Statement by Barbara Loe Fisher
Co-Founder & President, National Vaccine Information Center
Illinois Board of Health
Hearing on Immunization Rules and Proposed Changes
Thursday, March 26, 1998
My name is Barbara Loe Fisher. I live in Washington, D.C.and am the mother of three children. My oldest child was brain injured and left with multiple learning disabilities and attention deficit disorder from a reaction to his fourth DPT shot. I have traveled to Springfield today, along with Kathi Williams, who is also the mother of a DPT vaccine injured child, to speak on behalf of the many thousands of citizens in Illinois and around the country who are members of the National Vaccine Information Center and support the right to informed consent to vaccination.
Sixteen years ago, when Kathi and I co-founded our non-profit, educational organization with other parents of vaccine injured children, we set as our goal the prevention of vaccine injuries and deaths through public education. We are not anti-vaccine and have never called for the elimination of vaccine requirements. Because the right to informed consent is the central ethical premise in the practice of modern medicine, we endorse the same informed consent right to vaccination which governs all other medical procedures carrying a risk of injury or death.
The National Vaccine Information Center supports the development of safer and more effective vaccines as a health care option for all Americans and, in fact, are primarily responsible for bringing the purified, less toxic DTaP vaccine to the market in the U.S.. We have a long public record of calling for independent scientific research into the biological mechanism of vaccine injury and death in order to identify and screen out high risk children. We support higher standards for proof of safety and efficacy of vaccines prior to licensure and long term prospective case controlled studies to measure all morbidity and mortality outcomes following vaccination post- licensure.
I am the co-author of DPT: A Shot in the Dark published by Harcourt Brace Jovanovich in 1985; a former member of the National Vaccine Advisory Committee, where I chaired the subcommittee on vaccine adverse events, and am a member of the Vaccine Safety Forum at the Institute of Medicine, where I have helped to coordinate four public workshops on vaccine safety issues.
Kathi and I worked with Congress in the early 1980's to create and pass the National Childhood Vaccine Injury Act of 1986, an historic law which acknowledged that vaccines can injure and cause death. Tragically, 3 out of 4 vaccine injured children are turned down for federal compensation because of opposition from DHHS officials and Justice Department lawyers, but to date nearly $1 billion dollars has been awarded by the U.S. Court of Claims to about 1,000 catastrophically vaccine injured children and adults.
Under the 1986 Vaccine Injury Act, doctors are required for the first time to give parents vaccine benefit and risk information before vaccination, such as the Vaccine Information Statements published by the CDC, and to record and report serious health problems following vaccination. Although fewer than 10 percent of all doctors obey the law and report serious health problems after vaccination, the federal government still receives between 12,000 and 14,000 reports of hospitalizations, injuries and deaths following vaccination every year. If this is less than ten percent of what is actually occurring, the number of adverse events following vaccination is well over 100,000 annually. It is unknown how many of these events end in permanent injury or death.
Under the 1986 law, the Institute of Medicine was asked to convene an independent committee of physician experts to conduct a thorough review of the medical literature for scientific evidence that vaccines can cause immune and neurological damage. IOM published three reports in 1991 and 1994 finding that, for example, the live polio vaccine can cause polio; the DPT vaccine can cause permanent brain damage; the measles vaccine can cause measles vaccine strain viral infection; and the tetanus vaccine can cause Guillain Barre syndrome.The most astonishing conclusion of the Institute of Medicine report was that :
"The lack of adequate data regarding many of the adverse events under study was of major concern to the committee....the committee encountered many gaps and limitations in knowledge bearing directly or indirectly on the safety of vaccines. These include inadequate understanding of the biologic mechanisms underlying adverse events following natural infection or immunization, insufficient or inconsistent information from case reports and case series... and inadequate size or length of follow-up of many population-based epidemiologic studies."
What is clear and cannot be denied in 1998 is that there is a huge vacuum of scientific knowledge about how and why vaccination is followed by immune and neurological damage including epilepsy, learning disabilities, attention deficit disorder, asthma, autism, arthritis, diabetes, and mental retardation. This information gap makes it far too easy for health officials to minimize vaccine risks and write off health problems following vaccination as simply "coincidentally" occurring at the same time of vaccination or to suggest, without any empirical evidence whatsoever, that the child who reacts is genetically defective.
When parents take the state mandated risk and it turns out that the risk for their child is 100 percent, everyone has been carefully taught to accept the idea that the vaccine is not responsible. The doctor is not responsible. The vaccine maker is not responsible. The government is not responsible. The genetically defective child is responsible.
No science. No screening. No accountability.
The fact remains that when it happens to your child, the risks are 100 percent and you - not the pediatrician, health official or state legislator - are left to cope with the consequences for the rest of your life.
It is the failure by public health officials to truthfully acknowledge what science does and does not know about vaccine risks; the failure to truthfully communicate disease risks; the over-zealous enforcement of vaccine laws in order to achieve a 100 percent vaccination rate; coupled with the fact that parents are now being told to give their children 34 doses of 10 different before they enter kindergarten without the right to informed consent, which has caused a crisis of confidence in the system in the minds and hearts of many conscientious parents, that brings us here today to discuss, among other things, what lllinois can do to modify a mandatory vaccination system that many believe is out of control.
Last year the Illinois Department of Health issued an order that all fifth and sixth graders reporting to the first day of school next fall must either show proof that they have had 3 doses of hepatitis B vaccine or they will be expelled from school. It was this edict that moved Glenview mother, Kathi Rothschild, to conduct her own research and discover two things: first, that her 10 year old daughter Beth is not at high risk of contracting hepatitis B because she is not an IV drug user or sexually active and, second, the hepatitis B vaccine has known and unknown risks she was not willing to subject her child to. Much to her surprise, she discovered that she did not have any choice in the matter and contacted the National Vaccine Information Center for help.
I also have conducted research on hepatitis B using medical textbooks, vaccine maker product inserts, published and unpublished CDC data and transcripts from government meetings. What I learned was that, contrary to what the public and state legislators are being told by federal and state health officials, hepatitis B is not a disease that can be transmitted through casual contact. The CDC admitted in a meeting last week in Washington, D.C. that there is not one documented case of transmission of hepatitis B from sharing toothbrushes or razors or ear piercing and they also admitted that the figures of 150,000 new cases of hepatitis B disease and 5,000 deaths annually are merely estimates and not based on hard data..
Hepatitis B, unlike smallpox or whooping cough or measles, is transmitted through exchange of body fluids such as blood and semen and, therefore, is a disease primarily affecting adults engaged in high risk behaviors. 90 to 95 percent of all hepatitis B cases recover completely with 5 to 10 percent becoming chronically ill. A disease prevalent in Asia and the Middle East, even before the vaccine was introduced in the U.S., our country had and continues to have one of the lowest rates of hepatitis B disease in the world.
Only 10, 637 cases of hepatitis B were reported in all of the United States in 1996 and the CDC stated in the October 31, 1997 MMWR that "Hepatitis B continues to decline in most states, primarily because of a decrease in the number of cases among injecting drug users and, to a lesser extent, among both homosexual and heterosexuals of both sexes." In 1996, 335 cases of hepatitis B were reported in Illinois with 10 cases reported in children under 14 years of age and only 5 reported in 1997.
Hepatitis B is not a highly contagious, dangerous disease among the general population and it is not in epidemic form either in Illinois or in any other state.
And yet, nearly two and a half million Illinois children are being told to line up and get 3 doses of hepatitis B vaccine at a cost of up to $40 per shot - to prevent 10 cases of hepatitis B in children under the age of 14.
But what about the risks from the vaccine? One vaccine manufacturer reports that up to 17 percent of all vacinees report reactions following hepatitis B vaccination. The Institute of Medicine concluded in their historic 1994 report that there were no case controlled observational studies or controlled clinical trials conducted on hepatitis B vaccine either before or after licensure to scientifically evaluate persistent reports that hepatitis B vaccine can cause sudden infant death syndrome; Guillain-Barre syndrome and other central demyelinating diseases including transverse myelitis, optic neuritis, and multiple sclerosis and autoimmune diseases such as chronic arthritis.
As all doctors know, vaccines only provide a temporary immunity. Only natural recovery from disease provides permanent immunity. How long will newborns or fifth graders who get the vaccine be protected? Merck & Co, a maker of the hepatitis B vaccine, states in its product insert that "the duration of protective effect in healthy vacinees is unknown at present and the need for booster doses is not yet defined."
Again, they don't know. It is a national experiment. On our children. For a disease that is not highly contagious, except in adults engaging in high risk behavior, and is not in epidemic form in the United States.
And yet the Illinois Department of Health is treating hepatitis B like smallpox or polio and promulgating rules requiring its use. But what does Illinois law say about the right of the Department of Public Health to, in effect, enact quarantines, including excluding children from school, in order to control infectious diseases?. Well, the law is quite clear on this point.
All state public health laws in the U.S. have their historic roots in the 18th and 19th centuries when unpredictable epidemics of highly contagious, dangerous diseases such as yellow fever, typhoid and smallpox would sweep through a city, resulting in high mortality rates. The port cities of New York and Boston were especially hard hit when European immigrants would disembark from ships carrying smallpox into the crowded cities. Eventually volunteer citizen committees formed to quarantine the boats entering harbors for a several weeks until those disembarking were certified free from yellow fever or smallpox. These volunteer citizen committees, which were made up - not of doctors or politicians - but of ordinary people like the parents here today, were the first local Boards of Health.
At the turn of this century, after doctors had taken over these citizen committees and funding from taxes supported the beginnings of a public health infrastructure, the first mandatory vaccination laws were enacted to try to control smallpox. Soon the idea of quarantining those with infection was extended to those who were not vaccinated, such as excluding unvaccinated children from school during smallpox epidemics.
In 1918, an Illinois court upheld the right of a local Board of Health to exclude children from school for a period of two weeks during a smallpox epidemic unless they had had smallpox or had been vaccinated. In 1922, a case was brought all the way to the Illinois Supreme Court, testing the quarantine laws. Here is what the Illinois Supreme Court said:
"While the powers given to the health authorities are broad and far-reaching, they are not without their limitations. As we have said, while the courts will not pass upon the wisdom of the means adopted to restrict and suppress the spread of contagious and infectious diseases, they will interfere if the regulations are arbitrary and unreasonable. A person cannot be quarantined upon mere suspicion that he may have a contagious and infectious disease but the health authorities must have reliable information on which they have reasonable ground to believe that the public health will be endangered by permitting the person to be at large. Where danger of an epidemic actually exists, health and quarantine regulations will always be sustained by the courts, but the health regulations are all sustained on the law of necessity....Health authorities cannot promulgate and enforce rules which merely have a tendency to prevent the spread of contagious and infectious diseases, which are not founded upon an existing condition or upon a well-founded belief that a condition is threatened which will endanger the public health."
And in 1981, an amendment to the Illinois public health laws states that "The Department of Public Health shall investigate the causes of dangerously contagious or infectious diseases, especially when existing in epidemic form, and take means to restrict and suppress the same."
Again, the emphasis is on dangerously contagious diseases in epidemic form. Hepatitis B is not like smallpox, when just breathing the air next to an infected person could transmit the disease. With hepatitis B, as with HIV or AIDS, you have to directly exchange body fluids such as blood or semen with an infected person.
Let's face it, there are not many fifth graders doing that in the state of Illinois. With 300 or even 1,000 cases of the disease, why not employ traditional public health measures such as educating children about drug use and high risk behaviors; and screening pregnant women in hospitals to make sure that the newborn babies of hepatitis B positive mothers get the vaccine; and targeting IV drug users and prostitutes for quarantine and vaccination. Why target two and a half million innocent newborns and children?
And this brings us to informed consent rights, the gold standard in modern bioethics governing scientific research and medical care since the Doctor's Trial at Nuremberg following World War II. It was at Nuremberg that the utilitarian rationale that a fewer number of individuals can be sacrificed for the happiness of a greater number of individuals - was categorically denounced as dangerous and inherently immoral. It was utilitarianism, utilized in its most extreme and tragic form by those in control of the German state during World War II, that enabled doctors to convince themselves to participate in lethal policies undertaken by the state in the name of protecting the public health and welfare.
Out of the Doctor's Trial, came the Nuremberg Code and the birth of modern bioethics, a code which Yale law professor, physician and ethicist Jay Katz has said, "if not explicitly than at least implicitly commanded that the principle of the advancement of science bow to a higher principle: protection of individual inviolability. The rights of individuals to thoroughgoing self determination and autonomy must come first. Scientific advances may be impeded, perhaps even become impossible at times, but this is a price worth paying."
Another bioethicist, Arthur Caplan, concurred when he said that "the right of individuals to control their bodies trumps the interest of others in obtaining knowledge or benefits from them."
But even if the Nuremberg Code had never been promulgated, demonstrating the immorality of justifying the sacrificing of the few for the majority and pointing us toward the morality of accepting the human right to informed consent to medical interventions that can kill or injure us, there is the strong Judeo-Christian ethical tradition that protects the sacred right of the individual to exercise freedom of conscience even if it conflicts with a secular law of the state. This freedom is considered so inviolable in Catholic canon that the church warns that "a human being must always obey the certain judgement of his conscience. If he were to deliberately act against it, he would condemn himself."
This human right is also defended by the U.S. Constitution, which guarantees citizens the right to free exercise of religion and prohibits discrimination based on religious beliefs. In this regard, the Illinois Department of Public Health has violated the First Amendment of the Constitution by establishing rules permitting schools to deny religious exemptions to vaccination to parents who hold sincere religious beliefs but do not belong to a church with a tenet opposing vaccination.
Over the years, the National Vaccine Information Center has heard from thousands of parents across the country who have reported human rights abuses at the hands of state officials enforcing mandatory vaccination regulations but there are a few states which stand out as being the most oppressive. Illinois is one of them.
Today I am speaking for Illinois mothers and fathers, who have contacted us and are either too traumatized by what has happened to their children or too frightened by threats from state health and welfare officials to be here today to speak for themselves. There are lllinois parents who have been charged with child neglect and told their children will be taken from them if they don't vaccinate with every state mandated vaccine; others who have been threatened for refusing to vaccinate surviving children with the same vaccine that injured or killed another one of their children. One frightened Illinois doctor called us because he wanted to give a medical exemption to a child he thought was at high risk of reacting but was afraid of being harassed by state health officials for writing a medical exemption.
There are parents here today whose son is being expelled from an Illinois college because his religious exemption to vaccination has been denied by the college health director. And others who are not here today who are being denied food stamps, welfare and even health insurance if they don't show proof their children have gotten all state recommended vaccines.
Yesterday we were contacted by a mother in Illinois who whispered into the phone that she supported us with all her heart and would be here with us today in spirit but she was so terrified that public health officials would take away her partially vaccinated children that she was afraid to leave her name so she could be on our mailing list.
How did we come to this point, where American citizens live in fear of state health officials, much the same way people under totalitarian rule live in fear of the secret police? This is not right. We are not living in the Gulag or in communist China or in some backward Third World dictatorship. This is America, where respect for individual human life and freedom and the right to obey our conscience says everything about who we are as a people and as a nation.
There is six year old girl named Katherine lying in a bed in Skokie, Illinois unable to lift her head off her pillow or walk to the bathroom. Just 13 weeks ago, Katherine was an ice skater with boundless energy and a dream of going to the Olympics. Her mother didn't want her to get the hepatitis B shot but her pediatrician told her it was a political issue like AIDS and the AAP was going to mandate the vaccine soon. Katherine got that hepatitis B shot and now she may never skate again.
Where were her informed consent rights? And where will the doctors from the state health department and the CDC and the AAP be when her mother has to carry her up the stairs to the bathroom? And will the state of Illinois pay her medical bills when her insurance runs out after DHHS and the Justice Department oppose giving her federal compensation?
We as parents, who know and love our children better than anyone else, we, by U.S. law and a larger moral imperative are the guardians of our children until they are old enough to make life and death decisions for themselves. We are responsible for their welfare and we are the ones who bear the grief and the burden when they are injured or die from any cause. We are their voice and by all that is right in this great country of ours and in the moral universe, we should be allowed to make a rational informed voluntary decision about which diseases and which vaccines we are willing to risk their lives for without fearing retribution from doctors employed by the state.
On behalf of our Illinois members, the National Vaccine Information Center is calling on the Illinois Department of Public Health to (1) endorse the right of state legislators to take a vote on all vaccines the Department chooses to mandate in the future, including the hepatitis B vaccine; and (2) endorse an amendment to public health regulations to give the people of Illinois informed consent to vaccination by adding philosophical exemption; and (3) to move immediately to bring the religious exemption rules back in line with freedoms guaranteed to all American citizens by the U.S. Constitution.