TACA E-News

2a THANK YOU FOR THE CAN WALK NOW EFFORTS!

A special note of THANKS TO ALL WHO PARTICIPATED in the November 12 Cure Autism Now (CAN) and TACA walk and family event! TEAM TACA and associated teams which registered at www.tacanow.org raised over $40,000!! In fact, the top fundraisers for the day were TACA members! The numbers will be revised upward as I know many of you are still receiving donations!
THIS IS AMAZING AND THANK YOU!! Here is a re-cap of the GREAT EVENT: On November 12, 2005, over 1200 participants came together at Hidden Valley in Irvine to walk in the second annual WALK NOW Orange County! It was truly a special day for the autism community and Cure Autism Now in Orange County, raising over $178,000 to fund Cure Autism Now’s mission to find the causes, prevention, treatments and a cure for autism. Thank you for helping Cure Autism Now continue to take significant steps into solving some of the challenges surrounding autism. Cure Autism Now (CAN) and Talk About Curing Autism (TACA) joined together to help Southern California families today with support and finding answers for our kids through research tomorrow. CAN understands that autism affects thousands of families in Southern California and wishes to support them today via the assistance of TACA. These events will help provide much needed funds to two great organizations providing support for the families affected by autism and for finding the cure through research. The funds raised from TEAM TACA (50% of the Team TACA and associated team participation) helps families with the “here and now” issues that affect families with autism. For more information about TACA and what we do – please see www.tacanow.org As you head into the final quarter of 2005, keep fundraising for WALK NOW Orange County to reach and surpass your fundraising goal! Donations are accepted until January 29, 2006 to help you reach your goal and collect each incentive along the way! Thank you for your hard work at raising over $178,000 for WALK NOW. Keep it up! Proceeds from WALK NOW support Cure Autism Now’s mission to find the causes, effective treatments, prevention and a cure for autism. The money you raise will enable us to fund biomedical research and innovative treatments.

Finally – please attend the TACA Costa Mesa December 10 “ School District Roundtable” meeting. We will be recognizing the top 20 walkers for their hard work for these important organizations!!

THANK YOU AGAIN! WE SO APPRECIATE YOUR SUPPORT!!

3 General News

3. Article A:

Autism survivors speak in L.B.

http://www.presstelegram.com/search/ci_3162380

By Kevin Butler, Staff writer
Long Beach Press Telegram

LONG BEACH — Hundreds of people attending an autism conference on Friday heard from parents who say that various treatments greatly reduced, or eliminated, their autistic children's symptoms. The three-day "Defeat Autism Now!" conference, organized by a San Diego think tank, The Autism Research Institute, featured parents saying their autistic children dramatically improved, thanks to dietary regimens, behavioral therapy and various medications.

Not all researchers believe that all the touted remedies have been scientifically demonstrated.

About 10 children whose parents say have recovered from the condition were interviewed on-stage in front of a large audience at The Westin Long Beach.

Stan Kurtz said he and his wife were devastated when they learned their young son Ethan had autism.

"It's life-changing," he said. "You lose your child. … and you have to rebuild. You have to see what's really going on."

Ethan, now 4 years old, didn't speak and often just stared out the window, Kurtz said.

Now his son's symptoms have largely gone away, thanks to a combination of drugs and dietary changes, said Kurtz, a Tarzana resident.

Kurtz on Friday asked his son to describe his favorite book, " Charlotte's Web."

Speaking of the main character, a pig called Wilbur, Ethan Kurtz smiled and said, "He was a baby, and then he grew up."

Cindy Goldenberg said until her son started a drug treatment when he was 3 years old, he wouldn't speak, make eye contact or play appropriately.

At around age 3, her son Garrett, now 16 years old, started receiving infusions of a protein used to treat immune deficiencies, she said. She said his symptoms were gone by the time he was 5 years old.

"I feel like I not only got a miracle, but I got a second chance," said Goldenberg, a Laguna Niguel resident.

Goldenberg, like some other parents at the conference, subscribes to the controversial theory that her child's condition was linked to a vaccine used to ward off measles, mumps and rubella.

The U.S. Centers for Disease Control and Prevention, however, has stated that "the weight of the evidence indicates that vaccines are not associated with autism."

3. Article B:

AUTISM SPEAKS AND THE NATIONAL ALLIANCE FOR AUTISM RESEARCH (NAAR) ANNOUNCE PLANS TO COMBINE OPERATIONS

The Groups Bring Together Two of the Leading Research and Advocacy Organizations in the Fight Against the Nation's Fastest Growing Serious Developmental Disorder (New York, New York—November 30, 2005)--Autism Speaks and the National Alliance for Autism Research (NAAR) have signed a memorandum of understanding to combine operations and bring together two of the leading organizations engaged in the battle against autism, it was announced today by Mark Roithmayr, president of Autism Speaks and Glenn Tringali, chief executive officer of NAAR. The two organizations expect to conclude all due diligence and final board approvals by January 31, 2006 and will collectively be known as Autism Speaks, Inc.

The consolidation of the two charities is based on their joint commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the nation's fastest growing developmental disorder; and to advocate for the needs of affected families. Autism spectrum disorders are diagnosed in one in 166 children, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

"Autism Speaks and NAAR share a vision that collaboration and cooperation among the best minds and impassioned advocates within the autism community will provide the most effective, cohesive realization of our common mission," said Roithmayr and Tringali in a joint statement. "Research, treatment and awareness are, and will continue to be, the priorities as we move forward."

Under the proposed terms of the transaction, the consolidated organization will maintain NAAR's nationwide walk program and international affiliates, as well as integrate the current NAAR scientific research processes and protocols. The professional staffs of both organizations are also expected to be integrated over the next year.

The boards of both Autism Speaks and NAAR, together with their founders, were unanimous in their decision to move forward with the consolidation. It is expected that under the new structure, the funds dedicated to autism biomedical research will increase significantly.

Autism Speaks, Inc.
Autism Speaks was co-founded by Suzanne and Bob Wright in February, 2005 in response to the diagnosis of their grandson. Bob Wright is Chairman and CEO of NBC Universal and is Vice Chair of General Electric. The organization's guiding principles have been to raise public awareness about autism and its devastating effects on individuals, families, and society, and to raise funds to support effective biomedical research in autism. Since its launch 9 months ago, Autism Speaks has raised over $30 million.

National Alliance for Autism Research (NAAR)
Founded in 1994, NAAR was the first national nonprofit organization in the country dedicated to funding and accelerating biomedical research exclusively for autism spectrum disorders. In 1997, NAAR put biomedical research on the map when it awarded five grants, each totaling approximately $30,000, to pioneering autism researchers. Three of those initial five researchers have attracted larger, multi-million dollar grants from the National Institutes of Health based on their autism pilot studies initially funded by NAAR, exactly as NAAR hoped would occur. To date, NAAR has committed almost $30 million to fund more than 270 autism research projects, fellowships and collaborative programs worldwide - more than any other non-governmental organization. NAAR's ongoing funding of pilot studies and collaborative research projects, as well as its advocacy for increased government funding, have played a key role in the increased funding for autism research at the National Institutes of Health and the Centers for Disease Control and Prevention.

3. Article C:

SoCal family wins record $22.6 million toxic mold settlement

LOS ANGELES - A family won a record $22.6 million settlement in a case in which they alleged that toxic mold in their home caused brain damage in their infant son.

"$22.6 million, certainly in a single-family home (case), would be the largest in the country," said Raymond P. Boucher, president of the Consumer Attorneys Association of Los Angeles.

The highest portion - $13 million - was paid by the Crenshaw Lumber Co. Inc. of Gardena, which was one of 17 defendants. The plaintiffs alleged that the company improperly stored framing studs, allowing mold to grow which then contaminated the home that was being built in Manhattan Beach.

Crenshaw Lumber settled on Oct. 19, the day after a Los Angeles Superior Court judge barred the wood supplier from using 10 of its 17 experts, including a toxicologist and microbiologist, said attorney Brian D. Witzer, who represented the Gorman family, who were the plaintiffs in the case.

Neither Crenshaw nor any of the other defendants admitted liability.

"We wish to emphasize that had the judge not excluded important expert witnesses from testifying ... we believe that the jury would have completely vindicated the company," Crenshaw said in a statement.

Barring the experts would have proved fatal to the defense, said Costa Mesa attorney Thomas S. Salinger, co-chair of Rutan & Tucker's construction law practice group.

"It's tantamount to not having a jury hear both sides of the story," he said.

The case is unusual not just for the settlement amount but also because contractors, not suppliers, are generally held responsible for construction defects, Salinger said.

Experts predicted the settlement will lead to more such cases.

The Gorman's son, Kellen, was born three months after they moved into their custom-built home in September 1999. They lived there for about two years.

Kellen, now 5, functions as a 1 1/2-year-old and needs 24-hour care, Witzer said. He blamed the boy's developmental problems on mold.

But Los Angeles attorney James D. Fraser, who defended a sheet metal company in the suit, said Kellen's doctors concluded he suffered from autism - a condition for which there is no known cause.

3. Article D:

The Age of Autism: Concerned in Tennessee

By DAN OLMSTED
UPI Senior Editor

Susan Lynn would like some information, please: What is the autism rate among people living in the United States right now who have never been vaccinated? If you have that data or know where to find it, kindly contact her by the end of the month, care of the Tennessee House of Representatives, which is considering whether to ban a mercury preservative from childhood vaccines. Lynn, a Republican member of the House, is sponsoring the bill. Lynn's colleagues in the state Senate already have passed it -- unanimously -- despite protests from the American Academy of Pediatrics and St. Jude Children's Research Hospital in Memphis. The pediatricians and the renowned hospital say the mercury preservative, called thimerosal, is not dangerous and not linked to autism or any other ailment. What bothers Lynn is they can't tell her the autism rate in Americans who've never been vaccinated.

"It just occurred to us, why doesn't there seem to be a problem (with autism) among unvaccinated populations?" she said. "Of course, that's anecdotal. There hasn't really been a study done, but it doesn't seem that there is a problem among unvaccinated populations. "It would certainly be wonderful if the federal government, or a group out there interested in this, would conduct a study, or maybe there already is information out there that can be gathered."

Lynn's question echoes one this column has been raising for several months -- where are the studies that would exonerate thimerosal by demonstrating that unvaccinated Americans have just as much autism as those who received the full slate of state-mandated, mercury-containing childhood immunizations?

"You have to ask yourself why are there no studies," Lynn said. "We have seen an explosion in autism. If we saw increases in any other disease like we've seen in autism, it would be a national crisis. Why is there no funding to investigate this? "I think it would be very useful. I don't know if I'll be able to get that data by December when our study committee meets again. But gosh, if you could be any help. ... "

This column's admittedly anecdotal reporting has turned up what looks like a lower prevalence of autism among the mostly unvaccinated Amish in Pennsylvania, Ohio and Indiana. Federal health experts say that is not a good group to study because they might be protected from autism by their isolated gene pool. They have not suggested an alternative. There are other, less genetically similar groups that don't vaccinate based on their religious, philosophical or health views. An example: a significant subset of the 2 million children of families who homeschool. One doctor who treats such families says they have almost no autism, either. A number of readers have offered similar observations about a number of other groups. But none of it is scientific or conclusive and, unless such studies are done, it never will be.

"We'd definitely want to look at a population within the United States of America because that's most relevant to us," Lynn said. "When you start looking at populations from other countries, you've got all kinds of other factors that we can't imagine."

Lynn said that absent such convincing information, she is willing to err on the side of caution and ban thimerosal from childhood vaccines.

"I read the science and read the experience of these parents and I realized, you know what, there really could be something here. And thimerosal is a poison. There is a skull and crossbones on that bottle. There's no reason to have that in there -- so let's take it out."

Lynn 's interest in the issue stems from personal experience. Her son, Michael, was diagnosed with ADHD -- attention deficit hyperactivity disorder -- at age 3; their doctor said they would have to wait till he was 6 to put him on Ritalin.

"I said why wait? I'm going crazy," she recounted. Researching the subject on her own, she came across the controversial Feingold Diet that eliminates various foods including those with artificial colors, flavors or preservatives. "I put him on the diet 100 percent and in three days, to my own astonishment, I had a normal little boy. "I was at my doctor when I showed him Michael could now sit still on the examining table instead of being under it and in all the drawers and everything. And I was totally dismissed. So we just agreed to disagree. "Through the years I have given this information to a lot of parents and it's worked, it's helped them," Lynn said. "I realized there is a tremendous amount we don't know and there is a tremendous amount that doctors for whatever reason dismiss, even though parents will testify to them, 'This has helped my child.'"

Michael spent 10 years on the diet and now, at 21, is doing fine, Lynn said. When the controversy over a possible thimerosal-autism link arose, she learned that some scientists suspect ADHD and autism might be on opposite ends of a spectrum of neurodevelopmental disorders triggered by a toxic exposure. And she said she saw the same pattern of parents being ignored when they said their child had regressed after vaccination -- and in some cases improved dramatically after biomedical treatment. In 1999 the U.S. Public Health Service and the pediatricians group urged that manufacturers phase out thimerosal in childhood vaccines as soon as possible. But they say scientific evidence now shows thimerosal is not responsible for autism; therefore, banning it ties their hands unnecessarily and injects politics in a medical decision based on "junk science." Lynn says she can't understand that argument. "I think it would be the best public policy for the state of Tennessee to remove it from children's immunizations. Whether or not it does contribute to mercury toxicity or autism or whatever you want to call it, not giving tiny children and newborn babies a chemical that has a skull and crossbones on the bottle, injected directly into their bloodstream, can't be a bad thing." Lynn also questions whether thimerosal is actually out of all routine childhood immunizations (it remains in most flu vaccines, which the Centers for Disease Control and Prevention now recommends for pregnant women and for infants 6 to 23 months old). She said a Tennessee mother testified at a legislative hearing that her son received an immunization that contained thimerosal on May, 21, 2004. "He suffered immediate effects from that and was diagnosed with autism and he's being treated now and he is coming around," Lynn said. Six states -- including California, New York and Illinois -- have banned thimerosal in childhood vaccines. Lynn said she is now canvassing them to determine whether the ban has caused problems. -- This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: dolmsted@upi.com

The Age of Autism: 'The facts say maybe'
By DAN OLMSTED
A small text block on the cover of the current Columbia Journalism Review may be a lot bigger than it looks:

"Drug Test. Q: Does thimerosal cause autism? A: The press says no; the facts say maybe."

The Age of Autism: Concerned in Tennessee (November 8, 2005) -- Susan Lynn would like some information, please: What is the autism rate among people living in the United States right now who have never been ... > full story The Age of Autism: Critics have their say ( October 3, 2005) -- In recent columns, we have explored reports by parents linking the onset of their child's autism to vaccinations. These parents strongly suspect ... > full story The Age of Autism: Research reversal (September 19, 2005) -- As public funding all but dries up for research into a possible link between vaccines and autism, advocates are trying to tap new sources, but ... > full story The Age of Autism: Rep. wants Amish study ( July 19, 2005) -- A U.S. Congressman who is a medical doctor said Tuesday he will seek funding to study the autism rate among the largely unvaccinated Amish. I want ... > full story

The Age of Autism: 'The Times' vs. parents (July 11, 2005) -- Last week this column critiqued a June 25 article in The New York Times, On Autism's Cause, It's Parents vs. Research. Subsequently we were ... > full story

Thimerosal is the mercury preservative that was used in childhood vaccines; some parents and researchers blame it for an astonishing rise in autism diagnoses in the past decade, but the media has tended to treat the idea as dangerous, discredited "junk science."

"Steeped in controversy and intrigue, the thimerosal debate has all the makings of a compelling news story, yet it has been approached with caution by the news media, which, more often than not, don't portray it as a legitimate scientific debate," writes CJR Assistant Editor Daniel Schulman in the accompanying article.

His closing line leaves no doubt that he thinks that's a bad idea. "(W)ith science left to be done and scientists eager to do it, it seems too soon for the press to shut the door on the debate." To understand why that's a big deal, consider two stories, both running Tuesday: one on the front page of The New York Times, the other leading the Health section of The Washington Post.

"5 Cases of Polio in Amish Group Raise New Fears" was the headline on the Times article by Gardiner Harris. He reported from Long Prairie, Minn., about the discovery of polio virus in an 8-year-old Amish child. "(T)he girl is now a wellspring for polio, a modern-day Typhoid Mary who can pass it along to others," Harris wrote. "Anyone who has not been vaccinated is vulnerable. And though vaccination rates in the United States are at historic highs, an increasing number of parents are resisting inoculations for their children, fearing that they may cause disorders like autism, a connection scientists have almost universally discounted."

The Post article, by Sandra G. Boodman, was headlined "Feuding Over Vaccines/ Doctors Vexed by Parents' Refusal." It, too, mentioned the concern that vaccines are linked to autism and quotes a doctor reassuring a patient that "multiple studies by prestigious groups have found no evidence that vaccines cause autism. ... His equanimity in the face of what many pediatricians say are persistent myths that circulate on the Internet -- that mercury used as a preservative in childhood vaccines causes autism, that the dangers of immunizations far outweigh the benefits, and that there is a conspiracy by drug companies, doctors and vaccine makers to conceal the harm -- is not shared by other physicians." These two stories exactly illustrate Schulman's point: that the media is dismissing the autism-thimerosal theory as almost universally discounted Internet mythology, right up there with conspiracy theories and anti-vaccine know-nothingism. Schulman's valuable service is simply pointing out that, inconveniently, some thoroughly legitimate scientists still say, "Maybe." They include members of the epidemiology department at Columbia's own Mailman School of Public Health. The department chair, Dr. Ezra Susser, wrote The Times in June to complain about a front-page piece that made parents and researchers who remain concerned thimerosal has caused autism look ridiculous.

"Scientists pursuing research on mercury and autism are caricaturized as immune to the 'correct' interpretation of existing studies," Susser wrote. "Researchers rejecting a link are depicted as the sole voice of reason. ... Whether mercury in any form (or any of several factors recently introduced to our environment) has anything to do with autism can and should be resolved with rigorous studies and respectful discourse, not moral indictments and denunciations."

About that earlier Times article, Schulman writes in CJR: "Headlined 'On Autism's Cause, It's Parents Vs. Research,' the story cast the thimerosal connection as a fringe theory, without scientific merit, held aloft by angry, desperate parents. ... Readers were left with little option but to believe that the case against thimerosal was scientifically unsound." The Times did not run Susser's letter and did not change its approach -- its ombudsman effectively told readers who complained to pound sand, and the report from Minnesota on polio and the Amish is more of the same. As is the Post's lumping of the issue with conspiracies and cover-up scenarios that only the most equanimous pediatricians could reasonably be expected to tolerate. We should point out that Schulman mentions Age of Autism in the article. His thesis -- that a careful reading of the facts suggests it's too soon to close the door on thimerosal as the possible cause of a horrendous affliction -- is one we have put forward since beginning this column at the start of the year. But now that critique is coming not just from "angry, desperate parents" who need to calm down and stop endangering the rest of us, or the odd reporter who can be dismissed as biased or misguided, but from a respected peer and arbiter, the Columbia Journalism Review. That's a big deal. It's the kind of thing that makes journalists stop and think -- or ought to, anyway. This ongoing series on the roots and rise of autism welcomes reader comment. e-mail: dolmsted@upi.com

3. Article E:

Getting Our Children Back / A documentary on treating autism seeks to destigmatize the disease

Carolyne Zinko
The San Francisco Chronicle

Elizabeth Horn, looking back on the moment doctors diagnosed her daughter, Sophia, with autism eight years ago, described it as being "the darkest day of your life.''

Not only because she was being told her daughter had a brain disorder that would hinder her ability to communicate and behave appropriately with others for the rest of her life, or that her daughter was joining the ranks of some 26,000 people in California who receive services for autism each year, some of whom may require special, institutional care -- a concern to state officials looking at long-term expenditures for the developmentally disabled. It was also because doctors at Mills Peninsula Hospital in San Mateo, where her daughter was being seen, had few suggestions for treatment beyond hiring a speech therapist.

"The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''

Horn received a list of therapists to contact. "In 1997, that's all you got,'' she said. "It was woefully inadequate.''

Horn, a filmmaker who primarily makes films for corporations, began looking at her family's journey through an artistic lens. She decided there was a story in how difficult it is to figure out what to do to help your autistic child.

Based partly on personal experience and partly on the experiences of families whose autistic children appear to be recovering with a controversial treatment, Horn created a 60-minute film, "Finding the Words." The film's financial sponsor is KTEH San Jose. American Public Television has agreed to submit the film to PBS for a national broadcast in April, which is national Autism Awareness Month.

In her search for answers, Horn began talking with therapists, asking if they had seen any autistic children -- as she put it -- "get better.'' She learned of people around the United States who were trying behavioral therapy and biomedical cures such as supplements and a highly controversial treatment called chelation therapy -- aimed at ridding the body of heavy metals, which some parents believe are introduced by thimerosal, a mercury preservative in childhood vaccines. Mercury is known to cause brain damage. The medical establishment has countered that there is no proof that thimerosal causes autism. Thimerosal has been eliminated from most vaccines since a 1999 call by the American Academy of Pediatrics and the U.S. Public Health Service for drug makers to voluntarily stop including the substance in immunizations.

The arc of the film goes like this: Parents with so-called normal children watch something go wrong with their child's development, receive the autism diagnosis and do whatever they can to get their children "back" to a normal state.

"My question to myself as a mom was, 'If another woman can get her kid back, why can't I get mine back, and if I can't get mine back, why?' " Horn said. "That's the question I want every parent to ask. Until they do, children will get lost at a rate of one every 22 minutes in this country with profound autism.''

During the course of four years, Horn visited nine families whose autistic children appeared to be improving with chelation, and she got permission to film them both before and after treatment began. One unexpected result of her interviews, Horn said, was the discovery of similar patterns of symptoms, behavior and recovery in each child. Dishearteningly, Horn said she discovered that many of the parents of autistic children were urged by doctors to put them in institutional care at ages as young as 2.

"The doctors felt they were being kind, and because most of the families had other children, that the best thing to do was to get the child out of the house and give them 24-hour care,'' Horn said. "But something in all these parents refused to accept the diagnosis. That moment where you decide that rather than give in to despair, you're going to turn and fight, was interesting to me as a filmmaker. Each of these families had that moment, and they had the outcomes with children improving as a result.''

One of the more dramatic improvements included in the film is that of a boy who did not begin to speak until he was 15. His family attributes it to the treatment. Although her 10-year-old daughter's progress has not been dramatic, Horn believes she is "slowly but surely getting better.''

The film was financed by 70 individuals, many from Silicon Valley, Horn said. Her husband, Zach Nelson, is chief executive at NetSuite.com.

One of her goals is to push for the use of technology to build a database of information on autistic children so that patterns of symptoms could be detected more quickly and treatments could be targeted more effectively.

Not all the families Horn approached wanted to be included in the film, even those whose children were said to be doing better after treatment. Horn said there is an "underground" of recovered children because some families don't want anyone to know that their children had been diagnosed with autism in the first place.

The film is Horn's attempt to push for a medical paradigm shift, which she feels will help remove treatment obstacles such as stigmatization and isolation.

"If we can change the definition of autism from incurable brain disorder to an illness, there's no shame in getting well,'' she said. "In fact, it's a triumphant story.''

3. Article F:

Supreme Court Case on Special Education Ruling

The Supreme Court ruled on Monday that parents, not school officials, have the burden of proving a parents' claim that an educational plan for their disabled child does not satisfy their child's needs. The 6-2 ruling came in the case of Schaffer v. Weast http://a257.g.akamaitech.net/7/257/2422/14nov20051045/www.supremecourtus.gov/opinions/05pdf/04-698.pdf

involving the burden of proof in disputed cases of student placement under the Individuals with Disabilities Education Act. Federal courts have been split three ways on the issue. The parents, however, would not have the burden of proof, the school would, if school officials seek relief in an administrative hearing, the opinion stressed. Justice Sandra Day O'Connor wrote for the majority: "The burden of persuasion in an administrative hearing challenging an Individual Educational Plan is properly placed on the party seeking relief, whether that is the disabled child or the school district." In the Weast case, the Fourth Circuit had ruled the same way, reversing a District Court ruling putting the burden on the school district. The parents' appeal to the Supreme Court argued unsuccessfully that school officials must always justify the appropriateness of a disabled child's school plan. Chief Justice John G. Roberts, Jr., took no part in Monday's decision

3. Article G:

Autism Community Consensus Statement Supporting the Combating Autism Act of 2005

Dear Senator Santorum, We write to you on behalf of national organizations assisting children diagnosed with autism, their families and other supporting organizations. Collectively, our organizations represent millions of family members, researchers, and medical professionals throughout the country, and we thank you for your support of The Combating Autism Act (S. 843) of 2005. The autism community is united in its support of the provisions contained in The Combating Autism Act, as revised and presented to you in a joint delegation meeting today. We believe the revisions strengthen and enhance the Combating Autism Act, and the undersigned organizations stand in full support of the bill as now written.Further, the autism community, represented by the undersigned organizations, stands fully prepared to engage in widespread grassroots mobilization in support of the revised bill.Thank you for your commitment to our nation’s most precious resource…its children.Respectfully,A-CHAMP
Autism One
Autism Speaks
COSAC
Cure Autism Now
Dan Marino Foundation
First Signs
Generation Rescue
Moms Against Mercury
National Alliance for Autism Research
NoMercury
OAR
SARRC
SafeMinds
Talk About Curing Autism
TalkAutism
The Deirdre Imus Environmental Center for Pediatric Oncology
Unlocking Autism
US Autism and Asperger’s Association

IMPORTANT ACTION REQUIRED!! HAS YOUR CONGRESSIONAL REP SIGNED UP TO SUPPORT THIS BILL?? FOR MORE INFO ON THIS BILL AND HOW YOU CAN HELP PLEASE SEE: www.autismbill.org

4	Vaccine News

4. Article A:

SafeMinds Issues Urgent Warning on Risk to Pregnant Women, Children, Infants of Exposure to Mercury from Flu Shots.

WASHINGTON, Nov. 2 /U.S. Newswire/ -- As the flu season approaches and the Bush administration begins sharing details of their plan to prevent a possible avian flu pandemic, much emphasis is being placed on the idea that flu shots should be readily available and administered to large portions of the population. But lost in these numerous media reports is the danger posed by mercury found in a majority of annually administered flu vaccine preparations. "Consumers are not aware of the fact that flu shots still contain thimerosal, a mercury based preservative recently phased out of most childhood vaccines," said Lyn Redwood, president of SafeMinds, a non- profit organization dedicated to raising awareness and conducting research into mercury exposure. Most alarming to Redwood is the fact that pregnant mothers and infants are now targeted to receive the annual flu vaccine when they are exactly the populations known to be most vulnerable to exposure to mercury. "We know from study after study that mercury rapidly crosses the placenta, enters the fetal brain and interrupts critical stages of development," said Redwood. The CDC's recently recommended exposure to mercury from flu vaccine comes despite the fact that one in every six women of childbearing already has blood levels of mercury high enough to harm their unborn children from environmental exposures. An EPA announcement came on the heels of a report, which found that the fetus actually accumulates mercury and typically has blood levels 70 percent higher than those found in the mother at the time of birth. According to Mark Blaxill, director of SafeMinds, "Why on earth would the CDC on one hand recommend that pregnant mothers avoid environmental exposure to mercury from eating seafood, but on the other hand ignore the danger from mercury administered in vaccines when they know that an average flu vaccine exceeds EPA's safe level of daily mercury exposure in the average woman by four fold? By suggesting that a direct injection of ethyl mercury via a flu shot is harmless, and indeed by recommending that exposure, these policies defy not only sound medical practice but common sense." "If you choose to be immunized against regular flu, you should know what benefits you're actually getting," continued Blaxill. "American consumers should make informed decisions about their health. Amidst rising fears over a theoretical avian flu pandemic, numerous health officials have tied the avian flu risk to the regular annual flu shot, but most people don't realize that the annual flu shot won't protect you against avian flu. In addition, pregnant women also should know that recent scientific studies show little support or benefit to them or to their fetus from a flu shot." SafeMinds also expressed concern about the blanket protection from liability for vaccine manufacturers offered in Bush's flu pandemic plan. "Any kind of blanket immunity will only take away incentives for producing safe products and inevitably, will set our country up for a bad outcome," continued Redwood. "Immunity from legal liability for injury will result in vaccines that are less safe, which in turn will cause declining public confidence in vaccines." The claim that the threat of lawsuits has kept manufacturers from entering and staying in the vaccine business has long been touted as a reason for protecting the pharmaceutical industry. Language providing relief from liability for vaccine manufacturers has been introduced unsuccessfully over the past several years. Although supporters of these bills claimed that intervention is needed to address concerns over the vaccine supply, the past problems that occurred were a result of long overdue FDA enforcement actions concerning violations of good manufacturing practices and complacency on the part of the manufacturers for production and distribution of their products, not litigation. As the avian flu scare becomes increasingly political, SafeMinds is urging consumers to take a critical view of the rising media hype. SafeMinds encourages doctors to educate themselves and their patients about the risks of mercury exposure before administering the flu vaccine and to recommend only mercury free vaccine products for their patients.

More information about SafeMinds (including neurodevelopmental disorders, autism and mercury exposure) may be found at http://www.safeminds.org or by calling Stephanie Morris at 202-628-7772.

4. Article B:

It takes courage to tell mercury story

CRAIG WESTOVER
In 1988 the St. Paul Pioneer Press Dispatch won the Pulitzer Prize for feature writing. "AIDS in the Heartland" chronicled an AIDS patient from diagnosis to death. Setting the Pioneer Press apart was more than simply the passionate writing of reporter Jacqui Banaszynski. Great journalism has an attitude. Banaszynski wanted a focus that "would go a step beyond the informational coverage of AIDS, a story that would not only humanize the AIDS crisis but enlighten and, perhaps, nudge society towards a more compassionate understanding of this stigmatized killer." Yesterday's "AIDS in the Heartland" stands in sharp contrast to today's media coverage of another "stigmatized" cause — the battle of "zealot" parents to raise understanding of the plausible connection between thimerosal, a mercury-based preservative in some childhood vaccines, and autism. "The thimerosal question — scientifically, politically, and emotionally complex — is proving to be a test for journalism," writes Dan Schulman in the November issue of Columbia Journalism Review. Steeped in controversy and intrigue, the thimerosal debate has all the makings of a compelling news story, yet it has been cautiously approached by news media, and if covered at all, is generally not portrayed as a legitimate scientific debate. Locally, proposed legislation to limit the use of thimerosal in childhood vaccines prompted brief coverage on television news programs. The Minneapolis paper ran a single article that framed the controversy as parents versus experts. The Pioneer Press has not run more than a handful of stories on the topic on its news pages. In the mid-1980s, AIDS was no less scientifically, politically and emotionally complex, especially when pursued to provide understanding, not just air the issue. Many readers were not happy with the detail or depth of "AIDS in the Heartland." Some accused the Pioneer Press of glorifying homosexuality, trading on death, exploiting a family's private pain. Managing Editor Mark Nadler defended the series as lifting the shroud of ignorance from AIDS. "Ignorance breeds fear, and a search for culprits rather than cures," he wrote. "His (the patient's) is a story worth telling." A story worth telling? About the time "AIDS in the Heartland" was appearing in the Pioneer Press, the number of children diagnosed with autism was one in 10,000. Today, the Centers for Disease Control and Prevention pegs the number at one in 166. During that time, the number of immunizations on the childhood vaccination schedule more than doubled, raising the dosage of mercury, a known neurotoxin, far above federal safety standards. New York Times contributor David Kirby's book "Evidence of Harm," released in April, presented both sides of the thimerosal controversy in a documentary manner, allowing evidence (or absence of comment) to speak for itself. The resulting picture is that of knowledgeable parents and independent researchers challenging a stonewalled government and scientific establishment that relies on after-the-fact epidemiological studies, not before-the-fact safety data, to deny the autism link. However, it has been establishment sources, journalists' go-to guys, framing the debate, often portraying parents as crackpots, conspiracy theorists or zealots, and researchers as junk scientists and charlatans. That perception, notes Schulman, has seeped into the collective consciousness of the news media. There are as many reasons for news media not to cover the thimerosal controversy as there were for the Pioneer Press to back off the Pulitzer-worthy "AIDS in the Heartland" and go with a non-controversial and "balanced" story. The difference is attitude — a willingness to take a risk to find the truth. Beat reporters, notes Columbia Journalism Review, risk losing health sources by calling their judgment into question. A reporter told Schulman that covering the thimerosal controversy was nearly "career-ending." His superiors regarded treating the issue as a two-sided debate as legitimizing a crackpot theory and influencing parents to stop vaccinating their children or to seek out experimental treatments. Real career challenges, to be sure, but what of responsibility to readers? It took journalistic courage to face up to the AIDS epidemic and attack the story, to nudge society in the direction of understanding. Today, the autism epidemic could use a little less fear, a little more nudging and a little less fostering of ignorance. "Whether the thimerosal theory is proved right or wrong, there will be consequences," writes Schulman, "for the public health apparatus and vaccine manufacturers, for parents and their children, even for journalists. But with science left to be done and scientists eager to do it, it seems too soon for the press to shut the door on the debate." Amen. Westover is an Afton writer who blogs at www.craigwestover. blogspot.com. He sits on the board of the Minnesota Autism Center, which has not taken a position in the thimerosal controversy and does not provide biomedical autism treatment. E-mail him at westover4@yahoo.com. RELATED ARTICLE:

Graduate School of Journalism, Columbia University

HIGHLIGHT:
Is a vaccine preservative linked to autism? Politically, scientifically, and emotionally complex, the thimerosal question challenges journalism. BODY:
On May 18, 2004, the Institute of Medicine, a branch of the prestigious National Academies, delivered its eighth and final report on vaccine safety, seeking to end a scientific controversy that had built to a slow boil over the previous five years: whether a mercury-containing vaccine preservative called thimerosal was to blame for an alarming spike in autism cases among a generation of children. After three years of reviewing this and other immunization safety questions on behalf of the Centers for Disease Control and Prevention, the institute's fourteen-member panel rejected the thimerosal link, and, in a powerful policy statement, recommended that research funding in this area be shifted toward other, more promising lines of inquiry. Under headlines such as this one from The Washington Post, EXPERTS FIND NO VACCINE-AUTISM LINK; PANEL SAYS MORE RESEARCH ON POSSIBLE CONNECTION MAY NOT BE WORTHWHILE, the press dutifully reported the IOM's conclusions, perhaps as eager to lay the question to rest as the IOM panel itself. For a time it appeared the controversy over thimerosal would end there. It didn't. Over the past seven months, it has gained traction again, leaving journalists in an awkward position. The thimerosal question -- scientifically, politically, and emotionally complex -- is proving to be a test for journalism, and the successes and failures are evident in the coverage. David Kirby, a Brooklyn-based writer, jumpstarted the debate in April with the publication of his book, Evidence of Harm, which lays out a compelling case for a connection between thimerosal and autism. Then, in June, Robert Kennedy Jr. followed with a more pointed -- some say over-the-top -- article, co-published by Rolling Stone and Salon.com, that alleges what amounts to a government cover-up of the harmful properties of thimerosal in the interest of buffering vaccine manufacturers from a cascade of lawsuits and maintaining public confidence in the national immunization program. Still, the bulk of the scientific establishment denies the autism link, citing the conclusions of the IOM panel, and views believers as crackpots, conspiracy theorists, or zealots -- a perspective many medical experts barely conceal in conversations with reporters. In an interview with Myron Levin of the Los Angeles Times after the publication of the IOM report, Dr. Stephen Cochi, the head of the CDC's national immunization program, dismissed supporters of the thimerosal theory as "junk scientists and charlatans." If so, then such universities as Harvard and Columbia, among others, employ charlatans -- scientists who believe that a link between mercury exposure and autism is plausible. Even so, the perception that only distraught, activist parents and disreputable scientists back the thimerosal theory has seeped into the collective consciousness of the news media, which, in general, have been reluctant to cover the controversy. Both sides in the debate make convincing arguments to support their cases, and in the cacophony of competing claims each is guilty of using data selectively. What is known is this: Since the late 1980s the number of children diagnosed with autism has increased sixty-fold, from one in every 10,000 in 1987 to one in every 166 in 2003. Much of this spike overlaps with a period when, due to recommendations by the CDC and the Food and Drug Administration, the number of suggested immunizations on the childhood vaccination schedule more than doubled, raising the doses of mercury that some children received to levels that far surpassed federal standards for mercury exposure. (The standards were based on methylmercury, the type emitted by coal-burning power plants.

Ethylmercury, which makes up nearly half of thimerosal by weight, is a closely related compound. To date, ethylmercury has received far less study, and scientists disagree on whether it's as harmful as methylmercury, though both are considered neurotoxins.) Until the late 1990s, health officials were unaware of the total amount of mercury children were receiving in their vaccinations. It's not unreasonable to ask how this went unnoticed, and unreported, for so long. The answer is simple: no one had ever done the arithmetic. When scientists did, the U.S. Public Health Service recommended that vaccine manufacturers phase out thimerosal from children's vaccines in 1999 as a precaution. It was careful to note, however, that "there are no data or evidence of any harm." As it stands, the preservative, which allowed drug manufacturers to supply vaccines in multidose vials (the thimerosal-free, single-dose versions are costlier), has been eliminated from most immunizations, excluding some flu and tetanus shots. During 1999 and 2000, the thimerosal link was quietly under study by the CDC, and, as shown in internal memos and meeting minutes, health officials were deeply concerned about what they might find. Thimerosal activists point to this history: In June 2000, the CDC convened a closed meeting at the Simpsonwood Convention Center in Norcross, Georgia, to discuss, among other things, preliminary findings on thimerosal. In addition to the health officials, researchers, and vaccine experts in attendance were representatives from GlaxoSmithKline, Merck, Wyeth, and Aventis Pasteur, the vaccine manufacturers who had the most to lose if an autism link were proven. During one session of the two-day meeting, the CDC epidemiologist Thomas Verstraeten presented the results of an analysis of the CDC's Vaccine Safety Datalink, a database that contains the vaccination histories of more than seven million Americans. His study, at least at that stage, appeared to support a connection between thimerosal and neurodevelopmental disorders, showing what Verstraeten described as "statistically significant relationships between exposures and outcomes." The presentation caused one physician in attendance to remark, "the medical legal findings in this study, causal or not, are horrendous." Attendees were instructed that what they'd heard that day was to be considered "embargoed." Known as the Simpsonwood transcripts, the minutes of this meeting are widely available on the Internet thanks to a Freedom of Information Act request by the autism advocacy group SafeMinds. Some advocates of the thimerosal theory point to Simpsonwood as proof that the government buried evidence of an autism link. In the minds of some supporters of the theory, the perception of conspiracy was heightened when Verstraeten's study, published three years later, no longer indicated an association between thimerosal and neurological maladies, including autism. Adding to their suspicion is the fact that in the study, published in the journal Pediatrics, Verstraeten was listed as a CDC researcher, when in fact he had been hired away by GlaxoSmithKline two years earlier. (Nor did they find it any less suspicious when a midnight rider turned up in a 2002 bill creating the Department of Homeland Security that sought to protect vaccine manufactures from thimerosal-related lawsuits. The measure was eventually removed.) But Simpsonwood is not a smoking gun. Nor are other documents that purport to be, including the transcript of a private session of the Institute of Medicine's Immunization Safety Review Committee from 2001, in which the committee's chairwoman, Dr. Marie McCormick, referring to the vaccine-thimerosal issue, says that the CDC "wants us to declare, well, these things are pretty safe on a population basis." It is a statement that indicates to some that the IOM had already decided where it was going to come down on thimerosal. If transcripts of both meetings are not damning, the comments of some attendees are striking, particularly when they are quick to note the legal ramifications should a connection be established. As McCormick makes plain during the 2001 meeting, attendees were aware of the conclusion that the CDC wanted them to reach, but that isn't proof that the institute manipulated data to reach that end, as some allege. When the IOM panel released its final report in 2004, it had analyzed more than 200 studies and based its conclusions largely on five recent epidemiological papers that appeared to debunk the autism connection, including Verstraeten's and one from Denmark that shows autism cases rising after thimerosal was removed from that country's vaccine supply. Excluded was much of the biological research that supports a link, which the IOM deemed speculative. Those are the facts, though they are interpreted in radically different ways by each side. Even the question of whether the nation is currently experiencing an autism epidemic is subject to debate. Detractors posit that the increase in cases is a red herring, that the numbers reflect changes in how autism is diagnosed and reported. As for the IOM report -- the nail in the coffin for the autism link as far as many scientists are concerned -- believers hold that the studies that the panel relied on were flawed. For example, as David Kirby reports in Evidence of Harm, the researchers on the Danish study examined autism cases both before and after 1992, when thimerosal was removed, but used two different data sets in doing so, tallying inpatient cases through 1994 and adding outpatient cases to their count thereafter, a factor that could explain the increase they observed. According to Kirby, even the study's authors conceded, in their own words, that they "may have spuriously increased the apparent number of autism cases." Verstraeten, for his part, seemed to grow tired of how his findings were being interpreted by both sides. In an April 2004 letter to Pediatrics, he wrote that his study "does not state that we found evidence against an association, as a negative study would. It does state, on the contrary, that additional study is recommended, which is the conclusion to which a neutral study must come." He went on to call allegations of a potential conflict of interest an "insult," saying that he remained on the study only in an advisory capacity after he went to work for Glaxo. "Did the CDC water down the original results? It did not." Steeped in controversy and intrigue, the thimerosal debate has all the makings of a compelling news story, yet it has been approached with caution by the news media, which, more often than not, don't portray it as a legitimate scientific debate. "I'm putting my faith . . . in the Institute of Medicine," ABC's medical editor, Dr. Timothy Johnson, told viewers during a segment on thimerosal in July. At the conclusion of an NBC report on the debate last winter, the science correspondent Robert Bazell was careful to note that "if we stop vaccinating our children, we run the risk of having these horrible diseases come back . . . . And the evidence right now is that vaccines do not cause autism." There is a very real fear that taking the thimerosal theory seriously will prompt antivaccine blowback. Myron Levin, the Los Angeles Times reporter, said that some journalists have been cowed by the notion that "by the mere act of covering this, they will instill panic in the vaccination-getting public, or feed mindless phobias that cause people to refuse to let their kids get shots." That concern is reflected in the coverage and has implications for how deeply the story is reported. "I think many news organizations have held back and given the story short shrift," Levin said. On June 25, The New York Times addressed the thimerosal controversy in a front-page article, the product of five months of reporting by Gardiner Harris and Anahad O'Connor. Appearing less than two weeks after Robert Kennedy's piece, which would later have a list of corrections and clarifications appended to it, the Times article had been eagerly awaited by proponents of the thimerosal link, some of whom had been communicating regularly with the Times reporters over the previous months. Believing that the heft of the paper's reputation would help to propel their cause into the mainstream, they expected a proper airing of both sides of the question -- that, after all, was the impression O'Connor gave at least one of his sources, the mother of an autistic child and a member of an autism advocacy organization, when he approached her in late January. "I'm thinking of a 2,000-word story, essentially saying that an array of studies over the years (the Institute of Medicine report, I would think, being the most prominent) were intended to settle the issue of autism and vaccines once and for all," he wrote in an e-mail. "Yet it seems that the question is still very much open . . . and evidence for the case against vaccines has been mounting, despite many researchers' insistence that the issue is dead. I think, for now at least, I'd like to just present the evidence on both sides and let the readers decide." The result was much more one-sided. Headlined ON AUTISM'S CAUSE, IT'S PARENTS VS. RESEARCH, the story cast the thimerosal connection as a fringe theory, without scientific merit, held aloft by angry, desperate parents. The notion that supporters of the theory were disregarding irrefutable scientific findings was an underlying theme, drilled home several times. "It's really terrifying, the scientific illiteracy that supports these suspicions," Dr. Marie McCormick told the Times. Readers were left with little option but to believe that the case against thimerosal was scientifically unsound. The piece did note the work of Mark and David Geier, a father-son research team who believe that mercury exposure is linked to autism. The Geiers' research has been a lightning rod for criticism, and their methodology has been called into question by some in the scientific community. But before the reporters even discussed the Geiers’ science, they had already painted the researchers as eccentric outsiders: "He and his son live and work in a two-story house in suburban Maryland. Past the kitchen and down the stairs is a room with cast-off, unplugged laboratory equipment, wall-to-wall carpeting and faux wood paneling that Dr. Geier calls 'a world-class lab -- every bit as good as anything at N.I.H.'" Omitted from the story was the work of Dr. Mady Hornig, a Columbia University epidemiologist; Richard Deth, a Northeastern University pharmacologist; Jill James, a professor of pediatrics at the University of Arkansas; and others whose work suggests that thimerosal may cause neurodevelopmental disorders in a subset of susceptible children (those who are not able to eliminate mercury from the body in the ways that most people do). The story alluded to Boyd Haley, chairman of the department of chemistry at the University of Kentucky and an ally of thimerosal activists, in the same sentence as a Louisiana physician who believes "that God spoke to her through an 87-year-old priest and told her that vaccines caused autism" -- leaving Haley, it would seem, guilty by association of lunacy. Several reporters I spoke with who have covered the thimerosal controversy described the Times story as a smear. One called it a "hit piece." The Times' O'Connor told me he had looked at the research linking thimerosal with autism, including the work of Hornig, Deth, and James, but ultimately found the epidemiological studies cited by the IOM more persuasive. "The larger scientific community has rejected a link between thimerosal and autism," he said. "You do have some scientists who are convinced that there's a link, but then you have the American Academy of Pediatrics, the World Health Organization -- it's not a stretch to say that the scientific community has rejected this link." The article prompted a massive reader response. One organization, known as A-Champ (Advocates for Children's Health Affected by Mercury Poisoning),organized an e-mail campaign directed at top editors at the Times, as well as the public editor, Byron Calame. O'Connor personally received dozens of e-mails and letters. "There were a couple that were threatening. There were some that were pretty harsh and others saying that I was part of the conspiracy. A lot of people responded saying there must be some link between the Times and the pharmaceutical industry." Responding to the complaints of one group, Calame wrote: "I have carefully reviewed your e-mail and spent several hours with the editors and reporters who prepared the article . . . . This has left me convinced that th