Editor's Note: This is the second of eight installments by Mark Blaxill, Age of Autism's Editor at Large, and Barbara Loe Fisher of the National Vaccine Information Center, who were invited in 2004 to participate in a Blue Ribbon Panel at the CDC on vaccine safety. (Part 1 can be found under Mark's name on our home page.) In light of recent events -- including the threat to jail parents in Maryland who do not get their kids vaccinated -- their alternative vision seems especially timely. This segment is titled: From Waging a War on Disease to Securing Childhood Health:
For those who join high level discussions of vaccine policy for the first time, it is quite surprising to see many CDC officials wearing uniforms. By embracing a military identity, these officials emphasize their unique prerogatives. That they possess the authority: to deploy the coercive powers of the state as they see fit; to deprive citizens of their liberty in the name of the greater good; and to enforce what they consider to be necessary human sacrifices as they do battle with dangerous microbes and viruses. The language of conflict — the "war on disease," "combating the causes of epidemic," "fighting emerging infections" — is closely connected to the language of military power and, of course, "Disease Control." History teaches us that when government officials are determined to fight a war, any war, truth can be the first casualty.
Although the CDC hosts multiple centers for disease prevention, a clear organizational focus on chronic childhood disease and disability and on overall childhood health is absent. The Center for Chronic Disease Prevention focuses almost exclusively on adult conditions, while the Center for Birth Defects and Developmental Disabilities (NCBDDD) focuses its attention on a selective set of childhood conditions, a set that excludes autoimmune conditions. The NCBDDD has meanwhile demonstrated puzzling complacency in its approach to developmental disorders such as autism. Effectively, the CDC's largest institutional commitment to childhood health lies within the National Immunization Program, a group with an exclusive focus on preventing infectious diseases through mandated mass vaccinations. For most American families, the childhood immunization program represents the public face of the CDC and its most concrete intervention in our everyday lives. We exaggerate only a bit when we say the war on infectious disease as implemented by the NIP is America 's primary childhood health initiative.
In the war on infectious disease, the CDC measures progress by its surveillance of "notifiable diseases." There are now more than 60 such notifiable infectious diseases and the CDC reports these diseases on a weekly basis for each state and territory, with annual breakdowns that itemize case counts by age group, including children. By contrast, no such chronic disease and disability surveillance exists for children, with the sole exception of some rudimentary asthma data. As to clear childhood health crises such as the epidemic of autistic spectrum disorders (ASDs), the CDC only says, "We do not know if ASDs are becoming more common in the United States ."
Clearly, our public health officials possess asymmetric information with respect to the total health of children and how it is changing. This asymmetry results in part from institutional inertia, in part from limited funding and in part from different perceived relevance of such timely reporting for intervention purposes. Whether or not this asymmetry was ever deliberate, it has resulted in clear ignorance regarding chronic disease. And although one might attempt to excuse such ignorance as an historical legacy, at some point such ignorance becomes willful: a conscious choice to forego the acquisition of unwelcome knowledge; an attempt to preserve plausible deniability in the face of disturbing news. In a parent, such denials would amount to negligence. Indeed, diligent, concerned parents have become the most vocal critics of our public health officials' performance in the area of childhood health.
Yet while parents may know a great deal about their own children, they inevitably possess a limited view of populations, enhanced perhaps, but quite possibly distorted, by shared group experiences in advocacy groups. Scientists typically rely on more rigorous surveillance and research to provide reliable trend and incidence data. Yet scientists and other "experts" will only know what basic surveillance tells them or what they seek to know through sponsored research. When basic surveillance and critical research is lacking, scientists become less reliable sources than parents, absent primary information sources of any kind.
As parents, we therefore often look to front line health professionals such as therapists and nurses for their perspective. These professionals have a broader perspective on childhood health than either parents or scientists. Among such health care professionals, the message is clear: something new and terrible is happening to America 's children. Consider, for example, a quote from a representative of school nurses in Missouri, testifying before Congress in 2000.
"The elementary grades are overwhelmed with children who have symptoms of neurological and/or immune system damage: epilepsy, seizure disorders, various kinds of palsies, autism, mental retardation, learning disabilities, juvenile-onset diabetes, asthma, vision /hearing loss, and a multitude of new conduct/behavior disorders …
We (nurses, principals and teachers) have talked many times about the possible cause(s) of the continuing increase in pervasive developmental disorders (PDD), such as autism. From the literature we have found, we should expect a rate for PDD of about 2-5 in 10,000. In our community the rate in Kindergarten, 1st and 2nd grade is more like 1 in 150. The teaching staff is overwhelmed ….
We are all now faced with a moral dilemma: will we protect the "sacred cow of conventional vaccine philosophy" or will we stand up and speak out for the "health and well being of innocent children"? We choose children. We wonder, which will our government choose?
-Patti White, RN Missouri Central District School Nurse Association. Statement to the Subcommittee on Criminal Justice, Drug Policy, and Human. Resources of the Committee on Government Reform U.S. House of Representatives
In the year 2000, there were 122 cases of AIDS reported in children under five years of age, 37 cases of measles, 57 cases of mumps, 10 cases of rubella, 43 cases of hepatitis B, less than 3,000 cases of pertussis, and zero cases of tetanus, diphtheria and 9 other notifiable diseases. By contrast, California — with over 10% of the U.S. population -- reported over 6,700 new cases of PDD/autistic disorder, by extrapolation a national reporting rate of 70,000 children annually. Over 800,000 children under five reported an episode of asthma. New juvenile-onset diabetes cases probably numbered in the thousands (unfortunately, no reliable surveillance exists).
We do not presume to judge the relative significance of these diseases to childhood health, however we do submit that chronic diseases are in no way less harmful to children. We would also note that the vast majority of children recover from a case of childhood infectious disease (as parents looking back on our childhood, most of us remember uneventful recoveries from these diseases as children).
We represent a growing constituency of parents of children who developed normally and then acquired a chronic developmental disorder early in childhood. Our children will never fully recover. Although we recognize the risk of childhood disease, we would gladly trade a few episodes of vaccine-preventable, infectious disease in our children for the disabilities they will live with for the rest of their lives. Tragically, our ranks have swelled dramatically. Indeed, the numbers suggest that the weight of the modern public health agenda should revolve around families like ours. The problem we represent therefore is new. It has, moreover, emerged and grown in parallel with the growth in the number of required childhood vaccines. So although we recognize the risk of jumping to premature conclusions regarding causality, we also deplore complacency and defensiveness in any form. It is time, indeed long past time, for our public health officials to reset their priorities and turn their attention to the health issues of greatest consequence for children in the 21 st century.