Archive | June, 2010

Blocking immunisation

2 Jun

The rise of a public anti-vaccine movement in the US is partly to blame for blocking effective immunisations according to the AAP today.

A story on WebMD says that the

…rise of a public anti-vaccination movement that uses the Internet as well as standard media outlets to promote its position, which is “wholly unsupported by any scientific evidence” linking vaccines with autism and other childhood conditions.

is at least partly to blame for ensuring that ‘pockets’ of unimmunised children exist throughout the US. Other reasons given include problems with cost.

Read the whole story at Web MD (@WebMd).

AutismOne Generation Rescue conference expells registered attendees

2 Jun

Autism News Beat has this story in full in Listening to parents at AutismOne. AutismOne is a parent convention with a major focus on alternative medicine. To put them in perspective, Jenny McCarthy is a frequent keynote speaker and Andrew Wakefield was honored by AutismOne last year after it was revealed that his study was possibly tainted by misreporting of results.

If you recall, AutismNewsBeat was expelled from a previous AutismOne conference. He had just asked, respectfully, an important question of Hannah Poling’s mother (Hannah Poling is the child whose case before the vaccine court was conceded on the basis of vaccines aggravating an underlying mitochondrial disorder). To my knowledge, AutismNewsBeat has no been given a clear reason for the expulsion.

A filmmaker/Journalist was present at this year’s AutismOne. Lars Ullberg had applied for press credentials and was denied. AutismOne responded to this request stating:

Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.

AutismNewsBeat asked AutismOne for details on why Mr. Ullberg was removed from the conference, but he has yet to receive a response.

I find the wording and possible intent of this sentence rather odd: ” Autism One grants no permission to you or your crew to report on this conference or its attendees”. If an attendee chose to be interviewed, would that not be OK? The conference appears to be speaking for its attendees.

In addition, a public health official was in attendance for this year’s AutismOne conference. This person also was asked to leave. According to AutismNewsBeat:

A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.

A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.

Perhaps in the case of the journalist, AutismOne was afraid of bad press. But haven’t parent groups been asking for some time for people to listen to them? A public health official attends the conference in order to listen and is expelled.

Generation Rescue and Autism One appear to be working in a very defensive, entrenched mode. Internet chatter is mentioning closed sessions where Andrew Wakefield spoke. Closed sessions? Expelling journalists? Refusing permission for journalists to report on what attendees have to say–even if the journalist clearly identifies himself? Asking public health officials to leave for no apparent reason? Again, this comes across to me as an entrenched, defensive mindset.

Andrew Wakefield – as succesful an author as researcher

2 Jun

Andrew Wakefields supporters were hoping his new book would be a bestseller. That ain’t going to happen given how much a publishing insider revealed to me how many he has actually sold:

He sold a total of 1017 copies. Top sales 157 copies in NYC. 46 in LA, 43 in Atlanta (perhaps CDC people wanted to see what he said?!), 38 in Boston, 24 in Chicago, 18 in Seatlle and 17 copies in his hometown of Austin

Ouch. It’ll be interesting to see how well the book does as interest in it fades. Or maybe ‘well’ isn’t the right word.

Another Wakefield paper retracted

1 Jun

Following the retraction by The Lancet of Mr. Wakefield’s “landmark” 1998 paper, many speculated as to if and when other retractions would follow.

The patient pool Mr. Wakefield relied upon for his study was very biased by the referral process. Also, Mr. Wakefield’s team was working without ethical approval for many of the children studied. The natural question to follow is not if The Lancet should retract, but how many papers by Mr. Wakefield’s team were also tainted and should be retracted.

The American Journal of Gastroenterology has retracted a paper from 2000 by Mr. Wakefield’s team: Enterocolitis in Children With Developmental Disorders.

Here is the notice:

Retraction: Enterocolitis in Children With Developmental Disorders

A J Wakefield, A Anthony, S H Murch, M Thomson, S M Montgomery, S Davies, J J O’Leary, M Berelowitz and J A Walker-Smith

Am J Gastroenterol 2000; 95:2285–2295

On 28 January 2010, the UK General Medical Council’s Fitness to Practice Panel raised concerns about a paper published in the Lancet by Dr Wakefield et al. (1). The main issues were that the patient sample collected was likely to be biased and that the statement in the paper, that the study had local ethics committee approval, was false. There was also the possibility of a serious conflict of interest in the interpretation of the data. The Lancet has now retracted this paper (1). This paper in the American Journal of Gastroenterology (AJG) (2) also includes the 12 patients in the original Lancet article and therefore we retract this AJG paper from the public record.

Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

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