E-Newsletter June 2009 #1

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

In this edition:

TACA News

1.  Find a TACA Meeting

2.  5th Annual Family & Friends campaign and awareness drive

3.  Los Angeles Ride for Autism • Second Annual Motorcycle Ride

4.  New Parent Seminars

General News

5.  Daily Autism Updates for Families

6.  Meet Ella: Sister Warrior

7.  iPhone can help autistic students communicate

8.  Investigation of Shifts in Autism Reporting in the California Department of Developmental Services

9.  David Kirby's Autism One Presentation: Metals, Myelin & Mitochondria Pathways to Autism?

10. Antidepressant Ineffective for Repetitive Behaviors in Autism

11. Newsweek: Crazy Talk

12. FDA to Receive More Money from Drug Manufacturers, But Denies “Undue Influence”

Vaccine News

13. CDC Vaccine Advisor Pockets $29 Million Promoting Vaccines

14. There Is No “Anti-Vaccine” Movement

15. Major new study to seek answers on autism

16. Supreme Court interested in vaccine lawsuit shield

17. Seven Studies to Watch

[go to home page]    

1 Find a TACA Meeting
Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

 
2 5th Annual Family & Friends campaign and awareness drive
This year, more than ever, we need your help. Over the past year the numbers of families TACA serves has almost doubled to 14,000. We have launched 25 chapters around the country to provide in-community support to those on the autism journey. With your help, we can continue to provide 95% of all programs and services at no charge to families with autism.

With just a few steps you can make a world of difference for children with autism and their families. 

  • Request a free fundraising kit (call 949-640-4401 or contact Roxanne Hall).

  • Launch a personal fundraising web page at www.firstgiving.com/tacanow. Send it out to all your contacts.

  • Use the campaign tools that come in your kit to help raise funds and awareness.

  • See your fundraising totals rise.

  • Enjoy our gratitude (and incentives)! Check out this year’s great incentives.

  • Know that you have made an impact on families living with autism.

View Real Help Now Family & Friends Campaign Presentation

Read Letter from TACA Executive Director, Lisa Ackerman

 
3 Los Angeles Ride for Autism • Second Annual Motorcycle Ride

Saturday, August 8, 2009

The Los Angeles RIDE FOR AUTISM is a charitable organization, comprised of a 100% volunteer group, will be hosting their second annual motorcycle ride on Saturday, August 8, 2009. This exhilarating ride brings together motorcycle enthusiasts from all walks of life to cruise the streets of Los Angeles and Orange Counties to raise awareness and resources for families affected by autism.

Autism is a complex neurological disorder that inhibits a person’s ability to communicate and develop social relationships. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown. The prevalence of autism has increased tenfold in the past decade, with autism spectrum disorders affecting one in every 150 children in the United States.  Most of these children require a multitude of resources that may include intensive care, extensive therapies, and special education.  More often than not, there simply aren’t enough resources to go around.

RIDE FOR AUTISM is making a difference.  In 2008, the first annual motorcycle fun ride raised over $50,000. This year, the organization plans to attract over 900 riders while raising over $100,000. The event opens at 8 a.m. on August 8 at Laidlaw’s Harley-Davidson in Baldwin Park and finishes around 4PM at Original Mike’s in Santa Ana. The 2009 RIDE FOR AUTISM beneficiaries include Autism Speaks, Autism Society of America – Long Beach / San Gabriel Valley and Los Angeles Chapters, and Talk About Curing Autism (TACA).

For additional information, including sponsorship opportunities, registration information and volunteering, visit www.rideforautism.org.

 
4 New Parent Seminars
Orange County, CA
Saturday, June 27, 2009, 9 a.m.-4:30 p.m.

Naperville, IL
Saturday, July 18, 2009, 8:30 a.m.-5 p.m.

After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day New Parent Orientation is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Who should Attend?
This one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 18 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Register Online

 
5 Daily Autism Updates for Families
All news related to autism:  AgeofAutism.com

For daily updates to all autism legislative issues: ChangeforAutism.org

 
6 Meet Ella: Sister Warrior
Age of Autism

This little cutie is named Ella. She raised $310 this Spring for TACA on behalf of her brother with autism. I recently wrote about the book, Boy Alone, a memoir about having a brother with autism. I hope sweet Ella faces easier choices when she grows up.

 
7 iPhone can help autistic students communicate
By Greg Toppo
USA TODAY

Leslie Clark and her husband have been trying to communicate with their autistic 7-year-old son, JW, for years, but until last month, the closest they got was rudimentary sign language.

He's "a little bit of a mini-genius," Clark says, but like many autistic children, JW doesn't speak at all.

Desperate to communicate with him, she considered buying a specialized device like the ones at his elementary school in Lincoln, Neb. But the text-to-speech machines are huge, heavy and expensive; a few go for $8,000 to $10,000.

Then a teacher told her about a new application that a researcher had developed for, of all things, the iPhone and iPod Touch. Clark drove to the local Best Buy and picked up a Touch, then downloaded the "app" from iTunes.

Total cost: about $500.

A month later, JW goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, "I want Grandma's cookies" or "I'm angry here's why." He uses his "talker" to communicate with everyone including his service dog, Roscoe, who listens to voice commands through the tiny speakers.

It's a largely untold story of Apple's popular audio devices.

It is not known how many specialized apps are out there, but Apple touts a handful on iTunes, among them ones that help users do American Sign Language and others like Proloquo2Go, which helps JW speak.

The app also aids children and adults with Down syndrome, cerebral palsy and Lou Gehrig's Disease, or ALS even stroke patients who have lost the ability to speak, says its co-developer, Penn State doctoral student Samuel Sennott.

Using the iPhone and Touch allows developers to democratize a system that has relied on devices that were too expensive or difficult to customize, Sennott says. "I love people being able to get it at Best Buy," he says. "That's just a dream."

He also says that for an autistic child, the ability to whip out an iPhone and talk to friends brings "this very hard-to-quantify cool factor."

Sennott won't give out sales figures for the $149.99 app but says they're "extremely brisk."

Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.

Clark says the app has changed her son's life.

"He's actually communicating," she says. "It's nice to see what's going on in his head."

Among the revelations of the past month: She now knows JW's favorite restaurant. "I get to spend at least every other day at the Chinese buffet."

 
 
8 Investigation of Shifts in Autism Reporting in the California Department of Developmental Services
Journal of Autism and Developmental Disordorders
May 29, 2009
"Investigation of Shifts in Autism Reporting in the California Department of Developmental Services"

Grether JK, Rosen NJ, Smith KS, Croen LA.
California Department of Public Health, 850 Marina Bay Parkway, P-3, Richmond, CA, 94804, USA, Judith.grether@ cdph.ca.gov.

We investigated if shifts in the coding of qualifying conditions in the California Department of Developmental Services (DDS) have contributed to the increase in California children with autism observed in recent years. Qualifying condition codes for mental retardation (MR) and autism in DDS electronic files were compared to hard-copy records for samples of children born 1987, 1990, 1994, and 1997. Contrary to expectations, we did not find evidence of a coding shift from "MR only" to "both MR and autism" or an increase in the proportion of children with coded autism who lacked supportive diagnostic documentation in records (possible "misclassifications "). These results indicate that changes in DDS coding practices are unlikely to explain the increase in DDS clients with autism.

 
9 David Kirby's Autism One Presentation: Metals, Myelin & Mitochondria Pathways to Autism?
Age of Autism

Managing Editor's Note: Click HERE to see the entire presentation in a printable Word doc. Due to the number of slides, we've broken the presentation into three separate posts to speed up loading the post onto your computer. This is part 1 of 4.

By David Kirby

2009 Autism One Conference, Chicago

I first want to say that this conference was described by The New York Times as “an anti-vaccine conference.” And, you know, when I read that I actually laughed out loud. And I thought, “What would you even do at an anti-vaccine conference, anyway?” And I know there are some people in this audience who are anti-vaccine, and they have that right. I just don’t happen to be one of those people.

The reason I get upset at being called “anti-vaccine” is that, A), it’s untrue, and B), I do think vaccines are important. And I think we can vaccinate more safely than we do in this country. But the label is used as a weapon. It is used as a tool against people like me. And even though it’s a lie, it is so much easier to dismiss somebody if you think that they’re anti-vaccine. “He’s a kook. He’s a nut. He doesn’t know what he’s talking about.”

And now we’re into the rhetoric that has gotten so heated that people like me are called “pro-disease.” It’s like Karl Rove is writing the playbook for these people. Because it’s gotten that political, it’s gotten that nasty. So, I’m going to fight back against that label.

This is not an “anti-vaccine conference.” There’s a discussion tonight about athletics in autism, and one on relationships in autism.

And we are here to talk about a lot more than vaccines. And that’s sort of the theme of my speech, too. Because for quite a while now, I have believed there are many, many different ways to get to what we call “autism.” And I think we really need to step back from vaccines, we need to step back from Thimerosal, we need to step back from MMR and other specific vaccine components. We need to work backwards and look at the world in its entirety. We need to look at food, air, water, and medicine. And by medicine, yes, that would include vaccines.

Now, the Obama administration just announced they’re going to have a national meeting on toxins; and how toxins affect people. And that’s exactly where I think this conversation should go. I’m ready for a little middle ground. I’m really tired of the screaming back and forth, you know. We need to find out what’s making these kids sick. And I think there’s more consensus now that something in the environment or some things in the environment are contributing to that.

So let’s look at those things in a more general sense. And that’s where - I think - it gets really, really interesting, and where we may find some common ground in science - that there are things in nature that are triggers for autism. I truly believe there are things in the environment that can trigger autism that have nothing to do with vaccines.

I am just a journalist, I’m a layperson, so I view things in a slightly different way than scientists. And I have the luxury of doing that because I get to, you know, play around with theories a little bit, ask different kinds of questions and try to see connections between different things.

And when I look at the situation, I think we’ve moved way past thimerosal as the one and only cause of autism. And I’ve just picked three possible routes – Metals, Myelin & Mitochondria - that we’ll be talking about tonight. Now, you could make up a very, very long list of potential pathways to autism. But what’s so interesting about these three pathways -- and remember, this is all just theory, this is just me, kind of musing out loud -- is that they’re found in the natural environmental, or the man-made environment, and they’re also found in vaccines.

The other thing that’s interesting about these three things is they’re interactive. So you might have metals as a contributing factor to autism, but you can’t separate that entirely from the fact that metals can also destroy myelin. Metals can destroy mitochondria. They’re all interrelated. And I think that we should look at ALL metals. And I think one reason that we haven’t looked at all metals is because two of those metals happen to be aluminum and mercury, and those metals also happen to appear in childhood vaccines. If there never was mercury in vaccines, I can pretty much state that we would be much further along at this point in researching heavy metals in autism.

The same with live viruses. Measles virus can affect myelin as a matter of fact. Well, there is live measles virus in the MMR vaccine. Maybe that’s one reason why there’s been some reluctance to look more carefully into how viruses might be triggers of autism.

And the same is true of mitochondrial dysfunction and overstimulation of the immune system – all sorts of things can happen in that situation. And it does happen in nature - a lot. But talk with Jon and Teri Poling, and you’ll find out it can also happen when you give a child nine vaccines in one day.

So maybe what it might take to try to find some middle ground and move research forward is to just put - even for a day - vaccines aside. And let’s just look at metals. And let’s just look at myelin damage – what can damage myelin. And let’s look at mitochondria - and many, many other things.

But I am here to discuss these three things. And, I am not here to give you any answers. I don’t have any answers. My job is to ask the questions. I also draw no conclusions. But my message to you is this: If I were running the show, and if I were dishing out the research dollars, these are some of the areas that I would be pursuing, posthaste. And if I were a scientist, these are some of the things that I would be wanting to study with federal money, including some money coming into the NIH right now. Read more.

 
10 Antidepressant Ineffective for Repetitive Behaviors in Autism
MedPageToday.com

By Kristina Fiore, Staff Writer, MedPage Today, Published: June 01, 2009
Reviewed by Zalman S. Agus, MD; Emeritus Professor, University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

LITTLE FALLS, N.J., June 1 -- Despite common off-label use, the antidepressant citalopram (Celexa) has no effect on repetitive behavior in young patients with autism spectrum disorders, researchers said.

There was no significant difference in positive response rates between children taking citalopram or those taking placebo (32.9% versus 34.2%), Bryan H. King, M.D., of the University of Washington, and colleagues reported in the June issue of Archives of Psychiatry.

"There is a robust literature that supports the use of selective serotonin reuptake inhibitors for obsessive-compulsive disorder, so we assumed that we'd see a very positive response," Dr. King said.

Instead, he said, the results further illustrate that there is "a fairly significant placebo response rate in kids with autism who are treated with medication." Action Points
Explain that there was no significant difference in positive response rates between children taking citalopram and those taking placebo for repetitive behaviors in autism spectrum disorders.

Point out that in addition to the lack of therapeutic effect, citalopram exhibited significant adverse effects.

Note that the results further illustrate a significant placebo effect in children with autism who are treated with medication.

"It might be very sobering to recognize that treatments that we thought were very helpful like citalopram for repetitive behaviors in fact may not be," Dr. King said, "and at the very least we need to revisit what the risks and benefits of some of these treatments are."

No medications are currently FDA approved for the "core symptoms" of autism spectrum disorders, but selective serotonin reuptake inhibitors (SSRIs) are widely prescribed for these patients, the researchers noted.

Antiobsessional agents such as SSRIs have been of interest because of similarities between repetitive behavior in patients with autism and those with obsessive-compulsive disorders, as well as other findings regarding serotonin abnormalities in autism.

In fact, at 59%, SSRIs account for the greatest global market share of autism therapeutics -- estimated at $2.2 to $3.5 billion overall.

So to determine the safety and efficacy of citalopram for repetitive behavior in children with autism spectrum disorders, the researchers conducted a randomized controlled trial of 149 patients ages 5 to 17 at six U.S. centers.

Patients received either citalopram or placebo for 12 weeks. Dosing began at 2.5 mg/dL for all children and increased over the study period depending on weight.

Participants had autism spectrum disorders, Asperger disorder, or pervasive developmental disorder not otherwise specified, and all illnesses were at least moderate.

The researchers found no significant difference in the rate of positive response on the Clinical Global Impressions Improvement subscale between citalopram and placebo.

Nor was there any difference in score reduction on the Children's Yale-Brown Obsessive-Compulsive scales.

Citalopram use was significantly more likely to be associated with adverse events, particularly increased energy level, impulsiveness, decreased concentration, hyperactivity, stereotype, diarrhea, insomnia, and dry skin or pruritus.

The researchers said it was notable that the placebo response was very high, although their placebo response rate of 34.2% is "consistent with some other studies involving children with autism and reinforces the value of placebo control in pediatric psychopharmacologic research."

"Ours is not the first to demonstrate this placebo effect," Dr. King said. "It may help to explain how it is that there are so many treatments being offered up as potentially useful in kids with autism."

Evidence is lacking when it comes to treatment of children with autism with other therapies, he said. Using SSRIs to treat anxiety and mood disturbances, for example, has not been formally studied.

"Those studies need to be done and I think that the fact that we did not see a signal for citalopram in this case really increases the urgency with which we should approach doing those studies," Dr. King said.

In an accompanying editorial, Fred R. Volkmar, M.D., of Yale, said that "unfortunately, pharmacological intervention studies have often been hampered by small sample sizes and ambiguous results."

He said the study done by Dr. King and colleagues is "an important step that addresses this major gap in the literature."

"The medication does not appear to be useful for repetitive behaviors in children with autism and related conditions," Dr. Volkmar said. "We need more studies of this kind to advance research and guide clinical practice."

The study was supported by the National Institutes of Health.
Dr. King reported relationships with BioMarin Pharmaceuticals, Neuropharm Ltd, Forest Laboratories, Nastech Pharmaceutical, and Seaside Therapeutics.

Dr. Volkmar reported book royalty income and grant support from the National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Childe Health and Human Development, and Autism Speaks. He also is editor of the Journal of Autism and Developmental Disorders and receives compensation in that role.

Primary source: Archives of General Psychiatry
Source reference: King BH, et al "Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior" Arch Gen Psychiatry 2009; 66(6): 583-590.

Additional source: Archives of General Psychiatry
Source reference: Volkmar FR "Citalopram treatment in children with autism spectrum disorders and high levels of repetitive behavior" Arch Gen Psychiatry 2009; 66(6): 581-82.

 
11 Newsweek: Crazy Talk
Katy Kay is the news anchor for BBC TV World Report and Claire Shipman is a correspondent for ABC News

This is an excerpt from "Did anyone else think the Newsweek photo of Oprah was Misogynistic? And just plain dumb?" at TrueSlant. com

Last year we at ABC news ran a series on autism, and new methods being used to diagnose it which are-to say the least-controversial. The medical community and established autism community tried hard to get us to kill the report-which suggested-gasp-that it might be a good idea to actually look at the brains of kids who are thought to be autistic. Do MRIs and EEGs. Hardly a stretch, and there is a growing body of evidence that autism is such a huge catch all phrase that kids need more diagnosis. A number of prominent neurologists now believe it helps to look at the brain, especially to rule out seizure disorder, which can often produce autistic symptoms, and which is treatable. (That's what McCarthy found, among other things, by the way, when she decided to trust her instincts instead of conventional wisdom.)

But because this sort of diagnosis is expensive, and because it goes against the more established, behavioral method of diagnosing kids, we had to fight to get this on the air. Especially because there were no formal and conclusive studies. Not because nobody wants to do them-all of the top doctors say they need to be done. But nobody has put the money forward to get them done. So every time I asked-why should we wait? Why should I have access to this information but nobody else, until 10 years from now a study is finally complete, nobody could give me a good answer. In any event, I experienced the wrath of the establishment firsthand.

The fact is we just don't know about this stuff yet. Nobody wants to admit that. The medical community has a hard time admitting what we don't know, but there is plenty we don't know about autism, and why the staggering rise in cases. Surely that is obvious to everyone. That's why a top doctor at Harvard who works on these issues told me he thinks there has to be a link between vaccines and SOME of the cases of autism. Why? They don't know. Is it only in children with a certain predisposition to autism? They just don't know. But to say, as Newsweek does, "the baffling rise in the number of autism cases has loosely coincided with an increase in the number of childhood immunizations. Yet researches have not found a link between the vaccines and autism," and expect that to seem conclusive, is nonsense. Dr. Bernadine Healy, the former head of the NIH, at least sounded reasonable when she suggested the case is not closed, as far as the link between vaccines and autism. There are plenty of educated, smart people and doctors who know there's no evidence, yet, but who would never make categorical statements. Or suggest that Oprah and Jenny McCarthy are quacks. Check out www.nvic.org.

Like it or not, in today's world, television and the Internet is providing a constant challenge to the established medical community. No doubt that's frustrating for doctors, researchers and drug companies, at times. Maybe constantly. But in the end, the public pressure and scrutiny and exploration can only be good for all of us. That's the only way I figured out my then 3 month old daughter had reflux, after 2 months of being told it was "just colic." I trolled around on-line and discovered new research being done in St. Louis, and called doctors there and explored what they were doing. I would up with the right medicine, and she got relief. But there were only a few doctors in my town up on what was going on, and willing to collaborate. And the public at large can't do what I did as easily. (Actually, many can. It was just me being pushy-had nothing to do with my job!) But more information is always better. Especially when there's clearly a there there. Should we all be on Suzanne Somers regimen? Clearly not. Does it all make sense? No. But some of it does. And just because it does not have the seal of approval from the establishment-is no reason to trash it. Quite the opposite, in many cases. And Newsweek, if you are going to go all Paternalistic and Controlling and Establishment, please at least get your facts straight.

 
12 FDA to Receive More Money from Drug Manufacturers, But Denies “Undue Influence”
The FDA is raising its industry user fees again. But many in Congress worry that the $828 million they are asking from manufacturers of medical and food products, including hundreds of millions drug manufacturers pay annually to help speed the review of new medicines, might compromise the agency's independence. Even the current FDA head says, “I think these concerns reflect a broader lack of trust in the FDA.”

Nineteen Members of Congress Ask FDA for Official Warning About Mercury in Dental Filling Amalgams
A bipartisan letter authored by Rep. Diane Watson (D-CA) and Rep. Dan Burton (R-IN), and co-signed by congresswomen and men from twelve states, has been sent to the FDA urging them to require clear warnings about mercury toxicity to every dental patient, and to establish specific protections for children and young women. Mercury is the third most toxic element, and vapors from mercury can traverse the placenta of pregnant women and threaten the development of the fetus.

Vermont Acts to Make Drug Makers’ Gifts Public
A new Vermont law will make drug and device manufacturers publicly disclose all gifts (in direct payments, speaking and consulting fees, grants, food, lodging and transportation, and books) they make to healthcare providers because of potential conflicts of interest. The law is the most stringent state effort to regulate the marketing of medical products to doctors. It would also ban nearly all industry gifts to doctors, nurses, medical staff, pharmacists, health plan administrators and healthcare facilities.

American Association for Health Freedom, May 26, 2009

 
13 CDC Vaccine Advisor Pockets $29 Million Promoting Vaccines
Natural News.com

Dr. Paul Offit of the Children's Hospital of Philadelphia (CHOP) received at least $29 million from his share of royalties for Merck's Rotateq vaccine after using his position with the Centers for Disease Control and Prevention to ensure that childhood vaccination with the vaccine became compulsory.

According to a report on the Web site "Age of Autism," a review of CHOP's royalties schedules reveals that Offit likely received between $29 million and $55 million for his work developing the Rotateq vaccine for rotavirus, which causes diarrhea in infants. Because the vaccine is jointly owned by CHOP and by the Wistar Institute but Offit is the only inventor listed on the patent from CHOP, he received 100 percent of inventor's rights payments from CHOP.

 
14 There Is No “Anti-Vaccine” Movement
ChildHealthSafety.wordpress.com

Posted on May 29, 2009 by childhealthsafety

A feature article published this month in the Public Library of Science A Broken Trust: Lessons from the Vaccine–Autism Wars endeavours to dismiss justified concerns about vaccine safety as by just illogical “anti-vaccine” campaigners with irrational views not based on evidence. It is another sad testimony to the unscientific belief that the majority “consensus” is right when in science the reality is that often it is one person or a very few demonstrating the majority is wrong. The author is Liza Gross, Senior Science Writer/Editor, PLoS Biology, Public Library of Science, San Francisco, California.
One of the feature article’s themes “Evidence-Resistant Theories” has some irony in dismissing well-founded concerns and more so in the light of a much-needed:-

REALITY CHECK

  • The issue is Child Health Safety.
  • There is no anti-vaccine movement.
  • There is evidence of lack of safety and oversight and of children being at risk from vaccines where the risks of the vaccines now seem overwhelmingly to outweigh claimed benefits.
  • The hazards are not being investigated or reported properly and are downplayed.
  • It is much more than autism.
  • We need well-designed properly powered large-scale studies comparing vaccinated to unvaccinated for all health outcomes by truly independent objective unbiased scientists – and including proper clinical data.
  • Too many government officials and medical professionals with links to the vaccine makers and the drug industry and their own conflicts of interest refuse to carry out the studies – the inference is they know the studies will not favour their view or else there would be no reason not to carry them out – the studies would settle the matter
  • Their only answer is to create the myth by label libel of an “anti-vaccine movement” and silence all critics.
  • The lobbying in the media and at all levels in society has created a quasi-religious belief in the importance of vaccines such that any criticism is silenced in any way possible.
  • The evidence base in published journals is no longer reliable and riven with too many papers published by those with financial and related interests.
  • The drive to vaccinate the world is not driven by any true health need: [Vaccines Did Not Save Us – 2 Centuries of Official Statistics]
  • It is the drug industry changing its business model from the one the financial markets have long known was failing – of blockbuster patented drugs – to others including one like that which made Bill Gates billions – pretty much everyone must have Microsoft’s Windows software on their computer and everyone must be vax’ed
  • Money v Child Health Safety.

End of story (sadly)

CONCLUSIONS

The vaccinated to unvaccinated comparison studies must be done – there is no reason not to and every reason to do them.

The problem can only be resolved politically but the big players in the drug industry have applied their financial resources to develop and entrench their influence at all levels in the medical professions, in universities and Government over many years.

Only by educating parents, professionals and the media on a large scale can the political machine be directed to address the issues and the problem.

 
15 Major new study to seek answers on autism
Philadelphia is one of four sites nationwide that will follow mothers and children through key stages of development.

By Don Sapatkin
Inquirer Staff Writer

In a bid to unravel the confounding mysteries of autism, researchers yesterday launched a comprehensive study to track families with an autistic child through another pregnancy, birth, and the following three years.

Hundreds of environmental factors - from diet to infection, pesticides and medications - will be examined for possible interplay with genetic makeup. Perhaps 100 children with autistic spectrum disorder will be born, researchers said, to the 1,200 women they hope to enroll at four study sites nationwide, including Philadelphia.

"These families know there is susceptibility, because they already have an affected child," said principal investigator Craig J. Newschaffer, a professor at the Drexel University School of Public Health, during a teleconference with reporters yesterday.

About one out of every 150 children is diagnosed with autism spectrum disorder, a group of neurological disorders that cause delays in language development and impairment in the ability to relate to others.

For siblings of children with autism, the risk may be 10 times greater - one reason that genetics is believed to play a large role.

While diagnoses have increased dramatically in recent decades, it is unclear how much of that is due to increased public awareness and better testing. The specific causes of autism are unknown.

Some parents believe that childhood vaccinations, which also have increased in recent years, could be a trigger. Medical research has found no solid basis for this idea, but vaccines are among the many environmental factors that will be examined in the new study.

The effort is unusual because "we are collecting the information in real time," said Lisa A. Croen, an epidemiologist with the Kaiser Permanente Division of Research in Northern California, which is part of the study.

So-called prospective research is considered more accurate than medical studies that enroll people after a diagnosis and ask them to look back.

Daureena Williams, 26, has two sons - a 2-year-old with autism and a 1-year-old without - and has told investigators that she wants to be part of the study if she gets pregnant again.

"I just want to know where autism comes from," she said last night from her West Philadelphia home.

Anthony Shawn Williams Jr. was born in August 2006. While something seemed wrong within weeks, at 10 months "he started talking, saying 'Mommy' and 'Daddy,' " she said. Then he had the first of two seizures, and he was later diagnosed with autism.

Although he has learned to recite the letters of his name, Williams said, he waves his fingers and arms in a pattern associated with autism, and his communication is no longer spontaneous.

"He would never say, 'Mama, juice!' " she said.

The Early Autism Risk Longitudinal Investigation (EARLI) will include "multiple encounters with mom" during pregnancy, Newschaffer said, to get blood and urine samples (for DNA and other analyses) and updates on detailed diaries the women will be asked to keep about their health and environmental exposures.

Other data will be collected from the father and from siblings who have autism spectrum disorder. Stool and other samples will be taken from the baby at delivery, followed by examinations at 6, 12, 18, 24, and 36 months.

Researchers will follow a broad range of developmental and cognitive measures to pinpoint the timing of any symptoms that might hint at developmental delays, said Rebecca Landa, director of the Kennedy Krieger Institute's Center for Autism and Related Disorders in Baltimore, which is participating in the study there along with Johns Hopkins University.

Newschaffer, an autism expert who came to Drexel from Hopkins three years ago, said researches would "combine environmental data with the genetic data, because very likely there are genetic susceptibility factors."

Besides Philadelphia and Baltimore, there are two study sites in Northern California, one of them at the University of California, Davis. The study is funded with $14 million from the National Institutes of Health and $2.5 million from Autism Speaks, an advocacy group.

The local portion of the study, which aims to enroll 300 women who are no more than 20 weeks pregnant and reside in Southeastern Pennsylvania, will be led by Drexel and by the Center for Autism Research, a collaboration between Children's Hospital of Philadelphia and the University of Pennsylvania.

Children's Hospital two months ago became the seventh center to participate in a huge national examination of how genes and the environment interact to affect children's health. The National Children's Study, which locally is limited so far to residents of Montgomery County, is expected to follow as many as 100,000 children from before birth until age 21.

That study is not specifically aimed at autism, but early findings, once they become available, could help autism researchers identify other environmental targets.

Children who develop autism in the NCS study, for example, might not have siblings with the disorder. The EARLI researchers are looking only at families that already have a diagnosed child because, among other things, finding more autism will also offer more opportunity to tease out environmental triggers.

"By studying families that have this enriched risk, there are some advantages to finding some environmental risk factors," said Newschaffer, and the findings "may be generalizable to the general population."

In addition to identifying how environmental exposures during pregnancy and early life might play a role in autism, and how they might interact with genetic factors, his study will also look for possible biological markers (measurable in blood or urine, for example) and behavioral changes that might predict development of autism spectrum disorder.

Contact staff writer Don Sapatkin at 215-854-2617 or dsapatkin@phillynews.com.

 
16 Supreme Court interested in vaccine lawsuit shield
BLOOMBERG NEWS SERVICE • JUNE 8, 2009

The U.S. Supreme Court expressed interest in an appeal by Madison-based Wyeth and units of GlaxoSmithKline Plc that seeks to give the pharmaceutical industry a broader shield from lawsuits over injuries allegedly caused by vaccines.

The justices sought the Obama administration’s views on a Georgia Supreme Court ruling that allowed a lawsuit by the family of an autistic boy injected with vaccines containing the mercury-based preservative thimerosal. The state court said a 1986 federal law that protects vaccine makers doesn’t preclude suits claiming that a manufacturer should have used a safer formulation.

Companies already face 350 lawsuits over vaccines and might face a surge of new complaints, Wyeth and GlaxoSmithKline argue in their bid for high court review. Almost 5,000 families with autistic children have filed claims for compensation with a panel that distributes money from a $2.5 billion government trust fund.

The Georgia court ruling “threatens public health by inviting a litigation deluge even bigger than the one that spurred Congress to urgent action in 1986,” the companies argue in their appeal, filed in Washington.

The justices asked U.S. Solicitor General Elena Kagan’s advice on whether they should hear the appeal.

The 1986 National Childhood Vaccine Injury Act was designed to funnel complaints into a no-fault system that offers limited but guaranteed payments to those infected by vaccines.

Marcelo and Carolyn Ferrari contend the law doesn’t preclude their suit against Wyeth and GlaxoSmithKline over the hepatitis B, Hib and DTaP vaccines received by their son Stefan in 1998.

Congress “did not categorically exempt liability for all vaccine manufacturers, no matter how poorly the vaccine had been designed,” the family argued in papers that urged the Supreme Court to reject the appeal without a hearing.

The panel that rules on compensation claims, known as the Vaccine Court, concluded in February that the combination of thimerosal-containing vaccines and the measles-mumps-rubella vaccine don’t cause autism. The panel is still considering whether the thimerosal vaccines alone cause autism.

The case is American Home Products v. Ferrari, 08-1120

 
17 Seven Studies to Watch
David Kirby on AgeofAutism.com

Yesterday, I wrote that US officials had approved or recommended seven new studies related to autism and vaccination. I have listed them all here on one page, for readers who might want to share it with medical personnel, family members, elected officials, members of the media and anyone else who tells them that the vaccine-autism debate is over and done with.
 
Anyone complaining about parents asking for more research should direct their ire at the following US Government agencies and affiliated groups, who concur that many gaps in vaccine-safety research remain:

US Department of Health and Human Services
US Department of Environmental Protection
US Centers for Disease Control and Prevention
National Institutes of Health
National Institute of Environmental Health Sciences
National Institute of Mental Health
Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institute of Neurological Disorders and Stroke
National Vaccine Advisory Committee

APPROVED STUDIES:
1) The National CADDRE Study -- This 5-year project of the CDC's Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network will "help identify what might put children at risk for autism," the CDC says. Among those risk factors: "specific mercury exposures, including any vaccine use by the mother during pregnancy and the child's vaccine exposures after birth." http://www.cdc.gov/ncbddd/autism/caddre.htm

2) The National Children's Study – This HHS-EPA joint effort will investigate "the effects of environmental influences on the health and development of more than 100,000 children across the United States," including autism. As part of their work researchers will track medical records, including vaccinations and their impact on neorodevelopment. http://www.nationalchildrensstudy.gov

3) The Early Autism Risk Longitudinal Investigation (EARLI) – This network of NIH agencies (NIEHS, NICHD, NIMH, NINDS) and affiliated sites will follow 1,200 pregnant women who already have a child with autism, to identify the “earliest possible environmental risk factors and their interplay with genetic susceptibility during the prenatal, neonatal and early postnatal periods.” Potential risk factors in the study include vaccines, thimerosal, and heavy metals. http://www.earlistudy.org
 
RECOMMENDED STUDIES

On June 2, 2009, the Federal Government’s National Vaccine Advisory Committee voted unanimously to recommend a sweeping list of vaccine safety studies, including four related to vaccines and autism. The CDC had previously proposed studying autism as a “clinical outcome” of vaccination, and NVAC concurred. The document can be viewed at: http://www.hhs.gov/nvpo/nvac/documents/NVACVaccineSafetyWGReport041409.pdf

4) Study the Feasibility of Comparing Vaccinated, Unvaccinated and Alternatively Vaccinated Children – NVAC recommended asking an expert panel, such at the Institute of Medicine, to weigh in on the strengths, weaknesses, ethical issues and costs of studying and comparing vaccinated, unvaccinated, and “alternatively vaccinated” groups of children for a number of disorders - including autism. Prospective clinical trials, where children would be randomized into vaccinated and placebo groups, would be unethical. But NVAC suggested one publicly submitted idea to conduct an “observational study” looking at, “natural variation in vaccination schedules, including some children where vaccination is declined through parental intent.”

5) Study Vaccine-Mitochondria-Autism Links - “Recent developments around mitochondrial dysfunction reinforce the importance of studies of vaccine adverse events in rigorously defined subsets of the ASD spectrum,” the NVAC wrote. The rate of mitochondrial dysfunction in autism has been estimated at somewhere between 7%-to-30% of all ASD children. “Mitochondrial dysfunction carries an established risk of brain damage subsequent to infectious disease,” the NVAC wrote. “Thus, a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to live virus vaccination.”

6) Study Vaccines and Regressive Autism - “In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism” the NVAC wrote. Estimates of ASD regression range from about 15 to 50% of all ASD cases, depending on the definition used. “Regressive autism does fit the recommendations of the IOM (immunization) committee for further research in rigorously defined subsets of ASD,” the NVAC said. Such studies might entail, “prospective vaccination response profiling in siblings of children with regressive ASD, a subpopulation who are at higher risk.”

7) Study Vaccine Injuries and the Risk of Autism - Another autism subpopulation that should be included in vaccine studies is what the NVAC called “the intersection of ASD cases with (clearly defined vaccine outcomes) such as fever, febrile seizure, or hypotonic-hypo-responsive episode (HHE).” Do these adverse effects correlate with ASD? “It would be worthwhile to assess,” the NVAC wrote.  “On a molecular level, it might be feasible to compare ASD cases with history of adverse events following immunization against cognitively normal controls with a similar history of adverse events, to assess whether there are significant differences in immune response profiles between groups.”

 
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