NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006

[Guest guest]

From: " A-CHAMP Action Team " <info@...>

Date: April 30, 2006 12:18:04 PM EDT

Subject: NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD)

- May 4, 2006

Reply- " A-CHAMP Action Team " <info@...>

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4,

2006

 

We have just learned the following and we thought all members of the

community should know about this important NIEHS meeting: 

 

Use of the Vaccine Safety Datalink (VSD)

to assess time trends in autism: Feasibility and study design

considerations

National Institute of Environmental Health Sciences

and

Centers for Disease Control and Prevention

Building 101, Rodbell Conference Room A-B-C

May 4, 2006

We don't know much but this may be a public meeting (this is not

confirmed) and we have had difficulty in learning about this meeting,

that we believe includes members of the autism community.  The VSD is a

database maintained by the Centers for Disease Control ( " CDC " ) through

a contract with private HMO's. The VSD was the basis for the CDC's

infamous " Verstraeten " Study that was published in Pediatrics and was

used by the Institute of Medicine ( " IOM " ) to conclude (incorrectly we

believe), that vaccines are not associated with the epidemic of

neurodevelopmental disorders or autism, and to recommend that research

dollars be directed to other areas. The IOM ignored sound opinion by

epidemiologists, confirmed by Verstraeten himself in a letter to

Pediatrics, that his study could not be used to disprove an association

between thimerosal-containing vaccines and autism, and that it was a

" neutral " study. The CDC was severely criticized by another IOM panel

for its handling of the CDC and recommendations were made for

independent access to the VSD. The VSD has not been made available to

claimants in the " Omnibus Autism Proceeding " in which 5000 petitioners

have claimed that vaccines caused autism and other neurological

disorders. Attempts by independent researchers to obtain access to the

VSD have been frustrated. The CDC has contracted to give custody to

private corporations so that the public cannot gain access to it by way

of the Freedom of Information Act.

 

We encourage every member of the autism and broader communities to ask

questions about this meeting, as VSD access has been a critical concern

for all of us. A-CHAMP played an important role, along with others, in

successfully persuading Congress to encourage analysis of the VSD by

placing language in legislation requiring that the government allow

independent analysis of the VSD. Senator Lieberman and others sent a

letter to the NIH encouraging new analysis of the VSD.  A-CHAMP

obtained a copy of this letter and immediately made the letter

available to everyone in the autism community by publishing it on our

web site and sending out an email message to our thousands of

subscribers. You can read the letter here:

http://www.a-champ.org/congressional_letter_2-22-06.html

 

We don't know much more about the May 4, 2006 VSD meeting, and we do

not know what process was used to make sure there exists

" representation " , if any, at this meeting from our community but we

thought you should know what we know. We do know that some members of

autism organizations were invited by the NIEHS to attend the meeting.

A-CHAMP is not a participant in this meeting but we do intend to

monitor what takes place. If we are able to learn more we will make the

information available to as many members of the community as possible.

 

Message Brought To You By A-CHAMP

Advocates for Children's Health Affected by Mercury Poisoning

See Our Action Alerts. TAKE ACTION!

http://capwiz.com/a-champ/home/

www.a-champ.org

BE A-CHAMP FOR CHILDREN!

 

 

 

 

If you no longer wish to receive e-mail from us, please click here.

J. Krakow

Attorney At Law

2001 Marcus Avenue, Suite N125

Lake Success, New York 11042

(516) 354-3300

(646) 349-1771 (fax)

(212) 227-0600 (NYC telephone)

[Guest guest]

Is this meeting open to the public? And why the short notice?

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>

[Guest guest]

.i think A-CHAMP just got news of this very recently probably

a bump in the road in the efforts of our national organizations, public and

non-profit , to get the word to our PAC, A-CHAMP...hopefully, this will soon be

addressed........

....i suggested that A-CHAMP request liaisons

from all these organizations who would be responsible for contacting A-CHAMP

about events, etc in plenty of time to get he word out....we must, absolutely

must, be an informed community...otherwise this rolling stone gathers no moss

Suzanne Messina REAACH MFVC

From: EOHarm

[mailto:EOHarm ] On Behalf Of

Cregar

Sent: Sunday, April 30, 2006 10:33

PM

EOHarm

Subject: RE: NIEHS To

Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006

Is this meeting open to the public?

And why the short notice?

NIEHS

To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006

Reply- " A-CHAMP

Action Team " <info@...>

[Guest guest]

We think it is open to the public. I have had conflicting reports on

this but the last I heard it was open.

As to the short notice - I cannot answer that question. I don't know.

We at A-CHAMP have been trying to obtain information about this meeting

for several weeks. We tried several approaches - we first had a date of

May 8 but did not know the location - we were able finally to get some

specific information yesterday. It appears that the NIEHS has not made

any public announcement or notice of this meeting. Certain

organizations received private invitations to the meeting, but that

information has not been made public, as far as I know.

Sorry for the vague answers but that is all I know. I have not been

privy to the information but I thought once I found out parents

generally should now about a meeting to consider the VSD. The process

by which participation has been elicited from parents' groups is

unclear. As far as I can tell the process is controlled by officials

connected to HHS.

Now that we have learned about the meeting several parents from A-CHAMP

and other organizations will attempt to send observers, if the meeting

is public. We will be attending if we are able to confirm that the

meeting is public. A-CHAMP is not a participant in the meeting.

Will keep you posted.

On Apr 30, 2006, at 10:33 PM, Cregar wrote:

> Is this meeting open to the public?  And why the short notice?

>  

>

>> NIEHS To Hold Meeting On Use of Vaccine Safety DataLink

>> (VSD) - May 4, 2006

>> Reply- " A-CHAMP Action Team " <info@...>

>>

>

>

>

[Guest guest]

A-CHAMP has been made aware that an NIEHS official has confirmed that

the meeting is public. We hope to get more details tomorrow and, if we

do, we will keep you apprised.

On Apr 30, 2006, at 10:38 PM, suzanne messina wrote:

>  

>               .i think A-CHAMP just got news of this very

> recently   probably a bump in the road in the efforts of our national

> organizations, public and non-profit , to get the word to our PAC,

> A-CHAMP...hopefully, this will soon be addressed........

>  

> ...i suggested that A-CHAMP request liaisons from all these

> organizations who would be responsible for contacting A-CHAMP about

> events, etc in plenty of time to get he word out....we must,

> absolutely must, be an informed community...otherwise this rolling

> stone gathers no moss               Suzanne Messina  REAACH  

MFVC

>

> From: EOHarm [mailto:EOHarm ] On Behalf

> Of Cregar

> Sent: Sunday, April 30, 2006 10:33 PM

> EOHarm

> Subject: RE: NIEHS To Hold Meeting On Use of Vaccine Safety

> DataLink (VSD) - May 4, 2006

>  

> Is this meeting open to the public?  And why the short notice?

>  

>

>> NIEHS To Hold Meeting On Use of Vaccine Safety DataLink

>> (VSD) - May 4, 2006

>> Reply- " A-CHAMP Action Team " <info@...>

>  

>

>

>

[Guest guest]



NIEHS will come under absolutely tremendous pressure from the administration, congress, both parties and industry on this issue.

Very difficult position even if they wanted to be honest brokers.

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>

[Guest guest]



How about some background here. Isn't NIEHS the agency that got the letter from the seven Congresspeople?

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>

[Guest guest]



They sure did.

All the more reason for them to be hammered mercilessly from all sides.

Who other than the autism groups and the seven members of congress wants a real answer to this question and cares enough about it to aggressively pursue this? I can't think of anyone particularly helpful to our position.

I'm not saying they won't come through- it's absolutely critical that they do.

I just think this is set for a significant battle behind the scenes.

What they are being asked to do will take a tremendous amount of courage given the history of this issue.

Got to make sure this is not "hide the bean".

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>

[Guest guest]



One problem for them. They don't know what we know. We know lots. We know people. We have assorted skills. We aren't avians that just fell off the anti-WHO mercy wagons.

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>

[Guest guest]



Absolutely true.

We must keep up the pressure.

Especially with the press and those in Congress.

Imus hopefully shall hang a few people in MSNBC effigy.

Dan Olmsted will come through as will .

The more they look dirty the more problems they will have.

We must point it out.

NIEHS To Hold Meeting On Use of Vaccine Safety DataLink (VSD) - May 4, 2006Reply-"A-CHAMP Action Team" <info@...>