By Barbara Loe Fisher
When I received my invitation in the summer of 2004 to participate in a Blue Ribbon Panel on Vaccine Safety, I was curious to see who else would be participating. When I saw that Lou Cooper would be the moderator, I knew we would need to dust off our radar to distinguish between what appeared to be happening and what was really happening because Lou is both a gentleman and a magician. He and I first squared off in a debate on the Regis Philbin Show in 1986 when Kathie Lee was still engaged to Frank Gifford and Lou was still insisting that DPT vaccine was really, really, really safe.
But the invitation to the Blue Ribbon Panel meeting also came at a time when I was re-evaluating the 20 years I had worked with public health officials and other "vaccine stakeholders" in collaborative efforts. The latest two year effort was floundering badly despite its promising beginning. I found myself wondering if there was any use flying to Atlanta for another one but I wanted to go because Mark Blaxill was going to be there.
When parents of DPT vaccine injured children organized in the early 1980's under the banner of Dissatisfied Parents Together (DPT) one of the first actions that Merck, Lederle, Wyeth and Lederle took was to threaten to leave the nation without any DPT, MMR or polio vaccine unless they got total liability protection from Congress. The drug companies and the American Academy of Pediatrics pushed very hard for an "exclusive remedy" – no more lawsuits against negligent doctors or drug companies for any reason. They said it was necessary "to protect the vaccine supply." Congress believed them and pledged to pass a federal vaccine injury compensation program to do just that.
Congressional leaders asked our fledgling parent organization to come to the table and fight for the rights of families during creation of the National Childhood Vaccine Injury Act eventually signed into law by President Reagan in 1986. Negotiations on behalf of parents were primarily handled by DPT's first president, environmental lawyer Jeff Schwarz, whose daughter had been brain damaged and eventually died from a reaction to DPT vaccine. We insisted that any law creating a compensation program must first contain safety provisions that would help prevent vaccine injuries and deaths from occurring in the first place. We got them: mandatory reporting, recording and information for parents.
We also insisted that a parent's right to go to court must be protected if federal compensation was denied or – very importantly - if it could be shown that the drug company engaged in criminal fraud or gross negligence in the testing and manufacturing of the vaccine. Parents prevailed on this point, too, but it came at a high price in terms of compensation caps and certain criteria limitations being placed on those filing vaccine injury claims.
Even so, we never believed that Congress would go back on its promise to parents to ensure that the federal vaccine injury compensation program would be a fair, expedited, less traumatic and less expensive alternative to a vaccine injury lawsuit. That promise has been broken as Congress has looked the other way over the years and allowed the federal compensation system to be turned into a cruel joke, a poor imitation of a jury trial. The lawsuits in the 1980's may have often left vaccine victims with next to nothing after most cases were settled on the courthouse steps by drug company lawyers with deep pockets. But today, government officials fight nearly every vaccine injury claim and, despite the $2 billion already paid out to families, two out of three vaccine victims are turned away empty handed.
This was my first lesson in the politics of mass vaccination.
It was during those four years of negotiations between 1982 and 1986 with government, industry and doctors that I was introduced to the major players in the mass vaccination business. I watched officials in the Departments of Health and Human Services and Justice steadfastly oppose a federal compensation program. CDC officials, especially, did not want to admit publicly that vaccines they recommended for universal use can harm children because they have adopted a utilitarian "for the greater good" position to dismiss the significance of vaccine casualties and persuade state governments to mandate every new vaccine they recommend.
The CDC's stance then and now is: vaccines are entirely safe and effective and if a child's health deteriorates after vaccination, it is the child and not the vaccines at fault.
For the past 25 years, this stubborn "see no evil, hear no evil, speak no evil" position taken by government health agencies when it comes to discussing vaccine risks has made it almost impossible for them to accept the urgent call by parents of vaccine injured children for the institution of safety and informed consent protections in the mass vaccination system. Between 1988 and 2005, I sat at the table with officials from government, the pharmaceutical industry and medical organizations as a member of the National Vaccine Advisory Committee (1988-1991), where I was the chair of the subcommittee on vaccine adverse events; the Institute of Medicine Vaccine Safety Forum (1995-1998), where I helped to produce four published reports on vaccine safety research and policy reform priorities; the FDA Vaccines and Related Biological Products Advisory Committee (1999-2002), where I voted on the scientific evidence that new vaccines had been proven safe and effective; and the Vaccine Policy Analysis Collaborative, a participatory democracy experiment initiated by the Centers for Disease Control (2002-2005) which almost succeeded until it was sabotaged by industry.
I came to the table again and again because I believe that those who are public critics of government policy should be willing to engage those who make government policy in the hope both parties can better understand one another and find common ground to effect positive change. What I learned from long years of sitting at the table with fellow citizens working in government, who saw my vaccine safety advocacy work as a threat to the public health even as I viewed their denial and inaction as a threat to the public health, is that fear and mistrust dominated almost all of our deliberations. Even when we successfully transcended that fear and mistrust and connected on a personal level as mothers or fathers, daughters or sons, idealists or skeptics, doctors or lay experts, citizen activists or government workers, there was always the institutional position that interfered with our being able to permanently bridge the divide. Tragically, too often that divide was encouraged by those paid by industry whenever it looked like vaccine safety advocates and government health officials might work things out.
Parent pleas to government health officials to acknowledge vaccine risks and do the real science were rejected in favor of holding the line and creating more spin to deny vaccine risks. So, after 25 years, there is still no basic science research into the biological mechanisms for vaccine injury and death or pathological profiles and genetic/biological high risk markers to separate out what is and is not vaccine induced; there are still no methodologically sound epidemiological studies comparing the health of vaccinated and unvaccinated persons to determine background rates for learning disabilities, ADD/ADHD, seizures, autism, asthma, diabetes and other chronic illness in vaccinated and unvaccinated populations. And as we face an escalating autism epidemic that is claiming 1 in 150 or even 1 in 100 of our highly vaccinated children, we still do not know with any scientific certainty the full extent of what injecting children 48 doses of 14 vaccines by age six does to individual and public health.
I came to the Blue Ribbon Panel meeting in 2004 knowing all of the players and remembering the long years we had been doing this familiar dance. For me, the highlight of the coming together again was watching a young father of a daughter with vaccine-induced autism, the brilliant Mark Blaxill, remind them that they continue to ignore our pleas for credible science at their peril. It was a feeling of gratitude, relief, hope and exhilaration, the kind that soldiers dug in the trenches must feel when the cavalry reinforcements arrive. I still wonder what it felt like for everyone else in the room to witness the old and new generations of parents of vaccine injured children united in a common cause that was little changed, a harbinger of things to come.