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Government Immunization Registries - A Threat to Privacy and Freedom
MAY 1998
As a parent, a citizen of the United States of America, and co-founder of the vaccine
educational organization Parents Requesting Open Vaccine Education (PROVE), I have some very serious
concerns about the threats to privacy and parental rights that the National Immunization Registry
Plan, being developed by the National Vaccine Advisory Committee(NVAC) and the CDC's National
Immunization Program(NIP), presents.
It is very clear from reviewing CDC documentation on the National Immunization Registry Plan,
that these U.S. government agencies and officials are ostensibly using public health to create a
massive networked computer database to create a national surveillance and enforcement system to
monitor, intimidate, harass, and punish loving conscientious parents, their children, and their
health care providers if they do not conform with every government recommended vaccination health
care policy. We are requesting that our elected government officials, NVAC, and NIP put a
stop to this National Immunization Registry Plan.
At What Cost?
The Comprehensive Childhood Immunization Act of 1993 tried to create a national registry in
April 1993, but parents and privacy groups successfully fought it. In September and November of
1993, the Act was amended to create the registry anyway, sidestepping public opposition, by
providing the funding to individual states to create their own nationally connectable tracking
systems. $417 million dollars were initially appropriated with incentives outlined whereby
individual states could collect discretionary income as high as $100 per two year old child proven
to be fully immunized by including them in their state immunization registry. In a state like Texas,
for example, where 3.3 million children have already been entered into their database, the majority
without parental consent or knowledge, almost one third of a billion dollars could be spent to
"reward" Texas. Add these numbers for all 50 states to see that billions of taxpayer
dollars will be spent on a system that is not wanted or needed by the public. We are requesting
that our elected government officials, NVAC, and NIP stop spending our federal tax dollars on
immunization tracking systems.
To Whose Benefit?
The National Immunization Program defines its role in Immunization Registry development to
increase childhood immunizations to 90% for 2 year olds by the year 2000. Surveys for 1996 show that
78% of all two-year-olds have already received all their vaccines. It does not make sense that
billions of dollars will be spent on only 12% of the 2-year-olds when other accessibility programs
can be more cost effective. There must be other motivations. The National Vaccine Advisory Committee
is working with federal health officials and vaccine manufacturers to develop more than 200 new
vaccines, including an AIDS vaccine. Many of these will be recommended by government officials for
required use by all citizens. It is clear that the vaccine manufacturers will reap tremendous
financial rewards with a government sponsored vaccine enforcement database. What better way exists
to ensure more customers for their product? Data from the Federal Elections Commission show that our
U.S. Representatives and Senators who appear to be supportive of this immunization registry program
are receiving numerous campaign contributions from vaccine manufacturers. It is also very clear from
CDC literature that the collection of information on children for this system is merely a first
step; collection of adult information and enforcement and compliance programs for adults lurk right
around the corner. We are requesting that our elected government officials, NVAC, and NIP protect
a citizen's right to make informed, voluntary health care decisions, including vaccination
decisions, especially since we are entering into this new era of rapid vaccine development and
increased recommendations.
Private Foundation Manipulation - Socialized Medicine and Limiting Health Care Options
The Robert Wood Johnson Foundation (RWJF) is the $4 billion dollar estate of the founder of
Johnson and Johnson - the pharmaceutical and health supply company in Trenton, NJ. RWJF distributes
$186 million dollars a year on grants to programs to change how health care is delivered in this
country. Remember the infamous closed door health care reform meetings held by the first lady
herself? The lawsuit against Hillary Clinton- a self-admitted past Program Director of RWJF, her
task force, and cabinet officials showed that nearly 1000 of the 2000 people on Ira Magaziner's
Interdepartmental Working Group were either employees, officials, health policy fellows, grantees,
contractors or grantee institutions of RWJF. RWJF money continues to seed a multitude of state and
federal healthcare programs moving them towards socialized medicine concepts. "Making the
Grade", a RWJF program, promotes the controversial school-based health clinics run as managed
care capitation programs reimbursable by Medicaid, of which now there are more than 1,000 in 45
states and the District of Columbia. A small study by the Columbia University School of Public
Health found that 42 percent of diagnoses at high-school clinics in Oregon and 24 percent of those
in New York were "gynecology/sexuality related." Because of Medicaid waivers created by
RWJF that expand recipient eligibility to all students in a school and change payment to a capitated
fee instead of fee for service, school-based health clinics can reasonably expect to generate $4000
in Medicaid income per student in some situations. Once the students are in the system, the parents
will then be encouraged to use the same school-based clinic. This is able to occur because every
health area of our federal government has been infiltrated by RWJF directors, including but not
limited to Medicare, Medicaid, the Department of Health and Human Services, and the CDC. In 1991,
two years before any federal immunization tracking legislation existed, the Robert Wood Johnson
Foundation launched the All Kids Count Project (AKC) to develop vaccine tracking and monitoring
systems for preschool children. Former Director of the CDC, Dr. William Foege, is the director of
AKC. Other private foundations joined this effort, resulting in 24 funded projects. These projects
supply data directly to the CDC. The All Kids Count has project representatives in many states that
continue to shape and influence the development of a national immunization registry network. By
ensuring the success of the national registry program, AKC virtually guarantees RWJF access to every
child's medical files for their school-based health programs to milk the Medicaid system dry by
turning it into a national healthcare system. The Henry J. Kaiser Family Foundation operates in a
similar fashion to change the way health care is delivered to be more in line with "socialized
medicine style" managed care health programs. We are requesting that our elected government
officials, NVAC, and NIP put a stop to RWJF's and other private foundations' financial and policy
manipulations of government sponsored health programs.
Privacy Rights Violated
Information privacy has been defined by the Institute of Medicine as "the interest of an
individual to control the dissemination and use of information that relates to the individual or to
have information about oneself be inaccessible to others." Despite privacy and consent concerns
of parents and public interest groups, NIP has maintained its preference for mandatory inclusion of
all children in the registry system without consent of the parents. The National Immunization
Program states on the National Immunization Registry Clearinghouse Fact Sheet dated March 3, 1998,
"NIP supports the ultimate goal of enrollment of all U.S. preschool children in state or
community-based immunization registries that are able to exchange information with other
registries, integrate with the healthcare delivery system, and support essential public health
functions. We see registries as the possible first step in the development of an electronic
pediatric medical record."
The recommended Core Data Set for immunization registry entries includes the following personal
identifying information: Patient First, Middle, and Last Name, Alias and Former Names, Address,
Phone Number, Birthing Facility, Social Security Number, Birth Date, Sex, Race, Primary Language,
Birth Order, Birth Registration Number, Birth State/County, Medicaid Number, Mother's First Middle
and Last Names, Mother's SSN, Father's First Middle and Last Names, and Father's SSN. This is far
too much personal information.
The Social Security Administration has abused the rule making process to help create a tracking
system file on a child without parental consent. On March 9, 1995, Volume 60 Number 46, pages
12964-12965, the Federal Register reports a new routine use of the Social Security Privacy Act of
1974.
"The proposed routine use would permit SSA to send the SSNs of newborns, and as a one
time disclosure, the SSNs of children born since December 31, 1990, to the State BVS in which a
birth is recorded without having to secure parental consent.. Public health program uses of
the SSNs would include, but are not limited to, establishing public immunization registries.
Using the SSN as the primary identifying record number would facilitate the process and lower
the cost of creating and operating a national network of coordinated statewide immunization
registries."
Once a registry links with the State Bureau of Vital Statistics, it imports the parent's social
security numbers to be included in their child's file without any consent of the parent. This is how
the state of Texas managed to populate it's registry with 3.3 million children before it was
legislated the authority or had consent This is not acceptable.
Administrative simplification provisions of the Health Insurance Portability and Accountability
Act (HIPAA), P.L. 104-191 may jeopardize a citizen's fundamental rights to protect their personal
and medical information. Department of Health and Human Services recommendations include obviating
consent for release of medical information when they define the situation to "be in the
interest of public health." Many pieces of proposed "privacy" legislation for
implementation of HIPAA requirements include these exceptions to consent. The National Immunization
Program states its position that "State laws intended to ensure privacy have presented barriers
to immunization registries in some areas. Preemptive Federal legislation is needed..."
"The National Vaccine Advisory Committee has adopted a policy on confidentiality that would
permit localities and states to simply include all children in an immunization registry." We
are requesting that our elected government officials, NVAC, and NIP require a citizen's prior
written informed consent to be enrolled in any health registry. Participation in any health
database/registry must be entirely voluntary with no economic or punitive sanctions for
non-participation.
A copy of an internal IRS audit dated September 30, 1997, obtained by the Associated Press,
states "Under current procedures, an imposter who knows a taxpayer's name, address, and Social
Security number can find out tax and income information from the Internal Revenue Service with a
simple phone call." Vaccination records are accessible by many people. We are requesting
that our elected government officials, NVAC, and NIP prohibit the use of the Social Security
Number of a child or their parents on any vaccination record.
Outreach Activities?
NIP and AKC outline using a national registry program for aggressive and automated outreach
activities. They call these outreach activities "Reminder/Recall methods." These methods
include postcards and letters, telephone auto-dialers or personal phone calls, and home visits.
Parents and the health care providers of the parent's choice, not the government, should be
responsible for choosing and providing health care for children. This National Immunization Registry
Program crosses the line by harassing parents with automated and personal home telephone calls.
Government home visits for non-compliance with the government's choice of a vaccine schedule
demonstrates why this program needs to be stopped. Vaccine vans, otherwise known as "Mobile
Units", are already being deployed for home visits in pilot programs. Parents and providers are
the only ones who should be allowed to track individual children's health care. Not all parents and
doctors agree with government vaccine recommendations. For example, many parents disagree with
government requirements for the Hepatitis B vaccine. Hepatitis B is transmitted primarily through
sharing infected drug needles and sexual contact with an infected person. The government is
mandating that parents inject their children with a vaccine for which only 5% of the population will
ever be in the risk category. Parents with the input of their doctors should be deciding which
children fall into those risk categories, not the government. In addition, many physicians disagree
with mass vaccination for chicken pox with the varicella vaccine. With the development of vaccines
for things like ear infections and diarrhea, we are clearly seeing a trend of vaccine development
aimed at what vaccine manufacturers call "improving quality of life" (less hours of work
missed for parents, etc.). Again, these choices need to remain the decision of individual citizens
after informed discussions with their health care providers reviewing all potential risks and
benefits of the vaccine. The federal and state government's outreach/enforcement activities to
implement these recommendations and mandates are not acceptable. If parents would like to
participate in a reminder system, it should be set up between the patient and his health care
provider and be purely voluntary. We are requesting that our elected government officials, NVAC,
and NIP leave important health care vaccination choices to citizens and cease these invasive and
harassing compliance programs.
In conclusion, again we are requesting that our elected government officials, NVAC, and NIP
put a stop to this National Immunization Registry Plan.
Sincerely,
Dawn Richardson
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