Showing posts with label VSD. Show all posts
Showing posts with label VSD. Show all posts

July 15, 2007

Something Has Happened

Two weeks ago I took a break from blogging to spend time with family who came to visit. Last week was a work catch up week, and I have only begun to catch up with all that has happened in the autism world while I was gone.

As I have been reading, I am seeing things that are surprising me. It is freaking me out a little.

Something has changed around the Cedillo Trial.

I have been following autism news for three years and I have never seen the kind of stories/events that are surfacing.

Dave Weldon and Carolyn Maloney have introduced bipartisan legislation, the Mercury Free Vaccines Act of 2007. Autism Speaks has uncharacteristically decided to back it and oppose AB 16 in Sacramento that would mandate that the State of California automatically adopt any vaccine that the CDC puts on the schedule (and pushed the HPV vaccine). They have never taken a stance on vaccines before. AS is also listing mercury research that was funded by CAN before the merger on their web site, but someone who spends a lot of time on the site said they didn't remember every seeing this page there before. (Anyone know if this is new, or remember seeing it in the past?)

AS has also stepped into the insurance coverage legislation in PA and announced legislative efforts on their web site.

The CDC issued a response to Verstraeten/VSD on their web site with lots of references to thimerosal studies. (I haven't had a chance to read it yet), but how long has it been there? It is not dated and David Kirby, who is a guy who keeps track of these things, didn't even know it was there until a few days ago.

The run up to the Wakefield MMR Trial has reignited doubt in the vaccine in the UK and articles like these are coming out:

At Last They Admit It, This Jab CAN Harm Your Child


The Truth About MMR

DANGERS OF MMR JAB 'COVERED UP'


The Autism Research Institute is now being backed by the giant Autism Society of America, which is now teaming up with Easter Seals who will now make Autism their priority.

Over the last three years, my blog has been visited occasionally by CDC and NIH and a few other government agencies. These visits were few and far between, and always interesting to me when they happened. But now, ramping up with increasing frequency since about April, my blog has been regularly visited by The Powers that Be CDC, NIH, FDA, EPA, HHS, the House and the Senate, The Department of Justice (who are the governments "defendants" in the Cedillo Trial), The Department of Veterans Affairs, The US Forestry Service, The Naval Research Laboratory, Lawrence Livermore Laboratory, The US Census Bureau, dozens of foreign, state and local governments, a slew of Canadian government agencies, dozens of medical centers/health organizations/universities/dental schools including CHOP (Paul Offit's hospital), Johns Hopkins, The Cleavland Clinic, our pharma friends at Johnson & Johnson and Glaxo Smith Klein, Immunize.org, media corporations Tribune and Gannett, The World Health Organization and even one visit from the Nuclear Regulatory Commission

Apparently the Department of Justice is curious to know when and if the Evidence of Harm movie will be coming out.



Here is my blog traffic graph for the last three years.



2005 - nice little blog with decent traffic. 2006 - took a break from blogging for most of the year. 2007 - Started to write again. Feb/March stats broke but I didn't notice. April was Autism Awareness Month (Damn that is a lot of awareness). May - residual autism awareness?? June - suddenly I am twice as fascinating as I have ever been on my best month! July - on track to have 8,000 visitors despite the fact that I have been on vacation most of the time.

As much as I would love to believe that it is my brilliance that people are coming for, it is probably a safer bet that more people (and more people in positions of power to do something) are awakening to the reality that autism is preventable and treatable and are taking valuable time out of their day to investigate for themselves.

Last month I said that the tide had turned. I think I might have been righter than I thought I was and that the tide might start moving faster than I had anticipated.

Even if I had 40 hours a week to sort all this stuff out, I don't think I could do a decent job. I am just going to start posting references to stories with out much comment just so I can get as much out as possible.

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.

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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.