Taking a shot in the dark

H/T to Michelle O'Neill for sending a link to this piece by writer Cornelia Read. It's long and somewhat winding, but if you know anyone touched by autism it is time well spent. Hell, it's time well spent if you care about good public health policy, accountability, reliable journalism, doctors/researchers with a backbone, curtailing special interests.... I could go on and on.

At dispute is thimerosal, which was used as a preservative in childhood vaccines. If you have a child born between 1989 and 2003, he or she received vaccines with this preservative containing mercury. My kids were born in 1992, 1994 and 1999. When my youngest was born, I remember expressing horror at the number of vaccinations he received at one time. Of course, he got them because that's what pediatricians recommended.

Do you remember those chubby little thighs getting poked two, three and four times a visit? The silent cry of your child, followed by the wail? The colorful band-aids quickly applied to cover up the prick? The suggestion of Motrin to alleviate any pain? The warnings of reactions to the shots that you presumed would never come? You scoop up your baby and snuggle him or her close knowing you have at least a few more weeks reprieve before they are stuck once again. I'm not disputing the great advantage of childhood immunizations (though I resisted the chicken pox vaccine for many years because of its newness and only succumbed when all my efforts to expose my children to the chicken pox had failed).

I don't know what the answer to catastrophic autism rates are, but I do know that good research must continue on all fronts and that calling a matter "closed" is scientifically unsound and could detrimentally impact hundreds of thousands of children. I have many more questions about this issue than answers.

What happens when all of these autistic children become adults? What happens to the veracity of research when findings are whitewashed to benefit a desired outcome? How does that impact researchers in general, not just for autism? Search for the cure for cancer...unless you discover something financially devastating...and then we'll have to alter your findings.

As a journalist, if you take a look at some of the mainstream news articles about this issue, journalists are quick to point to the CDC as the authority on this issue, often discounting the parent perspective or that of researchers or even public officials who have expressed concern. In addition to the failure of the public health community, it appears the mainstream media may have added insult to injury. Better scrutiny to studies, statements, legislation and money must be paid.

Read's post references articles in:
Time
Rolling Stone (see related on MSNBC)
Dr. Marcia Angell, who took a parting shot at pharmaceutical companies when she left her post as editor-in-chief of the New England Journal of Medicine

Kennedy is an attorney and environmentalist who has spent years working on issues of mercury toxicity. He frequently encountered mothers of autistic children imploring him to look at the link between mercury-based thimerosal and autism rates. He was skeptical, until he read the Simpsonwood transcripts referenced below.

From Kennedy's Rolling Stone article informed by documents obtained through Freedom of Information request.

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

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

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

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

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

And then there's this conflicting statement in the New York Times following the vaccine court's decision in favor of Hannah Poling:

“Let me be very clear that the government has made absolutely no statement indicating that vaccines are a cause of autism,” Dr. Julie L. Gerberding, director of the Centers for Disease Control and Prevention, said Thursday. “That is a complete mischaracterization of the findings of the case and a complete mischaracterization of any of the science that we have at our disposal today.”

Sure would be nice to get to the truth or even some approximation of truth. The government phased out thimerosal in vaccines by 2003, the CDC and FDA bought up a bunch of the leftovers and shipped it off to developing countries (!!). Some it left here to be used in vaccines for older children (presumably better able to tolerate the mercury levels). Lost in all this discussion of mercury levels and public health policy and who pays what are the hundreds of thousands of children who have been diagnosed with autism and their families.

I'll leave you with this snip from Cornelia Read in the comment section of her post:

Brett, as you no doubt know I've got fraternal twin girls. They had the same shots at the same ages--same lots, same doctors, etc.

One was the "dominant twin" the first year--hit all her milestones first, etc. Between 12 and 13 months she stopped looking up when we said her name, stopped most of her babbling (they'd both been using words by that point), stopped looking us in the eye, stopped playing with her sister. By the time she was two and a half, she had completely lost her language. She's never spoken again, except for repeating a phrase someone else said twice, over the last 12 years.

...

I try really, really hard not to imagine what life would have been like if they were BOTH okay, because if I think about that, it makes me break down and sob every damn time.

When I read that description of Hannah Poling, I had to leave the computer for about an hour, because I know just what that was like for her parents--to watch a child recede from you when there's not a DAMN thing anyone can tell you about it, and certainly not a damn thing they can do to stop it.

To find out over the years that there might have been a way to stop it, that the government might have been able to act in time to save several hundred thousand children from this horror (and probably millions more around the world), is goddamn heartbreaking.

Word of the day
obtuse: lacking sharpness or quickness of sensibility or intellect