By Kelli Ann Davis
Last Friday, the National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group met in Washington DC. The stated purpose of the meeting was to “review the current federal vaccine safety system and develop a White Paper describing the infrastructure needs for a federal vaccine safety system to fully characterize the safety profile of vaccines in a timely manner, reduce adverse events whenever possible, and maintain and improve public confidence in vaccine safety.”
Two days before this meeting took place, I learned in a private meeting with organizers that Lisa Randall (Voices for Vaccines) had been asked to participate in a segment entitled, “Interacting with the Public.” At that time, I had no idea who she was or what Voices for Vaccines was all about which made it quite difficult to draw any conclusions about her addition to the panel on the spot.
That didn’t last very long. Once word spread about Lisa’s involvement in the upcoming meeting, private e-mails arrived in my inbox linking her with the Immunization Action Coalition. Soon thereafter, JB’s piece Fools Rush In hit the blogosphere. Suddenly the picture was becoming clearer.
At the meeting last Friday in DC, Voices for Vaccines provided an information sheet detailing their mission statement and listing their steering committee members.
Joseph Bocchini, MD – American Academy of Pediatrics
Douglas Campos-Outcalt, MD – American Acedemy of Family Physicians
Anna De Bois – Association of State and Territorial Health Officials
Mark Kane, MD – Consultant, Seattle WA
Frankie Milley – Meningitis Angels
Paul Offit, MD – Vaccine Education Center
Walter Orenstein, MD – Emory Vaccine Center
Denise Palmer – Families Fighting Flu
Trish Parnell – Parents of Kids with Infectious Diseases (PKIDS)
Amy Pisani – Every Child By Two
Gary Stein – Families Fighting Flu
L J Tan, PhD – American Medical Association
Jon Temte, MD – American Academy of Family Physicians
Deborah Wexler, MD – Immunization Action Coalition
Alan Hinman, MD – The Task Force for Child Survival and Development
Based on the above information and coupled with prior statements made by Lisa Randall over the last several years, one has to wonder what NVAC was thinking when they decided to include her in this pivotal meeting! Are they really trying to engage the public, or are they just trying to conjure up the kind of “public” representative that they’d prefer?
Consider the following:
• Voices for Vaccines is a brand new organization. It isn’t really officially "up and running" in any visible way. What contributions have they generated in the past to warrant their "seat at the table" and represent the “public” when others (e.g. Mark Blaxill from Safeminds) are obviously more suited to the charge and have a proven track record when it comes to thoughtful commentary on vaccine safety issues.
• Voices for Vaccines does not really represent anything and actually stands opposed to the kind of transparency needed to engender trust within the autism community when it comes to the government and their commitment to seriously tackle vaccine safety issues. Detailed information on their mission statement and membership were practically non-existent leading up to Friday’s meeting and we still don’t know what the sources of their funding are. Repeated attempts to get further clarification directly from Mark Rosenberg (Executive Director, The Task Force for Child Survival and Development) were unsuccessful due to his unwillingness to divulge any information; the Voices for Vaccines website is registered under his organization. Read more HERE.
• Voices for Vaccines’ emotionally charged rhetoric does little to produce any kind of constructive dialogue in what is already a highly charged environment of vaccine safety issues. Here’s what they said on their fact sheet from Friday:
"Rising concerns, mostly non-science based, about the safety of immunizations are threatening the gains we have made in childhood immunization. This is a global problem, not just a problem for the United States. Myths arising in other counties, such as MMR purportedly causing autism in the United Kingdom, have impact on attitudes and practices in the United States. By the same token, issues arising in this country, such as the notion that thimerosal in vaccines causes autism, affect what happens in the rest of the world. Unfortunately, the loudest voices and most visible faces addressing immunization are often those attacking the safety of specific vaccines or those generally opposed to immunization rather than those who support vaccines' benefits.
• Voices for Vaccines is an organization which has demonstrated minimal interest in considering legitimate vaccine safety questions; any discourse that may jeopardize the status quo is automatically equated to an "attack" on vaccines in general. Inviting this organization to take up this important slot on the Vaccine Safety Working Group only perpetuates mistrust between parents of vaccine-injured children, who are asking for answers to their legitimate questions, and government officials, who are in charge of finding them.
• Voices for Vaccines is solely focused on preventing infectious disease and therefore they have an inherent bias against seriously addressing issues surrounding adverse events. It’s like inviting someone who has a vested, financial interest in promoting air travel to be involved in an investigation by NTSB. In other words, promotion (vaccine uptake in this case) is not the focus of this Working Group and therefore Lisa's "viewpoint" does nothing in terms of adding productive information to the discussions aimed at identifying and resolving specific safety issues. In fact, she is on public record referring to any parent and/or individual as "not pro-vaccine" and as an "anti-vaccine activists" simply when they raise legitimate safety questions.
It’s clear that Lisa Randall’s role should have been limited to that of public commentator rather than invited participant but unfortunately we can’t undo what’s already been done.
What we can do is launch a concentrated effort to get the government to ask for better public representation. So that’s why I would ask you to join me in requesting that these officials appoint Mark Blaxill, Vice-President of Safeminds to the Working Group. Mark would be a far better public representative on this critical issue. And it’s the kind of role he’s playing in other areas; he's recently been appointed to the Strategic Planning Working Group (SPWG) for the IACC based in large part on his vast experience in the strategic planning arena as well as his respected position within our community.
To give you an idea for why I think Mark would serve the Vaccine Safety Working Group well, here are his recent comments on the NYT article by Tara Parker Pope. This short post gives an excellent overview of his straightforward, uncompromising dedication to excellence and the pursuit of truth:
"Thank you Tara for discussing this issue with openness and honesty. The concern we should all have in this discussion is to promote childhood health. We should not be distracted by policy abstractions and political agendas. Promoting vaccine safety requires an unbiased investigation of the risks and benefits of these interventions. Compromising those investigations by overly solicitous defenses of product marketers and the political agendas of public health bureaucracies is not wise public policy. To keep children healthy we need open inquiry and honest assessment of past and future policies. And when we need to confront the inconvenient truth of vaccine damage, responsible management of health policy demands that we do so without bias. The reality? Too many children are sick. We need to understand why."
In the weeks leading up to this meeting, several of us pushed hard to incorporate “From Children Last to Safety First: A White Paper On Vaccine Safety (Prepared For The Blue Ribbon Panel On Vaccine Safety HERE) into the agenda and we were successful! Let’s continue the push and get Mark onto the Working Group.
In the meantime, I think it’s imperative for organizations like V4V, Families Fighting Flu, Every Child By Two, PKIDS, IAC and their like to remember these three facts:
1.) Classifying parents of vaccine-injured children as "anti-vaccine" is misleading and false. Our children were injured because they were vaccinated;
2.) Promoting vaccine safety has absolutely nothing to do with the issue of whether vaccines are successful in protecting against infectious diseases -- they are two separate issues; and
3.) It's only when safety issues are ignored that parents like us are eventually forced to weigh the risk of safety against the risk of infectious disease and the two issues come together
Again, please help get Mark Blaxill appointed to the Vaccine Safety Working Group by calling the National Vaccine Program Office (NVPO) at 202.690.5566 and by e-mailing:
Bruce Gellin, Director of National Vaccine Program Office email@example.com
Dan Salmon, National Vaccine Program Office firstname.lastname@example.org
Thanks and we’ll keep you updated regarding any progress!
Kelli Ann Davis is an autism advocate in Washington, DC.