Showing posts with label vaccines. Show all posts
Showing posts with label vaccines. Show all posts

April 14, 2007

Sneaky Senate

The politics of Autism just gets odder and odder. It seems to be about being able to say that things are being done with out doing anything, and that open conversation is taking place when the conversation is being strictly controlled. The voices that would ask the right questions are not allowed into the room.

From A-CHAMP:

Surprise Senate Hearing on Combating Autism - Community Not Notified

We learned for the first time Thursday that the Senate has scheduled a hearing Tuesday, April 17, 2007 entitled "Combating Autism: Undertaking a Coordinated Response". There was no notice of this hearing to the many autism organizations other than Autism Speaks and possibly ASA. We learned of it only because one of our CAA Watch A-CHAMP District Leaders inadvertently heard of the hearing from a highly placed source.

Many of us have placed calls to Subcommittee Chair Sen. Harkin's staff, including members of our strong Iowa contingent. None of us have had the courtesy of a return phone call.

The list of witnesses is pasted below.

On the second panel are two representatives of Autism Speaks and Dr. Judy Favell, former President of the American Psychological Association, Division 33. Dr. Favell is a behaviorist who received a large Dept of Education grant to research the provision of services to children with autism by interactive video. The program, called "telehealth" involves installing a video camera in one's home so that families may engage in therapy sessions at long distrance by video.

Dr. Favell appears to be closely associated with three for-profit ventures. One is Advoserv (www.advoserv.com), a Florida corporation that provides residential and other services in Florida, Delaware, Maryland and New Jersey. The second is Cnow, billed as committed to being the "nation's premier telehealth solutions provider." (http://www.cnowinc.com/) The third venture is the National Institute of Telehealth, which develops the behavioral treatment plan that is implemented via video. Telehealth and telemedicine research is being funded by NIMH, headed by Dr. Insel, one of the witnesses at the hearing. (http://tinyurl.com/2uzyje)

No stakeholders are participating in this hearing.
Welcome to the BRAVE NEW WORLD of autism.

Senate Committee on Appropriations
Hearing Schedule for the Week of April 13, 2007

For more information, media should contact (202) 224-3904.

Tuesday April 17, 2007
2:00 p.m. Labor, Health and Human Services, and Education SD-124
Agenda: Combating Autism: Undertaking a Coordinated Response

Witnesses: Panel I:
Dr. Julie Gerberding, Director
Centers for Disease Control and Prevention
Atlanta, Georgia
Dr. Thomas R. Insel, Director
National Institute of Mental Health
Bethesda, Maryland

Panel II:
Robert C. Wright
Vice Chairman and Executive Officer
General Electric Foundation
Fairfield, Connecticut
Dr. Judith E. Favell
Chief Executive Officer, AdvoServ
Executive Director, The Celeste Foundation
Mount Dora, Florida
Bradley Whitford
Volunteer Spokesperson
for Autism Speaks Organization
New York, New York

April 7, 2007

What Really Happened When Katie Mentioned Vaccines On Oprah

JB Handley of Generation Resuce is a friend of Katie Wright-Hildebrand and posted an account of her experience on the Oprah Show this week. She said a good deal more about the autism-vaccine connection that was edited out. Here are JB's very frank comments:

REMINDER: There has been a little confusion in the comments section. The following is not my account or opinion... it is JB Handley's.

Katie was told by the producers before the show was filmed that if
she mentioned vaccines she would be off the show.

While taping, the pediatrician made the misstatement about vaccines
and autism (that whole "no connection" reassuring bullshit), and,
during break, Katie appealed directly to Oprah to let her respond,
as you saw on the show.

However, Oprah's response to Katie about "opening the can of worms"
and the audience's applause after what she said was actually based
on a much longer exchange, all of which was edited out of the final
cut of the show.

After the part you heard Katie say, Katie went on to say that the
preservatives in the vaccines made her son sick and that the
combination vaccines and the vaccine schedule were grossly unsafe.

Everyone's favorite pediatrician then jumped in and said that if the
schedule were changed there would epidemics. Katie responded by
saying there already is an epidemic and that our kids are not
disposable so the CDC can perpetuate irrational fears of the measles
and the flu.

I think this highlights a number of things:

- The censorship most media outlets give to this issue is very high.
My personal opinion is that this is due entirely to the power of
pharma advertising and to the fact that the media outlets hear
directly from pharma in advance of these shows and get warned. The
fact that the daughter of NBC's FORMER CEO must be deeply troubling
for pharma because this is going to be one very tough person to shut
up.

- Oprah over-ruled the directive Katie was given because she is
Oprah and appears to have strong moral fiber. If Don Imus is a 10, I
give Oprah a 5, which makes her second-best for national
personalities dealing honestly about our kids, although it is almost
incomprehensible to me that this is Oprah's first show on autism.

- The lame doctor saying "if the schedule were changed there would
be epidemics" has no idea what she is talking about. It is
unbelivable that it is NEVER reported that in the mid-1980s there
were 10 vaccines on the schedule and today its 36. We were not
having massive epidemics in the 1980s and the schedule has more than
tripled due to money and recklessness, with no monitoring system
that could ever catch a delayed-onset condition like autism.

- Katie is a true warrior for her son and all of our kids. She said
so much more than America got to hear.

JB

February 15, 2007

CDC To Have Open Meeting On Thimerosal

Go.

Seriously. Go to the meeting.

From NAA:
CONTROVERSIAL VACCINE PRESERVATIVE TO BE DISCUSSED AT UPCOMING CDC MEETING, SAYS NATIONAL AUTISM ASSOCIATION

Parents and Advocacy Groups request flu shots recommended for pregnant women, infants and children be mercury-free

Nixa, MO – The Advisory Committee on Immunization Practices (ACIP) will meet in two weeks at the CDC in Atlanta. Thimerosal, a controversial mercury-based vaccine preservative still used in flu shots, is scheduled to be discussed on the morning of February 21st.

While thimerosal has been phased out of some vaccines, it is still present in flu shots recommended for pregnant women, infants and young children. Environmental Protection Agency guidelines indicate that the 25 micrograms of mercury contained in flu shots is unsafe for anyone weighing less than 550 pounds.

Earlier this week, the CDC released a report citing 1 in 150 children are now diagnosed with autism—up from 1 in 166 just two years prior. Many parents and scientists believe the increased use of mercury-containing vaccines starting in the late 1980’s has led to the rise in cases.

“Children and fetuses are still being exposed unnecessarily to this neurotoxin,” says father Christian McIlwain of Cary, North Carolina. “With the recently added recommendations that influenza vaccines be given to women during any stage of pregnancy and children from age six months and up, the amount of early-age thimerosal exposure through recommended vaccines has increased drastically in the last two years—it’s simply time for the committee to advise that only thimerosal-free vaccines be used for pregnant women and young children.”

Despite multiple requests by the research group SafeMinds and the National Autism Association, this is the first time ACIP has put thimerosal on the agenda in several years. Advocacy groups were told by the CDC that thimerosal would be discussed at the October 2006 ACIP meeting, but it was never officially assigned.

ACIP consists of 15 experts in fields associated with immunization that have been selected by the Secretary of Health and Human Services to provide advice on immunizations. It develops written recommendations for the routine administration of vaccines to the pediatric and adult populations, and is the only entity in the federal government that makes such recommendations.

Parents are urged to attend the ACIP meeting, or send letters to the committee via e-mail to naa@nationalautism.org

Parents can also register to attend the meeting by visiting www.cdc.gov/nip/acip/dates.htm.

To learn more about autism, visit www.nationalautism.org.

February 4, 2007

Pringle on Ayoub on Thimerosal

David Ayoub MD - Thimerosal Definite Cause Of Autism
By Evelyn Pringle

To what degree of scientific certainty can we prove that current
epidemic of autism was caused by the mercury-based preservative,
thimerosal, in childhood vaccines?

In response to this question, David Ayoub, MD, told Independent
Media TV, ''I can state that the certainty of the science
supporting mercury as a major cause of autism is probably more
overpowering than the science behind any other disease process that
I studied dating back to medical school.''

"I think a disease that effects more individuals than AIDS or
cancer, in previously normal infants and children," he states, "has
created a sense of urgency amongst researchers."

According to Ayoub, "A growing number of experimental,
epidemiological and biochemical research, has unequivocally shown
that mercury is directly linked to the development of autism
spectrum disorders and is significantly toxic to the
gastrointestinal, immunological, metabolic and neurobiological
systems in children."

"The science of causality is known and understood down to the
manner in which mercury impairs the neural pathways of attention,"
he adds, "I really don't see the need for more research to prove
causality." He believes the focus should be "directed towards
methods to remove mercury from the body and repairing those
biochemical systems that are injured by mercury."

Ayoub is the Director of the Prairie Collaborative for
Immunization, an organization that is self-funded, which aids
organizations, journalists, and legislators obtain accurate
information to assist their work. He is also the author of the
report, "Pregnancy and the Myth of Influenza Vaccination-Is it
safe, is it effective, is it necessary? What the CDC documents
reveal."

Vaccines With Thimerosal

When asked what vaccines still contain the mercury-based,
thimerosal, Ayoub said, "The major culprit today is the influenza
vaccine." About 80% of flu vaccines contain as much as 25
micrograms of mercury per dose. Since the EPA has set a limit of
0.1 mcg/kg (1 kg =2.2 lbs), Ayoub warns, everyone who receives the
vaccine will be overdosed.

He explained that in 1999, "the Public Health Service (including
the CDC and FDA), the American Academy of Pediatrics, and vaccine
manufacturers agreed that thimerosal levels in vaccines should be
reduced or eliminated."

However, he adds, "Contradicting its own policy, the CDC then
increased mercury exposure to the fetus and infant by allowing the
inoculation of pregnant women and young infants with the
mercury-containing influenza vaccine."

On May 28, 2004, the Advisory Committee on Immunization Practice of
the CDC released its annual report with recommendations for the
prevention of influenza. The report included pregnant women amongst
those who should receive the flu vaccine, even though the report
noted only a minimal benefit from the vaccine in pregnant women:

"Researchers estimate that an average of 1-2 hospitalizations can
be prevented for every 1,000 pregnant women vaccinated" (1, page 10)

In fact, for the 2003-04 flu season, the CDC reported "only 3 to
14% of those who got vaccinated were protected against the flu." It
seems overly aggressive, Ayoub maintains, for the CDC to recommend
that all pregnant women be vaccinated when, in fact, scientific
data to date shows only marginal benefits and the only documented
benefit seems to be fewer hospitalizations, not fewer morbidities
or mortalities.

The benefit of influenza vaccination during pregnancy becomes even
more questionable when considering the resulting risks to unborn
infants. According to the ACIP, the safety of influenza vaccination
is established by the following research:

One study of influenza vaccination of 2,000 pregnant women
demonstrated no adverse fetal effects associated with influenza
vaccine."

However, according to Ayoub, "In the April 12, 2002 MMWR, this same
statement was followed by the caveat "additional data are needed to
confirm the safety of vaccination during pregnancy." The comment
was then dropped from the CDC's 2004 version of the report, but no
new safety data was cited.

This solitary reference cited to establish influenza vaccine safety
was co-authored by researchers at Boston University in 1973, but
Ayoub advises that, "Upon closer inspection ... the study appears
to have very little to do with influenza vaccine safety, but rather
that of polio vaccination safety during pregnancy."

It is inexplicable, Ayoub says, that the ACIP would cite a paper in
support of its conclusion of influenza vaccine safety while the
Institute of Medicine rejected the same paper on the basis of the
flawed analysis of polio vaccine safety.

Few doctors realize that most flu vaccines contain 25 micrograms of
mercury per dose. Both the EPA and FDA's allowable daily exposure
limits are 0.1 microgram per kg, meaning that recipients of a flu
vaccine must weigh at least 550 pounds to meet federal exposure
guidelines.

Therefore, by injecting the mother, the fetus would receive a dose
of mercury that exceeds the federal limits by several hundred-fold.
Furthermore, Ayoub adds, all federal guidelines are based upon
studies of exposure tolerances in adults, not a fetus.

He questions why the CDC is so certain that ethylmercury can be
safely injected into children or pregnant women, when the FDA and
EPA have stated that ingestion of methylmercury can have harmful
effects on the fetus, with warnings such as:

"some fish and shellfish contain higher levels of mercury that may
harm an unborn baby or young child's developing nervous system. . .
. Therefore, the Food and Drug Administration (FDA) and the
Environmental Protection Agency (EPA) are advising women who may
become pregnant, pregnant women, nursing mothers, and young
children to avoid some types of fish and eat fish and shellfish
that are lower in mercury. . . While it is true that the primary
danger from methylmercury in fish is to the developing nervous
system of the unborn child, it is prudent for nursing mothers and
young children not to eat these fish as well."

More recent studies have detailed the life-long damage of mercury
to the brains of unborn children. For instance, on Feb 28, 2005,
the Associated Press reported, "Lower IQ levels linked to mercury
exposure in the womb costs the United States $8.7 billion a year in
lost earnings potential, according to a study released Monday by
researchers at a New York hospital."

The Mount Sinai Center for Children's Health and the Environment
combined a number of previous studies to determine hundreds of
thousands of babies are born every year with lower IQ associated
with mercury exposure, according to AP.

Lead researcher and pediatician, Leonard Trasande, reports that
annually, between 316,588 and 637,233 infants are born with
umbilical cord blood mecury levels linked to IQ loss.

As an example, Trasande said each year, about 4% of babies are with
blood mercury levels between 7.13 and 15 micrograms per liter. That
level of mercury causes an IQ loss of 1.6 points, the researchers
concluded.

A 1.6 point drop in IQ could cost a person more than $31,000
over a lifetime, the study calculated, due to missed educational
opportunities or jobs.

Manufacturers of the flu vaccine themselves, include package
inserts that admit adequate studies have not been conducted on this
vaccine. For example, the Fluzone insert stated:

"Animal reproduction studies have not been conducted with Influenza
Virus Vaccine. It is not known whether Influenza Virus Vaccine can
cause fetal harm when administered to a pregnant woman or can
affect reproduction capacity."

Considering the rapid growth of autism, and other related
neurodevelopmental disorders, and the number of reports documenting
the causal relationship to mercury-based preservatives, Ayoub
advises, "influenza vaccines should not be administered to pregnant
women, and perhaps other high-risk groups, especially young
children."

Why Would FDA & CDC Approve Mercury-Based Vaccines?

Ayoub believes that the CDC and FDA embrace marginal research and
unsupported policies because of conflicts of interests. It may come
as a surprise to most physicians, he explains, "that the CDC has a
built-in conflict of interest with regards to its dual role in
vaccine policy." One limb of the CDC that oversees vaccine safety
has a budget of approximately $30 million, while the limb that
promotes vaccine usage (ACIP and NIP) has a $1 billion budget, he
says.

The CDC and FDA policy decisions are made through physician
advisory panels whose members often have financial relationships
with the very same pharmaceutical companies that they are supposed
to regulate.

For example, during a congressional hearing on potential conflicts
of interests at the FDA, it was revealed that 60% of the advisory
members who voted to approve the poisonous rotavirus vaccine had
financial ties to the drug companies manufacturing the vaccine. The
committee also found that 50% of the CDC members were tied to the
rotavirus makers.

However, according to Ayoub, the CDC and FDA do not have exclusive
rights in coddling the industry. An investigation of doctors
involved in co-authoring forty-four different Clinical Practice
Guidelines for drug companies found:

85% of guideline authors have some sort of relationships with drug
companies, and they are often not disclosed

38% of respondents said they had served as employees or consultants
for drug companies; 58% received research money

59% had links with drug companies whose medications were considered
in the particular guidelines they authored, almost all cases
predating the guideline creation process

These numbers may be even greater, as only 52% of authors responded

"Most clinicians would be surprised by these revelations which
challenge the blanket trust of a healthcare governance with
uncomfortably close ties to the pharmaceutical industry," Ayoub
says.

Available Treatment For Autism

When asked what treatments are available for autism, Ayoub said
"The buzz these days is chelation," but there is no short answer to
this. Suffice it to say, there are 2 ways to get mercury out of the
body - one is pull it out directly by chelation agents."

The 2 top chelation people in the world are Gary Gordon, MD, and
Rashid Buttar, MD, he adds.

Chelation agents such as DMPS and DTPA, are given orally, by IV,
and recently with transdermal as a cream. According to Ayoub, the
agents essentially bind free blood or loosely bound heavy metal
agents, and eliminate them through stool and urine. They lower the
total body burden and allow for natural redistribution from brain
to blood for further removal. Ayoub claims side effects are
uncommon, and the process is far safer than a vaccine.

The other method of removing mercury from the body is through a
variety of biomedical therapies, all dietary or supplemental, "most
of which act to jumps start the bodies own internal mercury
detoxification pathways," Ayoub explains, but "the science here is
very sophisticated," he added.

However, unfortunately, "many parents read about a diet or
supplement, try one or two therapies on their own and fail," he
says, and that "treatment is very dependent upon the experience of
the health care provider, critically so," he advises.

Why The Constant Denial?

Ayoub was asked why government agencies and the pharmaceutical
industry, are working so hard to keep the truth about the
mercury-autism link hidden. He says it is a long story, but the
main reason is because if they admitted guilt, it would mean the
government agencies, drug companies and medical organizations,
"have taken part in the largest iatrogenic epidemic known to man."

The fallout over admission of causality would be unprecedented,
Ayoub adds. The lost confidence in American medicine would likely
cause people to turn to alternative methods of medicine, and a rise
in deeper investigation might reveal the truth about other
suppressions related to cancer therapy, hypertension Rx, or
Atherosclerosis.

Ayoub told Independent Media, "This is really the tip of the
iceberg and I see a waterfall effect."

December 7, 2006

Injecting Sense in to CAA

Wade Rankin has a good commentary and expounds on Rep. Burton's reaction to CAA:

...Like some of our friends in various organizations that maintained their support of the CAA, Rep. Burton feels this flawed bill is better than none. I respectfully disagree with the distinguished gentleman, but I agree with his major point: this country’s vaccine policy ? and perhaps the nation’s health-care policy as a whole? will not be deemed trustworthy unless all plausible hypotheses are examined...

Read the whole thing.

December 4, 2006

The Age of Autism: What Newsweek Missed

The Age of Autism: What Newsweek missed
By DAN OLMSTED
UPI Senior Editor

WASHINGTON, Nov. 20 (UPI) -- Newsweek's cover story this week is about what happens to autistic kids when they grow up. The magazine does a good job of pointing to funding gaps and the plight of parents who can only imagine what will happen to their kids after they're gone.

But Newsweek fails to confront a key issue, one that bedevils mainstream publications every time they write about autism: Is it really increasing? Or are we just doing a better job of diagnosing the disorder?

Newsweek, without exactly saying it, comes down on the side of better diagnosis. " ... (M)ore sophisticated epidemiology has revealed the true magnitude of the problem," the magazine says. It also suggests the increase coincided with parents banding together "to raise awareness of a once rarely diagnosed, often overlooked disease."

Yet in a sidebar, Thomas Insel, director of the National Institute of Mental Health, says that as a psychiatrist in the 1970s he never saw a single person with autism. "In 1985, curiosity sent him searching; it took several phone calls to find a single patient," the article says.

Does today's "more sophisticated epidemiology" really square with Insel's experience? I don't believe it does; 1985 was hardly the dark ages of medical diagnosis. And autism was described as a distinct disorder more than 40 years before that -- concern already had arisen that it was becoming a trendy diagnosis, handed out too freely.

Yet Insel, obviously well-connected to the medical and psychiatric community, had to mount a virtual search party to find a single one?

The article goes on to say that NIMH is "newly interested in environmental factors that might set off the disorder in patients who are already genetically prone to it."

What does it mean to be "already genetically prone" to autism, yet have it triggered only after exposure to some outside factor? I'm not sure that makes sense. What does make sense is that some children might have a genetic inability to cope with that factor, triggering the "environmental insult" that leads to autism.

If such an exposure increased, it could certainly account for an increase in the autism rate. NIH officials are increasingly blunt about this, even if the media are not. At a recent meeting with a group of parents, according to several participants, the head of one NIH institute said: "There are no epidemic deniers here."

I'm told a second institute director said at another recent meeting that autism is primarily an "environmental" disease. An audience member's suggestion that genes alone explain the current rate was flatly dismissed by this official.

Because it doesn't connect the dots, Newsweek misses the point: We're in an epidemic, which is why the future of this generation is a crisis. The article's whole premise, however, inadvertently suggests the truth: There are now so many kids with autism -- "as many as 500,000 Americans under 21," the magazine says -- that caring for them as adults must be urgently addressed.

If there were already a comparable million-plus adults with the disorder, the issue would have been recognized years ago. To be sure, some autistic adults of all ages have been misdiagnosed over the years as retarded or mentally ill.

But if autism has held steady over the years, it shouldn't be hard to find thousands and thousands of clearly autistic people in their 30s, 40s, 50s -- even their 80s and 90s. The first child in the landmark 1943 study identifying autism, who was known as Donald T., is still alive at age 73. It was the striking uniqueness and novelty of such cases that prompted the study in the first place.

When NIMH's Insel went looking for cases in the 1980s, it seems autism was still pretty rare. It's not anymore -- as Newsweek points out, disorders on the autism "spectrum" now afflict as many as 1 in 166 children. Note: children. Where are the 1 in 166 autistic adults?

Until we stop ignoring the obvious, we're never going to stop this epidemic -- and find new and better treatments for people already afflicted.

And that's the most urgent issue of all.

December 2, 2006

Recovering Children on the Cutting Room Floor

Over the last two years I have heard this story told over and over again by parents. Interviewed by the media about the improvements their children have made using DAN! treatments, but the real story never makes it on the air.

I thought I would share one of these stories.

From Kendra Pettengill:

I just learned a very tough lesson.

When my daughter Keely and I were invited to the DAN conference I also got a call from a TV reporter. He was asked to do a story on Autism by his station, and it was to be big, several minutes worth on two consecutive nights. He wanted to highlight Keely and I and our success story.

He admitted to me he knew nothing about Autism. I sent him a 12 point paper pointing out what I feel are the 12 biggest issues in Autism. I told him straight up that his bosses would never allow him to tell the real story, and the last reporter that did in Texas lost her job. He assured me that they were family owned and he could do any story. I told him that he might be able to tell one of the twelve points, or maybe weave in two of them, but no more than that or it would be confusing, watered down, and wouldn't make the point.

He and a camera man came and spent an entire Saturday at our house. We poured our hearts out to him. I told them every detail of getting the diagnosis, her horrible symptoms, and the prediction of her ending in an institution by the age of 12 or 13. I talked abou how abandoned families are, that no treatments are offered here in Oregon and how we had to go it alone, with help from family only. I told him all about DAN and Keely's horrendous reactions to her vaccines, her near death and then Autism. How we started the GFCF diet and within two weeks she started talking. We then started her ABA program and progress exploded. And he met her, and interviewed her. Both he and the camera man seemed not just shocked by her condition and abilities but she charmed the hell out of them. She was, I can assure you on her A game. I gave them before and after videos as well as her diagnosis including graphic descriptions of her worst behaviors observed during diagnosis.

Dr. Rimland had sent a message that he would do a phone interview with the reporter. The reporter never followed up on that offer, missing a huge opportunity. But the story just aired Wednesday and Thursday nights and Keely and I were not included at all. The reporter apparently ran into the ND crowd in Eugene and gave two nights of fluff stories with people only mildly affected. Despite weeks of advertising this huge piece and two part series titled "THE AUTISM EXPLOSION", the epidemic and xplosion were never even mentioned. Causes, treatment, and especially recovery were not mentioned.

We were sold down the river. He didn't even have the journalistic integrity to tell me we were being left out of the story. Hundreds of people were waiting to see it. I am devastated, but I should have known better. You would not have known what the face of Autism looks like from this fluff. The worst journalism I have seen yet. I have written over 10 letters that friends and family and autism families are sending to KEZI as I cannot send them all in my name.

Keely has worked so hard, she is mainstreamed now in third grade, 100% independent, no pullouts, no aide, making Straight A's. I am so proud of her and how very far she has come. She deserved to be recognized and to help give families hope that recovery is possible and that there are treatments that can make a difference in the outcome of these kids. I cannot believe how ticked off I am.

Here is the information on the station reporter and the two pieces he did.

http://www.kezi.com/content/contentID/15480 (Part 1)

http://www.kezi.com/content/contentID/15492 (Part 2)

KEZI 9 News - Tristan Mcallister

He didn't say anything about Autism. They advertised constantly with this ominous music, "Tune in for our two part special, The Autism Explosion why the huge numbers in Oregon" and then never addressed it. They didn't even say what the numbers are, didn't as why. Just advertised that was the story, then showed two semi-interesting human interest stories.

I found out that he met up with the woman in the first part who is friends with the woman in the 2nd part. Her name is Nan Lester and to many of us in Oregon she is public enemy #1. She is pretty much in the ND camp. She has dictated policy to the local school district and other families are left to live with her view of things or go elsewhere. She interjects herself into anything Autism related in Eugene. She interrupts parents at school meetings and then smooths the ruffled feathers of school officials and tells them that a great job they are doing. I know families in Eugene homeschooling rather than subject their child to the Eugene programs dictated by Nan Lester. [ed. note - in a later email Ms. Pettingill reiterated her opinion of Ms. Lester, but says that her comment that she was public enemy number one, "might have been a little strong".]

The kids in this epidemic are not going to teach art classes or get a drivers license, or get married, nor does anyone have hopes of them being a Senator or President. They put forth a very narrow view of Autism, gave as my own mother said, "Zero information about anything to do with Autism", and left our story of overcoming all the odds and diversity, struggling as a single parent to provide programs for my daughter and having enormous success through biomedical, chelation, and ABA to where we are today, they left our story on the cutting room floor. Hundreds of people were watching to see how they would present Keely and I, and he completely left us out. Apparently causes, treatments, and potential recovery are just too controversial, but fluff is ok.

What a story of hope we could have been to parents not knowing what to do.

If anyone on this list wants to send a little note, send it to kezi@kezi.com.

Thanks everyone
Kendra

December 1, 2006

The Mercury Moms (and Dads) Head Back to Atlanta

From COMED/Mom's Against Mercury/ACHAMP/United Methodists Women:

We're Headed Back To Atlanta!

To Mark the 7 Year Anniversary of the CDC Simpsonwood Meetings, Moms Against Mercury and CoMeD, Ask You to Save the Dates of
June 7th & 8th, 2007!

On June 7th leaders of the Women's Division of the United Methodist Church, an organization a million strong, will gather the faith community at Simpsonwood, to redress the deeds done there, seven years ago. The two day event is known as, "The Truth Is Coming To Light".

In support of "The Truth Is Coming To Light" event, we will be holding the "Simpsonwood Remembered" Rally on June 8, 2007.

To read about the efforts of the United Methodists Women's Division to protect children from mercury containing vaccines, please go to
http://new.gbgm-umc.org/umw/ (scroll down)

Hang on.....more information and details will be available in February 2007 via SAR, EOH Yahoo Board, Moms Against Mercury email list and A-CHAMP email list.

Until then....just remember...save the dates June 7th and 8th!

PLEASE FORWARD THIS MESSAGE TO OTHER BOARDS

November 26, 2006

Kirby on HuffPo: The Other Secret Bush Court?

The Other Secret Bush Court?
David Kirby
The Huffington Post

Next year, a "Special Master" in an obscure Federal court known only to a few Americans will preside over a highly sensitive judicial matter of urgent national importance. The Bush Administration wants to hold the hearings in a sealed courtroom, off limits to the press and public, with stiff "sanctions" for any outsider who attempts to gain unauthorized access to the secretive proceedings within.

Terror trials in faraway Gitmo? Good guess. But these are vaccine trials on New York Avenue, in downtown Washington, at the U.S. Court of Federal Claims.

You may not know it, but there is an official federal "vaccine court," where some 4,750 autism-related cases have been pending for years. Claimants believe the mercury-based vaccine preservative, thimerosal, and/or the MMR vaccine, contributed to their children's autism, and they are seeking compensation from a special vaccine injury fund administered by the federal government.

The long-awaited autism vaccine trial will commence on June 11 in the courtroom of Special Master George Hastings. The plaintiffs and their attorneys have asked for complete transparency in every aspect of the tribunal, including public disclosure of all evidence and unhindered media access to the hearings. The few autism families whose medical records will be scrutinized as legal examples are waiving their right to privacy and confidentiality, so that their stories may finally be told in an open court of law.

But the DOJ (technically, the "defense") has other plans. On November 3rd, the Department wrote to Hastings saying it "would oppose public access to the courtroom and public broadcast of the trial," because such an arrangement. "would pose security and privacy concerns" for those in attendance.

Exactly whose privacy are they trying to protect? It can't be the parents, because they don't want privacy. The only party fretting about privacy is the DOJ itself, and presumably, the vaccine makers. (As for "security" concerns, isn't that why we have court officers?).

The government may call this privacy, but I call it secrecy. In fact, there has been a long and unseemly history of secrecy when it comes to federal data on thimerosal and autism.

And let's face it: People don't hide something unless they have something to hide.

Back in 2002, Health and Human Services lawyers quietly slipped into vaccine court to file a protection order to permanently seal all thimerosal-related documents. They proposed sanctions for any lawyer who shared the secret government information with autism families, the public or the press. All thimerosal data would be banned from use in future civil cases, and any materials already given to plaintiffs would be rounded up by federal agents and destroyed. The motion was withdrawn after appropriate public outcry.

Many of those federal documents pertained to an off-limits database called the Vaccine Safety Datalink (VSD), which tracks the medical records of hundreds of thousands of American children. Lawyers for the families have tried to gain access to the VSD for years, including a 2004 "Motion to Compel" that went nowhere.

In 2005, the Institute of Medicine issued a report slamming the Centers for Disease Control and Prevention, which manages the VSD, for a "lack of transparency" in handling the data. Even more alarming, CDC officials testified that the original datasets they examined had "not been archived in a standard fashion," meaning they were either lost, or destroyed. Take your pick.

If the disappearance of these datasets was intentional, that would be a clear violation of the federal Data Quality Act. No wonder the IOM urged vaccine officials to "seek legal advice" on the status of the missing records.

But those missing datasets could well have been a bonanza to attorneys for the autism parents. Now they are gone.

And, without access to any of the raw data to which government lawyers are privy, the families' cases are woefully, and unconstitutionally, disadvantaged. In what other American court of law are defendants allowed access to evidence that is kept secret from plaintiffs?

Meanwhile, family lawyers have received 216,000 pages of discovery materials, sourced from federal agencies and private companies alike. They might well paint an incriminating portrait of thimerosal's role in autism, and that may be why individuals face a $250,000 penalty for any paper that is leaked.

But some documents have already been leaked, including one published in the Los Angeles Times showing that Merck officials knew of the cumulative and alarmingly high levels of mercury in vaccines way back in 1991, but said nothing about it to anyone.

Are there other incriminating memos from Merck (or Lilly or Glaxo, etc.)? My sources indicate that there are, but we may never get to see them. And now, by barring public access to the trial, we may never get to hear them, either.

If the DOJ has its way, only claimants and their attorneys will be allowed to sit in the courtroom, or receive password-enabled access to a live audio webcast of the trial. The media will be barred, and so will everyone else. And though there will be an official written transcript, such documents are sometimes redacted, or even sealed, after the trial.

As a journalist, I will be subject to "sanctions" if I sit in on a webcast without authorization from the court. In fact, unauthorized access to the proceedings, according to the DOJ proposal, might lead to "termination of the webcast and closing of the courtroom."

What remains unclear is whether journalists will be prosecuted for interviewing families who have access to the webcast, or who attend the trial in person. But if I get arrested for hanging around outside the court with my pen and notepad, don't blame me for trying.

Curiously, a final reason cited for barring reporters and others from vaccine court is that "opening the courtroom to the general public would make it more difficult for claimants themselves to attend." I know plenty of parents who would gladly give up their seat for, say, Wolf Blitzer or Brian Williams, but the DOJ apparently hasn't asked them.

I think it's safe to say that the Bush Administration does not want this trial publicized. That seems curious to me. The entire thimerosal question will likely be left up to just one man: Special Master Hastings. Whether he decides for the parents, or for the DOJ, his ruling will forever be considered within a vacuum, subject to intense criticism from either side, unless he agrees that all thimerosal evidence should at long last be made public.

I hope he rules that his courtroom is not Guantanamo. These parents, and the public at large, deserve no less.

----------

PS: My last post predicted that most autism parents would be voting Democratic this November, without giving proper credit to two members of the House GOP. Dan Burton (R-IN) and Dave Weldon (R-FL) are among the most open minded members when it comes to the mercury-autism hypothesis, and I apologize for the omission.

Meanwhile, Rep. Henry Waxman (D-CA) has been hostile, at best, to the theory. I congratulate Rep. Waxman on his ascendancy to the House Government Reform Committee Chairmanship, and respectfully ask him to read "Evidence of Harm," and, if possible and when he has time, to offer a response on the Huffington Post.

November 13, 2006

From PutChildrenFirst.com

Press Briefing:

Thank you all for your time today. My name is JB Handley. Along with
my wife, Lisa, I am the co-founder of putchildrenfirst, the sponsor
of this survey of over 9,000 Americans on mercury in the flu shot.
Here's a quick test for all of you. We all know household paint is a
bit toxic. Would you rather A, spill some paint on your skin? Or, B,
take that same amount of paint, pop it in a syringe, and mainline it?
If you chose A, as our survey revealed, you are like most Americans.
If you chose B, you're like the FDA, who made it a high priority to
get mercury out of topical products we use on our skin in the 1990s,
but continued to allow mercury to be injected into humans at levels
exceeding any available safety standard. In fact, we don't even have
safety standards for injected mercury, because no one considered
someone would be crazy enough to inject a well-known neurotoxin into
their bloodstream. It's actually the preposterous nature of the
situation we find ourselves in today that contributes to the public's
confusion. I find that the first time I tell people mercury is in
their flu shot, they simply don't believe me.

Our health authorities realized mercury in vaccines was a mistake in
1999 and made a public statement to warn Americans and encourage
manufacturers to change their formulations. Seven years later, we're
still talking about mercury. That's part of the problem. Our survey
showed that almost no one realizes mercury is STILL in over 90% of
this year's flu shot supply. When they find out the truth, more than
three-quarters know to stay away from mercury and even more think
children and pregnant women should avoid it.

The CDC provides a number of answers for why mercury is still used in
vaccines, none of which can be supported with any facts or evidence.
They will characterize Thimerosal's toxicity as theoretical when in
fact there is nothing theoretical about mercury's dangers. They will
tell you ethyl-mercury, the kind used in Thimerosal, is less toxic.
There is no data to support this and in fact a recent biological
study disproved this completely. They will tell you that the flu can
kill which should certainly trump any danger posed by mercury. Yet,
they fail to mention their own recent admission in an October 2006
study in the Journal of the American Medical Association where four
CDC authors write: "It is also important to note that there is scant
data on the efficacy and effectiveness of influenza vaccine in young
children." And a British Medical Journal article the same month,
October 2006, noted "Evidence from systematic reviews shows that
[flu vaccines] have little or no effect on the effects measured." If
a company sold a product that didn't work and left behind a
neurotoxin they would already be bankrupt.

Anytime Thimerosal is mentioned, autism is brought up. We are not
here to talk about autism today. We are here to tell you that
Americans do not want mercury in their shots but few know it's there.
The CDC tries to make an argument that because they believe, through
their research, that Thimerosal is not responsible for the autism
epidemic, that makes Thimerosal safe. That is one high threshold for
safety. Interestingly, CDC never mentions that in the 2003 study they
authored in Pediatrics, they did find a correlation between
Thimerosal and both "tics" and "language delay." So, here's another
test for you. You bring your child in for a flu shot. The Doctor
tells you this shot has mercury, and that CDC found shots with
mercury lead to tics and language delay. What do you do?

The CDC wants you, the journalists, to report on the dire need for
all Americans to get a flu shot. In 2004, at a Vaccine Summit, the
British Medical Journal wrote the following, in criticizing what they
called the CDC's "marketing of fear"
"Glen Nowak, associate director for communications at the NIP, spoke
on using the media to boost demand for the vaccine. One step of
a "Seven-Step `Recipe' for Generating Interest in, and Demand for,
Flu Vaccination" occurs when "medical experts and public health
authorities publicly...state concern and alarm (and predict dire
outcomes) - and urge influenza vaccination"

My four year old son suffered an adverse reaction to a mercury
containing flu shot. That's why I'm here talking to you. His symptoms
included, and I quote, "brain damage, incoordination, seizures,
inability to speak and problems of his nervous and digestive system."
Those were my son's symptoms, but that quote is not from his medical
records. It's from the CDC's own website, discussing the harmful side-
effects of mercury, where they go on to warn all Americans to "keep
all mercury-containing medicines away from children."

Our survey proves that Americans understand this. Why doesn't the CDC?

November 1, 2006

Rep. Weldon's Vaccine Safety Statement from July

Statement of Rep. Dave Weldon, M.D. (Fl-15)
July 26, 2006

Federal agencies charged with overseeing vaccine safety research have failed. They have failed to provide sufficient resources for vaccine safety research. They have failed to fund extramural research. And, they have failed to free themselves from conflicts of interest that serve to undermine public confidence in the safety of vaccines.

The American public deserves better and increasingly parents and the public at large are demanding better.

I'm a physician. I understand the importance of immunizations in protection children and the public at large from infectious disease. As a society we benefit from vaccines and as such it is important that we guard carefully vaccine safety research to ensure its objectivity.

When I first began working on this issue about seven years ago, I was shocked at the dearth of resources dedicated to vaccine safety research. The federal government dedicates far more resources to promoting the immunizations than in safety evaluations. Most vaccine safety resources are dedicated to considering short-term, or acute adverse reactions, while very few resources are dedicated to considering potential longer-term or chronic adverse reactions.

When I first tasked my staff with investigating this issue we got a lot of confused responses from federal agencies. The FDA told us to check in with the CDC, saying CDC did most of the vaccine safety research. The CDC referred us over to the NIH. Then, the NIH referred us back to the CDC. It was apparent to me that there is little coordination and very few resources dedicated to vaccine safety research.

Ironically, 20 years ago Congress established The National Vaccine Program Office (NVPO) and charged NVPO with coordinating vaccine safety research. Along with safety, however, NVPO was charged with coordinating vaccine development, vaccine promotion and vaccine supply - the very conflicts that plague the CDC, and to some extent the NIH. It is no wonder that vaccine safety has been on the back burner at
NVPO for all of these years - NVPO has conflicting missions and higher priorities. NVPO is now swamped with Avian Flu preparedness and is not an appropriate place for this.

I agree with the prestigious journal Nature when in January of this year stated: "there is a strong case for a well-resourced independent agency that commends the trust of both the government and the public." That is why we are here today.

Several issues relating to vaccine safety have persisted for years. The response from public health agencies has been largely defensive from the outset and the studies plagued by conflicts of interest. Legitimate questions persist regarding the possible association between the mercury-based preservative, thimerosal, and the childhood epidemic of neurodevelopmental disorders (NDDs), including autism. There are unresolved questions about the MMR vaccine that arose in 1998 that should be fully investigated. Gardasil, the HPV vaccine was just recommended by the CDC. Vaccine manufactures have dozens of new vaccines in the pipeline. The failure of public health officials to make this a priority and to free this research from conflicts of interest will only serve to further erode public confidence at a time
when we should be working to build public confidence. It is incumbent upon us to fully investigate these issues in an independent manner.

The Senate is turning its attention to FDA reform. Unfortunately, the legislation moving through the Senate HELP Committee is deafeningly silent when it comes to improving vaccine safety research. This is particularly ironic given that federal and state governments do not mandate drugs in order to enter schools or obtain employment, yet, as a society we do impose such mandates with regard to vaccination. This is all the more reason to be particularly mindful of issues related to vaccine safety.

In his book on the subject of immunizations, Dr. Graham Wilson, the former Director of the Public Health and Laboratory Service for England and Wales, warned the public health community of the need to remain ever vigilant when it comes to vaccine safety. In 1967 he warned:

"Over confidence must at all costs be avoided… It is for us, and for those who come after us, to see that the sword which vaccines and antisera have put into our hands is never allowed to tarnish through over-confidence, negligence, carelessness, or want of foresight on our part."

Federal agencies in the U.S. charged with carrying out vaccine safety have failed to adequately heed this warning. If we continue down the current path, confidence in vaccines will continue to erode and this "sword" against disease will be tarnished.

Today, we rarely come face to face with vaccine preventable disease, but we are at risk of seeing vaccine preventable diseases rear their ugly head. Why? Because, we are confronted with the side effects of vaccines, adverse reactions and perceived adverse reactions - many of them mild, but some of them severe. This is the new and increasing challenge that we face in fighting disease.

There are two approaches we can take in the face of this new challenge.

First we can downplay the existence of adverse reactions or otherwise pretend they do not exist all-the-while such questions persists unanswered and continue to fester. Such approaches have failed to work in the past and over the long-run they can do irreparable harm to public confidence in vaccines, breaking the trust with the public and leading to the rise of infectious disease.

Conversely, we can take such hypotheses and evaluate them in an independent and objective manner. That is what we are proposing here today. Our bill corrects past mistakes. Presently, vaccine safety research is an in-house function conducted predominantly by the CDC - the very agency that makes vaccine recommendations and promotes their uptake. This should not be.

We have seen fit to eliminate such conflicts across federal agencies.

o At the National Institutes of Health we recognized the inherent conflicts of interest and created the Office of Human Subjects Protection as a separate office within HHS.

o When we established the Superfund program, Congress established the Agency for Toxic Substances and Disease Registry (ATSDR) - Superfund's science evaluation office - as a separate agency in another department. Safety evaluation is independent of all other decisions.

o After the Space Shuttle Columbia accident, the Gehman Commission recommended that decisions about shuttle safety and launching the shuttle should be completely separate - we adopted this recommendation.

What does our bill do? It:
o Creates a new agency of vaccine safety that reports directly to the Secretary of HHS.
o Vaccine safety research is conducted in a manner that is
completely independent of any and all other vaccine-related decisions.
o Establishes a scientific review panel, similar to NIH's study sections, to evaluate the scientific merits of investigator-initiated research as the Institute of Medicine has recommended.
o Establishes a balanced 18 Member Advisory Committee to formulate a safety research agenda and to prioritize research approve by the scientific study group. Committee Includes:
o 2 vaccine industry reps
o A pediatrician
o An immunologist
o A toxicologist
o An infectious disease expert
o A geneticist
o Not less than 1/3rd of the members of the Committee have a vaccine-related injury or injured child.

Finally, as you may know the CDC has acknowledged this internal conflict. Last year, Dr. Gerberding moved the CDC's Immunization Safety Office out from under the National Immunization Program (NIP), however vaccines safety remains within the CDC. While I appreciate this initiative, and I understand her limitations in not being able to move vaccine safety outside of her agency, vaccine safety research remains woefully short of the degree of independence and funding commitment that is needed to garner wide public support and acceptance.

If government-funded vaccine safety research is to be broadly accepted, we must eliminate all real and perceived conflicts of interest. Otherwise, we will fail to achieve the level of acceptance that is necessary to restore, build, and secure public confidence over the long-run. A vaccine safety program housed anywhere within the CDC fails to achieve this independence.

We will create a separate and wholly independent office for vaccine safety research. The question that we face at present is:

'Will we create this office now in a proactive manner before public confidence further erodes, or will we do it later in reaction to growing loss of public confidence in the hope of restoring lost trust.

October 28, 2006

BMJ: Influenza Vaccine Programs May Be Pointless

Article in BMJ discounts the usefulness of the flu vaccine. Here is the BMJ article preceeded by Medical News Today's summary of it:

Influenza Vaccine Programs May Be Pointless
Main Category: Flu / SARS News
Article Date: 28 Oct 2006 - 0:00am (PDT)
Written by: Christian Nordqvist
Editor: Medical News Today

Influenza vaccination programs, which cost nations millions of dollars every year, could be a waste of time and money, says Dr. Tom Jefferson, Cochrane Vaccines Field, Rome, Italy. Jefferson says he hopes his findings will make North American and European taxpayers wonder whether the effort and expense are justified.

You can read about his findings in The British Medical Journal (BMJ), October 28.

In this study, Jefferson examined all published papers worldwide that reported on the effects of inactivated vaccines (vaccines with dead viruses). In other words, he studied the reviews of all studies. He concluded that flu shot campaigns have either no effect, or a very negligible effect, on the number of hospitalizations, work/school time lost, complications from flu, or death from flu.

Jefferson said "I looked at the evidence described by systematic reviews and confronted it with policy and I found that there is a massive gap. Almost none of the benefits that these policy documents list are actually given by inactivated vaccines or, if they are, they are given in slighter measure." He said he is not sure why this is so. He suggested it could be a result of inadequate surveillance systems, and/or diagnosing too many influenza-like respiratory illnesses as flu (when they are not). He added that "In most surveillance systems, you actually have an almost year-round epidemic which, in fact, is not influenza. It's caused by other agents." He criticized many of the studies he looked through, saying they were weak.

According to official figures (CDC), approximately 200,000 Americans get flu so badly each year that they have to be hospitalized - about 36,000 people die each year as a result of catching flu in the USA.

Jefferson said he was surprised to see such a large gap between vaccination campaign policy and evidence of its effectiveness.

"Influenza vaccination: policy versus evidence"
Tom Jefferson
BMJ 2006;333:912-915 (28 October), doi:10.1136/bmj.38995.531701.80



The BMJ article:

Public health

Influenza vaccination: policy versus evidence
Tom Jefferson, coordinator1

1 Cochrane Vaccines Field, Anguillara Sabazia, Roma 00061, Italy jefferson.tom@gmail.com

Each year enormous effort goes into producing influenza vaccines for that specific year and delivering them to appropriate sections of the population. Is this effort justified?

Viral infections of the respiratory tract impose a high burden on society. In the last half of the 20th century, efforts to prevent or minimise their impact centred on the use of influenza vaccines. Each year enormous effort goes into producing that year's vaccine and delivering it to appropriate sections of the population. Here, I will discuss policies on the use of inactivated vaccines for seasonal influenza; the evidence for their efficacy, effectiveness, and safety ("effects"); and possible reasons for the gap between policy and evidence.

Policies

Every vaccination campaign has stated aims against which its effects must be measured. The US Advisory Committee on Immunisation Practices produces a regularly updated rationale for vaccination against influenza.1 The current version identifies 11 categories of patients at high risk of complications from influenza (box).

The rationale rests on the heavy burden that influenza imposes on the population and the benefits of vaccination. For example, reductions in cases, admissions to hospital, mortality of elderly people in families with children, contacts with healthcare professionals, antibiotic prescriptions, and absenteeism for children and household contacts are the main arguments for extending vaccination to healthy children aged 6-23 months in the United States.2 Canada introduced a similar policy in 2004.3 Less comprehensive policies recommending vaccination for all people aged 60 or 65 and over are in place in 40 of 51 developed or rapidly developing countries.4 On the basis of single studies, the World Health Organization estimates that "vaccination of the elderly reduces the risk of serious complications or of death by 70-85%."5 Given the global nature of these recommendations, what type of evidence should we expect to support them and what does available evidence tell us?4

Which evidence?

When considering the best evidence for vaccination we must take into account the unique epidemiological features of influenza viruses and the rationale for immunisation. The incidence and circulation of seasonal influenza and other respiratory viruses vary greatly each year, each season, and even in each setting. A systematic review of the incidence of influenza in people up to 19 years' old reported a seasonal variability of 0-46%; during a five year period the average incidence was 4.6% in this age group. During a period of 25 years the incidence was 9.5% in children under 5.6 Because of this variability and lack of carryover protection from one year's vaccine to the next,7 especially if the virus changes its antigenic configuration, single studies reporting data from one or two seasons are difficult to interpret. Single studies are also not reliable sources for generalising and forecasting the effects of vaccines, especially when numbers are small. They introduce further instability into already problematic forecasting. Additional limitations to our forecasting ability are imposed by our use (and misuse) of studies assessing the effects of influenza vaccines. Although the effect assessed depends on the aims of the particular campaign, most concentrate on serious effects (such as pneumonia or death) and person to person transmission (table 1). Field efficacy studies are only relevant when viral circulation is high, but no one can forecast with precision the impact on next year's influenza.

April 5, 2006

AJC: Autism Controversy Eats at Credibility of CDC

Autism controversy eats at credibility of CDC
By ALISON YOUNG
The Atlanta Journal-Constitution
Published on: 04/06/06

The Centers for Disease Control and Prevention, rarely the subject of public controversy, is facing an emerging credibility crisis on the emotional issue of whether old-style vaccines containing a mercury preservative caused autism in thousands of children.

The agency is being accused of cover-ups and scientific manipulations by a vocal group of autism advocates and is facing questions from some high-profile members of Congress.

As the debate and controversy increasingly finds its way into pediatricians' offices, average parents of healthy children are questioning whether vaccines are safe, sometimes even refusing inoculations.

The CDC and other public health officials insist such questions lack a basis in fact or science. Their greatest concern is that the broadening debate holds the potential to put a new generation of children at certain risk of deadly diseases if confidence in the safety of vaccines is lost and they don't receive recommended shots.

"I think it's huge," said Dr. Julia McMillan, a member of the American Academy of Pediatrics committee that makes vaccine recommendations. "There's no pediatrician in practice that doesn't confront this on a weekly basis: families who are questioning the need for – and in some cases refusing — vaccines for their children."

But the academy and the CDC are in agreement: They say there is no evidence to support a connection between autism and the mercury-based preservative thimerosal, which they stress is no longer used in most pediatric vaccines.

"We simply don't know what the cause of autism is," Dr. Bob Davis, the CDC's director of immunization safety, said Wednesday. Nonetheless, the CDC finds itself at the center of criticism.

A full-page ad scheduled to run in today's editions of USA Today, the nation's largest-circulation newspaper, accuses the CDC of "causing an epidemic of autism" by recommending that children receive a series of vaccines that until 2001 contained thimerosal.

The ad, placed by a group of autism advocacy groups, quotes environmental lawyer Robert F. Kennedy Jr. as saying: "It's time for the CDC to come clean with the American public."

But what stings public health advocates more is a letter sent Feb. 22 by Sen. Joseph Lieberman (D-Conn.) and seven other members of Congress. The bipartisan group asks that the CDC not take the lead on a new study examining the vaccine-autism issue.
"If the federal government is going to have a study whose results will be broadly accepted, such a study cannot be led by the CDC," the group wrote Dr. David Schwartz, new director of the National Institute of Environmental Health Sciences. The institute, a part of the National Institutes of Health, will convene a panel in May to discuss how to analyze a key CDC database to determine whether autism rates have dropped since thimerosal was removed from vaccines.

The letter was also signed by Sen. Debbie Stabenow, (D-Mich.), Rep. Dave Weldon, (R-Fla.,) Rep. Chris Smith, (R-N.J.), Rep. Carolyn Maloney, (D-N.Y.), Rep. Dan Burton, (R-Ind.), Rep. Joseph Crowley, (D-N.Y,), and Rep. Maurice Hinchey, (D-N.Y.).
Agency officials said Wednesday they are proud of the CDC's work on thimerosal safety issues and that they have looked hard to find a link as well as to find any other cause of autism.

"It was an unfortunate choice of language," Davis said of the Lieberman letter. "They and everyone else are certainly entitled to their opinion. We stand by all the research we have done."

Public health officials who work with CDC are more blunt.

"I think it's shocking," said Dr. Martin Myers, executive director of the National Network for Immunization Information and a professor of pediatrics at the University of Texas medical branch in Galveston.

"The loss of public trust in one of the most extraordinary institutions in the world. I'm not quite sure how that has occurred, but it has, and that's one of the unfortunate consequences," Myers said.

The controversy, which erupted as some autism advocates rallied on Capitol Hill today in conjunction with National Autism Month, is gaining political traction, moving well beyond an initial core of autism activists, CDC, public health and congressional officials all agree.

There are many parents of autistic children who believe, as do most pediatricians and scientists, that there is no scientific evidence that thimerosal caused autism and other neurological disorders. That issue was settled for most in a widely publicized 2004 report by an expert panel convened by the National Academy of Sciences Institute of Medicine.

But the report has been the subject of controversy and intense scrutiny since it was published.

Parents of many autistic children insist that thimerosal caused the disorder, because it appeared around the time their children received vaccinations. Their advocates also point to what they say is intriguing new research in animal models indicating that some individuals may be more sensitive to thimerosal than others. Martin Cowen, whose family lives in Jonesboro, is one such parent.
Cowen is convinced thimerosal-containing vaccines caused his son Lindsey's autism. Lindsey, who turned 8 last week, does not speak, has not been toilet trained and cannot be allowed outdoors without being restrained for fear he'll run into traffic, his father said.

Cowen is highly skeptical of the CDC, a position shared by a cohort of parents and advocates across the country.

"An enormous effort is being made to deny the connection," he said of the CDC. "What do I think their motive is? They are very interested in having the herd vaccinated... They don't think of people as people suffering individually. It's the greatest good for the greatest number."

The National Immunization Program, run by the CDC, coordinates immunization activities across the country. Increasing the rate of immunization against disease is a cornerstone of public health.

At the same time, the CDC also is charged with monitoring vaccine safety. It's an inherent conflict of interest, said Weldon, a doctor before he was elected to Congress.

"They really do have a credibility problem," said Weldon, who serves on the committee that decides the CDC's budget. "Part of the credibility problem is it's asking them to investigate a problem that they may have created."

Weldon became involved in the thimerosal issue seven years ago. "Honestly, at first I was very dubious," he said. "As I looked at it more and more, I began to feel there is some validity to this."

Weldon said the recent interest by Lieberman and others on Capitol Hill is a sign the issue is gaining political traction. Lieberman was unavailable for comment.
The controversy and public debate is likely to be further fueled by the full-page ad being paid for by a coalition of the autism activist groups led by Generation Rescue. The ad promotes a sophisticated Web site, www.PutChildren First.org, which includes links to CDC documents, e-mails and transcripts the groups say support their contention of an agency cover-up.

CDC spokesman Glen Nowak said many of the documents on the site have been in the public domain for years, and are presented out of context and in ways that may "look quite ominous" – when they're not.

"It's a very challenging issue," he said. The CDC is bracing for a spike in calls today from parents with questions and is increasing staffing at its public help line, 1-800-232-4636.

April 4, 2006

The Age of Autism: Hot potato on the Hill

The Age of Autism: Hot potato on the Hill
By DAN OLMSTED

The newly proposed legislation to study the autism rate in never-vaccinated American kids could settle the debate over vaccines and autism once and for all. Does that mean it will never happen?

This week U.S. Rep. Carolyn Maloney, D-N.Y., stepped out front on the issue. She announced at a briefing at the National Press Club that she is drafting legislation to mandate that the federal government find the answer to that question.

Notice the word "mandate" -- as in "direct," which is the language the bill uses. As in, quit making excuses and just do it.

Bureaucrats and lobbyists and "experts" sometimes forget that the power in this country resides with the people, who express their will through their elected representatives. This may sound rather grand, but the point is that legislators are not some "special interest" who must be humored while the permanent ruling class goes on its merry way.

That's why putting a bill before the Congress -- which Maloney says she will do by the end of April after getting as much public comment as possible -- could be a bigger threat than people realize.

After all, as Maloney said this week, "Maybe someone in the medical establishment will show me why this study is a bad idea, but they haven't done it yet."

Maloney, who credits this column with the idea to look at the never-vaccinated, also critiqued the studies that supposedly have ruled out any link between vaccines -- particularly the mercury-based preservative thimerosal -- and autism.

"The one major government study to date, the Institute of Medicine's 2004 review, has been met with skepticism from a lot of people," she said. "There are serious questions about the data set and methodology.

"Meanwhile, there is new biological evidence published in top journals, and from major U.S. universities, to support the mercury-autism hypothesis. Just last week we saw the study out of UC Davis, which found that thimerosal disrupts normal biological signals within cells, causes inflammation and even cell death.

"In short," the congresswoman concluded, "I believe that there are still more questions than answers. But answers are what we desperately need."

Surely everyone's in favor of answers, aren't they? Well, no, they're not. Already, doubts are being raised about whether there are enough never-vaccinated kids to do such a study (there are); whether it's worth doing (it is); and what the results would really show (well, let's find out).

In fact, if the feds hadn't been contentedly dozing for the last decade as the autism rate inexplicably soared, we'd already have our answer.

Back in 2002 a woman named Sandy Gottstein, who does not even have an affected child, came all the way from Anchorage, Alaska, to raise this issue at a congressional hearing.

"My question is, is the National Institutes of Health ever planning on doing a study using the only proper control group, that is, never-vaccinated children?" Gottstein asked.

Dr. Steve Foote of NIH responded: "I am not aware of a proposed study to use a suitably constructed group of never-vaccinated children. ... Now CDC would be more likely perhaps to be aware of such an opportunity."

Responded Dr. Melinda Wharton of the CDC: "The difficulty with doing such a study in the United States, of course, is that a very small portion of children have never received any vaccines, and these children probably differ in other ways from vaccinated children. So performing such a study would, in fact, be quite difficult."

Another futile effort is recounted in David Kirby's book, "Evidence of Harm," which recounts parents' compelling stories that their children's regressive autism was triggered by vaccine reactions.

The book -- just out in paperback and winner of this year's prize from the prestigious Investigative Reporters and Editors -- describes how in 2004 Lyn Redwood of the advocacy group SafeMinds sent a list of proposed studies to Rep. Dave Weldon, R-Fla.

Weldon, a strong advocate of banning thimerosal, sent the list on to Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention. Redwood's proposal No. 1: "An investigation into the rates of neurodevelopmental disorders including autism in vaccinated and unvaccinated populations (e.g., Amish, Christian Scientists.)"

Last year this column set out to test that theory among the Amish, in an unvaccinated subset of homeschooled kids and in a large medical practice in Chicago with thousands of never-vaccinated children. In this admittedly unscientific and anecdotal reporting, we didn't find very many kids with autism.

That's certainly not conclusive, but we did conclude there are plenty of never-vaccinated kids in this country, and not all of them are riding around in buggies and reading by candlelight. The total number of appropriate "controls" -- reasonably typical never-vaccinated kids -- is well into the tens of thousands, at least.

Nor is the issue pro-vaccines vs. no vaccines, as some who oppose such a study are subtly suggesting. It's safety vs. complacency.

After all, the CDC switched to an inactivated polio vaccine in 2000 when it became clear that the live polio virus was causing a handful of polio cases each year. And kids today are still protected from polio -- only now with zero chance of actually contracting it from the vaccine.

Switching to a safer vaccine did not cause a collapse in public confidence in childhood immunizations -- probably quite the contrary.

Expect to hear all kinds of excuses, including that one, from the powers that be as to why such a conclusive study couldn't, shouldn't and really mustn't be done. Then ask yourself, Why?

E-mail: dolmsted@upi.com

January 6, 2006

The Age of Autism: CDC Probes Vaccines

The Age of Autism: CDC probes vaccines
By DAN OLMSTED
UPI Senior Editor

The CDC is continuing to investigate whether a mercury preservative in childhood immunizations has caused cases of autism -- despite the fact a report it paid for said such research should end.

The agency wants to determine whether exposure to the vaccine preservative, called thimerosal, can be linked to autism spectrum disorders, Glen Nowak, director of media relations at the Centers for Disease Control and Prevention, told Age of Autism on Friday.

The study includes 300 children with ASDs, 200 of whom have full-syndrome autism, as well as a comparison group of children who do not have the disorders.

In 2004 a CDC-funded report by the independent Institute of Medicine concluded there was no evidence of a vaccine-autism link and efforts should go instead to "promising" autism research.

"Further research to find the cause of autism should be directed toward other lines of inquiry," the immunization review panel said. "It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of the IOM panel, in a New York Times article in June.

And the head of the CDC's immunization program said the same year that only "junk scientists and charlatans" take such a link seriously.

Nevertheless, spokesman Nowak said the CDC -- which sets the childhood immunization schedule that states adopt -- has not eliminated thimerosal as a suspect.

"We do agree the preponderance of evidence to date suggests there is no association between thimerosal and autism," said Nowak when asked why the CDC was continuing to pursue the issue. But he said CDC Director Dr. Julie Gerberding is committed to exploring all possibilities until the cause or causes of the disorder are identified.

"Dr. Gerberding has made it clear the CDC has not ruled out anything as possible causes of autism, including thimerosal," Nowak said. "Science is a dynamic process. We have continued to fund studies to look at the role, if any, of thimerosal."

The study was designed in 2003 and data collection -- which includes evaluation of each child and their immunization history -- began last year, Nowak said. A letter dated Nov. 8 and an accompanying brochure were provided by a parent who received them.

"In this study, the CDC wants to find out if children who received vaccines and medicines with Thimerosal as infants are more likely to later have developmental problems such as Asperger's Syndrome or autism," says the letter, sent on behalf of the CDC by a research firm and Kaiser Permanente, one of three HMOs involved.

"Your participation in this study may help doctors learn about the possible risks of vaccines and medicines that contained thimerosal."

The mother who received the letter expressed dismay because most medical experts and federal health authorities have reassured parents thimerosal does not cause autism and is not responsible for the large increase in diagnoses beginning in the 1990s.

In 1999 the CDC and the American Academy of Pediatrics urged manufacturers to phase out thimerosal from childhood immunizations as soon as possible, based on the concern that the total amount of mercury received by a child could exceed some government guidelines.

But, citing five subsequent epidemiological studies, the CDC and other health authorities now say there is no evidence of an association.

The CDC continues to recommend flu shots -- most of which contain thimerosal -- for pregnant women and for children 6 to 23 months of age. The agency has declined to express a preference for the thimerosal-free version, citing concern that it might cause some parents to forego immunizing their children against flu if they cannot obtain it.

In addition, tens of millions of children around the world are being injected with thimerosal-containing vaccines, based heavily on the assurances of U.S. health authorities that it is safe and does not cause autism.

Results of the study should be available in September 2007, Nowak said.

December 22, 2005

Dan Olmsted - Autism's Dick Tracy

Dan Olmsted - Autism's Dick Tracy
by Evelyn Pringle

According to officials in the nation's regulatory agencies, the main obstacle to proving or disproving a link between the autism epidemic and the mercury-based preservative, thimerosal, that was contained in childhood vaccines until a few years ago, and is still in flu vaccines, has been the inability to find a large enough group of people who have never been vaccinated to compare with people who have.

In fact, a few months ago, CDC officials claimed that such a study would be nearly impossible. On July 19, 2005, the CDC held a Media Briefing on the topic of vaccines and child health. On the issue of government research on autism, a reporter asked CDC Director, Dr Julie Gerberding: "are you putting any money into clinical studies rather than epidemiological studies, to verify or disprove the parents' claim about a particular channel, a particular mechanism by which a minority of genetically suspectable kids are supposed damaged?"

Gerberding replied: To do the study that you're suggesting, looking for an association between thimerosal and autism in a prospective sense is just about impossible to do right now because we don't have those vaccines in use in this country so we're not in a position where we can compare the children who have received them directly to the children who don't.

Dr Duane Alexander, of the National Institute of Health, agreed and said: It's really not possible ... in this country to do a prospective study now of thimerosal and vaccines in relationship to autism. Only a retrospective study which would be very difficult to do under the circumstances could be mounted with regard to the thimerosal question.

However, Dan Olmsted, investigative reporter for United Press International, and author of the Age of Autism series of reports, appears to have solved this problem when he came up with the idea of checking out the nation's Amish population where parents do not ordinarily vaccinate children.

First he looked to the Amish community in Pennsylvania and found a family doctor in Lancaster who had treated thousands of Amish patients over a quarter-century who said he has never seen an Amish person with autism, according to Age of Autism: A glimpse of the Amish on June 2, 2005.

Olmsted also interviewed Dick Warner, who has a water purification and natural health business and has been in Amish households all over the country. "I've been working with Amish people since 1980," Warner said.

"I have never seen an autistic Amish child -- not one," he told Olmsted. "I would know it. I have a strong medical background. I know what autistic people are like. I have friends who have autistic children," he added.

Olmsted did find one Amish woman in Lancaster County with an autistic child but as it turns out, the child was adopted from China and had been vaccinated. The woman knew of two other autistic children but here again, one of those had been vaccinated.

Next Olmsted visited a medical practice in Middleburg, Indiana, the heart of the Amish community, and asked whether the clinic treated Amish people with autism.

A staff member told Olmsted that she had never thought about it before, but in the five years that she had worked at the clinic she had never seen one autistic Amish.

On June 8, 2005, Olmsted reported on the autism rate in the Amish community around Middlefield, Ohio, which was 1 in 15,000, according to Dr Heng Wang, the medical director, at the DDC Clinic for Special Needs Children.

"So far," according to Age of Autism, "there is evidence of fewer than 10 Amish with autism; there should be several hundred if the disorder occurs among them at the same 166-1 prevalence as children born in the rest of the population."

In addition to the Amish, Olmsted recently discovered another large unvaccinated group. On December 7, 2005, Age of Autism reported that thousands of children cared for by Homefirst Health Services in metropolitan Chicago have at least two things in common with Amish children, they have never been vaccinated and they don't have autism.

Homefirst has five offices in the Chicago area and a total of six doctors. "We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines," said Dr Mayer Eisenstein, Homefirst's medical director who founded the practice in 1973.

Olmsted reports that the autism rate in Illinois public schools is 38 per 10,000, according to state Education Department data. In treating a population of 30,000 to 35,000 children, this would logically mean that Homefirst should have seen at least 120 autistic children over the years but the clinic has seen none.

It looks like the problem is finally solved. Thanks to autism's Dick Tracy, the government now has thousands of unvaccinated people to compare to people who were vaccinated.

evelyn.pringle@sbcglobal.net

December 7, 2005

The Age of Autism: 'A pretty big secret'

The Age of Autism: 'A pretty big secret'
By Dan Olmsted
UPI Senior Editor

It's a far piece from the horse-and-buggies of Lancaster County, Pa., to the cars and freeways of Cook County, Ill.

But thousands of children cared for by Homefirst Health Services in metropolitan Chicago have at least two things in common with thousands of Amish children in rural Lancaster: They have never been vaccinated. And they don't have autism.

"We have a fairly large practice. We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines," said Dr. Mayer Eisenstein, Homefirst's medical director who founded the practice in 1973. Homefirst doctors have delivered more than 15,000 babies at home, and thousands of them have never been vaccinated.

The few autistic children Homefirst sees were vaccinated before their families became patients, Eisenstein said. "I can think of two or three autistic children who we've delivered their mother's next baby, and we aren't really totally taking care of that child -- they have special care needs. But they bring the younger children to us. I don't have a single case that I can think of that wasn't vaccinated."

The autism rate in Illinois public schools is 38 per 10,000, according to state Education Department data; the Centers for Disease Control and Prevention puts the national rate of autism spectrum disorders at 1 in 166 -- 60 per 10,000.

"We do have enough of a sample," Eisenstein said. "The numbers are too large to not see it. We would absolutely know. We're all family doctors. If I have a child with autism come in, there's no communication. It's frightening. You can't touch them. It's not something that anyone would miss."

No one knows what causes autism, but federal health authorities say it isn't childhood immunizations. Some parents and a small minority of doctors and scientists, however, assert vaccines are responsible.

This column has been looking for autism in never-vaccinated U.S. children in an effort to shed light on the issue. We went to Chicago to meet with Eisenstein at the suggestion of a reader, and we also visited Homefirst's office in northwest suburban Rolling Meadows. Homefirst has four other offices in the Chicago area and a total of six doctors.

Eisenstein stresses his observations are not scientific. "The trouble is this is just anecdotal in a sense, because what if every autistic child goes somewhere else and (their family) never calls us or they moved out of state?"

In practice, that's unlikely to account for the pronounced absence of autism, says Eisenstein, who also has a bachelor's degree in statistics, a master's degree in public health and a law degree.

Homefirst follows state immunization mandates, but Illinois allows religious exemptions if parents object based either on tenets of their faith or specific personal religious views. Homefirst does not exclude or discourage such families. Eisenstein, in fact, is author of the book "Don't Vaccinate Before You Educate!" and is critical of the CDC's vaccination policy in the 1990s, when several new immunizations were added to the schedule, including Hepatitis B as early as the day of birth. Several of the vaccines -- HepB included -- contained a mercury-based preservative that has since been phased out of most childhood vaccines in the United States.

Medical practices with Homefirst's approach to immunizations are rare. "Because of that, we tend to attract families that have questions about that issue," said Dr. Paul Schattauer, who has been with Homefirst for 20 years and treats "at least" 100 children a week.

Schattauer seconded Eisenstein's observations. "All I know is in my practice I don't see autism. There is no striking 1-in-166," he said.

Earlier this year we reported the same phenomenon in the mostly unvaccinated Amish. CDC Director Dr. Julie Gerberding told us the Amish "have genetic connectivity that would make them different from populations that are in other sectors of the United States." Gerberding said, however, studies "could and should be done" in more representative unvaccinated groups -- if they could be found and their autism rate documented.

Chicago is America's prototypical "City of Big Shoulders," to quote Carl Sandburg, and Homefirst's mostly middle-class families seem fairly representative. A substantial number are conservative Christians who home-school their children. They are mostly white, but the Homefirst practice also includes black and Hispanic families and non-home-schooling Jews, Catholics and Muslims.

They tend to be better educated, follow healthier diets and breast-feed their children much longer than the norm -- half of Homefirst's mothers are still breast-feeding at two years. Also, because Homefirst relies less on prescription drugs including antibiotics as a first line of treatment, these children have less exposure to other medicines, not just vaccines.

Schattauer, interviewed at the Rolling Meadows office, said his caseload is too limited to draw conclusions about a possible link between vaccines and autism. "With these numbers you'd have a hard time proving or disproving anything," he said. "You can only get a feeling about it.

"In no way would I be an advocate to stand up and say we need to look at vaccines, because I don't have the science to say that," Schattauer said. "But I don't think the science is there to say that it's not."

Schattauer said Homefirst's patients also have significantly less childhood asthma and juvenile diabetes compared to national rates. An office manager who has been with Homefirst for 17 years said she is aware of only one case of severe asthma in an unvaccinated child.

"Sometimes you feel frustrated because you feel like you've got a pretty big secret," Schattauer said. He argues for more research on all those disorders, independent of political or business pressures.

The asthma rate among Homefirst patients is so low it was noticed by the Blue Cross group with which Homefirst is affiliated, according to Eisenstein.

"In the alternative-medicine network which Homefirst is part of, there are virtually no cases of childhood asthma, in contrast to the overall Blue Cross rate of childhood asthma which is approximately 10 percent," he said. "At first I thought it was because they (Homefirst's children) were breast-fed, but even among the breast-fed we've had asthma. We have virtually no asthma if you're breast-fed and not vaccinated."
Because the diagnosis of asthma is based on emergency-room visits and hospital admissions, Eisenstein said, Homefirst's low rate is hard to dispute. "It's quantifiable -- the definition is not reliant on the doctor's perception of asthma."
Several studies have found a risk of asthma from vaccination; others have not. Studies that include never-vaccinated children generally find little or no asthma in that group.

Earlier this year Florida pediatrician Dr. Jeff Bradstreet said there is virtually no autism in home-schooling families who decline to vaccinate for religious reasons -- lending credence to Eisenstein's observations.

"It's largely non-existent," said Bradstreet, who treats children with autism from around the country. "It's an extremely rare event."

Bradstreet has a son whose autism he attributes to a vaccine reaction at 15 months. His daughter has been home-schooled, he describes himself as a "Christian family physician," and he knows many of the leaders in the home-school movement.

"There was this whole subculture of folks who went into home-schooling so they would never have to vaccinate their kids," he said. "There's this whole cadre who were never vaccinated for religious reasons."

In that subset, he said, "unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I've not had a single case."

Federal health authorities and mainstream medical groups emphatically dismiss any link between autism and vaccines, including the mercury-based preservative thimerosal. Last year a panel of the Institute of Medicine, part of the National Academies, said there is no evidence of such a link, and funding should henceforth go to "promising" research.

Thimerosal, which is 49.6 percent ethyl mercury by weight, was phased out of most U.S. childhood immunizations beginning in 1999, but the CDC recommends flu shots for pregnant women and last year began recommending them for children 6 to 23 months old. Most of those shots contain thimerosal.

Thimerosal-preserved vaccines are currently being injected into millions of children in developing countries around the world. "My mandate ... is to make sure at the end of the day that 100,000,000 are immunized ... this year, next year and for many years to come ... and that will have to be with thimerosal-containing vaccines," said John Clements of the World Health Organization at a June 2000 meeting called by the CDC.

That meeting was held to review data that thimerosal might be linked with autism and other neurological problems. But in 2004 the Institute of Medicine panel said evidence against a link is so strong that health authorities, "whether in the United States or other countries, should not include autism as a potential risk" when formulating immunization policies.

But where is the simple, straightforward study of autism in never-vaccinated U.S. children? Based on our admittedly anecdotal and limited reporting among the Amish, the home-schooled and now Chicago's Homefirst, that may prove to be a significant omission.
--
This ongoing series on the roots and rise of autism welcomes comment. E-mail: dolmsted@upi.com

November 1, 2005

The Age of Autism: The Amish Elephant

The Age of Autism: The Amish Elephant

By Dan Olmsted
UPI Senior Editor
Oct. 29, 2005 at 2:34PM

A specter is haunting the medical and journalism establishments of the United States: Where are the unvaccinated people with autism?

That is just about the only way to explain what now appears to be a collective resistance to considering that question. And like all unanswered questions, this raises another one: Why?

What is the problem with quickly and firmly establishing that the autism rate is about the same everywhere and for everybody in the United States, vaccinated or unvaccinated? Wouldn't that stop all the scientifically illiterate chatter by parents who believe vaccinations made their children autistic? Wouldn't it put to rest concerns that -- despite the removal of a mercury-containing preservative in most U.S. vaccines -- hundreds of millions of children in the developing world are possibly at risk if that preservative is in fact linked to autism?

Calling this issue The Amish Elephant reflects reporting earlier this year in Age of Autism that the largely unvaccinated Amish may have a relatively low rate of autism. That apparent dissimilarity is, in effect, a proverbial elephant in the living room -- studiously ignored by people who don't want to deal with it and don't believe they will have to.

Here are a few cases in point.

Earlier this month the National Consumers League conference in Washington held a session on communicating issues around vaccine safety. I was on the panel and talked about the Amish and autism. In the Q&A session that followed, the first question was for me.

"Is this a proper role for a journalist, or is this just a straw dog set up there with a preliminary answer? It not only showed up where you wrote it. It was all over the place. You did very, very well for UPI (at which point I said, 'Thank you -- please tell my bosses that!') but the question is, did you do very, very well for America?

"Is it appropriate for a journalist -- you weren't reporting, you were investigating. And I just wonder if you think it's an appropriate role for you to play."

My answer: "There's different roles for the press. That's certainly a reasonable question. That is investigative reporting. This idea is something that's already been discarded -- that there's any reason why you would want to look in an unvaccinated population.

"One of my favorite comments about journalism is that it's the wild card of American democracy. The First Amendment says we can do (in the sense of reporting about) whatever we want. So one of our privileges is to get an idea in our head and go look at it."

My questioner was not finished. "I wasn't questioning whether you have a First Amendment right to do it. I think this is more of a question of the ethics, of what value we are bringing to the debate."

My response: "That's probably not a good one for me to answer. Obviously I thought it was ethical."

At that point a fellow panelist, Dr. Louis Cooper, former president of the American Academy of Pediatrics and a staunch vaccine defender, spoke up. "I would jump in and say I thought it was ethical and I think it was useful," said Cooper, a courtly and unfailingly courteous Manhattan pediatrician.

"As you've learned, it was annoying to many people. I wasn't annoyed by it because I thought you kept the process and the debate and the discussion going forward. And we have to do that for one another."

That did not end the discussion. A few minutes later a public-health professor from -- where else? Harvard -- did her own version of Jeopardy!, offering the correct "answer" in the form of a question.

"This question is for Dan. Did you mention the outbreak of polio that happened in the Amish community in the Netherlands that caused widespread problems there, and also the fact that there'd been some context with respect to history in our country in trying to reach out to the Amish to actually encourage them to try to benefit from some of the vaccine technology to the extent that we could?

"So there's been a long history in this country of the CDC trying to reach out to them to the extent that they could. Also with respect to polio, I think what's really amazing is it's such a great story, this is such an exciting time, in the sense that we are very close to global eradication. What that means is we've gone from 1988 when we had 350,000 estimated paralytic polio cases in the world every year to roughly a thousand. It's very exciting that in fact we don't have the terror or the hysteria and all of the fear that surrounded disease.

"I just want to remind everyone that one thing that's very important in the context of reporting these stories is making sure that people do remember and also realize with infectious disease is these things can come back, and until they are eradicated they can come back and devastate us just as much as they did before, except now there are a lot more people.

"There's some related news that people might find interesting. A headline in the Washington Post today, 'Polio outbreak occurs among Amish families.' So I thought people might be interested in that."

At that point the moderator, Dr. Roger Bernier of the Centers for Disease Control, said time was getting short -- why was I not surprised? -- and asked for the next "question."

One thing I've noticed is the more that people want to lecture instead of learn, the more they speak in breathless run-on sentences that are hard to stop, slow down or even diagram. They leave one with the unspoken idea that dialogue -- opening the door to new information -- is somehow dangerous.

These exchanges reminded me of the response I got from Dr. Julie Gerberding, the CDC director, when I asked her this summer, verbatim: "Has the government ever looked at the autism rate in an unvaccinated U.S. population, and if not, why not?"

Her answer, verbatim:
--

In this country, we have very high levels of vaccination as you probably know, and I think this year we have record immunization levels among all of our children, so to (select an unvaccinated group) that on a population basis would be representative to look at incidence in that population compared to the other population would be something that could be done.

But as we're learning, just trying to look at autism in a community the size of Atlanta, it's very, very difficult to get an effective numerator and denominator to get a reliable diagnosis.

I think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

I think with reference to the timing of all of this, good science does take time, and it's part of one of the messages I feel like I've learned from the feedback that we've gotten from parents groups this summer (in) struggling with developing a more robust and a faster research agenda, is let's speed this up. Let's look for the early studies that could give us at least some hypotheses to test and evaluate and get information flowing through the research pipeline as quickly as we can.

So we are committed to doing that, and as I mentioned, in terms of just measuring the frequency of autism in the population some pretty big steps have been taken. We're careful not to jump ahead of our data, but we think we will be able to provide more accurate information in the next year or so than we've been able to do up to this point. And I know that is our responsibility.

We've also benefited from some increased investments in these areas that have allowed us to do this, and so we thank Congress and we thank the administration for supporting those investments, not just at CDC but also at NIH and FDA.

--

The latest response to my pesky persistence comes not from academia or government but from my own profession. Last week the prestigious Columbia Journalism Review published an article whose main thrust -- with which I concur -- was that a vigorous debate over a possible link between vaccines and autism was being thwarted by the self-induced timidity of the press.

Some reporters told the author, Daniel Schulman, that they have basically given up on the story because the criticism -- some of it from their own editors -- was so fierce, and the story was so complicated.

Schulman described Age of Autism's efforts to come at the issue "sideways," looking for possible clues to the cause of the disorder in the natural history of autism. And he mentioned our reporting on the Amish:

"Privately, two reporters told me that, while intriguing, Olmsted's reporting on the Amish is misguided, since it may simply reflect genetic differences among an isolated gene pool. ... Both reporters believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions."

Ouch. Being slammed by one's peers is never enjoyable, although reporters need to have thick skins and realize they dish this kind of thing out every day. (And those anonymous sources really are annoying, especially when I am happy to be quoted by name about everything.)

What's interesting about the reporters' "private" remarks is the degree of presumed expertise they suggest -- that looking at the Amish is misguided "since it may simply reflect genetic differences among an isolated gene pool." Really? Where did these guys get their doctorate in genetics, Harvard?

This assertion -- that the Amish gene pool could explain everything, based on no data that I'm aware of -- is the kind of self-interested speculation masquerading as expertise that has beset the autism-vaccines discussion for far too long. The term I learned for it long ago is "convenient reasoning," and it does not always have to be conscious.

The Amish have all kinds of standard genetic mental and developmental disorders -- from bipolar to retardation -- and a lot more genetic issues to boot from this supposedly protective "isolated gene pool." The doctors who actually know something about the Amish have never suggested to me that genes have anything to do with a low rate of autism. They seem perplexed.

In upcoming columns, we'll put that question to the right people -- geneticists -- and tell you what we find. It's called reporting.