Archive | September, 2008

U.S. Ammends the Americans with Disability Act (ADA)

26 Sep

Almost lost in all the discussions of $700B bailouts, president Bush today signed the ADAAA (lets hope they don’t have to amend that–the ADAAAAA).

The Americans with Disabilities Act, as you might imagine, gives certain rights to people with disabilities. It’s what’s behind the 504 plans that some students have who don’t have IEP’s (individual education plans). The ADA also applies to adults, say requiring accommodation in the workplace.

Unfortunately, since the original ADA was passed, court decisions have limited the scope of the ADA. Basically, the amended ADA attempts to restore the original intent of the ADA.

This means that the ADA will again apply to a broader group, likely including, for example, diabetes, epilepsy, HIV-AIDS…and, it looks like Aspergers and other of the so-called “mild” ASD’s should get better protection.

Another way to look at this is part of the statement by COPAA (the Council of Parent Attorney Advocates) which stated,

First, the ADAAA overturns in large part the Supreme Court’s decision in Sutton v. United Airlines, which held that people with disabilities were not eligible under the ADA if their conditions could be mitigated by medication, assistive technology and equipment, or learned behavioral adaptations. The law also overturns Sutton’s holding that a disability must limit more than one major life activity. Moreover, the bill will clarify that major life activities include working, communicating, concentrating, thinking, reading, and other activities of central importance. Although Sutton arose in the ADA context, its holding was equally applicable to 504 cases, and thus, the override is made applicable to 504.

I need to look closer at this, but it really looks like a major, good event.

Autism's False Prophets selling well

26 Sep

Autism’s False Prophets” has caused quite a stir in the autism-vaccine advocacy community. They started early and they worked somewhat hard to defuse the book’s impact. Consider an earlier post on the Age of Autism blog. This was titled “Phalse Profits: Offit’s Book Peaks At 8,173“.

The 8,173 was the rank of the book in Amazon.com. The blogger apparently had been watching day by day and noted the book’s rank. After the initial peak, the blogger reported back.

The blogger was trying to make a point that Dr. Offit’s book isn’t being purchased in high numbers. I never expected it too. As I write this, it has risen to #779. It was at 715 yesterday, but I haven’t been watching that closely to see if that was the “peak”. Not too shabby. It is also number 1 in a few categories, including:

Books > Science > Medicine > Administration > Policy > Health Care Delivery
Books > Science > Medicine > Administration > Policy > Public Health
Books > Professional > Technical > Professional Science > Biological Sciences > Biology > Microbiology

I don’t expect Age of Autism to write a correction. Then again, I didn’t expect longtime vaccine-autism activist Rick Rollens to admit that MMR doesn’t cause autism, so who knows?

In my mind I find an interesting analogy to Mark and David Geier declaring that the CDDS autism count showed “early downward trends”, indicating that, yes, thimerosal caused autism.

They seemed to stop watching and didn’t report back when it turned out that the “early” trend was, in fact, false.

They left that up to Schechter and Grether

But, I digress. Autism’s False Prophets is not the kind of book to become a best seller. Too bad, really, as it is quite well done. But, that is not to say that the book isn’t doing quite well.

Good for whatever autism research group gets the proceeds. Yep, Dr. Offit is donating the proceeds to autism research.

Vaccines on the Hill part 2

25 Sep

We recently discussed the Malony briefing where she hosted David Kirby and Mark Blaxill in a discussion of autism and vaccines. As part of that post, I included a letter from Amy Pasani of Every Child By Two.

On a hunch, I checked with another organization, Voices For Vaccines, to see if they had contacted legislators. Lo and behold, they did:

Dear Senator or Representative:

The organizers of a briefing being held later today have listed your office as one from which a staff member will be in attendance. I would like to supply some information which may place the content of the briefing in context.

Today’s event, sponsored by Rep. Carolyn Maloney, will feature Mr. David Kirby and Mr. Mark Blaxill speaking on the claim that vaccines cause autism. This is a notion which is not supported by scientific evidence. It is also one that has been recognized by the mainstream medical community as posing a threat to the health of Americans.

I am attaching an Open Letter to Congress, issued last June, in which 84 national, state, and local organizations emphasized their support for immunization as a cornerstone of United States public health, and made clear their desire for Congress to follow a sound, evidence-based course in evaluating legislation related to vaccines. As you are undoubtedly aware, this year brought a sharp upswing in cases of measles, most of which were associated with importation of the virus by unvaccinated individuals. These outbreaks reflect vaccine reluctance borne of misplaced fears. The agenda for today’s briefing indicates that it will fan, rather than quell, those fears.

While the presenters will no doubt couch their claims in scientific-sounding language and the rhetoric of impending doom, you can rest assured that no new information has emerged to lead credible scientists to raise concerns about vaccine safety. The popular concept of an “autism epidemic” is largely, if not wholly, an artifact of diagnostic shifts and a broadened definition of autism. There has been no government concession that vaccines cause autism, only that they might have hastened the appearance of autistic-like features in one Vaccine Injury Compensation Program claimant. What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

For further information on these topics, I recommend the following sites:

Centers for Disease Control and Prevention – Autism http://www.cdc.gov/ncbddd/autism

Centers for Disease Control and Prevention – Immunization http://www.cdc.gov/vaccines

American Academy of Pediatrics – Autism http://www.aap.org/healthtopics/autism.cfm

American Academy of Pediatrics – Immunization http://www.aap.org/healthtopics/immunizations.cfm

Vaccine Education Center, Children’s Hospital of Philadelphia http://vaccine.chop.edu

Best regards,

Lisa H. Randall, J.D.
Interim Executive Director
Voices For Vaccines
325 Swanton Way
Decatur, GA 30030
http://www.voicesforvaccines.org

If the reaction to Ms. Pisani’s letter is any guide, one sentence in the letter above will be particularly targeted by some vaccine-autism advocacy groups:

What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

Some may complain about that, but not me.

Keeping the theme used for the previous post, I’ll close with this statement:

Why reproduce the Lisa Randall’s letter here? Because many in the greater autism community agree with Ms. Randall. This blogger certainly does. I hope that legislators know that members of the autism community side with Voices for Vaccines on this subject.

Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani's letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

Whilst Mother Warrior McCarthy Oprahed…

25 Sep

David Kirby, who recently had a puzzling and somewhat inexplicable spat with Dr Rahul Parikh was carrying the torch for the male contingent of the autism/antivax crusaders along with Mother Fu…sorry..Worrier Dad…sorry…chief of the quackosphere (term not coined by me but too good not to use) Mark Blaxill at a meeting set up by a political person called Maloney in Washington.

It reminded me quite a lot of the meeting David tried to have with MP’s and Lords over here in June. Then, nobody showed except my MP who I asked to attend to protest on my behalf. What would happen this time?

Well, according to David himself 135 people showed up including 2 US Reps in person (these are the people David wanted to speak to. If I’m right, the event organiser, Carolyn Maloney is a Congresswoman in the House of Reps so, if thats true, there was really 1 US rep other than her) 58 Reps sent staffers (staffers are bottom feeders sent by people who can’t – or don’t really want to – make it. Like glorified gophers.) and 30 Senators sent staffers. So that’s 90 politicals (of whom – lets be honest – only 2, possibly 1, actually count).

Other people there included AAP, CDC, FDA etc.

Anyway, AoA posted two images of the event:

Now, is anyone else looking at those pictures and thinking ‘135 people? Really?‘. It reminds me a little of the odd maths that resulted in an attendance of 8 – 10,000 at the green our vaccines rally.

This event is trumpeted at AoA as ‘standing room only’. Really? Because I can count quite a lot of available sitting room in those photos. Maybe a thought for next time would be to not exaggerate your claims and then post photographs that contradict them.

There was also a very interesting comment left on AoA by a guy called David Atkinson who said:

I happen to be in town on business and I just came back from this meeting. It was a pretty small room but yes it was packed. I am guessing about 50-70 were there. From the looks of it, most were staffers and there were a few parents like myself. I know there were at least 2-3 senators and I am not sure how many if any representatives. David presented very well as usual and then Mark added his piece as well. After this, there were questions taken from the staffers. There were a few pointed questions. I felt that they were quite divisive and loaded questions. This was really dissapointing to me. Mark did a great job at defending and taking these questions on. I was quite impressed with his eloquence as I would have probably killed the snotty little staffer that was quesioning Davids slides. Overall it was a useful meeting. However, for me who doesnt participate in this type of thing very often, I dont feel it was hugely impactful. It didnt seem like this meeting will be any type of game changer for our community but I am a rookie at this. Hopefully I am wrong on that. Great job to David and Mark. I am more inspired now to try to be more active and help out……I would like to help more in future.

Looking at the photos, I would agree with Atkinson that there were about 50 – 70 people there. I would also agree that this not much of a game changer.

Anyway, I guess 1 or 2 US reps is better than the zero that turned up in London. To me though its just growing evidence to support my view that the autism/vax ideas have truly jumped the shark. Anti-vaccine related deaths in the UK, hundreds of anti-vaccine related hospitalisations in the US and ever growing studies showing no association get the message across.

IACC: what caused this and can it be prevented

24 Sep

I bet you thought the nagging was over after this post. Nope, that was for the “services subcommittee”.

There is another deadline still out there–the end of September. That’s when comments are due for the big one–the Strategic Plan.

We’ve discussed two sections so far: “When should I be concerned” and “How can I understand what’s happening“. But, there are another four sections! Plus, there’s the question of vaccines.

The entire draft Strategic Plan is public.

The third section is “What causes this to happen”. This has the “aspirational goal” of:

ASPIRATIONAL GOAL: CAUSES OF ASD WILL BE DISCOVERED THAT INFORM PROGNOSIS AND TREATMENTS AND LEAD TO PREVENTION/PREEMPTION OF THE CHALLENGES AND DISABILITIES OF ASD

As before, instead of copying the entire section, I am taking just the “Research Opportunities” and the “goals” for discussion. First the research opportunities:

Research Opportunities
• Genetic sequence variations in ASD and the symptom profiles associated with these variations.
• Family studies of the broader autism phenotype that can inform and define the heritability of ASD.
• Standardized methods for collecting and storing biospecimen resources from well-characterized individuals with ASD as well as a comparison group for use in biologic, environmental and genetic studies of ASD.
• Case-control studies of unique subpopulations of people living with ASD that identify novel risk factors.
• Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.
• Environmental and biological risk factors during pre- and early post-natal development in “at risk” samples.
• Cross-disciplinary collaborative efforts to identify and analyze biological mechanisms that underlie the interplay of genetic and environmental factors relevant to the risk and development of ASD.
• Convene ASD researchers on a regular basis to develop strategies and approaches for understanding gene – environment interactions.
• Exposure assessment — efficient and accurate measures of key exposures for us in population and clinic based studies and standards for sample collection, storage, and analysis of biological materials.

OK, inside there is one of the land-mines of the Strategic Plan: vaccines. Let’s pull that out:

Monitor the scientific literature regarding possible associations of vaccines and other environmental factors (e.g., ultrasound, pesticides, pollutants) with ASD to identify emerging opportunities for research and indicated studies.

Some people would like to see even more discussion of vaccines. Frankly, I would like to see this section taken out. Of course they will monitor the literature for environmental factors–as well as monitor the literature for any big new discoveries in autism. The Strategic Plan doesn’t limit the NIH or any other governmental agency from exploring a subject that isn’t written in the Plan.

If you agree, send the IACC an email. Just click the link and send them a short note that vaccines don’t need to be mentioned explicitly in the Plan.

Short-Term Objectives
• Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2010.
• Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011.
• Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011.

Long-Term Objectives
• Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2012.
• Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014.
• Identify genetic risk factors in at least 50% of children with ASD by 2014.
• Support ancillary studies within one or more large-scale, population-based epidemiological studies, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015.

The first short term goal refers to the IOM report “Autism and the Environment: Challenges and Opportunities for Research”. This is a transcript of a meeting held to discuss environmental contributions to autism. This report is sometimes misrepresented. If you head the Omnibus proceedings, you know what I mean. The PSC lawyers acted as though this was on a par with the 2004 IOM report on vaccines and autism, discussing the conclusions of the report. (Hint–it is a transcript of personal opinions of the participants).

That aside, this is a big section of the Plan. There is a lot of work to be done in those goals. There aren’t even good “subtypes” identified (although some have been proposed). I don’t know how time consuming and expensive the genetic testing is, but anything involving 20,000 subjects is big. Pushing the genetic risk factors up to 50% is going to be challenging, considering that most genetic links found are under 2% of the total. The Plan states that about 10-20% of the genetic links are already known–that leaves 30-40% to be found. Likely that’s about 30-40 (or more) genetic risk factors.

I’d like to have more information on this statement:

Within the highest priority categories of exposures for ASD, validate and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011

Does this mean that some method of testing in petri-dish type experiments will be validated? So, we don’t have any more thimerosal dumped on cancerous cells and a link claimed to autism declared? I’m all for that. I wonder if it’s possible, just like I wonder if an animal model is possible.

That said, take a look. Discuss below and please, email them.

Jenny McCarthy's Mother Warriors

24 Sep

Jenny McCarthy’s bullshit-fest starts up again today. Look forward to her and Jim Carrey on various US talk shows.

Her new book is called ‘Mother Warriors: A Nation of Parents Healing Autism Against All Odds’ which is equally amusing (mother warriors?) and, well, bollocks. A nation of parents healing autism? Really? Where? I’ve been having this conversation with the autism/antivax loons for over five years now: show me the kids who were once autistic who are now cured by biomed? And I don’t mean your sisters best friends cousins kid, I mean case studies. I keep hearing that there are _thousands_ of these kids – surely some doctor treating them somewhere thought – hey, a case study would be a good idea.

And this definitely includes Chief Mother Warrior McCarthy herself and her somewhat loose definition of what ‘healing autism’ is. I posted awhile ago about how Chief Mother Warrior McCarthy had described her son as recovered (as oppose to recover_ing_) in April this year and then go on to describe how she was planning to chelate Evan in June 2008. Why? If he’s recovered, why is the poor lad being subjected to chelation?

Meh, cup and ball trick much?

So, I thought – given that Chief Mother Warrior McCarthy is doing it – that we might take a closer look at chelation in the form of quotes from Mother Warrior’s on the CK2 (Chelating Kids 2) Yahoo group. I’ll say up front, it makes pretty grim reading but I think people need to know what exactly being a Mother Warrior entails. These are all from different people.

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins. As I’m lying on him, both of us sweating with 2 nurses trying to do the IV, I’m thinking is is worth it?

I used to give my son a valium before the IV’s when we first started. We had to give him 15 mgs when he was about 90 pounds.

We give my son 300 mg of L-Theanine 90 minutes prior to the IV…

We are considering IV chelation with our almost 7yr old. We started with nutritional IV’s just to see how he would do. THe first one was rough the second was a piece of cake. My Mom instinct tell me they made him feel better…

We do IV chelation on experienced regression during the first 3 or 4 months. I would consider them “healing” regressions, though because he didn’t stay in a regressed state and always came out of the regression….

Now these are bad. Blown veins, chelation over periods of years, kids being medicated to calm them down from their obvious terror. But these next are worse.

Any thoughts or experiences with chelation on children under 16 months? The child in question was tested moderately mercury toxic….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories once his OAT test comes back demonstrating that he’s medically stable enough to chelate…

We actually began chelating our son at age 2

And the absolute crowning horror. There aren’t words for this last one so I’m just going to quote it. Remember – this is an example of McCarthy’s Mother Warriors in action describing a process she was going to try on her own son.

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.

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