Fw: WHAT DID THE CDC KNOW AND WHEN DID THEY KNOW IT?

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12/13/2007

WHAT DID THE CDC KNOW AND WHEN DID THEY KNOW IT?

(Part 1 of 2)

By MARK BLAXILL

With the recent announcement of the " largest ever " study to

investigate the causes of autism, run through Kaiser Permanente (the

HMO that lost vaccine safety data implicating thimerosal in harming

children) and led by Croen (the epidemiologist who first

attempted to deny the autism epidemic with faulty data), sometimes

you just want to shake your head and wonder, what on earth is going

on down in Atlanta?

The Centers for Disease Control (CDC ) was once a proud and

prestigious agency, staffed by the most elite corps of disease

fighters on the planet, manning the front lines of the most

threatening health problems facing mankind. Today, riven by

dissension and ridiculed by many, the CDC has made a mockery of

itself in failing to get to the roots of the most critical public

health challenges of the day, including, but not limited to, autism.

The consequences of its failures are profound. Morale has

deteriorated and Congress has been investigating the agency for

months.

Reflecting their loss of trust in the CDC's objectivity, autism

advocacy groups have actively lobbied to reduce (and even zero out)

CDC funding in the Combating Autism Act. The CDC has dual

responsibility for monitoring vaccine safety and promoting the

vaccine schedule; at the same time it's also responsible for

surveillance on diseases like autism. In light of widespread concern

over the link between autism and vaccines in the autism parent

community, when the CDC announces that it's launching a new effort to

find the cause of autism, it's hard not to think of OJ Simpson

offering a reward for finding his wife's killer.

It was not always so. Indeed, in the midst of the AIDS epidemic, it

was the CDC that took the leadâ? " often against the intransigence and

conservatism of NIH researchersâ? " in tracking down the causes of the

AIDS epidemic and to reduce its toll on society. For many years, CDC

was held up to the world as a model government agency. Yet in autism,

we have truly seen the downward spiral of the agency at its nadir:

defensive, secretive and non-responsive to a health crisis in full

flower. There are undoubtedly larger forces affecting the agency and

its leadership. But if there are often turning points in the life of

many institutions, critical crossroads at which difficult choices are

made, then the CDC's handling of the autism epidemic is certainly one

such turning point . Poor choices at crucial moments can lead, not

only to negative consequence on a specific issue, like autism, it can

cause the institution to lose its way. In a way, autism has been both

a strategic and a moral problem for the CDC. For it's in the autism

epidemic, I would suggest, that the CDC has truly sold its soul.

All of which leads me to ask the question, when did the CDC make this

choice? What was the point in the history of autism when CDC leaders

had the chance to honor its long history and raise the alarm over the

autism crisis? Some would point to the infamous Simpsonwood meeting

in the summer of 2000, where evidence of Thimerosal's neurotoxicity,

already tampered with in ways unknown to the meeting participants,

was swept aside. I have certainly been in the forefront of the

critics of the CDC work on vaccine safety issues, but I believe the

CDC was already well past the turning point by Simpsonwood. I would

suggest we need to look a bit earlier to find the CDC's crossroads in

autism. For that, we need to look couple of years before the summer

of 2000 and a bit further north.

The CDC lost its way on autism in Brick Township, NJ.

Three years ago, I attended a presentation outside of Boston given by

Marshalyn Yeargin-Allsopp, the CDC's lead autism epidemiologist. In

the course of a lengthy party-line talk about autism ( " we simply

don't know if autism rates are going up or if its just better

diagnosis " ), she said something that surprised me. " About ten years

ago, we began to hear concerns from around the country that people

were seeing more cases of autism " , she said. I raised my hand from

the audience and suggested that maybe ten years was enough time to

move beyond the stage of ignorance on something this important. She

snapped at me, a revealing moment in itself, and plowed through the

rest of her 200 page presentation without pausing for a breath (or

another question). But her comment got me thinking. Certainly, the

CDC, the agency on the front line of all emerging public health

problems from HIV to SARS to e. coli in a bad crop of California

spinach, would have had at least some idea that there was an autism

problem far before any of the rest of us did. And that leads me to my

question for the day.

What did the CDC know about the autism epidemic and when did they

know it?

It's a crucial question. For it is in the specific decisions that the

CDC made-- when they proceeded from uncertainty, to confusion, to

(perhaps if we're charitable) error and then to a policy commitment--

that we might find th at fateful moment of moral choice: the moment

when CDC chose to put its own bureaucratic agenda ahead of our

children. And from Yeargin-Alsopp's intriguing comment, I now knew

that CDC was at least beginning to hear reports of rising autism

rates around the year my own daughter was born, in 1995.

I know little about the CDC's activities in the years up to 1997, and

there are few signs of a broader recognition of an autism problem

that one can find before then. But in the fall of 1997, at a parent

support group in northern New Jersey, a few people started commenting

about how many new autism cases seemed to be cropping up in Brick

Township, and how there seemed to be an unusual number of 3-4 year

old children with a new autism diagnosis. One of the attendees at the

support group, a mother named Bobbi Gallagher who had two young

children with autism, was struck by this coincidence. Living in

northern New Jersey, the thought of environmental contamination came

naturally to mind and she wondered if there might not be a cluster of

autism cases in Brick. Perhaps, she thought, there was something in

the water. So she resolved to do something about it. She decided to

send around a survey to see if she could count the autism cases in

all of Brick, a town of some 70,000 people.

So as the new 1997 school year was starting, Bobbi Gallagher

distributed her survey form everywhere she could think of in town.

And in a few short weeks, she got a surprising result. In response to

her impromptu survey, she counted over 40 autistic children in Brick

Township alone and over 30 who were just three or four years old.

Armed with these results, Gallagher formed a group called the Brick

POSSE (Parents of Special Services and Education) and organized a

meeting at the local library a couple of months later. They contacted

London at the National Alliance for Autism Research (NAAR) who

in turn invited a number of academic epidemiologists. To a full house

at the library meeting Bobbi Gallagher shared her findings. One of

the epidemiologists present, Craig Newschaffer, decided the numbers

were disturbing enough to contact the New Jersey Department of Health

and Senior Services, who in turn contact ed the CDC. In the meantime,

the Brick POSSE arranged a meeting with their congressman, Rep. Chris

, who invited them to a meeting in his office in Washington.

Within weeks, a more organized response took shape. Bobbie Gallagher

received an invitation to another meeting in Washington, this time in

New Jersey Senator Toricelli's office. Gallagher remembers the

date for this meeting vividly, April Fool's Day, 1998. And when she

walked into the room she was astonished at how quickly plans had

emerged. She had expected again to play the role of supplicant,

pleading with the government officials to take action. Instead, she

found a prompt and aggressive action plan being put on the table. In

the room that day were representatives from multiple departments

within the CDC who had come to the Senator's office equipped with a

multi-part plan, the first part of which was a prevalence study for

Brick Township, an in-depth survey of the town's autistic population

that would pick up where Gallagher's survey left off. CDC had

identified a core team of staffers to lead the effort, including

Jacquelyn Bertrand and Marshalyn Yeargin-Allsopp from the National

Center on Birth Defects and Developmental Disabilities (NCBDDD) and

Bove from the Agency for Toxic Substances and Disease Registry

(ASTDR). Their proposal: to diagnose every child with autism in Brick

Township between the ages of three and ten years old. They would

start canvassing for cases and conducting interviews beginning with

the start of the 1998 school year in September. And t hey planned to

move quickly (at lightning speed really), to have their initial

results ready by the end of the year.

And they were true to their word. Two diagnosticians, Dr. Bertrand

and Dr. Audrey Mars from the nearby Wood Medical

School, spent several days a week diagnosing children in the fall of

1998. And by January 12, 1999, the CDC had confirmed the findings of

Gallagher's initial survey. Out of an initial estimated Brick

population of 6,000 children from 3-10 years old, they had found over

40 cases of autism, giving a preliminary rate of 12 times the

estimated prevalence in the rest of the country. " I think there is a

cluster here. I don't know why, " lead investigator Bertrand said in

an article by the Associated Press the next week. " If [we find] it's

something that can be taken out of the community, that will be done, "

she said. According to AP she also added another intriguing tidbit:

that " the researchers are eager to solve the puzzle here because of

escalating calls the last few years about possible, but less

credible, clusters elsewhere in the nation. "

It all seemed to Gallagher like a dream: the cavalry had arrived and

somehow they were going to get to the bottom of the issue. But then,

something strange happened. Suddenly, the lines of communication with

the CDC team went dark. After several months of intensive planning ,

intensive collaboration and rapid response, the CDC team told

Gallagher that they were not at liberty to discuss the results with

the parents any longer. According to Gallagher, one of the CDC staff

ers informed her that the mere mention of the word " cluster " had

provoked a reaction from the higher ups within the CDC. Apparently,

there was now even a debate as to whether they could use the

word " elevated " when describing the prevalence rates. So from January

1999, until the release of the final study in April of 2000, there

was no more interaction with the CDC. Not a single word.

Perhaps it was concern about the legal questions raised if there was

indeed something in the water (class action attorneys had begun

recruiting local families). Perhaps the Brick results weren't a

cluster after all but part of a larger pattern that caused a more

generalized concern within CDC (maybe it wasn't the water after all,

since in February of 1998 the Lancet has published Andy Wakefield's

controversial study implicating vaccines in autism) . But there was

no doubt about the silence coming from Atlanta. Something had changed

the behavior of the CDC team. And it raises an interesting question.

What did the CDC learn about autism rates in Brick Township and what

did they do with their newfound data?

--

In Part 2: a discussion of the specific numbers in CDC's Brick

Township report and what they should have told the world about the

autism cases that they found in Brick.

--

Mark Blaxill is editor-at-large of Age of Autism and Vice President

of SafeMinds. He has authored or co-authored a number of peer-

reviewed studies on autism as well as numerous SafeMinds

commentaries. He lives in Cambridge MA with his wife and two

children, one of whom was diagnosed with autism and has since made

great strides towards a full recovery. In addition to his autism

activities, he has had a distinguished business career.

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