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Workshop On Risk Communication And Vaccination
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Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center, was appointed to the Vaccine Safety Forum at the Institute of Medicine in 1995. She helped the Forum coordinate five vaccine safety workshops: Polio Vaccines (June 7-8, 1995); Vaccine Adverse Event Detection and Response (Nov. 6, 1995); Vaccine Research Priorities (April 1, 1996); Vaccine Risk Communication (May 13, 1996) and Research Strategies (Oct. 26-27, 1998). Her major contribution to the Forum was to ensure that public vaccine safety workshops included statements by parents of children who were injured or died following vaccination as well as statements by independent doctors presenting new research and alternative viewpoints about vaccine safety issues. 

Opening Statement by Barbara Loe Fisher
Co-Founder & President, National Vaccine Information Center
Institute of Medicine Vaccine Safety Forum
Workshop on Risk Communication and Vaccination

May 13, 1996 

In 1988, Tina and her husband watched their healthy three month old son, Evan, get his first DPT shot and within hours, react with a swollen leg, bouts of high pitched screaming, and a fever. In the following days he was unusually lethargic, then lost head control and, finally, suffered a seizure, collapsed and died. The coroner listed Evan's death as heart failure but the doctor told his parents that Evan was a victim of sudden infant death syndrome.

In 1994, Tina gave birth to a healthy baby girl. When nine month old Miranda got her second DPT and HIB vaccinations, within 48 hours she woke her parents up with a scream that ended in a loud shriek. Tina ran to her daughter's crib and found her in the middle of a seizure that was followed by a collapse. Tina gave her baby CPR to try to revive her but Miranda died at the hospital an hour later. This time the pathologists concluded and the coroner agreed, the cause of death was a fatal reaction to DPT and HIB vaccines.

In 1980, my fully vaccinated sister brought whooping cough into the family. Her three year old daughter had gotten 4 DPT shots but also got pertussis. Her three week old infant daughter, Sarah, was hospitalized with pertussis and had to be resuscitated many times. I will always remember listening to my sister describe her baby's terrifying struggle to breathe and how she was afraid her newborn daughter would die. Sarah recovered completely from her bout with whooping cough and is a healthy, bright 16 year old today. But the baby with whooping cough in the hospital isolation room next to Sarah was not so lucky. She died.

In 1990, Lisa's first daughter was left with severe brain injuries after a reaction to DPT vaccine and was later awarded federal compensation for her injuries. When South Carolina health authorities found out that Lisa had not vaccinated her youngest daughter with pertussis vaccine, they started calling Lisa twice a week and showing up at her house unannounced, threatening to charge her with child abuse and take the child if she did not vaccinate. Lisa finally told them she had a gun and would leave the state to protect her child from vaccine damage if they did not leave her alone.

You cannot be in the presence of a profoundly vaccine damaged child and not know that child could be your own. And you cannot try to comfort a mother who has just buried a baby who has died from a vaccine or a disease and not know that you could be the one standing over the grave. When it happens to your child, the risks are 100 percent.

Albert Einstein, whose statue stands outside this National Academy of Sciences, was an extraordinary scientist and a remarkable human being whose compassion for his fellow man and respect for freedom was evident in all of his writings. In 1940, he wrote:

"The progress of science presupposes the possibility of unrestricted communication in all results and judgments - freedom of expression and instruction in all realms of intellectural endeavor. By freedom I understand social conditions of such a kind that the expression of opinions and assertions about general and particular matters of knowledge will not involve dangers or serious disadvantages for him who expresses them. This freedom of communication is indispensible for the development and extension of scientific knowledge."

This Vaccine Safety Forum has been a first step in creating a climate for open public discussion about vaccine safety so there can be an extension of scientific knowledge for the purpose of saving lives. But for meaningful positive change to take place, a lot will depend upon how well we have listened to each other and what we choose to do once we leave this Forum and go our separate ways.

Those of us who co-founded Dissatisfied Parents Together in 1982 and then opened the National Vaccine Information Center in 1989 shared one goal: the prevention of vaccine injuries and deaths through public education. At the core of our public education effort is the deeply held conviction that all American consumers, but particularly parents, should have access to more complete information about the risks of vaccines and diseases. Our children suffered because we were not informed parents.

During the course of our research into more than 50 years of medical literature, we discovered that scientists and doctors had discussed among themselves for decades how vaccines can cause injury and death both in lab animals and in humans. Vaccine manufacturers, providers and policymakers knew that vaccines were being created out of viruses and bacteria grown in potentially contaminated human and animal tissue cultures and that subtances such as mercury derivatives and sodium choloride and aluminum were being added and that, although heat and formaldehyde and other chemicals were being used to theoretically detoxify or render the viruses and bacteria incapable of causing harm, there was no guarantee, only hope, that an unknown number of healthy vaccine recipients would not die or be injured. But they never bothered to tell the people who were being vaccinated.

This failure to communicate what medical science does and does not know about vaccine risks was, quite simply, perceived as a fundamental betrayal of trust by those who were being asked to take the risk.

Then, after the National Childhood Vaccine Injury Act was passed in 1986, when the Departments of Health and Justice worked together to rewrite the law and withhold federal compensation from three quarters of all children with vaccine associated injuries applying for help; when contraindications were narrowed and sick children started being vaccinated in emergency rooms; when each new vaccine produced was recommended for mandatory use; and when government and industry subsequently joined together to launch a mass media campaign to achieve a 100 percent vaccination rate by denying vaccine risks exist or suggesting that, if risks do exist, they are only experienced by children who are genetically compromised, there was a further erosion of trust.

Despite scientific evidence documenting the ability of vaccines to cause injuries and death in more than 70 years of medical literature; in 35 years of civil lawsuits; in the court records at least 1,000 individuals who have been able to obtain acknowledgement in the vaccine injury compensation program; and even despite evidence supplied by the Institute of Medicine in their published reports on vaccine adverse events in 1991 and 1994, U.S. government officials continue to promote the idea that children who die or are brain injured following vaccination have an underlying genetic disorder and that (a) either the vaccine simply triggered the inevitable; or (b) these children were predestined to die or become brain damaged even if no vaccine had ever been given. Without any empirical evidence whatsoever in most individual cases of vaccine associated death and brain damage, health officials repeat the seductive and dangerous mantra to pediatricians and parents alike when referring to children with vaccine associated health problems - underlying genetic disorder.

And so, when parents take the state mandated vaccine risk and it turns out that the risk for their child is 100 percent, everyone has been carefully pre-conditioned to accept the idea that the vaccine is not responsible. The doctor is not responsible. The vaccine manufacturer is not responsible. The government is not responsible. The genetically defective child is responsible.

How convenient. No need for questions to be asked. No need to report deaths and injuries following vaccination. No need to pull vaccine lots associated with high numbers of deaths and injuries off the market. No need to commit dollars or time to conduct scientific studies to find out exactly what vaccines do in the human body at the cellular and molecular biology level. No need to develop pathological profiles for vaccine injury and death or develop a genetic marker to separate out high risk children and save their lives. No need to be concerned about the immune and neurological dysfunction of these genetically defective individuals who have been legally required to sacrifice their lives on the battlefield of our nation's War on Disease.

And so the haunting question remains: just how many are being sacrificed? How many of the mentally retarded, epileptic, autistic, learning disabled, hyperactive, diabetic, asthmatic children in the inner cities and the suburbs and the big and small towns of America are part of that sacrifice?

With the repeal of the military draft in the 1970's, mandatory vaccination is the only law in America which requires a citizen, in effect, to risk his life for his country. And when the draft was in effect during times of war the difference was that the young men being required to risk their lives were 18 years old and had the right to choose to conscientiously object. They were not 8 hour or 8 week old infants incapable of making that decision for themselves.

More and more people are beginning to question the moral center of a law that allows a group of self appointed medical, risk assessement and cost management experts within the State to decide that, in the name of disease control, it is acceptable to sacrifice the lives of certain individuals for the theoretical well being of the rest and then use Orwellian tactics to convince the public their decision is correct. Who should have the power to decide that chicken pox is as dangerous as smallpox and must be eradicated from the earth or that failure to get a second measles shot should be a reason to throw a boy in jail like 17-year old Jacob was several weeks ago in Milwaukee?

For many, this issue transcends mandatory vaccination and speaks to the heart of the individual liberties upon which our democracy was founded. Because if the State can tag, track down and force citizens against their will to risk injury and death with biologicals of unknown toxicity today, there will be no limit on what individual freedoms the State can take away in the name of the greater good tomorrow.

My son, for whom the risks of the whole cell pertussis vaccine were 100 percent, I have no doubt, was predisposed to reacting to vaccines because we have a family history of severe allergies to drugs, vaccines, foods and environmental antigens. As I told you at the last workshop my son, as a baby, was the most cognitively gifted of my three children. Genetically gifted, genetically predisposed.

How many of us in this room will eventually die from what will one day be identified as a health disorder that is under genetic control? Probably most of us. And when medical science identifies genetic markers, shouldn't we have the right to decide whether or not to risk using products or taking actions which could injure us or hasten our deaths? Or will that power be given to an elite group of experts within the State who will decide who will live and who will die and when?

The only voice our children have until they are old enough to make life and death decisions for themselves is the voice that we, their parents who know and love them best, give to them.

In the absence of scientific studies to compare all morbidity and mortality outcomes in vaccinated and unvaccinated individuals to determine scientific truth and with vaccine experts busy comforting themselves with the scientifically idiotic supposition that the risk of dying after eating bread is identical to the risk of dying after being injected with a vaccine containing toxins that are used to deliberately induce seizures and death in lab animals, more and more people are refusing to blindly trust and put their lives and the lives of their children in the hands of the experts. They are demanding the right to decide for themselves which risk to take and the right to select the kind of preventive health care that is appropriate for their family.

There are those who are attempting to paint the people calling for better science and the right to informed consent as anti-vaccine child abusers and traitors to their country. And all they are doing by falsely characterizing people, who are only trying to be good parents and responsible citizens, is to pave the way for the day when you will see Americans marching with their children in the streets; standing up in court and in front of the TV cameras; willing to go to jail to fight for their human and civil rights; and defending with their lives their moral obligation to obey the certain judgement of their conscience and protect their children from harm.

You cannot take away freedom and force people to violate their conscience and expect to get away with it. Maybe in the Gulag or in Peking. But not in America.

In this politically charged debate I believe there will be no winners, only losers, if the two sides fail to find a way to intelligently coexist. With that, I want to make it clear, hopefully for the last time, that the National Vaccine Information Center has never told anyone not to vaccinate. That is not a decision that is ours to make. We have always provided information on disease risks because we believe health care consumers should know how serious those risks can be. We do not advocate elimination of vaccines.

We maintain that the least toxic and most technologically advanced vaccines that can be produced should be made available to Americans as a preventive health care choice; that vaccine risks should be fully defined and communicated; and that high risk individuals should be identified. Simultaneously, in the spirit of the Bill of Rights in the American constitution, the provisions of the Nuremberg Code and the Helsinki Declarations as well as the tenets embodied in the scriptures of every major religion, we also maintain that American citizens should have the right to informed consent; the freedom to obey the judgement of their conscience; and should never be forced to engage in any medical procedure which carries the risk of injury or death against their will.

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