April 9, 2008

Autism Parents Need A Seat At The Vaccine Table

This week I have been complaining that the actual 'vaccine debate' only began on the Larry King show last week. This is just another example of the closed debate that health authorities have where they ignore the points that parent want to make and keep from having to answer the questions parents are asking.

Call the NVAC and tell them it is time to deal with the problems and it is time to give us a seat at the table so that the real debate can continue where it counts.

From Safeminds:

Consumer Representation Squashed at Upcoming National Vaccine Advisory Committee (NVAC) Safety Group Meeting

The National Vaccine Advisory Committee (NVAC), Vaccine Safety Working Group (VSWG) will meet for the first time on April 11, 2008 in Washington DC. The autism community's vaccine safety concerns are not represented within this panel.

The charter for NVAC calls for participation by representatives from "parent organizations concerned with immunization." In light of the recent VICP award to the Poling family, and other similar cases being discovered, as well as the continued growing concern regarding the autism vaccine link, SafeMinds has requested of NVAC, without response, an expansion of the current consumer representation of this group to include one of SafeMinds Directors (Dr. Vicky Debold, or Mr. Mark Blaxill) to more accurately balance and diversify views essential to the task of this workgroup.

Currently, adequate consumer representation with regard to vaccines and their safety is trumped by the over-representation by those with a financial stake in increased vaccination (industry and providers) and with a bias in favor of traditional population-based immunization policy.

SafeMinds continues to advocate for the following in order to protect our children from harm.

* A comprehensive study of vaccinated vs. unvaccinated populations, or alternatively vaccinated populations is needed to accurately determine harm from mercury in vaccines and other toxicants. The Amish are one such group and there are others.
* · Vaccine studies must be conducted by individuals free from conflicts of interest with the vaccine industry and public health officials whose livelihood depends on vaccine promotion.
* The vaccine schedule must be tested for safety in terms of multiple vaccines being given during one visit and the overall number of vaccines in use for long-term adverse effects - it has never been done and should be integral to vaccine safety monitoring.
* Greater consumer representation within the work group and specific consumer representation of the autism vaccine concerns by SafeMinds Directors Dr. Vicky Debold and Mr. Mark Blaxill.


Concerns can be sent to the following NVAC representatives. All requests should be copied to Dan Salmon to be a part of the official record for the April meeting and must be submitted by 4pm EST on April 9th.


Guthrie S. Birkhead, MD MPH
Chairman, NVAC
sxc17@health.state.ny.us; fax 518 486-1455

Bruce G. Gellin, MD, MPH
Executive Secretary, NVAC
bruce.gellin@hhs.gov; fax 202-690-7560

Daniel Salmon,
Vaccine Safety Specialist


From Kelli Ann Davis:

Posted by: "Kelli Ann Davis" kellianndavis@hotmail.com
Wed Apr 9, 2008 10:45 am (PDT)

Just got out of a meeting this morning with Dan Salmon, Bruce Gellin and Dr. Raub (Secretary Leavitt's Science Advisor) on this issue.

As a result of on-going communications over the past 5 weeks, the Panel now consists of a section entitled "Interacting with the Public" and includes Barbara Loe Fisher, Peter Bell, Lisa Randall (Voices for Vaccines) and Catherine Morris (Keystone -- Business focused on Public Engagement strategies)

There is also an hour segment after this panel's presentations for public comment.

During my meeting today, I made know my specific desire to have Mark Blaxill be a part of the Vaccine Safety Working Group.

Dr. Gellin assured me that the composition of the committee is not "set in stone" and that they are looking for feedback during this meeting to get an overall view of the requests that come in regards to specific suggests for the addition of public members to the Working Group.

I would strongly suggest that people call and ask for Mark's addition to the Working Group.

I will be first up during public comment time and I plan on reiterating my request for Mark once again.

Bottom Line: They know this is important in the wake of the Hannah Poling case and are open to our suggestions.


My Letter:

Dr. Gellin, Dr. Birkhead and Mr. Salmon,

I am an autism blogger and autism mom who has been harshly critical of HHS and CDC for their actions and inactions in the vaccine/autism story.

It is my understanding that you are considering adding Mark Blaxill as an addition to the Vaccine Safety Working Group.

I cannot encourage you strongly enough to take this action.

Mr. Blaxill is a bright and distinguished member of our community. His addition to the process of vaccine safety would go a long way toward rebuilding the trust that parents like me have lost in HHS.

I would love to be able to tell my readers that HHS is beginning to take vaccine safety seriously by seating someone at the table who will ask the hard questions that are needed to ensure the health and safety of American children.

Ginger Taylor, M.S.


Anonymous said...

Hey Ginger,

Just wrote you an e-mail with an update on this issue.

Let me know if you got it!


Thing1Thing2Mom said...

Hi Ginger,

I am anxiously awaiting an update on this. I have been watching the SafeMinds site as well.

If their request is not met, I think we should all start a letter writting campaign to our representatives.

I went sent letters to mine last night as a heads up on this. My letter may be viewed at http://theeducatedparent.blogspot.com.

Thanks for keeping us imformed.