NVAC ROUND TWO

By Kelli Ann Davis

Approximately two weeks ago, the National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group (VSWG) met in DC to discuss CDC’s ISO Scientific Agenda and the federal vaccine safety system. 

Several pieces were written in follow up to the meeting (Lisa Randall; David Kirby DHHS transcript; CDC Doesn't Test Simultaneous Vaccinations) and in my piece (HERE) I asked the community to make calls and send e-mails to the Director of the National Vaccine Program Office (NVPO) in an effort to place Mark Blaxill of Safeminds onto the VSWG.

This following statement is from the “draft” Scientific Agenda.  It calls into question the seriousness of government officials’ efforts to incorporate public participants into the process:

ISO obtained input from expert scientists through three planned meetings with external expert scientists, federal scientists, and vaccine manufacturers' representatives. ISO also gathered input from day-to-day partners and CDC experts in vaccine safety.

On April 23rd, I wrote Bruce Gellin, the Director of NVPO, to follow up on the call in/e-mail campaign:

I know you are currently considering the placement of an additional member/members to the VSWG and I've been told that your office has rec'd multiple calls and e-mails from our community in support of Mark.

Just a couple of clarifying points to remember as you move forward in the decision-making process:

As you probably know, there are generally two "distinct camps" within the autism community (genes vs. environment) and each side has their own organizations which represent their views.

Please understand that our segment of the community (parents who believe that vaccines contributed to their children's regression into autism) is solidly behind Mark and recognize him as a leader on vaccine safety issues.  We are a very vocal and committed group of individuals who have worked hard to advocate for our children and for safer vaccines. 

In contrast, Autism Speaks' is an organization whose primary focus is on genes; as such, vaccine safety issues aren't normally within their purview.

Accordingly, since there are distinct differences within the community, it's imperative to appoint an advocate that represents both the autism community and an organization that has a proven track record in regards to vaccine safety issues.

Mark Blaxill of Safeminds meets both of those requirements. 

On April 28th, a Group member contacted me and told me that a last minute conference call took place and the following items were discussed:

• Several CV’s were distributed to the Group including Geri Dawson, Chief Science Officer of Autism Speaks.

• Mark Blaxill’s CV was not included (along with a few other suggested names) indicating that organizers were making decisions to cut certain names before the call took place.

• Our call in/e-mail campaign to the NVPO office was not brought to the Group’s attention by organizers until a member who was familiar with our “push” brought it up.

• Geri Dawson’s name was eliminated from consideration once members discussed background credentials and transparency concerns in further detail.

After receiving this information, I immediately wrote an e-mail to Bruce Gellin:

Please understand it is paramount that the voice of our segment of the community is heard on this issue and that Mark be placed on the Group to represent our concerns in regards to vaccine safety issues!!!! 

Denying serious debate on this issue by appointing someone who would not represent the most vocal part of the autism community would, in my estimation, be most unfortunate given that you are trying to portray transparency and participation with the public.

I will be updating and asking our community -- once again -- to help us in this effort to place Mark on the Working Group and I hope that you will take their concerns seriously this time around and relay the information to the Working Group.

ROUND TWO:

Again, please help get Mark Blaxill appointed to the Vaccine Safety Working Group by contacting the following individuals at National Vaccine Program Office (NVPO):
 
Bruce Gellin, Director  202.690.5566   bruce.gellin@hhs.gov

Dan Salmon,  202.260.1587  daniel.salmon@hhs.gov

AND

Andy Pavia, Chairman of the Working Group 801.585.3825

***Please contact these individuals daily with calls and e-mails so they can hear us loud and clear***

Thanks and we’ll keep you posted on any progress.

Kelli Ann Davis is an autism advocate in Washington, DC.

Comments

[Terri Lewis]

Dan Salmon called me to specifically ask that e-mails meant for general public consumption include explicit permission to be used publicly.

He wants to be sure *not* to use publicly any information that's meant for him privately.

Thank you all.

[Terri Lewis]

NEW ACTION TO TAKE.

SHARE YOUR STORY; SHARE YOUR INFO.

I just got off the phone with Dan Salmon. He apologized for not returning my call sooner; he's been out of the office for a few days.

The take-away:

1. The decision as to who is on the Vaccine Safety Working Group will be made by the VSWG Chair (Andy Pavia) in consultation with the other current members.

Since this decision is not his to make, he can't give an accurate time frame as to when we'll know whether or not Mark Blaxill will be included.

***2. MOST IMPORTANT. Please stop e-mailing and calling about Mark Blaxill. Message received.

Instead, please send e-mails to daniel.salmon@hhs.gov (the e-mail Kelli posted above) sharing your information or your story--whatever you want him to pass along to the members of the Vaccine Safety Working Group. He will do so.

Keep e-mails brief, if possible, and try to summarize your most important points.

All information will become part of the public record, so send the information with that in mind.

3. Mr. Salmon was very open in sharing names and information about who's already a part of this process, and these names are all on the public record (he mentioned a site, I didn't catch it); he mentioned Tawney Buck, Liz Miller, Corie Decker, Vicky DeBolt, and several others. I still have lots of homework to do on this particular topic; others have more information, no doubt.

This is an opportunity to share information of all kinds with the Vaccine Safety Working Group.

So--anyone at all who wants to potentially influence the proceedings here--this is the time to speak up.

Terri L.

[Terri Lewis]

Called all three, once again.

Nothing much to report, except that I got an answering machine for "Melinda Milne" (I think that's the last name) when I called Andy Pavia's number. Too bad; I was kind of hoping to talk to the young woman who answered his phone yesterday.

I was also told that I would probably wait "forever" to get a call back from Dr. Gellin.

Sheesh.

I could have had the whole thing done myself by now--a suggested "maximum" schedule with a long, long list of contraindications; what's the hold up?

Dang, I am *definitely* in the wrong line of work.

Terri

[Kelli Ann Davis]

I spoke with Dr. Raub yesterday reiterating our desire for Mark's appointment. He has always been supportive of Mark and he's relayed that message to the others but the ultimate decision lies with Bruce Gellin and his team.

Once this post was up on AoA and after my call with Dr. Raub, I sent the link to Bruce, Dan and Dr. Raub so they would know I was asking the community to make calls and send in e-mails once again.

I've asked Bruce to send Mark's CV to the WG members and I'm waiting to hear from him.

I'll definitely keep you posted.

Meanwhile, I'd love to hear from others regarding any feedback they are hearing??

Kelli

PS...Thanks to everyone who's helping to make the calls and send the e-mails!

[Terri Lewis]

Kelli,

I called all three of these men, just this afternoon.

Last week, you may remember, I was told by Dan Salmon that we could expect to hear something "in about a week." When I talked with the young, giggly woman who answered Andy Pavia's phone, however, she seemed to think that the time frame I was told earlier was very funny, and then told me how "busy" Mr. Pavia is.

When I suggested that as Chairman of the VSWG, getting the members of that group organized might be a priority for him, she laughed and said vaguely, "Oh, it will be. . ."

Wonder if she'll have kids someday? Wonder if she'll get them "fully" vaccinated? Wonder what'll happen to them.

Any further news on this?

Terri

[Fed Up]

Since the Vaccine Injury Compensation Program has become a bureaucratic nightmare, and since the pediatricians along with the vaccine makers are immune from liability, the parents are the only ones shouldering the risks for "herd immunity". So the way I see it, parents and children are now expected to take all the risks to generate a societal benefit. In the case of autism, even the insurance companies bear zero costs. This now means that the CDC must do everything it can to discover any possible connection to the vaccine schedule and adverse outcomes.