Has anyone heard of the ACCV, the Advisory Council of Childhood Vaccines to the Department of Health and Human Services? Most people have not and what’s worse, a large majority of the public does not know about the Vaccine Injury Compensation Program (VICP).
The ACCV was formed as the advisory committee to the program or specifically to the Secretary of HHS. There are several members, most serving as representatives for industry and medical agencies, a petitioner attorney, and two parent representatives, who have vaccine injured children. The meetings are held quarterly, the last one Thursday, March 7th. The next meeting will be Thursday, June 6th. The general public is invited to attend via conference call. Currently, the meetings are held on one day, for 6 to 8 hours to discuss topics of concern to the committee. Status reports about the adjudication of petitions are also discussed, as well as the report from DOJ attorneys on the status of cases that are appealed or remanded back to the Vaccine Court. Lastly, workgroup reports on recommendations that can be sent on to the Secretary of HHS are reviewed.
After reading the transcripts of quarterly meetings for the past several years, I have noticed most of the members are not advocates for the general public or vaccine safety. The attorney member and parent representatives are the only ones to challenge the status quo of our nation’s vaccine policy during this meeting.
A topic that should be important to all of us is the committee’s charge and responsibility of conducting public outreach, in other words, educating the general public and medical communities about the VICP. But as with all issues regarding vaccine policy, special interests and their political clout enters the chambers of the committee and put a damper on what should be a clear and laser focused effort to provide information to the general public about vaccine compensation.
In 2009 and 2010, the committee made an attempt to develop a public outreach program. Heavy discussion and debate regarding the determination of goals to inform the public was the topic during the meetings. Was the end result going to be attendance at a few medical tradeshows and handing out a couple dozen brochures to a few doctors who stop by the booth? Or perhaps the development and expansion of the website to provide more information and links to the program, or even developing a Public Service Announcement and placing it on TV and Radio outlets, or use of social media?
The discussion of developing a PSA was very interesting and telling of the motives of several members of this committee. The discussion about a PSA would actually scare more people not to vaccinate trumped the discussion of educating them on what happens if you suspect a vaccine injury.
But what I find very frustrating is what happens with most federal committees and commissions. The committee decided to spend $300,000.00 to contract with a private vendor, Banyon Communications, to develop a public outreach program.
The end result was presented to the committee a year later. For $300,000.00, the ACCV decided to provide a couple of links on the website and publish a couple of documents of their recommendations of reform measures that were sent to the Secretary of HHS a few years earlier.
I think that many of us could have thought about this type of recommendation in a couple of minutes, over a cup of coffee, but over a year later and $300,000.00, here we are.
That was the extent of the public outreach. Can’t modify the Vaccine Information Statement (VIS) to make it more prominent about VICP. That is CDC territory. Handcuffed to produce a Public Service Announcement for Radio and TV. That is taboo because too many people will be scared about what might actually happen to their children. And it will begin a slow decay of one of the cornerstones of the vaccine industry. That vaccine injury is very rare. But what is even worse, is the compensation to a vaccine injury is even rarer. And that civil injustice is very rampant.
The current chair of the ACCV, David King, is a father of a vaccine injured child. And he is a very qualified and effective chairperson. He is a strong advocate for many of our children. And he needs your help.
During the most recent committee conference call, a few items popped up that are concerning. One, the announcement by Dr. Vito Caserta, Executive Secretary of the VICP, that future meetings will be by conference call. When asked by several members of the committee if the opportunity to resume the traditional committee in person meetings, Dr. Caserta told the committee that due to budget concerns and the pending sequester, the quarterly meetings will be held via conference call. No more face to face discussions, interacting with other committee members, and the ability for a member to look another member in the eye and ask the important questions. So as new members rotate into the committee, they will not have a sense of who the other members are, the inability to build relationships to allow for collaboration of ideas.
Now it does not take a PhD to figure out that something is at play. The budget and expenses of the ACCV are part of an allotment from the NVICP Trust Fund. Thus, not subject to federal budgets or sequester. So what is going on? Could it be a cash flow problem since most of the trust fund is invested in Treasury Securities and this coincides with some recent discussions of why the court might delay payments for attorney fees or large settlements in the second half of the budget year, which ends Sept 2013?
Another development that has taken place is that the December 7th, 2012 meeting was the last meeting to have a written transcript produced. Thus, the March meeting and going forward, no written transcripts will be made available. Hopefully an audio recording will be made available. It has been over 3 weeks since the last meeting and no audio recording has been published on the website. A written transcript is a physical record of the meeting.
Are there some currents under the surface to slowly drift away from public transparency and scrutiny of the Vaccine Program? On February 23, 2013, the PACER (Pubic Access to Court Electronic Records) was modified to eliminate a common but very necessary method of searching for petitions by vaccine injury such as MMR injury, HPV death, or Hep B injury.
And the most concerning was the discussion about a report from a working group within the ACCV regarding the increasing number of petitions filed from pregnant women. Most of them are filing injuries not only to themselves but also to their unborn children. And the government’s position, (HHS), is that the pregnant mother is being administered the vaccine and the unborn child is not. So any injures to the child are not covered by the program. Because of this current precedent, petitions are dismissed because of “Lack of Jurisdiction” ruling. But this has a lot of people very nervous within the program. NVAC has been discussing this issue also. Look for this topic to be front and center as our nation’s vaccination policy ramps up promotion of vaccination of pregnant women.
So people need to start asking, what is the real purpose of the ACCV? No genuine public education of the NVICP. A possible reduction in transparency of the program? No more face to face committee meetings with questions submitted prior to the meeting. As a result, topics like immunization of pregnant mothers are left without a voice of the people.
Next ACCV Meeting is June 6th 2013.
Wayne Rohde lives in Woodbury, MN. Father of Nick Rohde, a 15 year old vaccine injured boy who later was diagnosed with moderate to severe autism. Wayne is currently writing a book about the National Vaccine Injury Compensation Program.