.

E-News July 2005

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for July 2005 - #1. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

If this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California autism support group called TACA. As always, email your thoughts and/or questions to us. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

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. 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.

In This Month's Edition of TACA e-news:

 
1.
Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info –
July - September 2005 meeting schedule.
 
PLEASE NOTE:
WE HAVE GREATLY EXPANDED OUR TACA COSTA MESA MEETING DATES & OFFERINGS! WE ARE VERY
EXCITED ABOUT THE UPCOMING SPEAKERS!!! Please check out the variety of meeting dates, times and speakers!!
 
2.
UPDATE – the TACA Friends & Family Campaign –
FINAL UPDATE AND THANKS TO ALL THAT PARTICIPATED!
 
3.
General News:
 
  A) California Autism Numbers on the decline?
 
  B) Autism Figures May be Wrong (??)
 
  C) Federal Action Alert: H.R. 534 & S. 345 Restrict the Rights of Vaccine Injury Claimants!
 
  D) After dramatic increase, what does the future hold?
 
4.
Vaccine News
 
  A) A Mystery Behind Autism’s Rise
 
  B) Deadly Immunity – by Robert Kennedy Jr. (Featured in Rolling Stone & Salon)
 
  C) Joint Statement from CAN, NAAR & Autism Speaks and follow up statement from CAN.
 
  D) Debate over link between mercury and autism still going strong
 
  E) Don't believe the childhood vaccine fearmongers
 
  F) On Autism's Cause, It's Parents vs. Research (and a response from R. Kennedy)
 
5.
Fun Activities
 
6.
TACA Mom In Need
 
7.
TV HOST LOOKING FOR FAMILIES AFFECTED BY AUTISM
 
8.
New Books & Web Resources
 
9.
Upcoming Conferences & Seminars
 
10.
Personal Note

1. Upcoming TACA Costa Mesa Meeting Schedule

All Meetings at The Vineyard:  
102 E. Baker, Costa Mesa, CA
[click here to find a meeting]
 
Saturday, August 13, 2005: SUPER SATURDAY! TWO MEETINGS / TWO LOCATIONS TO CHOOSE FROM!
   

Parent Open discussions – for support and sharing info – moderated by Diane Gallant

  • Time: 1:00 pm- 4:00 pm
  • Fee: Free – no RSVP required
  • Location: Vineyard Newport Church 102 E. Baker Costa Mesa

Gluten Free / Casein Free COOKING CLASS & Education – by Lisa Ackerman

  • Time: 2:00 pm- 5:00 pm
  • Fee:$25 per person / $40 per couple - RSVP required / 10 seats left!!!
    RSVP off the TACA web site or via mail
    Please be sure to include: name, address, email & phone #. NO walk-ins can be accepted.
  • Location: Sur La Table, 832 Avocado Ave, Newport Beach, CA 92660
 
Saturday, September 10, 2005: Dr Christine Majors – Child Neuro-psychologists
 

Her important discussion will review: What is in a standardized test and outside evaluations? Why are they important? Where should you start? The discussion will include important observations about district and regional center testing.

  • Time: 1:00 pm- 4:00 pm
  • Fee: Free – no RSVP required
  • Location : Vineyard Newport Church, 102 E. Baker, Costa Mesa
 
Sunday, September 25, 2005: TACA’s 2nd Annual Picnic & Fundraiser
 
  • Time: 11:00am – 4:00pm
  • Location: Camp James in Irvine, CA
  • Fee: required / early registration recommended
 
Saturday, October 1, 2005: Visualization Programs For Non Verbal Children
  8-hour Parent Training by Center for Autism & Related Disorders (CARD)
more information coming soon!
 
Saturday, October 8, 2005: TACA meeting – speaker being confirmed
 
Saturday, November 5, 2005: Advanced Social Skills Parent Training
  8-hour training – by Center for Autism & Related Disorders (CARD)
more information coming soon!
 

(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)

Directions:

405 FWY South, Exit Bristol
Right on Bristol
Left on Baker
Go under FREEWAY.
The Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road,
make FIRST right into the Vineyard's parking lot.

And remember, we are still a non-faith based group!


TACA Has 7 Southern California Meeting Locations:
     
1.
Costa Mesa: 
2nd Saturday of each month (info in item #1 for meeting topics and details)
CLICK HERE TO FIND A MEETING
2. West Hills:

(the Valley, man) 1st Sunday of every month, 7-9 p.m.
Location: Jumping Genius – 22750 Roscoe Blvd., West Hills
(the corner of Roscoe Blvd. & Fallbrook Ave.) Info: Contact us

  • August 7 - Safety and Autism - Moira Giammatteo

  • Sept 11 - (DATE CHANGE DUE TO HOLIDAY) - Mainstreaming/Inclusion - Cathy Beier

3. San Diego:

4th Tuesday evening – 6:30- 8:00 p.m. - Info: Becky Estepp
NEW LOCATION AS OF April 2005: Rancho Bernardo Community Presbyterian Church
17010 Pomerado Road, San Diego, CA 92128 - Rooms 22 A&B

  • July 26 -Amy Langerman, "Lawyer vs. Advocate -- A duel to the finish" 
  • August - no meeting
  • Sept. 27 - Chelation and alternative detoxification methods for ASD children
    Chelation is often a controversial but recommended treatment plan for ASD children who are tested as metals toxic. For as many reports which cite chelation as an alternative practice, Autism Research Institute (ARI) cites chelation to be by far the most recommended biomedical treatment protocol by thousands of parents surveyed this past year. Several recent studies have also outlined that many ASD children have a defect in removing toxic metals from their bodies and should consider treatments that help boost and enable detox. This presentation will review many of the commonly prescribed and natural chelation remedies available today. (This will include: DMPS, DMSA, ALA, Glutathione, and other over the counter supplements used today for chelation and detox.)
    Presented by: Dr. Kurt Woeller – Stillpoint Health www.biohealthcenters.com
    Dr. Woeller is a DAN (Defeat Autism Now) Doctor since 1999.
  • October 25 - Siri Andrews --Social Stories for Autism Spectrum Disorders
  • November 29 - Speaker to be announced
  • December - no meeting
4. Corona:

3rd Saturday – 1:30–4:30 p.m. NEW LOCATION AS OF 2/1/2005: Autism Behavior Consultants - 1880 Town & Country Road Building B-101, Norco, CA 92860. Located off the 15 Freeway (Take 2nd street or 6th street exit) off Hamner. For more information, please contact us

5. Torrance: 3rd Monday of each month at Whole Foods Market on PCH in Torrance 6:30 - 9:00 p.m. Beth Mulholland - SPECIAL NOTE: This group tends to be an advanced group with biomedical discussions. If you are a newly diagnosed family, you may wish to attend other locations for your first meeting.
6. Visalia: 3rd Wednesday of month
Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee 6:30-8:30 p.m. Speaker
Location: Kaweah Delta Multi-Service Center Auditorium, 402 W. Acequia, Visalia
Information: Please contact Lynne Arnold
  • Wednesday, July 20, 2005
    Working with the Regional Center: Your Rights Under the Lanterman Act - Enid Perez, Attorney; Kay Spencer, Advocate, of the Office of Client Rights.
  • Newly added meeting: COFFE TALK & SUPPORT
    Time: Every Tuesday morning, 9-11 a.m.
    Location: Visalia Coffee Company, 129 E. Main St., Visalia
7. Santa Rosa:

(typically) 2nd Tuesday of each month at Swain Center - 795 Farmers Lane, Suite 27 , Santa Rosa – 7:00 - 8:30 p.m. - For more info: contact us

Speakers:

  • August - Devin Houston, Ph.D. HNI
  • December - Lisa Ackerman

 
TACA Calendar Quick View
JULY 2005
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
         
1
2
3
West Hills Meeting
4

5
Coffee Talk in Visalia
6

7

8

9
Costa Mesa Meeting

10

11

12
Santa Rosa Meeting
-----------------
Coffee Talk in Visalia
13
Crimson Center Family Workshop (Fee-based)
14

15
Crimson Center Family Workshop (Fee-based)
16
17

18
Torrance Meeting
19
Coffee Talk in Visalia
20
Visalia Meeting
21

22

23
Corona Meeting
-----------------
TACA Social Event - Free Carousel Rides at South Coast Plaza
24

25

26
San Diego Meeting
--------------
Coffee Talk in Visalia
27

28
TACA Family Event - Pump It Up in Huntington Beach
29

30

31
 
 
 
 
 
 
AUGUST 2005
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
 
1

2
Coffee Talk in Visalia
3

4

5

6

7
West Hills Meeting:
Safety & Autism
8

9
Santa Rosa Meeting
----------------
Coffee Talk in Visalia
10

11

12

13
Costa Mesa Meeting: Parent Open discussions
--------------------
Gluten/Casein Free Cooking Class by Lisa

14

15
Torrance Meeting
16
Coffee Talk in Visalia
17
Visalia Meeting
18

19

20
Corona Meeting
--------------------
TACA Social Event - Free Carousel Rides at South Coast Plaza
21

22
Social Skills Camp for Kiddos (one week camp)
23
Coffee Talk in Visalia
24

25
TACA Family Event - Pump It Up in Huntington Beach
26

27

28

29

30
Coffee Talk in Visalia
31

 
 
 

 


2) STATUS On the TACA “FAMILY & FRIENDS” campaign:

From April 2005 – June 30, 2005, many of TACA’s members have helped raise awareness and needed funds for our efforts! I WANT TO SEND A SPECIAL THANK YOU TO ALL WHO HAVE PARTICIPATED IN THESE GREAT EFFORTS!

What is the Friends & Family Campaign?

What Happened?

  • 80 families participated
  • Over 2,500 autism awareness blue bracelets were distributed
  • And over $33,000 was raised to help TACA’s efforts!
  • Additional funds are still coming in (and welcomed anytime!!)

TACA’s Friends & Family Top Fundraisers:

 

 

 

 

Cary Family

 

$5,550

 

Valdez Family

 

$5,000

 

Yorks Family

 

$5,000

 

O'Connor Family

 

$1,635

 

Brodske Family / Ford

$1,246

 

Spicer Family

 

$1,200

 

Monahan Family

 

$1,300

 

Romero Family

 

$1,050

 

Barboza Family

 

$983

 

Contino Family

 

$875

 

Busse Family

 

$800

 

McIlvain Family

 

$525

 

Riley Family

 

$521

 

Mason Family

 

$480

 

Brodie Family

 

$335

 

Lee Family

 

$325

 

Quenimitter Family

$300

 

Oishi Family

 

$295

 

Ramirez Family

 

$267

 

Johnson Family

 

$260

 

Hong Family

 

$250

 

Hengehold Family

 

$250

 

Dr Kurt Woeller & family

$250

 

Zielinski Family

 

$235

 

Wu Family

 

$230

 

Sanchez Family

 

$225

 

Stillman Family

 

$210

 

Barstad Family

 

$200

 

Kersey Family

 

$200

 

Na Family

 

$200

 

Lyons Family

 

$200

 

Palreddy Family

 

$150

 

Barmache Family

 

$150

 

Kramsky Family

 

$125

 

Kroeger Family

 

$100

 

Garcia Family

 

$50

 

Yensco Family

 

$50

 

 

 

 

 

 

Total Family Campaign:

$ 31,021

 

 

Money In (Bracelets )

$ 1,006

 

 

Online Donations:

$ 250

 

 

TOTAL DONATIONS IN:

$ 32,277

 

As always – A BIG THANK YOU FOR YOUR IMPORTANT EFFORTS IN FUNDRAISING AND RAISING AUTISM AWARENESS! Please let me know if you have any questions or need any help.

All my best,
Lisa A Jeff’s (and Lauren’s) Mom

SPECIAL THANK YOU PARTY FOR THE FRIENDS AND FAMILY CAMPAIGN PLUS MENTOR TRAINING – TWO TOPICS AT ONE FUN MEETING!

Date: Saturday, July 30
Topic 1: MENTOR TRAINING
Time: 4:00pm – 5:30pm
Topic 2: TACA FRIENDS & FAMILY CAMPAIGN CELEBRATION
Time: 5:30pm – 6:30pm
Location Skosh Monahan’s – 2000 Newport Blvd, Costa Mesa
RSVP: RSVP for both event required – please send a note to us ! THANK YOU!!


3) General News

Article A: CALIFORNIA AUTISM CASES ON THE DECLINE?

According to information released today by the California Department of Developmental Services (DDS), California's developmental services system added 734 new cases of professionally diagnosed DSM IV full syndrome autism to it's statewide system in the past three months, (April 4, 2005, to July 8, 2005).

Not An Epidemic?

There are now 28,046 persons with autism in California's system compared to 13,054 in 2000, an increase of 14,992 new children in five short years. It took over 32 years from 1969 to April 2001 to add a total of 14,777 new children to the entire system, it took just five years, from July 2000 to July 2005, to add 14,992 new children. In effect, the caseload growth in the past five years surpassed the ENTIRE caseload growth for the first 32 years of the system's history!

A Downward Trend? (See charts below)

Calendar year 2002 was California's all time record year for the number of new cases of professionally diagnosed, full syndrome, DSM IV autism (NOT including PDD, NOS, Asperger's Syndrome, or any other autism spectrum disorder) entering California's 36 year old developmental services system with 3,259 new cases. In calendar year 2003 the number of new cases dropped to 3,125 new cases and in calendar year 2004 the number of new cases dropped again to 3,074. For the first half of calendar year 2005, California has added 1,470 new cases compared to 1,518 new cases for the same time period in 2004.

It is important to note, that in California's developmental services system, children under the age of 3 years old are NOT counted in DDS's quarterly reports. Therefore, as an example, children born in 1999 would not begin to show up in the DDS quarterly reports until at the very earliest, the year 2002. DDS reports that nearly 90% of all persons with autism in California's system entered the system by age 6 years old.

An Epidemic of Autistic Children

Over 80% of California's 28,046 persons with full syndrome autism enrolled in California's voluntary developmental services system are between the ages of 3 and 17 years old, meaning only 2 out of 10 persons with full syndrome autism are over 18 years old. There are more 14 year olds then 15 year olds, there are more 13 year olds then 14 year olds, so on and so forth...


Article B: Autism figures may be wrong

Data unsuitable for proving rise
By Michael Conlon, Reuters  |  July 11, 2005

Government figures that have been cited to prove that autism is rapidly increasing in the United States are not reliable and thus unsuitable for tracking the disorder, according to a study published in the July issue of Pediatrics, the journal of the American Academy of Pediatrics.

The US Department of Education figures, based on the number of children receiving special education assistance, have internal ''anomalies" and are in conflict with a number of studies on the prevalence of the condition, said the report from Portland State University in Oregon.

''Basically we don't know what the true prevalence of autism is in this country," the study's author, physician James Laidler, said in an interview. ''The problem with the data is that it may be including kids who have problems other than autism -- a less severe degree than was included even . . . a year or five years ago -- and it has some internal inconsistencies."

''That said, there may still be an autism epidemic in the United States," but the figures most widely used to demonstrate that are not valid, Laidler said.

The government figures estimate that autism as recorded in the US public school population went from 5,415 cases in 1991-1992 to 118,602 in 2001-2002.

One figure used by the Autism Society of America and others is that about one out of every 250 babies in the United States is born with the disability. It usually appears in the first three years of childhood, permanently impairing development of those areas of the brain that control verbal and nonverbal communication as well as social interaction.

Its causes have not been determined, though several different theories have been suggested. Some have placed blame on childhood vaccines containing the preservative thimerosal, an organic compound that is 49 percent mercury and is no longer used in such vaccines in the United States; The Institute of Medicine, an independent body that advises the federal government, said this year there is no evidence of any link between vaccines and autism.

The Department of Education figures ''are at odds with studies of autism prevalence, largely because the criteria used by the school districts to categorize children as autistic are neither rigorous nor consistent," according to the Oregon study.

''They are inconsistent over time, as are the medical criteria, and are inconsistent from region to region (and thus) not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need," it said. Right-click here to download pictures. To help protect your privacy, Outlook prevented automatic download of this picture from the Internet.

Editors note: what a great use of time. Now we are back to proving there is an autism epidemic. Maybe it is just me, but every where I go – to the grocery store, amusement parks, playgrounds, and camps -- I can see more autistic children than over the past five years. In this editor’s opinion, time would be better spent looking for the cause, treatment and cure, not disputing there is a need for help for these children and their families.


Article C: Federal Action Alert: H.R. 534 & S. 345 Restrict the Rights of Vaccine Injury Claimants!

From the A-CHAMP Action Center

Urgent Action is needed to stop H.R. 534 and S. 354! Ask your Congressman to oppose H.R. 534.

Ask your Senator to oppose and S. 354.

If you thought Senate Bill 3 threatened your rights then you should be concerned about H.R. 534 and S. 354 Why is this urgent? – Your Congressperson will be voting soon on H.R. 534.

Use A-CHAMP’s web site to tell your representative how you feel about this attempt by the Federal government to take away your civil rights.

To Send a message to your Congressperson and Senators click here: Why do we oppose H.R. 534 and S. 354?: The federally-run Vaccine Injury Compensation Program (VICP) does not stop most vaccine-injury cases from ending up in the traditional civil justice system. Bringing a lawsuit in a court of law with a jury is the traditional legal option that gives vaccine injury claimants leverage.

If enacted into law H.R. 534 and S. 354 would restrict the rights of vaccine claimants in our state courts: • Non-economic damages (“pain and suffering”) would be limited arbitrarily to $250,000 regardless of the severity of the injury, regardless of the number of defendants responsible for the injury. For children non-economic damages are a major source of compensation because children do not have lost wages.

• Punitive damages would be severely restricted.

• Statute of limitations would radically reduced for children, contrary to the time honored traditional principles of American law that have protected minors.

• Future damages greater than $50,000 would have to be paid periodically. Even if a jury finds that a severe injury, like many vaccine injuries, warrant significant future damages the responsible parties or their insurance companies would keep the money, earn interest on it, and pay it out a little at a time.

• This Federal law would preempt or override the laws of our States. Once again, some of our Federal legislators are trying to take over the state’s traditional role of protecting children and consumers. At the same time state laws that protect pharmaceutical companies and other parties responsible for vaccine and other health care injuries would not be disturbed.

H.R. 534 and S. 354, a so-called “medical malpractice” bill restricts the rights of parents and their children to hold vaccine manufacturers accountable—even those children afflicted by autism and other neurological disorders. The sweeping provisions of the bills specifically protect vaccine manufacturers, drug and device companies, HMOs, and insurance companies. All the liability protections in H.R. 534 and S. 354 extend to any “healthcare lawsuit,” which is defined to mean “any health care liability claim concerning the provision of health care goods or services affecting interstate commerce, or any health care liability action… against… the manufacturer, distributor, supplier, marketer, promoter, or seller of a medical product, regardless of the theory of liability on which the claim is based…"

To Put It Plainly H.R. 534 and S. 354 Are Unfair To Parents And Children Who Seek Just Compensation For Vaccine Injury Claims! Please take a moment to send a message on behalf of vaccine injured children.

Click here to ask your elected officials to protect the rights of vaccine injured children!

http://capwiz.com/a-champ/mail/oneclick_compose/?alertid=7813356

A-CHAMP is a national, non-partisan political action committee formed by parents in support of children with neurodevelopmental and communication disorders. We are dedicated to advancing public policy issues affecting our children, protecting their human and civil rights, educating the public and media, supporting candidates sharing our goals in state and federal elections, and holding accountable those in government who do not act in the best interest of our children.


Article D: After dramatic increase, what does the future hold?

By Anita Manning, USA TODAY

Most experts agree that autism has been increasing since the early 1990s, although exact numbers are hard to come by.

The Centers for Disease Control and Prevention say several studies that include autism and related disorders estimate that 2 to 6 children in 1,000 have autism spectrum disorders. (Related story: Autism, mistrust on the rise)

The California Department of Developmental Services, which tracks the number of people who seek services from the state because of developmental disabilities, has seen a dramatic increase in autism cases, from 4,911 in August 1993 to 27,312 in April 2005.

The prevalence rose in California from 7.5 in 10,000 for children born from 1983 to 1985 to 20.2 cases for those born a decade later.

Department spokesman Paul Verke says that, in the past two years, the rate of increase appears to be leveling off at about 800 new cases a quarter.

The next quarterly update will be out later this month. Verke says 80% of the people with autism are under age 18, and 87% are living at home.

States need to prepare to serve a large adult population with special needs, he says.

"In two or three years' time, we're going to have another 5,000 teenagers with autism, and at what point will they go to live in the community?" he asks.

" California is the canary in the coal mine."


4.            Vaccine News

Article A: A Mystery Behind Autism’s Rise

By Rick Holmes / Local view
Sunday, July 10, 2005

Is there any illness quite as heart-breaking as autism? One day your toddler is full of energy and wonder, lighting up the room with a smile that speaks nothing but good. Then suddenly the light goes dim, detachment replaces wonder and the noisy toddler gets silent or prone to random upsets.

     And are there any medical controversies as distressing as the raging battle over what and who is to blame for a dramatic increase in autism?

     Autism was first diagnosed as a neurological disorder in 1943, but it was rare until the 1990s, when cases began to multiply. There is disagreement about this -- there's disagreement about almost everything in this controversy -- from those who argue autism has always been there, it just wasn't diagnosed. But most longtime preschool teachers and pediatricians will tell you the surge of developmental and attention-related disorders isn't just their imagination.

     What's behind the outbreak? Circumstantial evidence points to thimerosal, a mercury-based ingredient in many childhood vaccines. Autism cases increased after U.S. health officials began requiring more vaccinations, dramatically increasing kids' exposure to thimerosal. Many parents of autistic children say the symptoms appeared within days or weeks of multiple vaccinations. Mercury has been linked to lots of neurological disorders, and some autistic children show high levels of mercury.

     That's more than enough evidence to convince thousands of parents of autistic children. Grandparents have been convinced as well, including Rep. Dan Burton, R-Ind., who held hearings on the issue.

     "My grandson received nine shots in one day, seven of which contained thimerosal, which is 50 percent mercury," Burton said, "and he became autistic a short time later."

     But circumstantial evidence isn't scientific evidence. Just because autism followed exposure to thimerosal doesn't mean it was caused by it.

     Scientific evidence, say government officials, finds no connection between thimerosal and autism. The Centers for Disease Control, Food and Drug Administration, the World Health Organization and the American Academy of Pediatrics have all concluded there is no link.

     Five major studies have cleared the additive, and scientists are starting to resent the resistance to those conclusions coming from the parents of autistic children.

     "It's really terrifying, the scientific illiteracy that supports these suspicions," Dr. Marie McCormack, who chaired an Institute of Medicine panel that cleared thimerosal, told The New York Times.

     Further fueling those suspicions are the cozy relationships between big pharmaceutical companies and bureaucrats and politicians in Washington. In a recent article in Rolling Stone, lawyer and environmentalist Robert F. Kennedy Jr. accuses the FDA and the drug companies of holding secret meetings to cover up evidence of links between thimerosal and autism.

     Senate Majority Leader Bill Frist, who Kennedy says has received $873,000 in campaign contributions from drug companies, has repeatedly tried to immunize vaccine-makers from liability from the 4,800 lawsuits filed by parents of autistic children.

     But if the parents' suspicions are understandable, so are the concerns of the government and its scientists. If fearful parents don't get their children vaccinated, we could see new epidemics of diseases that have long been under control. Some parents are also putting their children through dangerous and discredited therapies intended to cure their autism by removing mercury from their systems.

     Some say the dispute may be resolved by time. Thimerosal was removed from most vaccines in 2003 and the children vaccinated since then are now coming into the age when the symptoms of autism and its precursors first appear. If the autism rate starts to fall, all will be relieved, but in European nations that removed thimerosal from vaccines ahead of the U.S., the autism rate keeps going up.

     I know just enough about this topic to be thoroughly confused, but it doesn't take an expert to see the larger problem. Ten years ago, one child in 2,500 developed autism. Today that number is 1 in 166. If thimerosal isn't the culprit, scientists and regulators had better get busy figuring out what is.

Rick Holmes' column appears on Sundays. He can be reached by e-mail at rholmes@cnc.com.

Article B: Deadly Immunity

Robert F. Kennedy Jr. investigates the government cover-up of a mercury/autism scandal
By ROBERT F. KENNEDY JR.

In June 2000, a group of top government scientists and health officials gathered for a meeting at the isolated Simpsonwood conference center in Norcross, Georgia. Convened by the Centers for Disease Control and Prevention, the meeting was held at this Methodist retreat center, nestled in wooded farmland next to the Chattahoochee River, to ensure complete secrecy. The agency had issued no public announcement of the session -- only private invitations to fifty-two attendees. There were high-level officials from the CDC and the Food and Drug Administration, the top vaccine specialist from the World Health Organization in Geneva and representatives of every major vaccine manufacturer, including GlaxoSmithKline, Merck, Wyeth and Aventis Pasteur. All of the scientific data under discussion, CDC officials repeatedly reminded the participants, was strictly "embargoed." There would be no making photocopies of documents, no taking papers with them when they left.

The federal officials and industry representatives had assembled to discuss a disturbing new study that raised alarming questions about the safety of a host of common childhood vaccines administered to infants and young children. According to a CDC epidemiologist named Tom Verstraeten, who had analyzed the agency's massive database containing the medical records of 100,000 children, a mercury-based preservative in the vaccines -- thimerosal -- appeared to be responsible for a dramatic increase in autism and a host of other neurological disorders among children. "I was actually stunned by what I saw," Verstraeten told those assembled at Simpsonwood, citing the staggering number of earlier studies that indicate a link between thimerosal and speech delays, attention-deficit disorder, hyperactivity and autism. Since 1991, when the CDC and the FDA had recommended that three additional vaccines laced with the preservative be given to extremely young infants -- in one case, within hours of birth -- the estimated number of cases of autism had increased fifteenfold, from one in every 2,500 children to one in 166 children.

Even for scientists and doctors accustomed to confronting issues of life and death, the findings were frightening. "You can play with this all you want," Dr. Bill Weil, a consultant for the American Academy of Pediatrics, told the group. The results "are statistically significant." Dr. Richard Johnston, an immunologist and pediatrician from the University of Colorado whose grandson had been born early on the morning of the meeting's first day, was even more alarmed. "My gut feeling?" he said. "Forgive this personal comment -- I do not want my grandson to get a thimerosal-containing vaccine until we know better what is going on."

But instead of taking immediate steps to alert the public and rid the vaccine supply of thimerosal, the officials and executives at Simpsonwood spent most of the next two days discussing how to cover up the damaging data. According to transcripts obtained under the Freedom of Information Act, many at the meeting were concerned about how the damaging revelations about thimerosal would affect the vaccine industry's bottom line. "We are in a bad position from the standpoint of defending any lawsuits," said Dr. Robert Brent, a pediatrician at the Alfred I. duPont Hospital for Children in Delaware. "This will be a resource to our very busy plaintiff attorneys in this country." Dr. Bob Chen, head of vaccine safety for the CDC, expressed relief that "given the sensitivity of the information, we have been able to keep it out of the hands of, let's say, less responsible hands." Dr. John Clements, vaccines adviser at the World Health Organization, declared flatly that the study "should not have been done at all" and warned that the results "will be taken by others and will be used in ways beyond the control of this group. The research results have to be handled."

In fact, the government has proved to be far more adept at handling the damage than at protecting children's health. The CDC paid the Institute of Medicine to conduct a new study to whitewash the risks of thimerosal, ordering researchers to "rule out" the chemical's link to autism. It withheld Verstraeten's findings, even though they had been slated for immediate publication, and told other scientists that his original data had been "lost" and could not be replicated. And to thwart the Freedom of Information Act, it handed its giant database of vaccine records over to a private company, declaring it off-limits to researchers. By the time Verstraeten finally published his study in 2003, he had gone to work for GlaxoSmithKline and reworked his data to bury the link between thimerosal and autism.

Vaccine manufacturers had already begun to phase thimerosal out of injections given to American infants -- but they continued to sell off their mercury-based supplies of vaccines until last year. The CDC and FDA gave them a hand, buying up the tainted vaccines for export to developing countries and allowing drug companies to continue using the preservative in some American vaccines -- including several pediatric flu shots as well as tetanus boosters routinely given to eleven-year-olds.

The drug companies are also getting help from powerful lawmakers in Washington. Senate Majority Leader Bill Frist, who has received $873,000 in contributions from the pharmaceutical industry, has been working to immunize vaccine makers from liability in 4,200 lawsuits that have been filed by the parents of injured children. On five separate occasions, Frist has tried to seal all of the government's vaccine-related documents -- including the Simpsonwood transcripts -- and shield Eli Lilly, the developer of thimerosal, from subpoenas. In 2002, the day after Frist quietly slipped a rider known as the "Eli Lilly Protection Act" into a homeland security bill, the company contributed $10,000 to his campaign and bought 5,000 copies of his book on bioterrorism. The measure was repealed by Congress in 2003 -- but earlier this year, Frist slipped another provision into an anti-terrorism bill that would deny compensation to children suffering from vaccine-related brain disorders. "The lawsuits are of such magnitude that they could put vaccine producers out of business and limit our capacity to deal with a biological attack by terrorists," says Andy Olsen, a legislative assistant to Frist.

Even many conservatives are shocked by the government's effort to cover up the dangers of thimerosal. Rep. Dan Burton, a Republican from Indiana, oversaw a three-year investigation of thimerosal after his grandson was diagnosed with autism. "Thimerosal used as a preservative in vaccines is directly related to the autism epidemic," his House Government Reform Committee concluded in its final report. "This epidemic in all probability may have been prevented or curtailed had the FDA not been asleep at the switch regarding a lack of safety data regarding injected thimerosal, a known neurotoxin." The FDA and other public-health agencies failed to act, the committee added, out of "institutional malfeasance for self protection" and "misplaced protectionism of the pharmaceutical industry."

The story of how government health agencies colluded with Big Pharma to hide the risks of thimerosal from the public is a chilling case study of institutional arrogance, power and greed. I was drawn into the controversy only reluctantly. As an attorney and environmentalist who has spent years working on issues of mercury toxicity, I frequently met mothers of autistic children who were absolutely convinced that their kids had been injured by vaccines. Privately, I was skeptical.

I doubted that autism could be blamed on a single source, and I certainly understood the government's need to reassure parents that vaccinations are safe; the eradication of deadly childhood diseases depends on it. I tended to agree with skeptics like Rep. Henry Waxman, a Democrat from California, who criticized his colleagues on the House Government Reform Committee for leaping to conclusions about autism and vaccinations. "Why should we scare people about immunization," Waxman pointed out at one hearing, "until we know the facts?"

It was only after reading the Simpsonwood transcripts, studying the leading scientific research and talking with many of the nation's pre-eminent authorities on mercury that I became convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real. Five of my own children are members of the Thimerosal Generation -- those born between 1989 and 2003 -- who received heavy doses of mercury from vaccines. "The elementary grades are overwhelmed with children who have symptoms of neurological or immune-system damage," Patti White, a school nurse, told the House Government Reform Committee in 1999. "Vaccines are supposed to be making us healthier; however, in twenty-five years of nursing I have never seen so many damaged, sick kids. Something very, very wrong is happening to our children."

More than 500,000 kids currently suffer from autism, and pediatricians diagnose more than 40,000 new cases every year. The disease was unknown until 1943, when it was identified and diagnosed among eleven children born in the months after thimerosal was first added to baby vaccines in 1931.

Some skeptics dispute that the rise in autism is caused by thimerosal-tainted vaccinations. They argue that the increase is a result of better diagnosis -- a theory that seems questionable at best, given that most of the new cases of autism are clustered within a single generation of children. "If the epidemic is truly an artifact of poor diagnosis," scoffs Dr. Boyd Haley, one of the world's authorities on mercury toxicity, "then where are all the twenty-year-old autistics?" Other researchers point out that Americans are exposed to a greater cumulative "load" of mercury than ever before, from contaminated fish to dental fillings, and suggest that thimerosal in vaccines may be only part of a much larger problem. It's a concern that certainly deserves far more attention than it has received -- but it overlooks the fact that the mercury concentrations in vaccines dwarf other sources of exposure to our children.

What is most striking is the lengths to which many of the leading detectives have gone to ignore -- and cover up -- the evidence against thimerosal. From the very beginning, the scientific case against the mercury additive has been overwhelming. The preservative, which is used to stem fungi and bacterial growth in vaccines, contains ethylmercury, a potent neurotoxin. Truckloads of studies have shown that mercury tends to accumulate in the brains of primates and other animals after they are injected with vaccines -- and that the developing brains of infants are particularly susceptible. In 1977, a Russian study found that adults exposed to much lower concentrations of ethylmercury than those given to American children still suffered brain damage years later. Russia banned thimerosal from children's vaccines twenty years ago, and Denmark, Austria, Japan, Great Britain and all the Scandinavian countries have since followed suit.

"You couldn't even construct a study that shows thimerosal is safe," says Haley, who heads the chemistry department at the University of Kentucky. "It's just too darn toxic. If you inject thimerosal into an animal, its brain will sicken. If you apply it to living tissue, the cells die. If you put it in a petri dish, the culture dies. Knowing these things, it would be shocking if one could inject it into an infant without causing damage."

Internal documents reveal that Eli Lilly, which first developed thimerosal, knew from the start that its product could cause damage -- and even death -- in both animals and humans. In 1930, the company tested thimerosal by administering it to twenty-two patients with terminal meningitis, all of whom died within weeks of being injected -- a fact Lilly didn't bother to report in its study declaring thimerosal safe. In 1935, researchers at another vaccine manufacturer, Pittman-Moore, warned Lilly that its claims about thimerosal's safety "did not check with ours." Half the dogs Pittman injected with thimerosal-based vaccines became sick, leading researchers there to declare the preservative "unsatisfactory as a serum intended for use on dogs."

In the decades that followed, the evidence against thimerosal continued to mount. During the Second World War, when the Department of Defense used the preservative in vaccines on soldiers, it required Lilly to label it "poison." In 1967, a study in Applied Microbiology found that thimerosal killed mice when added to injected vaccines. Four years later, Lilly's own studies discerned that thimerosal was "toxic to tissue cells" in concentrations as low as one part per million -- 100 times weaker than the concentration in a typical vaccine. Even so, the company continued to promote thimerosal as "nontoxic" and also incorporated it into topical disinfectants. In 1977, ten babies at a Toronto hospital died when an antiseptic preserved with thimerosal was dabbed onto their umbilical cords.

In 1982, the FDA proposed a ban on over-the-counter products that contained thimerosal, and in 1991 the agency considered banning it from animal vaccines. But tragically, that same year, the CDC recommended that infants be injected with a series of mercury-laced vaccines. Newborns would be vaccinated for hepatitis B within twenty-four hours of birth, and two-month-old infants would be immunized for haemophilus influenzae B and diphtheria-tetanus-pertussis.

The drug industry knew the additional vaccines posed a danger. The same year that the CDC approved the new vaccines, Dr. Maurice Hilleman, one of the fathers of Merck's vaccine programs, warned the company that six-month-olds who were administered the shots would suffer dangerous exposure to mercury. He recommended that thimerosal be discontinued, "especially when used on infants and children," noting that the industry knew of nontoxic alternatives. "The best way to go," he added, "is to switch to dispensing the actual vaccines without adding preservatives."

For Merck and other drug companies, however, the obstacle was money. Thimerosal enables the pharmaceutical industry to package vaccines in vials that contain multiple doses, which require additional protection because they are more easily contaminated by multiple needle entries. The larger vials cost half as much to produce as smaller, single-dose vials, making it cheaper for international agencies to distribute them to impoverished regions at risk of epidemics. Faced with this "cost consideration," Merck ignored Hilleman's warnings, and government officials continued to push more and more thimerosal-based vaccines for children. Before 1989, American preschoolers received only three vaccinations -- for polio, diphtheria-tetanus-pertussis and measles-mumps-rubella. A decade later, thanks to federal recommendations, children were receiving a total of twenty-two immunizations by the time they reached first grade.

As the number of vaccines increased, the rate of autism among children exploded. During the 1990s, 40 million children were injected with thimerosal-based vaccines, receiving unprecedented levels of mercury during a period critical for brain development. Despite the well-documented dangers of thimerosal, it appears that no one bothered to add up the cumulative dose of mercury that children would receive from the mandated vaccines. "What took the FDA so long to do the calculations?" Peter Patriarca, director of viral products for the agency, asked in an e-mail to the CDC in 1999. "Why didn't CDC and the advisory bodies do these calculations when they rapidly expanded the childhood immunization schedule?"

But by that time, the damage was done. Infants who received all their vaccines, plus boosters, by the age of six months were being injected with levels of ethylmercury 187 times greater than the EPA's limit for daily exposure to methylmercury, a related neurotoxin. Although the vaccine industry insists that ethylmercury poses little danger because it breaks down rapidly and is removed by the body, several studies -- including one published in April by the National Institutes of Health -- suggest that ethylmercury is actually more toxic to developing brains and stays in the brain longer than methylmercury.

Officials responsible for childhood immunizations insist that the additional vaccines were necessary to protect infants from disease and that thimerosal is still essential in developing nations, which, they often claim, cannot afford the single-dose vials that don't require a preservative. Dr. Paul Offit, one of CDC's top vaccine advisers, told me, "I think if we really have an influenza pandemic -- and certainly we will in the next twenty years, because we always do -- there's no way on God's earth that we immunize 280 million people with single-dose vials. There has to be multidose vials."

But while public-health officials may have been well-intentioned, many of those on the CDC advisory committee who backed the additional vaccines had close ties to the industry. Dr. Sam Katz, the committee's chair, was a paid consultant for most of the major vaccine makers and shares a patent on a measles vaccine with Merck, which also manufactures the hepatitis B vaccine. Dr. Neal Halsey, another committee member, worked as a researcher for the vaccine companies and received honoraria from Abbott Labs for his research on the hepatitis B vaccine.

Indeed, in the tight circle of scientists who work on vaccines, such conflicts of interest are common. Rep. Burton says that the CDC "routinely allows scientists with blatant conflicts of interest to serve on intellectual advisory committees that make recommendations on new vaccines," even though they have "interests in the products and companies for which they are supposed to be providing unbiased oversight." The House Government Reform Committee discovered that four of the eight CDC advisers who approved guidelines for a rotavirus vaccine laced with thimerosal "had financial ties to the pharmaceutical companies that were developing different versions of the vaccine."

Offit, who shares a patent on the vaccine, acknowledged to me that he "would make money" if his vote to approve it eventually leads to a marketable product. But he dismissed my suggestion that a scientist's direct financial stake in CDC approval might bias his judgment. "It provides no conflict for me," he insists. "I have simply been informed by the process, not corrupted by it. When I sat around that table, my sole intent was trying to make recommendations that best benefited the children in this country. It's offensive to say that physicians and public-health people are in the pocket of industry and thus are making decisions that they know are unsafe for children. It's just not the way it works."

Other vaccine scientists and regulators gave me similar assurances. Like Offit, they view themselves as enlightened guardians of children's health, proud of their "partnerships" with pharmaceutical companies, immune to the seductions of personal profit, besieged by irrational activists whose anti-vaccine campaigns are endangering children's health. They are often resentful of questioning. "Science," says Offit, "is best left to scientists."

Still, some government officials were alarmed by the apparent conflicts of interest. In his e-mail to CDC administrators in 1999, Paul Patriarca of the FDA blasted federal regulators for failing to adequately scrutinize the danger posed by the added baby vaccines. "I'm not sure there will be an easy way out of the potential perception that the FDA, CDC and immunization-policy bodies may have been asleep at the switch re: thimerosal until now," Patriarca wrote. The close ties between regulatory officials and the pharmaceutical industry, he added, "will also raise questions about various advisory bodies regarding aggressive recommendations for use" of thimerosal in child vaccines.

If federal regulators and government scientists failed to grasp the potential risks of thimerosal over the years, no one could claim ignorance after the secret meeting at Simpsonwood. But rather than conduct more studies to test the link to autism and other forms of brain damage, the CDC placed politics over science. The agency turned its database on childhood vaccines -- which had been developed largely at taxpayer expense -- over to a private agency, America's Health Insurance Plans, ensuring that it could not be used for additional research. It also instructed the Institute of Medicine, an advisory organization that is part of the National Academy of Sciences, to produce a study debunking the link between thimerosal and brain disorders. The CDC "wants us to declare, well, that these things are pretty safe," Dr. Marie McCormick, who chaired the IOM's Immunization Safety Review Committee, told her fellow researchers when they first met in January 2001. "We are not ever going to come down that [autism] is a true side effect" of thimerosal exposure. According to transcripts of the meeting, the committee's chief staffer, Kathleen Stratton, predicted that the IOM would conclude that the evidence was "inadequate to accept or reject a causal relation" between thimerosal and autism. That, she added, was the result "Walt wants" -- a reference to Dr. Walter Orenstein, director of the National Immunization Program for the CDC.

For those who had devoted their lives to promoting vaccination, the revelations about thimerosal threatened to undermine everything they had worked for. "We've got a dragon by the tail here," said Dr. Michael Kaback, another committee member. "The more negative that [our] presentation is, the less likely people are to use vaccination, immunization -- and we know what the results of that will be. We are kind of caught in a trap. How we work our way out of the trap, I think is the charge."

Even in public, federal officials made it clear that their primary goal in studying thimerosal was to dispel doubts about vaccines. "Four current studies are taking place to rule out the proposed link between autism and thimerosal," Dr. Gordon Douglas, then-director of strategic planning for vaccine research at the National Institutes of Health, assured a Princeton University gathering in May 2001. "In order to undo the harmful effects of research claiming to link the [measles] vaccine to an elevated risk of autism, we need to conduct and publicize additional studies to assure parents of safety." Douglas formerly served as president of vaccinations for Merck, where he ignored warnings about thimerosal's risks.

In May of last year, the Institute of Medicine issued its final report. Its conclusion: There is no proven link between autism and thimerosal in vaccines. Rather than reviewing the large body of literature describing the toxicity of thimerosal, the report relied on four disastrously flawed epidemiological studies examining European countries, where children received much smaller doses of thimerosal than American kids. It also cited a new version of the Verstraeten study, published in the journal Pediatrics, that had been reworked to reduce the link between thimerosal and autism. The new study included children too young to have been diagnosed with autism and overlooked others who showed signs of the disease. The IOM declared the case closed and -- in a startling position for a scientific body -- recommended that no further research be conducted.

The report may have satisfied the CDC, but it convinced no one. Rep. David Weldon, a Republican physician from Florida who serves on the House Government Reform Committee, attacked the Institute of Medicine, saying it relied on a handful of studies that were "fatally flawed" by "poor design" and failed to represent "all the available scientific and medical research." CDC officials are not interested in an honest search for the truth, Weldon told me, because "an association between vaccines and autism would force them to admit that their policies irreparably damaged thousands of children. Who would want to make that conclusion about themselves?"

Under pressure from congress, parents and a few of its own panel members, the Institute of Medicine reluctantly convened a second panel to review the findings of the first. In February, the new panel, composed of different scientists, criticized the earlier panel for its lack of transparency and urged the CDC to make its vaccine database available to the public.

So far, though, only two scientists have managed to gain access. Dr. Mark Geier, president of the Genetics Center of America, and his son, David, spent a year battling to obtain the medical records from the CDC. Since August 2002, when members of Congress pressured the agency to turn over the data, the Geiers have completed six studies that demonstrate a powerful correlation between thimerosal and neurological damage in children. One study, which compares the cumulative dose of mercury received by children born between 1981 and 1985 with those born between 1990 and 1996, found a "very significant relationship" between autism and vaccines. Another study of educational performance found that kids who received higher doses of thimerosal in vaccines were nearly three times as likely to be diagnosed with autism and more than three times as likely to suffer from speech disorders and mental retardation. Another soon-to-be published study shows that autism rates are in decline following the recent elimination of thimerosal from most vaccines.

As the federal government worked to prevent scientists from studying vaccines, others have stepped in to study the link to autism. In April, reporter Dan Olmsted of UPI undertook one of the more interesting studies himself. Searching for children who had not been exposed to mercury in vaccines -- the kind of population that scientists typically use as a "control" in experiments -- Olmsted scoured the Amish of Lancaster County, Pennsylvania, who refuse to immunize their infants. Given the national rate of autism, Olmsted calculated that there should be 130 autistics among the Amish. He found only four. One had been exposed to high levels of mercury from a power plant. The other three -- including one child adopted from outside the Amish community -- had received their vaccines.

At the state level, many officials have also conducted in-depth reviews of thimerosal. While the Institute of Medicine was busy whitewashing the risks, the Iowa legislature was carefully combing through all of the available scientific and biological data. "After three years of review, I became convinced there was sufficient credible research to show a link between mercury and the increased incidences in autism," says state Sen. Ken Veenstra, a Republican who oversaw the investigation. "The fact that Iowa's 700 percent increase in autism began in the 1990s, right after more and more vaccines were added to the children's vaccine schedules, is solid evidence alone." Last year, Iowa became the first state to ban mercury in vaccines, followed by California. Similar bans are now under consideration in thirty-two other states.

But instead of following suit, the FDA continues to allow manufacturers to include thimerosal in scores of over-the-counter medications as well as steroids and injected collagen. Even more alarming, the government continues to ship vaccines preserved with thimerosal to developing countries -- some of which are now experiencing a sudden explosion in autism rates. In China, where the disease was virtually unknown prior to