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Immunization Bill Would Create Government Medical Dossiers on Everyone, and Would Not Improve Health

Synopsis: This bill would have the state study the administrative costs of purchasing free vaccines for practitioners who agree to provide immunizations at a price controlled by the state.nbsp; It would have the state study the implementation of a reward system for physicians who keep electronic records.nbsp; It would have the state study the operation of a vaccine cooperative.nbsp; Vaccine cooperative is not a term in general use.nbsp; It is not defined in the bill except as something which would purchase vaccines for the immunization of children.

What the Bill Does:nbsp; The proposed legislation expands the board of health#39;s information gathering activities from infants to all children under 18.nbsp; It requires that the state implement a comprehensive immunization and health related information tracking system on individuals by July 1, 2001.nbsp; The Department of Health is authorized to accept private funding from any source in order to make this happen.nbsp;

Discussion:nbsp; This bill lays the groundwork for an electronic database that will ultimately include personal and medical data on everyone in the state under age 18.nbsp; The state currently has a system to track infant immunizations.nbsp; There is no evidence that expanding it will substantially improve public health.nbsp; The expansion will create an infrastructure that will substantially lower the cost of compiling individual dossiers.nbsp; The provision allowing an executive department to accept private money for policy formulation leaves state government wide open to charges of selling influence in the executive branch.nbsp;

The current tracking system provides adequate control of vaccine preventable diseases.

Current immunization programs in the United States do a good job of preventing disease.nbsp; In 1995 there were 301 cases of measles, 840 cases of mumps, 4,315 cases of pertussis, no cases of wild polio, 128 cases of rubella, 34 cases of tetanus, and 1,164 cases of invasive Hib disease.

Immunization registries threaten civil liberties

Proponents of immunization registries tend to be proponents of government controlled health care.nbsp; They realize that a computerized individual health information is a key to managing a government system in which the emphasis is on population health and individual well being takes second place to cost control.nbsp; As it is politically difficult to argue against any measure that would prevent children from getting sick, they use vaccine registries as a strategy for getting state legislatures to authorize computerized information systems designed to store individual records.nbsp;

Once begun, the vaccine registries have been transformed into statewide tracking systems with links to federal databases.nbsp; As Susan Abernathy, Program Analyst for the National Immunization Program at the Centers for Disease Control put it, The goal isto compile complete immunization histories for each uniquely identified patienta comprehensive system couldtarget at-risk populationsand integrate immunizations with other preventive health programs.

Colorado already collects complete demographic data on clients and mammography results on clients from 35 private mammography centers in the Denver area.nbsp; Data come with individual identifiers.nbsp; Low-income women have data on pelvic exams, breast exams, PAP smears, and mammograms stored separately, again with unique identifiers.nbsp; WIC participants have unique identifiers that the state uses to collect information on a person#39;s demographics, program participation, language, education, and nutrition.nbsp; Information from the WIC system is linked with other Women#39;s Health Information which includes information on family planning and prenatal visits.nbsp; Such information has been used by state officials to create files to track individual behavior and birth outcomes for participants in a Stop Smoking in Pregnancy Program and to study birth outcomes for women on Medicaid.nbsp; Most of those involved have not been asked whether they wish to be used as research subjects.

Expansion of the immunization registries has already begun in other states.nbsp; In Massachusetts, the immunization registry has been linked to WIC program records and schools.nbsp; Florida has linked its registry to AIDS, sexually transmitted disease, and TB reporting systems as well as Children#39;s Medical Services Offices serving children with special care needs.

An oppressive agency would have no problem using the proposed immunization tracking system to target those it considered undesirable–say, for example, homosexuals, the mentally ill, smokers, drinkers, the obese, gun owners, and religious fundamentalists.

When combined with current law, this bill would enable the construction and dissemination of individual dossiers

Colorado law already empowers the board of health to collect unspecified epidemiological information as part of the existing infant immunization tracking system.nbsp; The proposed law would require that that system be computerized by July 1, 2001 and that it be extended it to all children under the age of 18.nbsp; Now that the state has begun defining health as mental, psychological, physical, and sociological health, epidemiological information is very broadly defined and existing law would allow the collection of almost any kind of personal information under the heading of epidemiological information.nbsp; School-based health clinics in Colorado currently collect and store information on everything from a student#39;s sexual habits, to his family#39;s gun ownership, to whether his parents get along well and his friends obey the law.nbsp;

This bill implicitly assumes that the state has a right to collect individual information without individual consent and use it for whatever purpose state officials consider the public interest.nbsp; Individuals are not asked whether they wish to be included because under current law the state automatically gathers infant immunization records from physicians, clinics, schools, parents, health insurers, hospitals, and anyone else who gives immunizations.nbsp; While provider participation is not required, the law does not require a mechanism allowing individuals to opt out.nbsp; Presumably people would be included even if they should choose, for religious or personal reasons, not to immunize their children.nbsp; There is no requirement that the data be destroyed once someone reaches the age of 18.

The confidentiality of such records cannot be assured because unauthorized access to even heavily secured data systems is a continuing problem.nbsp; Existing law does little to control the dissemination of information from individual records.nbsp; They may be released to researchers, a term that covers half the population, to schools, to managed care organizations, to health insurers, to hospitals, and to anyone the state contracts with for operating the infant immunization program (1999 CRS 25-4-1705(5)(3)(II)).

The law does not require the state to purge records of identifying information before they are disseminated.nbsp; It merely requests that every effort be made to limit disclosure of personal identifying information.nbsp; Given the state#39;s past record of trying to make money selling dr
iver#39;s license pictures, its interest in controlling medical care costs, and its growing interest in regulating even legal behaviors, this is not reassuring.nbsp; Individuals have no recourse if the state misuses this information for fishing expeditions.nbsp; There is no requirement controlling the data elements subject to release, there is no law specifying when the released records must be destroyed, and there is no enforcement mechanism.nbsp;

Costly to operate, such systems may not be the best use of taxpayer dollars.

Operating costs for any management information system are high.nbsp; Kirt W. Emery, M.P.H of the Kern County California Department of Public Health concluded that implementing a county wide immunization registry required expand[ing] existing health department resourcesWork loads for computer personnel, special projects coordinators, legal services, marketing personnel, accounting staff, and secretarial services have increased as the direct result of implementing an immunization registryBesides human resources, registries are technological bottomless pits

Given the already low rate of vaccine-preventable childhood diseases, the experience of other states suggests that even spending $500,000 to study the extension of Colorado#39;s existing immunization registry probably does not represent the best use of taxpayer money.nbsp; Massachusetts estimates that implementing its vaccine registry will end up costing about $3 million.nbsp; Annual operation and maintenance costs are estimated to be about $2-3 million.nbsp; Oregon#39;s system spent $1.8 million in 95-97 and $3.7 million in 97-99.

Allowing private financing corrupts state bureaucracies

This bill includes a provision that would allow the state health bureaucracy to accept private money to study and implement its proposals.nbsp; In the past, these private monies have taken the form of grants from the Robert Wood Johnson Foundation, a private foundation that supports radical health care reform.nbsp; Immunization registries have been a central component of the Foundation#39;s All Kids Count program.nbsp; It has already paid the state $240,000 to develop and implement the Immunization Program in the Disease Control and Environmental Epidemiology Division in the Colorado Department of Public Health and Environment.nbsp; Now the department wants public money to expand the program.

The Foundation typically builds official support for its programs by providing partial funding for a few staff positions within a state#39;s health bureaucracy.nbsp; In order to keep receiving their paychecks, the people hired for those positions must keep the Foundation happy.nbsp; They have a strong incentive to champion the Foundation#39;s agenda within state government.

The Foundation supports their efforts with model legislation, technical support, and informational meetings.nbsp; If they do their work well, they convince the state to adopt the Foundation program and it moves from the study phase to the implementation phase.nbsp; Foundation funding ceases and the state hires its former staffers permanently.nbsp; The state adds them to its payroll because they have become the resident experts on the program that they have urged the state to implement.nbsp; The more than $4.5 million in grants that the state health bureaucracy has accepted from the Robert Wood Johnson Foundation since 1992 has been more than sufficient to populate it with people sympathetic to the Foundation#39;s radical view of health care reform.nbsp;

Letting Colorado#39;s health bureaucracies accept private monies to fund programs creates overt conflicts of interest.nbsp; Many of the state#39;s citizens do not agree with the Robert Wood Johnson prescriptions for health care.nbsp; By funding the departments directly, the Robert Wood Johnson foundation can influence hiring and increase the probability that dissenting opinions will not be seriously considered.nbsp;

This proposed expansion of the immunization registry is a case in point.nbsp; There is no evidence that gaps in existing immunization programs pose a threat to the health of the public at large.nbsp; There is a great deal of evidence to suggest that this kind of data collection could threaten individual civil liberties.nbsp; Though many of today#39;s most pressing public health problems are limited to subsets of the general population, the health bureaucracies continue to press for state financing of systems to collect and disseminate personal information on every individual.

By letting state agencies accept private money, the legislature makes it legal for outsiders with an agenda to buy influence in the various bureaucracies that make up the executive branch of government.nbsp; In any other context this would not be considered good government.

Prepared bynbsp; Linda Gorman, Senior Fellow, Independence Institute