November 2, 2005

An Update from David Kirby

Last Sunday at the Long Beach DAN! Conference, David Kirby spoke, updating the group on the latest on his book, Evidence Of Harm, and where the vaccine/autism story has come to date. Afterward was good enough to sit down with me and answer a few questions.

-----------------

Mr. Kirby announced that the paperback version of the book will be coming out in March, and will contain updates to the story since the book was published. St. Martin’s press has selected the book as one in a four-title collection for a book club series.

-----------------

The movie rights to Evidence Of Harm have been sold to Participant Productions with Nick Wechsler producing the project. The film is currently in development with plans to begin filming next year. Participant is a self-described socially conscious production company committed to bringing films to the screen that “Change the world one story at a time”. Among their current projects are North Country, with Charlize Theron, and the Good Night, and Good Luck, the story of Edward R. Murrow’s battle with Senator Joseph McCarthy, with George Clooney,

-----------------

Last week Mr. Kirby was invited by professors at NYU Law School to discuss the topic of thimerosal in vaccines at a project they are undertaking on medicine and human rights. Professor Mary Holland and her colleagues are viewing the thimerosal story in terms of potential human rights violations, with an eye toward presenting their findings to the United Nations.

-----------------

During his speech he touched on the current Bio defense bill, which will create a federal health department that would not be subject to the Freedom of Information Act, but would create public health policy. This department would have the power to order mandatory vaccinations of the general public, but its decision making process would not be open to public scrutiny.

Mr. Kirby points out that if FOIA revocation had been in place 5 years ago, we would know little about government action in regards to thimerosal and Evidence of Harm would not have been written.

-----------------

He also announced that Senator Joseph Leiberman would be introducing legislation to force the Center for Disease Control to open the Vaccine Safety Datalink to researchers, as the autism community as been asking. The CDC has restricted access to the VSD since Mark and David Geier discovered a link between thimerosal containing vaccines and autism using the VSD in 2004 in violation of federal law. Indeed the Lieberman legislation was introduced on Monday.

Mr. Kirby also told the crowd in attendance that has learned that the day that the Geiers last accessed the VSD, an order had been given by the CDC that as soon as they left the building, the data was to be removed from computer system. This order was carried out, and the following day the database was transported to the headquarters of the CDC and subsequently placed with a private company where it could not be accessed by FOIA.

-----------------

In addition he discussed the findings of the Burbacher study done by the National Institute of Health and published this spring. Burbacher's primate study expanded the understanding of how thimerosal behaves in the body in comparison to the way methyl mercury behaves in the body.

EPA safety limits for mercury are based on observations of the toxicity of ingested methyl mercury. It had previously been thought that because the ethyl mercury in thimerosal clears the blood stream in about the third of the time that methyl mercury does, and because ethyl mercury was a larger molecule, which made it more difficult for it to cross through the blood brain barrier, that ethyl mercury (the type in thimerosal) was the safer form of the two.

Burbacher's study confirmed that thimerosal did indeed clear the blood stream more quickly, and had more difficulty entering the brain, however it was discovered that once ethyl mercury was in the brain it oxidized and converted into inorganic mercury at a much higher rate than methyl mercury. From previous studies from Burbacher and NIH, we know that while organic mercury in the brain has a half-life of around 30 days, inorganic mercury in the brain has a half-life estimated at 20 years.

This of course would mean that the EPA, and all other government safety standards for methyl mercury would be woefully lacking in regard to thimerosal.

When the study was published in Environmental Health Perspectives, an NIH journal, the CDC issued a press release that stated that it showed that thimerosal cleared the blood faster than, and entered the brain less readily than methyl mercury, but made no mention of the fact that when the primates were sacrificed, the subjects given thimerosal had 4 times the inorganic mercury in the brain than the subjects who ingested methyl mercury.

The press picked up on the press release, printing that the mercury in vaccines was safer than the mercury in fish, when in fact the study had found that the opposite was true.

Burbacher was upset by this and demanded that the CDC issue another press release correcting the record. The CDC did so, but when the new press release was issued, it still made no mention of the finding that thimerosal was 4 times as toxic to the brain as mercury in fish.

Mr. Kirby has discovered that the CDC had hired a Triangle Park PR firm to issue the public statements and that the firm also represented several vaccine manufacturers.

-----------------

A few of Kirby’s detractors have written that he had previously been associated with Act Up, the AIDS activist group considered by many to be extreme in their tactics. I asked Mr. Kirby about his association with the controversial group, and he said that he had never been affiliated with Act Up.

Mr. Kirby told me that he had worked on David Dinkins campaign in his run for mayor in 1986 and during that time part of his responsibilities were to act as liaison to the AIDS support and awareness groups in the city. Act Up was one of those groups.

From 1990 to 1994, he worked for The American Foundation for Aids Research (AMFAR), a main stream AIDS research fund-raising organization for which Elizabeth Taylor acts as a spokesperson, where he again acted as liaison to other AIDS groups Act Up included.

During his tenure in both of these positions, he reports that he attended a few Act Up meetings as a representative of Dinkins campaign or AMFAR, but that he never did any work for them nor attended any of their demonstrations. He actually said that a few of their members had criticized him for being too mainstream in position.

Mr. Kirby reports that he did write one AIDS related article about a group of AIDS protesters that were arrested and not allowed access to their medications while in custody.

He had not heard of the accusation of his involvement with Act Up, and assumes that whoever started the rumor had confused Act Up with AMFAR.

10 comments:

Aaron Kristie and Aidan said...

Ginger,
You did a wonderful job reporting this information and how kind of Mr Kirby to take the time to share it with you. Wonderfully written and powerful testimony.
Kristie
mommy to Aidan 2.4

JP said...

Two things that Kirby said that I think somewhat misrepresentative:

The CDC has restricted access to the VSD since Mark and David Geier discovered a link between thimerosal containing vaccines and autism using the VSD in 2004 in violation of federal law. Indeed the Lieberman legislation was introduced on Monday.

Mr. Kirby also told the crowd in attendance that has learned that the day that the Geiers last accessed the VSD, an order had been given by the CDC that as soon as they left the building, the data was to be removed from computer system. This order was carried out, and the following day the database was transported to the headquarters of the CDC and subsequently placed with a private company where it could not be accessed by FOIA.


Yes, the CDC has "restricted" access to the VSD and prevented the Geiers from getting further access to it. This is due to the fact that the Geiers violated the terms of their VSD research agreement by merging records in a way that could breach patient confidentiality. Why they would do that is confusing to me, because no epidemiologist I've spoken to says it would be necessary to do so. However, if you want to find out potential plantiffs for lawsuits against drug companies (that is the Geiers' business, after all - they are NOT epidemiologists by trade) then being able to identify autistic children with a high thimerosal exposure rate would be beneficial.

I've also confirmed through multiple sources within the CDC that while the dataset the Geiers asked for was deleted, the actual raw data used in the Verstraeten study, et al., is still open and available if anyone wants to use it. This notion that the VSD is somehow closed or unavailable to researchers is untrue as best as I can tell, and it's certainly not prohibitive financially to obtain that data if one was inclined to want to know the answers.

Burbacher's study confirmed that thimerosal did indeed clear the blood stream more quickly, and had more difficulty entering the brain, however it was discovered that once ethyl mercury was in the brain it oxidized and converted into inorganic mercury at a much higher rate than methyl mercury. From previous studies from Burbacher and NIH, we know that while organic mercury in the brain has a half-life of around 30 days, inorganic mercury in the brain has a half-life estimated at 20 years.

The fundamental question that Burbacher posited in his study was "is methylmercury exposure a suitable reference point for thimerosal". The answer to that question, in his mind, was no.

The broader question that Burbacher barely touched on in his paper is whether the higher total amount of inorganic mercury left in the brain of the thimerosal primate group is meaningful. Burbacher is trying to insinuate that it is, apparently - but there's absolutely no consensus that the amount of inorganic mercury left in the brain is harmful.

The bit about who wrote the press release is irrelevant, because when you hire a PR firm you proof and approve anything said by them anyway.

Anonymous said...

Hi Ginger,
Upon further investigation the CDC's 21 million dollar database contract went to Constella Corp.
A private company that procures for the BioTech industry(Future Corp division) and participates in clinical trials.
They are in effect a service corporation for Pharma. So our taxpayer funded adverse data is secure in the hands of the very people who are covering up the Thimerosal damage. If this isn't a huge conflict of interest I don't know what is. Government corruption at it's worst and a crime against our children.

Wade Rankin said...

JP,

So far I have heard no representative of the CDC categorically deny the ridiculous conditions Mr. Kirby describes in his book under which the Geiers were given "access" (and it could hardly be called that) to some of the data. Were these restrictions placed on Dr. Verstraeten? I don't think so. His work cannot be authenticated or replicated unless that access is granted.

As for the merging of data sets, my understanding is that the Geiers were only given access to a data set that did not have any identifying information. How could they merge anything that would breach confidentiality? That excuse lacks any credibility.

As for the continued availability of the "raw data," we've all heard too many different stories. I would really like to see something official from the CDC. Have they issued a real statement that we can judge for ourselves, or do we only have second-hand reports from unnamed sources?

Robin Nemeth said...

I don't understand the statement about Lieberman's legislation that was introduced. But then I am no lawyer. It was my understanding that a law was a law and it should be enforced. And I had thought that there was a law which said in effect that the VSD data was paid for by the public and should be available to anyone.

Why would they need to pass legislation in order to have an existing law enforced?

This concerns me for some reason, in the same way that it concerned me when I first discovered that Judd Gregg had been asked to investigate the thimerosal issue, by reading Special Counsel Scott Bloch's letter to him of May 20, 2004. It gave me a good feeling that at last perhaps something was being done, but then for the next year and a half absolutely nothing happened.

Another concern I have is that the data, if it is ever turned over, will be the same data, (unaltered), that was gathered and looked at and evaluated by Verstraeten in his initial study. Perhaps I am paranoid, but wouldn't it have been possible for the people holding the data to have done just about anything at all to it in the intervening years?

Ginger said...

JP,

As with most things, I am with Wade on this one. I will add my two cents to his comment.

You seem to want to make this about the Geiers, so ok.

As far as I know the Evidence of Harm account of the Geiers access to the VSD, and the letter from the CDC to the HMOs whose data was being examined, are the only published version of the events in question. If true, the “access” they were given was a joke, they were not allowed to take anything into the computer room with them (if they were not even allowed a pen, I am not sure how they would smuggle the large stack of CDs it would have taken to copy the database) and the first that they heard of the accusation of data theft was when an HMO included a copy of the letter that the CDC sent to them when revoking their permission for the Geiers to use their data. I know of no other statement by the CDC to the Geiers or to anyone accusing them of data theft, nor any official inquiry into the accusation in which the Geiers would have a chance to clear their names. The Geiers swore to David Kirby that they did nothing of the kind. The HMOs in question were satisfied with the Geiers statement and have reinstated their permission for them to access their data.

My interpretation is that the CDC made a preemptive attempt to discredit the Geiers so that they could not publish their findings.

If you know of any other published information, or of any other investigation into the incident, let me know and we can really dig in and figure out what happened as best we can.

BUT… for the sake of the argument, let’s say the Geiers busted into the VSD, Gangsta Style, holding the poor IT guys at gun point while they raped and pillaged the data. Then they should be punished and not been given access to the data again. This still does not justify moving the VSD into a private company where NO ONE can access it in violation of federal law.

there's absolutely no consensus that the amount of inorganic mercury left in the brain is harmful.

WHICH IS PRECISELY THE PROBLEM THAT WE PARENTS ARE COMPLAINING ABOUT!

Ethyl mercury has been injected directly into the bloodstreams of most of the world’s population while in early childhood for three quarters of a century and the medical community has not bothered to come to a good understanding of how much is to much????!!!!

Pardon my French, but…

What the Fuck?!

The medical community has come to the consensus that NO amount of lead is safe, and mercury is hundreds of times more toxic than lead.

So the question is, WHY HASN’T THE MEDICAL COMMUNITY COME TO A CONSENSES ON HOW MUCH ETHYL MERCURY IS TO MUCH?

And I don’t mean to be disrespectful of you JP, but come on… your argument is pretty silly.

If the EPA says that X amount of mercury in the brain is dangerous, then 4 times X mercury in the brain is 4 times as dangerous. If the “medical community” cannot come to a consensus on that, then they are either morons, they are in denial because they don’t want to believe that they could have been causing brain damage in children, or they are corrupt.

The bit about who wrote the press release is irrelevant, because when you hire a PR firm you proof and approve anything said by them anyway.

It is relevant because it is just another illustration of the conflict of interest that is found at every level of this issue.

And as far as this….

I've also confirmed through multiple sources within the CDC

…business is silly too.

As an anonymous blogger you are certainly able to discuss what is already on the record and offer your analysis, but I don’t consider an anonymous blogger quoting anonymous sources at the CDC that cannot be confirmed as information that can be considered anything other than internet rumor. If you would like to come out from behind your curtain and quote your anonymous sources, then we can evaluate you as a person, whether or not you have any conflicts of interest and what they are, and whether or not you are a trustworthy person, then you can offer anonymous sources, but there is no such thing as an anonymous reporter.

The CDC on their web site has said that the VSD is open for people to apply to, but as of yet they have not allowed any one access. Again, we feel that this is just another example of the CDC doing one thing and saying another. This does not lend credibility to them in the autism discussion, nor put our fears to rest that they are hiding information from parents and don’t want the public to know about what they know about the connection between mercury and autism.

Ginger said...

Robin,

My guess is that it closes whatever loop holes the CDC was claiming it could use to justify the move, but I have been out of town for a week and have not even looked at the legislation, so I am just pulling that out of my butt.

Anonymous said...

Thanks for the great accounting of Kirby's talk. I've just started blogging about my (frustrating) experience with my own dear son who is autistic. Your blog is one to aspire to! Glad to know that there are others in this game, too. We're at autismwindow.blogspot.com Libby

JP said...

Ginger,

On who I am and my confidential sources - the reality of my situation is that the people I have spoken with in the CDC have asked that they remain off-the-record. I respect that. What it allows them to be is more candid than they would be in their official roles, and saves me the hassle of having to go through government "channels" to talk to them. I can say that the people I talk to on a semi-regular basis are people that should know about the state of things like the VSD and other immunization-related activities within the CDC.

If you dismiss what I say at face value because I don't wish to give you access to my personal information or place of employment, well, then so be it. For a number of reasons, I don't feel like being "outed". If you wish to convince yourself or others that I have some agenda other than just being a parent interested in the subject, then go ahead. I certainly can't stop you from doing so.

But the irony is that most of what I've said about the VSD, for example, has been mentioned several times by the CDC. The VSD *is* open for business, it *is* available. Look it up. It's in the hands of a private company, but if someone really wanted to know the answers they could pay for access to the VSD. Or ask another HMO to share their data.

Let me ask you, Ginger - do you know of any than the Geiers that have applied to access the VSD? What were the status of their applications? As far as I know, nobody has - people just prefer to chant "open the VSD" and "the government is covering up" instead.

Ginger said...

JP,

You have every right to keep your identity private, as does any one at the CDC. But the trade off is that if you do, nothing that you ADD to the record, that cannot be confirmed by an actual person, can be fully trusted.. I am not dismissing what you say, but I feel that you could say anything you want and there is no way to confirm if it is true or not.

In this case, as I mentioned in the paragraph following the one you reference, the CDC’s own web site already has that information posted publicly, so I am not sure why you would need to cite inside sources, unless of course they contradict the public statement, which they don’t. The fact that the CDC claims that they will allow researchers access to the VSD is already on the record. That is also the claim that is in dispute.

The record shows that no one has been granted access.

When I spoke to David Kirby last week I asked him if he knew of anyone who was trying to get into the VSD. He told me that he thought the Geiers were. I didn’t add that to my article, because I thought I would try to see if I could get confirmation on that before I published it, because if I am going to try to add something to the record, I want to make sure it is solid and can be confirmed. He didn’t say “they are”, he said “I think they are”.

I will let everyone know if I get any more solid information than that.