Media Becoming More Alert: Becky Estepp Schools Dr. Mark Segiel on Fox

This is why parents are not usually allowed on TV to debate docs. Because they expose the ignorance of the physicians whom the networks are trusting to bring them accurate health information.

And Becky was even too polite to point out that the study was in Pediatrics, not the New England Journal of Medicine.

Which one of these two people would you turn to with your vaccine questions?

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.

TAKE ACTION NOW - REQUEST THAT THE AUTISM-VACCINE CONCERNS HAVE A SEAT AT THE TABLE!

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.

CONTACT

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
daniel.salmon@hhs.gov

UPDATE:

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.

Kelli

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.

Sincerely,
Ginger Taylor, M.S.
AdventuresInAutism.com

Critique of JnJ's Rhogam Study

Earlier I had reported that Johnson and Johnson had cleared its own thimerosal containing product of any connection to autism. Now the critics are speaking:

Findings

The review found deficiencies in sample quality, including small and unmatched controls and inadequate methods for determining mercury exposure from RhIg brands. Poor sample recruitment design likely produced under-representation of mothers receiving RhIg, the key exposure variable. Alterations in sample composition during implementation, contravening accepted research standards, were detected, as were factual errors on vaccines, RhIg, and mercury. The lead author has many undisclosed conflicts of interest. These problems may underlie the negative finding on association between RhIg and autism. Additional calculations of the data, not done by Miles & Takahshi, show a 71% higher rate of Rh immune globulin exposure in children with autism relative to unaffected siblings, in contradiction to the original findings but consistent with other studies.

Conclusions

The Miles & Takahashi conclusions are questionable based on research quality issues. Recalculation of the data shows an increased risk of autism from Rh immune globulin. Definitive conclusions await higher quality studies.

Up until last month I have associated the name of Johnson & Johnson "A Family Company" with band-aids for boo-boos and gentile no tear shampoo for babies.

Now they are the big Pharma co that put mercury in my body while I was pregnant, and then paid for a deceitful study to say that injecting a neurotoxin into a pregnant women is not neurotoxic to her developing fetus.

Does the medical establishment and pharma understand that they are digging their own grave? Do they understand that people are paying attention to what they are doing?

Do they understand that people don't believe them any more?

The NAA/SafeMinds press release:

Genetics Journal Thimerosal/Autism Study the "Best Science Drug Company Money Can Buy": Critique of industry-funded immune globulin study uncovers sample manipulation, design flaws

Nixa, MO - An analysis released today critically examined a recent industry-sponsored study ruling out a link between autism and Rh immune globulin (RhIg) injections, some of which contained the mercury-based preservative thimerosal. Besides extensive design flaws, the analysis uncovered manipulation of the study sample, so that earlier data revealing a positive autism-RhIg association was concealed.

“This study is just another example of the pharmaceutical industry’s corruption of research to suit its own purposes,” according to National Autism Association president and parent Wendy Fournier. “They back the study designs that give the desired results of no harm.”

Johnson & Johnson, parent company of Ortho Clinical Diagnostics which manufactures the once mercury-sterilized RhIg shot RhoGAM, funded the study.. It was published in the May, 2007 American Journal of Medical Genetics (AJMG) by Judith H. Miles and T. Nicole Takahashi of the University of Missouri.

A University press release entitled, “Study Finds No Link Between Autism and Thimerosal in Vaccines” suggested deliberate deception as immune globulins are not vaccines. J & J’s involvement in the study was not disclosed in the press release, and J&J’s role as the parent of Ortho and the largest manufacturer of mercury-containing RhIg were not communicated in the published paper. Dr. Miles has served as a paid consultant in autism-related litigation involving RhIg, which was also not divulged.

The critical analysis, conducted by the nonprofit research organization SafeMinds, examined earlier data from a 2005 poster presentation of the Miles and Takahashi research. They found that between the 2005 and 2007 versions, the control groups changed and major portions of the original autism sample were removed. Calculations based on the original data indicate that children with autism “were 71% more likely to have been exposed to RhIg in utero than their non-ASD siblings,” according to the SafeMinds analysis.

NAA’s Fournier points out that the RhIg study fits a recurring pattern for thimerosal research with drug company/researcher ties. Manipulation of data to reach a desired conclusion was seen in CDC studies conducted in 2000 showing a relationship between thimerosal-containing vaccines and a range of adverse neurological effects including autism. The data was manipulated to lower the relative risk factor before publication in the journal Pediatrics in 2004. Lead investigator Dr. Thomas Verstraeten left the CDC to work for vaccine maker Glaxo-Smith-Kline in 2001 while the data alterations were ongoing, but his employment was not disclosed by the journal. Likewise, Dr. Michael Pichichero, an Eli Lilly-funded researcher and holder of numerous vaccine patents, tried to clear thimerosal as harmful by conducting a blood mercury evaluation after infant vaccination which missed peak blood levels, had a sample size too small to detect susceptible subgroups, and failed to address implications of the findings for long term mercury deposition in the brain. His industry ties were not disclosed by the journal, The Lancet.

“While this latest RhIg effort is the best science drug money can buy,” points out Ms. Fournier, “NAA feels that the public and families with autism deserve better quality studies. This is a critical product safety issue.” RhIg is given to approximately 15% of all pregnant women.

To read the entire analysis, go to www.safeminds.org. For more about autism, visit www.nationalautism.org.

NAA and SafeMinds to AS: "Hey... What the Hell"!?

NAA and SafeMinds want Autism Speaks to explain themselves and their decision to distance themselves from Katie and her comments. I would love to hear the answer to that as well.

Statement from the National Autism Association (NAA) and SafeMinds regarding board member Katie Wright, her recent interview with David Kirby and subsequent statement from Autism Speaks

The National Autism Association (NAA) and SafeMinds compliment Katie Wright for her thoughtful commentary in a recent video interview. We were surprised by a subsequent announcement by Autism Speaks about Katie, whose son Christian was the driving force behind the creation of Autism Speaks by her parents, Bob and Suzanne Wright. The announcement stated that Katie should not be considered a spokesperson for Autism Speaks and her views do not represent those of her parents or their organization.

In her interview with Evidence of Harm author David Kirby, Katie speaks from her heart with regard to her son's diagnosis of autism, the struggles and hardships she and her family have endured as a result and what she feels should be the direction of autism research. In the interview, Katie makes clear she is expressing her views as a parent and not as a representative of Autism Speaks. It is odd that an organization would issue a statement counteracting something that doesn’t exist. A more serious concern is that Katie's substantive points on autism research and causation, which are shared by so many families, are apparently being opposed by an organization that has stated its commitment to pursuing all reasonable avenues of science.

NAA and SafeMinds offer our support of Katie, both as a parent and as a board member of our respective organizations. When Katie spoke to David, she represented the thoughts of thousands of parents who believe they delivered their healthy infants to a doctor’s office for government mandated vaccines only to witness their lapse into sickness and regression into autism.

Parents bring a wealth of expertise to science and treatment discussions because they are the ones confronted on a daily basis with the needs of their children and as such, their opinions should be actively solicited and embraced. Parents like Katie add perspective and urgency. They play an essential role in directing precious resources towards the most promising ways that will most quickly improve the lives of those suffering with autism now and prevent its occurrence in the future.

In keeping with these principles, our organizations ask Autism Speaks to clarify the rationale for issuing their announcement on Katie. We ask them to assure the community that meaningful autism research on the role of the environment, including vaccines and their components, will assume dramatically greater and expedited prominence in its scientific and treatment agendas.

To view the interview between David Kirby and Katie Wright go to www.autismmedia.org

To view the recent statement from Autism Speaks regarding this interview see http://www.autismspeaks.org/wrights_statement.php
For information regarding the National Autism Association or SafeMinds go to www.nationalautismassociation.org or www.safeminds.org