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OSR#1: Industrial chemical or autism treatment?

26 Jan

The Chicago Tribune has added another chapter to their ongoing series posing difficult questions to the autism alternative medical community. OSR#1: Industrial chemical or autism treatment?, by Trine Tsouderos demonstrates the very low standards the alt-med community is willing to accept, at least when it comes to “supplements”.

OSR#1 is being marketed as a supplement by Boyd Haley, retired professor of Chemistry from the University of Kentucky. The chemical used is a powerful chelator, which will come as no surprise to those familiar with Dr. Haley’s history as a proponent of the mercury causation theory in autism. However, “chelation” is not mentioned in the marketing for OSR#1.

Trine Tsudorous has a style I like. She asks very tough questions, points the spotlight on questionable practices and backs up her stories with quotes from experts in the field.

One of the biggest questions raised about OSR#1 is whether the appropriate safety testing has been performed. The marketing doesn’t mention that the chemical used is a chelator.

The company that makes the supplement, CTI Science, describes it as an antioxidant. But pharmacologist Dr. Arthur Grollman, director of the Laboratory for Chemical Biology at State University of New York at Stony Brook, said it is obvious from the product’s chemical structure that it is also a “powerful chelator,” a compound that binds to heavy metals such as mercury.

Note that CTI Science used to be called “Chelator Technologies, inc”. The chemical used in OSR#1 was invented (and patented) by a colleague of Dr. Haley’s at the University of Kentucky. According to the Tribune story, the original purpose of the chemical was to chelate “heavy metals from soil and acid mine drainage.”

Why would someone avoid calling a chelator a chelator? Especially in the autism alternative-medical community which has been led to believe that chelation is a valid treatment for autism? It appears that chelators are drugs and, as such, are subject to much more stringent and costly safety and efficacy testing than supplements. Dr. Haley is quoted as describing the chemical as “a food”. To my knowledge, this chemical is not found in nature and is not an extract from some food but, rather, a synthetic compound.

From the FAQ for OSR#1

Is OSR#1® a natural compound?

OSR#1® is a combination of two natural compounds that are non-toxic.

Perhaps I missed something–but either this is dodging the question or this is an admission that OSR is not a natural compound. However, either way the wording is carefully chosen.

Ms. Tsuderous brought in an expert on antioxidants for her story as w ell.

“I would worry a lot about giving anything to a small child that hasn’t been scrutinized for both safety and efficacy by the FDA,” said antioxidant expert Dr. L. Jackson Roberts, a pharmacologist at Vanderbilt University School of Medicine.

Which brings up the question, has the safety and efficacy been scrutinized by the FDA? From the Tribune story:

In January 2008 Haley changed the name of his company from Chelator Technologies Inc. to CTI Science Inc. Less than a month later, he notified the FDA he would be introducing the compound as a new dietary ingredient.

Federal law allows manufacturers of dietary supplements to market them without the rigorous testing for safety and efficacy the FDA requires of drugs. Developing, testing and bringing a drug to market can cost hundreds of millions of dollars, according to some studies.

But the law does require makers of supplements containing new dietary ingredients — such as OSR#1 — to establish that the product can be expected to be safe.

In June 2008, an FDA senior toxicologist sent a letter to Haley that questioned on what basis the product could be expected to be safe and could be considered a dietary ingredient. According to FDA spokeswoman Siobhan DeLancey, Haley has not responded to the request for more information.

DeLancey declined to discuss OSR#1 specifically, but she said the government prohibits companies from selling a product until the safety requirement is satisfied. Penalties can include warning letters, seizure of products or criminal prosecution. DeLancey said she did not know of any actions taken against Haley or his company.

Haley did not respond to questions from the Tribune about the FDA.

Well, Dr. Haley hasn’t responded to the request for more information. He could face…a warning letter. Sorry, that just summons up images of Michael Palin doing the “Spanish Inquisition” sketch from Monty Python. So far the FDA seems to have let this case slide for over a year, and should they focus attention on OSR#1 and find fault they might issue a “warning letter”? Has the FDA no teeth?

Some of the questions that arise in my mind reading this article are:

1) Is OSR#1 a chelator?
2) is it being marketed as an antioxidant/supplement to avoid the more costly and time consuming process of approving a drug?
3) is the level of safety testing OSR#1 has undergone appropriate?
4) are the customers for OSR#1 buying it as a chelator or as an antioxidant/supplement?

Let’s take a look at these questions

First, is OSR#1 a chelator? It appears the answer is a fairly clear Yes:

The company that makes the supplement, CTI Science, describes it as an antioxidant. But pharmacologist Dr. Arthur Grollman, director of the Laboratory for Chemical Biology at State University of New York at Stony Brook, said it is obvious from the product’s chemical structure that it is also a “powerful chelator,” a compound that binds to heavy metals such as mercury.

Second, is OSR#1 being marketed as an antioxidant/supplement to avoid the more costly and time consuming process of approving a drug? I don’t think we can tell the motivations of Dr. Haley or his company. However, the Tribune story seems to ask the same question:

In January 2008 Haley changed the name of his company from Chelator Technologies Inc. to CTI Science Inc. Less than a month later, he notified the FDA he would be introducing the compound as a new dietary ingredient.

Federal law allows manufacturers of dietary supplements to market them without the rigorous testing for safety and efficacy the FDA requires of drugs. Developing, testing and bringing a drug to market can cost hundreds of millions of dollars, according to some studies.

Third, is the level of safety testing appropriate? Again, the Tribune brings up the question of whether the FDA has had all its questions answered, even for the lower standard of a supplement.

While not directly on point as to the safety testing, two quotes from the Tribune story stick in my mind when it comes to safety/efficacy:

Ellen Silbergeld, an expert in environmental health and a researcher funded by the National Institutes of Health studying mercury and autism at Johns Hopkins University Bloomberg School of Public Health, said she found the sale of the chemical as a supplement for children “appalling.”

and

“Treatment of autistic children with a potent chelator is potentially hazardous and offers no benefits,” Grollman said.

Lastly, I posed the question of whether the customers for OSR#1 are buying it as an “antioxidant/supplement” or as a chelator. Again, it is very difficult to ascribe motivations. However, I will point out that in over 400 comments to the Tribune piece, few (if any!) discuss OSR as an antioxidant. Instead there is much discussion of mercury. Rather odd discussion for something that is marketed “only as an antioxidant supplement”.

If you want more details than in the Tribune article, OSR was discussed by Kathleen Seidel of Neurodiversity.com in three articles:

A Fine White Powder

The Industrial Treatment

and

An Inquiry Emerges

Kathleen Seidel is the blogger with the most thoroughly researched articles I have ever seen.

One of the complaints about Ms. Tsudorous’ previous articles, posed by those promoting alternative medical treatments for autism, is that she didn’t seek out “balance”. First, Ms. Tsudorous did enough hard legwork to support her stories without having to rely on pitting parent/advocate opinion on an equal footing with medical experts. Second, Ms. Tsudorous attempted to get comments from a prominent parent/advocate who had publicly touted OSR#1. The parent declined to let her opinion be heard.

The bottom line for this autism parent? OSR#1 doesn’t come close to being something I would give to my child, no matter whether you call it a supplement or a drug. First I side with Dr. Grollman (“Treatment of autistic children with a potent chelator is potentially hazardous and offers no benefits”). Second, what I have seen of the safety studies doesn’t meet my standards. That’s putting it lightly.

edit to add: the Tribune has posted some of the communications between the FDA and the company selling OSR#1:

Click to access 51678955.pdf

Autism Epidemic Talk Part II

25 Jan

Some more rumblings on the wider web regarding the autism ‘epidemic’ – I’m not allowed to carry on commenting at Harold’s (he allowed me one then when I further backed up my points he refused to allow those comments through. Amazing behaviour from someone who _invited_ me to take part in a dialogue!)

Take a closer look – always take a closer look – and what do we see from those convinced there is such a thing as an autism epidemic. We see opinion and we see personal anecdote. Much of it self fulfilling nonsense along the lines ‘before my Billy was diagnosed I didn’t know any autistic kids, now theres 20 just in his class!!!!’ or the classic ‘I asked my teacher/doctor/social worker/whatever and they said they’d never SEEN so many autistic people!’ Well…d’uh…of course not. Better diagnosis, increased ascertainment, more centres for diagnosis, more cultural awareness etc etc etc will lead to more people with a diagnosis. As would a real increase.

The bottom line for me is this: nobody knows if there’s a real autism ‘epidemic’ or not. Not in the strict epidemiological manner the word is used in. Why? Because really, despite all our bombast we (the entire autism and autistic community) know jack shit about autism from a perspective of how many autistic people thre are and what may cause fluctuations.

Take this story I found today which argues very persuasively that girls are not fully accounted for in autism epidemiology. Imagine that we take this too literally and hypothesise that autism is equally prevalent amongst girls as it is boys. The rate in the UK would shoot up to between 1.5 and 2% of the entire population. Would that have been a real increase? Of course not.

Beware of those people who will tell you with certainty that there is an autism epidemic. The truth is that there is no conclusive science either way. Until it is done *no one knows* .

Autistic Woman Raped in Broad Daylight

25 Jan

This is just a nightmare scenario in so many ways. Sexual abuse is just horrible in any form. Rape is just plain evil. I don’t think one can say any case is worse than another, but I can say that this case hurts me, a total stranger, very deeply.

An autistic woman was raped on a busy street in broad daylight.

I got the story from a google news alert pointing to this blog post, Autistic Woman Raped By Teen, No One Helps. It is worth reading the story, but I’ll pull one statement out, this from the victim:

“I’m ticked off because people were doing nothing. Just driving by. What kind of humans are we becoming?”

I wish I could talk more to this story, do more research. I just can’t right now. What a nightmare. I hope the victim gets the help she needs to heal as much as possible from this horrible trauma.

What are the charges against Dr. Wakefield?

25 Jan

The General Medical Counsel is set to publish their findings this week in the case of Doctors Wakefield, Walker-Smith and Murch. With that deadline there is a lot of discussion going on about the GMC hearings. I see a lot of comments about how this is some sort of referendum on the research, which isn’t really the case. So, I thought I would (again) post the list of charges.

Below is a short version. I say short because the full version is 93 pages long.

The goal of the GMC is *not* to determine the scientific quality of the research. Rather, it is to determine whether the three doctors acted ethically in their treatment of their patients and whether they acted ethically in preparing the research report. It is a “fit to practice” determination. I.e. the question asked is whether these gentlemen “fit to practice” medicine in the UK, not whether their research was accurate or of high quality.

The focus of the inquiry on the ethical treatement of the patients is why you will find the phase “Your conduct as set out above was contrary to the clinical interests of Child X” repeatedly in the GMC charges.

To make this point clear, here is a section of the GMC statements

The GMC does not regard its remit as extending to arbitrating between competing scientific theories generated in the course of medical research.

The GMC hearing is not about whether the team led by Dr. Wakefield questioned the safety of MMR. It is about whether they acted in an ethical manner. The accusations are quite serious in nature. I count about 30 instances of the phrase “contrary to the clinical interests” in the GMC charges. I personally find those charges to be the most serious. Well beyond any questions of professional misconduct involving the research paper.

At this point, these are still charges. Many are listed as “admitted and found proved”, but those are mostly statements of recorded facts such as what procedures were performed on specific children and when.

With that in mind, here is a short version of the GMC’s description of the Fitness to Practice Panel’s effort:

Dr Andrew WAKEFIELD
Professor John WALKER-SMITH
Professor Simon MURCH

Fitness to Practise Panel

Planned dates: 4 – 29 January 2010
This session is expected to last 20 days.

Please note that the Panel is currently deliberating in private session until further notice.

The Fitness to Practise Panel will meet at Regent’s Place, 350 Euston Road, London NW1 3JN, to continue its inquiry into three new cases of conduct.

This case will be considered by a Fitness to Practise Panel applying the General Medical Council’s Preliminary Proceedings Committee and Professional Conduct Committee (Procedure) Rules 1988.

Dr Andrew WAKEFIELD
GMC Reference number: 2733564
Professor John WALKER-SMITH GMC Reference number: 1700583
Professor Simon MURCH
GMC Reference number: 2540201

The GMC’s statutory purpose is to protect, promote and maintain the health and safety of the public by ensuring proper standards in the practice of medicine.

We investigate complaints about individual doctors in order to establish whether their fitness to practise is impaired and whether to remove or restrict a doctor’s registration.

The GMC does not regard its remit as extending to arbitrating between competing scientific theories generated in the course of medical research.

The following is a summary only of the allegations which will be made before the Panel at the forthcoming hearing.

The Panel will inquire into allegations of serious professional misconduct by Dr Wakefield, Professor Walker-Smith and Professor Murch, in relation to the conduct of a research study involving young children from 1996-98.

Dr Wakefield, Professor Walker-Smith and Professor Murch, were at the relevant times employed by the Royal Free Hospital School of Medicine with Honorary Clinical contracts at the Royal Free Hospital.

It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”.

The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.

It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.

The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).

It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.

The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.

The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.

The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.

The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.

We cannot guarantee that all those wishing to attend the hearing will be able to do so, as seating is limited. If you plan to attend the hearing please email the GMC press office press@gmc-uk.org. In the event that we have to allocate seats those people who have notified the press office will be seated before others.
-Ends-

For further information please contact the Media Relations Office on 020 7189 5454, out of hours 020 7189 5444, fax 020 7189 5401, email press@gmc-uk.org, website http://www.gmc-uk.org.

The General Medical Council licenses doctors to practise medicine in the UK. Our purpose is summed up in the phrase: Regulating doctors, Ensuring Good Medical Practice.

The law gives us four main functions:
• keeping up-to-date registers of qualified doctors
• fostering good medical practice
• promoting high standards of medical education
• dealing firmly and fairly with doctors whose fitness to practise is in doubt

Brian Deer: Truth of the MMR vaccine scandal

24 Jan

The General Medical Counsel (GMC) hearings on doctors Andrew Wakefield, John Walker-Smith and Simon Murch are over and the decision is expected to be made public this week. Brian Deer, the reporter who broke the story exposing the possible misdeeds involved in the MMR-causes-autism research conducted at the Royal Free Hospital by Wakefield et al., has a story out in the Sunday Times:

Truth of the MMR vaccine scandal
After an epic misconduct hearing, the doctors who caused panic over the vaccine are about to learn their fate. A report on the greatest health scare of recent times

The story re-introduces the readers to the story of MMR scare and how it began. I suspect the real story will come out after the GMC decision is handed down and details from the patient records are discussed as in Brian Deer’s recent articles such as MMR doctor Andrew Wakefield fixed data on autism.

Mr. Deer faces a pretty major smear campaign from Dr. Wakefield’s supporters. I can only expect it to get worse after the decision is handed down–whatever that decision may be.

Autism Epidemic Talk

20 Jan

A couple of slap dash blog pieces appeared today both on the same subject – the so called autism epidemic. First off is Harold who writes about a series of interviews with David Kirby. David says:

<blockquote>It’s crazy that in this debate, we’re still debating whether autism numbers are actually going up or not, which is insanity to me. It’s people desperately clinging to this belief that autism is genetic, that it’s always been with us at this rate, that we’re just better at counting it, better at diagnosing it.</blockquote>

Harold claims David has ‘hit the nail on the head’ with this quote. I disagree with Harold and I disagree with David. Its far from insanity to examine a perfectly valid hypothesis. More later.

Anne Dachel at the Age of Autism writes :

<blockquote>Why do I personally know so many young people with severe autism, whose symptoms can’t be ignored?  How could we have just ignored these people in the past?  Where are those misdiagnosed adults with classic autism—those with the same symptoms we see in so many children today?

I’m not talking about [Kristina] Chew’s autistic neighbor who was able to have a conversation with her, or [Paul] Offit’s people who are kind of ‘quirky.’  I mean adults who can’t talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth.</blockquote>

Dachel goes on to list several news reports which question the idea of there not being some kind of an epidemic. I disagree with her view and I disagree with the way she has reached her view.

Both Dachel and Harold (and David Kirby come to that) are claiming that epidemiology can be ursurped by individual experience – Dachel’s individual experience with ‘so many young people’ and David’s individual experience with the idea that people are desperately clinging on to some sort of belief in a genetic form of autism.

Now, casting aside the fact that the some of the forms of autism that we know about (Rett Syndrome etc) _are_ solely genetic we have to – as we do with _all_ forms of science, cast aside personal anecdote when making sweeping statements about a very large group of people. What we need to do instead is look at the science. So what does the science say?

Nothing. As far as I can see no firm case has been made that there either is or is not an autism epidemic. Why? Because the science hasn’t been done. It is maybe worth noting that it is the firm opinion of autism experts that a large part of any possible rise is due to:

a) Better diagnostic tools

b) More places at which to recieve a diagnosis

c) More awareness amongst clinicians of autism

d) Earlier diagnosis

e) Diagnostic substitution

f) Widening of diagnostic criteria

Experts such as Eric Fombonne, Roy Richard Grinker and Simon Baron-Cohen have all spoken about these ideas at length. However, that doesn’t make them right. There still seems to be no hard and fast science that says there is an autism epidemic or not.

The Tribune leads the way on autism coverage

19 Jan

The story sounds too lurid to be true – ignoring FDA regulations, a retired chemistry professor takes a chemical used to treat toxic waste,  and repackages it as a dietary supplement for disabled children. Welcome to the world of autism quackery.

The story in Sunday’s Chicago Tribune is the latest in a year-long investigation into America’s anti-vaccine movement, and its spin-off treatment industries. Last May the newspaper introduced us to <a href=”http://www.chicagotribune.com/health/chi-autism-lupron-geiers-may21,0,983359.story”>a Maryland physician</a> who purports to treat autism with Lupron, a powerful castration drug also used to treat sex offenders. In November, reporters Trine Tsouderos and Patricia Callahan showed how alternative practitioners <a href=”http://www.chicagotribune.com/health/chi-autism-science-nov23,0,6519404,full.story”>misrepresent legitimate science</a>, and <a href=”http://www.chicagotribune.com/health/chi-autism-treatments-nov22,0,7095563,full.story”>use phony lab results</a>, to push quack autism treatments. “There is a whole industry that preys on people’s fears of heavy metal poisoning,” said Dr. Carl R. Baum, director of the Center for Children’s Environmental Toxicology at Yale- New Haven Children’s Hospital, something that comes as no surprise to the nation’s 60,000 pediatricians.

The latest story introduces us to Prof. Boyd Haley, a retired former head of the Department of Chemistry at the University of Kentucky, and a micro-celebrity in the vaccine-rejection community. His wonder-drug, called OSR#1, was first formulated as an industrial chemical that separates heavy metals from polluted soil and mining drainage. Haley first repurposed the chemical as a chelating agent for treating autism, but when FDA approval was not forthcoming, he rebranded OSR as a nutritional supplement. Only one problem – the FDA says food supplements must be, uh, edible.

No wonder Haley runs from publicity he can’t control.

Federal law requires manufacturers to explain why a new dietary ingredient reasonably can be expected to be safe. The Food and Drug Administration told the Tribune that Haley had not submitted sufficient information.

In an interview, Haley said that the compound had been tested on rats and that a food safety study was conducted on 10 people. Asked to provide documentation of the studies, he stopped communicating with the Tribune.

Experts expressed dismay upon hearing children were consuming a chemical not evaluated in formal clinical trials for safety, as would be required for a drug prescribed by doctors.

Ellen Silbergeld, an expert in environmental health and a researcher funded by the National Institutes of Health studying mercury and autism at Johns Hopkins University Bloomberg School of Public Health, said she found the sale of the chemical as a supplement for children “appalling.”

“I would worry a lot about giving anything to a small child that hasn’t been scrutinized for both safety and efficacy by the FDA,” said antioxidant expert Dr. L. Jackson Roberts, a pharmacologist at Vanderbilt University School of Medicine.

The anti-vaccine movement has long relied on message control to convince parents that vaccines were more risky than the diseases they protect us against, and for too long credulous editors and reporters obliged with dutiful stenography and false balance. The Tribune’s coverage shows us that those days are numbered.

Cross-posted at AutismNewsBeat.com

ASAN Update on Restraint & Seclusion Legislation National Call-In Day

15 Jan

I just received the following email from Meg Evans of the Autistic Self Advocacy Network (ASAN). ASAN is working on legislation to reduce seclusion and restraints within the schools. This alert calls for action next Thursday to call your representative (should you be a U.S. citizen) to support upcoming bills.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. To increase support in Congress for the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860), ASAN and APRAIS are asking disability rights advocates and others who favor the legislation to call members of Congress on Thursday, January 21st, and ask them to co-sponsor the bill. You can also help by reposting and distributing the announcement below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Here is the letter:

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress — please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

To find out the names of your US Senators and Representative, click here (link to www.congress.org)
Ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

Message: ” I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Forbes on “Stars Vs. Science” once again the autism community looks bad

15 Jan

Forbes Magazine has an article, Stars Vs. Science, From Jenny McCarthy to Tom Cruise, some Hollywood hot shots are leading a war against modern science. The opening paragraph is pretty telling about the tone:

When the medical journal Pediatrics released a consensus report early this year concluding that autistic children do not benefit from special diets, ABC News’ Diane Sawyer knew just whom to call. Jenny McCarthy, former MTV game host, nude model and now mother of an autistic son Evan, enthusiastically denounced the study. “Until doctors start listening to our anecdotal evidence, which is it’s working, it’s going to take so many more years for these kids to get better,” she opined

Or, you can just take a look a the URL–science-jenny-mccarthy-business-healthcare-hollywood-autism.html

Once again, the Autism community takes it on the chin that our representative in the public eye is, well, in a league of her own when it comes to understanding science. Even though the story is about celebrities and science in general, autism plays a big part in the story as a whole. Take a look at the celebrities that were selected for the “slideshow”

Of course, there are Jenny McCarthy and Jim Carrey (click to enlarge and read the caption):

Ms. McCarthy and Mr. Carrey have been trying to shake loose the anti-vaccine image for a while. It doesn’t appear to be working. From the article:

But some of the best-known celebrities use their soap boxes to spread scientifically dubious–and potentially harmful–messages. Jenny McCarthy believes vaccines cause autism, despite numerous studies to the contrary. She campaigns against child vaccines that have been shown to save lives. In 2008, the Centers for Disease Control reported that measles outbreaks had spiked because more parents were deciding to leave their children unvaccinated, thanks to the burgeoning anti-vaccine movement.

Others who made the cut? Arriana Hufffington, of the Huffington Post, (again. click to enlarge):

It is worth reading the caption to that one. Dr. Rahul Parikh is quoted from his Salon.com piece, The Huffington Post is crazy about your health, Why bogus treatments and crackpot medical theories dominate “The Internet Newspaper”.

The quote:

But Huffington has distorted science and facts…fairness and accuracy in health and medicine take a back seat to sensationalism and self-promotion

In his piece, Dr. Parikh had noted the Huffington Post blogs by “David Kirby, Jenny McCarthy’s pediatrician Jay Gordon and detox advocate Dierdre Imus” and also spends a considerable amount of time discussing a piece by Jim Carrey.

The Forbes piece also discusses Oprah Winfrey (click to enlarge):

Once again, autism is prominent in the description given by Forbes.

I’m sure some readers will assume I’m putting this up to embarrass these celbrities. Yeah, like being in Forbes is so low profile that LBRB is going to be the embarrassment for Oprah and company. No, this is just another vent of anger. Anger that the autism community is once again seen by the public as the home to people who are “leading a war against modern science.” Tell me how that helps us advocate.

One notable entry outside of autism is Bill Maher. (click to enlarge)

I bring this up because Forbes notes that Bill Maher has been discussed by “quack busting doctor-blogger David Gorski”. That’s the same guy you can find on Science Based Medicine,

The article does seem to be following a recent trend: they aren’t looking for “balance” by quoting groups from the anti-science side. Instead, qutoes are had by:

William Schaffner, chair of preventive medicine at Vanderbilt School of Medicine:

“These are folks who really don’t have the best information, but because they are vocal and well organized their message has gotten out” [as a result] “around the country pediatricians and their staffs are having to spend more and more time persuading parents to have their kids vaccinated in a timely fashion. It is an enormous problem.”

Stephen Barrett of Quackwatch.org

“Talk shows don’ t pay any attention to whether the advice on their program will kill people. … Producers consider it entertainment,” he says, adding: “Never take health advice from a talk show.”

and

Dr. Paul Offit of the Children’s Hospital of Philadelphia:

Why do celebrities feel the need to spout off on medical or scientific matters? Because they’ve excelled in one field, stars “think they’re an expert in many things,” says the vaccine expert Offit. “That part doesn’t bother me. It’s the part that we listen that bothers me.”

I’m inclined to agree with Dr. Offit. It is the part that we listen to celebrities when they talk about things far outside their expertise that bothers me.

National Council on Disabilities meeting next Tuesday

15 Jan

I realized a while back that I should be posting the announcements of the NCD (National Council on Disabilities) as well as the IACC announcements I post.

The NCD meeting is being held at the same time as the IACC meeting, for the first day at least. The NCD meeting starts on the 19th (the day of the IACC meeting) but goes on to the 21st. The meeting is being held in Houston, Texas.

Dear Friends and Colleagues:

On behalf of the National Council on Disability (NCD), it is my pleasure to invite you to attend NCD’s next quarterly meeting, which will take place at the JW Marriott Houston, 5150 Westheimer, Houston, TX, beginning at 8:30 a.m. on Tuesday, January 19, 2010, and ending at 11:00 a.m. on Thursday, January 21, 2010. This meeting is open to the public.

NCD’s purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. To carry out this mandate we gather public and stakeholder input, including that received at our public meetings held around the country; review and evaluate federal programs and legislation; and provide the President, Congress, and federal agencies with advice and recommendations. NCD is an independent federal agency, composed of 15 members appointed by the President, by and with the consent of the U.S. Senate.

NCD believes it is vital to hear from communities around the country on what works and what does not for people with disabilities. This meeting will provide another opportunity for that exchange. The agenda will include, among other things, presentations by the Honorable Kathleen Martinez, Assistant Secretary of Labor for Disability Employment Policy and Lex Frieden, Professor of Health Informatics and Professor of Rehabilitation, University of Texas at Houston; presentations on emergency preparedness and youth with disabilities in transition; and two releases of NCD research projects: Workforce Infrastructure in Support of People with Disabilities and The State of Housing in America in the 21st Century: A Disability Perspective.

Specific times are also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. A public comment session will be held Wednesday, January 20, from 11:30 a.m. until Noon, CST. The toll-free call-in number is (888) 790-6568, and the pass code is “NCD Meeting.” Written comments on disability-related issues of concern or interest can also be emailed to mquigley@ncd.gov at any time.

You are also invited to join us for a reception at the hotel for meeting participants, audience members, and stakeholders from the disability community on Wednesday, January 20 from noon until 1:30 p.m. Additional details about the meeting will be posted on the NCD Web site at http://www.ncd.gov as soon as they become available. You will also find the meeting agenda posted there approximately 10 days before the meeting is scheduled, and written comments for Council consideration can be submitted at any time by writing to ncdinfo@ncd.gov.

For more information, please contact NCD’s Director of External Affairs, Mark S. Quigley, at mquigley@ncd.gov or by telephone at 202-272-2004 (V), 202-272-2074 (TTY), and please visit our Web site at http://www.ncd.gov. At that location you can also sign up to become a member of our extensive listserv, where you will get frequent updates about NCD activities, reports, and news of importance to the disability community nationwide.

We hope you will attend and participate.

Sincerely,

John R. Vaughn
Chairperson

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