as my good friend Kev in describing it as evidence of fascism, it does raise serious questions about parental rights and the use of the law to decide issues of child welfare. The story concerns an autistic boy, Ben Haslam, who was making good progress at The Shires. I say “was” advisedly because Bedfordshire County Council, who were funding his 52 week a year placement, were due to cease payment at the end of the week. This was the result of a high court ruling which upheld Bedfordshire’s appeal against the decision by a Special Educational Needs and DISability Tribunal, aka SENDIST, that had upheld a previous appeal by Ben’s parents against Bedfordshire’s refusal to fund Ben’s place at The Shires.
From the news report it is obvious that Ben, who has severe learning difficulties and no spoken language has benefitted from his residential school placement. He used to constantly demand food and was clinically obese. He was incontinent. He was violent. He was self injuring and very unhappy. After 5 months at The Shires he has lost weight, is almost toilet trained and is a lot happier. As his mother says,
“It’s a pleasure to have him around. It really is a pleasure”
But happiness has a price. In Ben’s case it was £250,000 in annual school fees. This was too much for Bedfordshire who argued that they could meet Ben’s needs for less than half the price, £120,000 to be precise. It was not clear from the report whether or not they had included his need to be happy in their calculations.
Ben’s parents clearly do care about Ben’s happiness. It cost them £43,000, their life savings, to gather the evidence to support their case and hire expert legal representation to win their appeal. Now, after losing in the High Court, they face additional bills for costs, including those of the local authority, of around £20,000.
Bedfordshire propose to educate Ben in a local authority special school and house him in a local children’s care home. Neither the school nor the care home are autism specific. If we consider Ben’s problems prior to going to The Shires, his previous local authority special school, which is now closed, did not exactly cover itself in glory. This is no disrespect to local authority special schools. I teach in one. But I remember two pupils with whom we struggled, who went on to make excellent progress at residential schools. I can think of others I have taught who would have benefitted from the 24 hour curriculum that specialist, residential schools can offer. There is no way that you can replicate 52 week total provision by talking a child into care and bussing them to a local authority special school for 40 weeks a year.
Bedfordshire claim that Ben’s case, like every other, is
“considered individually and according to a child’s specific needs.”
If true this marks a dramatic change from their position of 3 years ago when Bedfordshire were the subject of criticism from government because they were writing generic statements of educational need and leaving it up to schools to decide on provision instead of specifying what provision to make. In the view of the government minister, if this were general policy, Bedfordshire
“will not be complying with its statutory duty and determining the special educational provision in other cases, perhaps the majority of cases.”
So have Bedfordshire put their house in order? Can the Haslams place Ben in local authority care with any degree of confidence? It might help if Bedfordshire agreed to waive costs and remove at least one financial burden from Ben’s family. After all they did tell Channel 4 News that the relevant section of the law (section 20 of the Children’s Act)
“promotes partnership in meeting a child’s needs.”
It strikes me that this is a very strange partnership if it is based on adversarial law and the parents are left making all the concessions and picking up the bill for both sides of the legal proceedings. and the Haslam’s are not a unique case. The BBC disability forum, OUCH!, provoked some interesting comments on Ben’s case.
Take this from a Bedfordshire employee who knows Ben.
I work within Children with Disabilities in Bedfordshire, and have previously worked with Ben. To see the change in him is incredible, and shows that residential schools do offer the best facilities for children with severe autism as they provide a high level of care, knowledge, structure and consistency.
Or this:
Bosscat, you are absolutely right there is no effective provision for severe autism in Bedfordshire. Local provision is based on resources and not the needs of the children and for far too long Bedfordshire has been getting away with funding the cheapest option, which generally means inadequate and substandard provision for our most vulnerable of children. Children with severe autism need access to specialist support for their severe and complex needs; they need extended support beyond the school day, more than this authority can reasonably give.
Or this from a parent in Bedfordshire:
The day-school system is failing children with severe autism in Bedfordshire and lack of resources within the county means that many severely disabled children are being denied access to programmes, treatments and therapies that could significantly improve their quality of life - Ben’s transformation is an example of what can be achieved.
I am one of many parents who have no confidence or trust in Beds children Services. In Ben’s case (and countless others) they have demonstrated a complete lack of understanding and empathy, their sole purpose is to cause misery and despair for those children and their families who are made vulnerable by severe disability and an uncaring authority. It is my sincere hope that those officers responsible for this appalling situation are sacked or at the very least not employed by the new unitary authority that comes into effect next year, anyone who supports them is not fit to hold public office.
The £250,000 cost of care at The Shires School is an average figure when compared with other independent residential special schools offering the same level of support and care. This begs the question of how Bedfordshire can provide the same level of support and care for £120,000? The simple and short answer is that it can’t. It doesn’t help to open the local paper and see that the local authority is spending thousands of pounds on hiring conference rooms, is this really what public service is about?
Apart from the inadequacy of the provision, Ben’s case raises important questions of law. As the Haslam family barrister, John Friel makes clear,
“Either we have a voluntary system or we impose it. If you impose it one would normally go through family court proceedings. So, as this is the first situation in which this has arisen … I think this is objectionable, both morally and politically.”
John Friel’s point is that children are usually taken into care either because the parents are failing their child or because they voluntarily opt for local authority care as being in the best interest of their child. In this case the Haslams are clearly not bad parents. And they are not being offered a choice. They are being coerced into placing Ben into care. The Family Court has not decided that Ben would be better off in care. In fact the Family Court has not even been involved. According to Bedfordshire, the SENDIST tribunal upheld the Haslam’s appeal “on a technicality.” So, presumably, the High Court overturned the SENDIST decision on a similar “technicality.” This whole case has been decided, not with reference to Ben’s best interests, but with reference to arcane interpretations of the workings of English case law.
I agree with John Friel. This is morally and politically objectionable.
EDIT:
I have just carried out a brief edit to remove some garbled code that came with the cut and paste comments from the BBC website and made it look as if I am a Bedfordshire parent. I am not. But my experience in Cumbria and that of many other parents I have met in the course of my NAS activities suggests that Bedfordshire is not the only authority that tries to shoehorn children into existing resources rather than tailoring resources to meet individual needs.
I am familiar with the argument that council budgets are already under a lot of pressure and they have to make best use of resources. But wasting resources on inadequate provision and pretending it is in the best interests of the child is both a false economy and a falsehood perpetrated on families who struggle with disability and the taxpayers who have to foot the bill.
And, as Kristina has noted in her blog on this subject, parents in the USA face similar conflicts. Sharon has blogged this as well and Madeline provides an interesting link to a story by Sarah Spiller, the reporter in the Ben Haslam story. She is an autism parent herself and had to battle through the courts to get proper provision for her child. And so it goes on.
July 20th, 2008
Posted by
Mike |
Autism, autism parents, education, government, parents, politics |
3 comments
