-Caveat Lector- <A HREF="http://www.ctrl.org/"> </A> -Cui Bono?- Dave Hartley http://www.Asheville-Computer.com/dave ----- Original Message ----- From: Alan Phillips <[EMAIL PROTECTED]: Friday, January 21, 2000 10:31 PM Subject: [Fwd: [PROVE] Medical Privacy Presentation] Dawn Richardson wrote: Dear PROVE members, Last year I was invited to sit on a statewide HHS task force sponsored by the Texas Conservative Coalition Research Institute which is taking a year long study on the problems in our health care system that can be addressed by applying the conservative principles of limited government, individual liberty, free markets, and traditional family values. It is composed of legislators, industry representatives, health policy think tank organizations and government employees dedicated to the principles above. I am there representing PROVE's mission and it is the first time that vaccine issues are being represented in this type of a forum in Texas and I am very excited about it. The task force is hoping to promote their findings to other states to duplicate the efforts here. Today, in an all day session, we talked about how federal issues affect the state, and I was asked to present on medical privacy because of all our work fighting immunization registries. I want to thank my husband Scott for being willing to be Mr. Mom one day every month so I can participate. Here is my presentation that I gave today. Dawn The Federal Erosion of Medical Privacy By Dawn Richardson President, PROVE LIFT Texas HHS Task Force Member Presented to: LIFT Texas Task Force: A Principled Approach to Health and Human Services January 21, 2000 The Influence of Federal Policy on Texas Health Care Hello. My name is Dawn Richardson. I feel privileged to have the opportunity today to direct your attention to the accelerated erosion of the privacy and confidentiality of our individual health records by federal government initiatives and programs. There is an alarming trend of federal health programs exploiting the accessibility of an individual's electronic medical record through persistent and continuous attempts to capture and store our personal intimate medical details without our consent under the pretext of regulating costs and improving public health and the quality of health care. The question we must all ask ourselves as the ownership of our medical records continues to evolve away from us and towards the federal government, is this the path that we want health care in this country to continue on? If so, we need do nothing since the momentum is in place. However, if we value choices in treatment options, a private relationship with a health care provider we choose, individual medical care decisions being made in our personal best interest, innovative medical research, and health care cost containment through free markets, we need to reverse this trend and assert that medical records are our private property and access to them should be controlled by a contract between the patient and the provider and/or payer, not the federal government. IMPENDING FEDERAL THREATS TO MEDICAL PRIVACY HHS Proposed Medical Privacy Regulations The most imminent threat to medical privacy is posed by the U.S. Department of Health and Human Services' (HHS) proposed medical privacy regulations governing electronic medical records published in the Federal Register on November 3, 1999. 1 Applying to all individuals, whether their health care is paid for privately or by the government, the proposed rule would dangerously grant federal, state, and local government health employees broad unrestricted access and control of our identifying and private medical information without our consent for anything that can be linked to the HHS-defined "national priority purposes" of research, public health, government health data systems, law enforcement and oversight of the health care system. 2 The section of the proposed rule posing the greatest threat to medical privacy is entitled "Uses and Disclosures Permitted Without Individual Authorization." Un-consented disclosures are rationalized for "public health surveillance, investigations and interventions." Immunization and cancer registries are cited as beneficiaries of this governmental information grab. HHS states in the proposed rule, "We considered requiring individual authorization for certain public health disclosures, but rejected this approach because many important public health activities would not be possible if individual authorization were required." They also state, "We also considered limiting certain public health disclosures to de-identified health information. While de-identified information could be appropriate for many public health activities, there are also many public health activities that require individual identifiers. Instead, we rely on the judgment of public health authorities as to what information would be necessary for a public health activity."3. Specific government agencies listed as being granted access to individual identifiable medical records under the pretext of "oversight" include "State insurance commissions, State health professional licensure agencies, Offices of Inspectors General of federal agencies, the Department of Justice, State Medicaid fraud control units, Defense Criminal Investigative Services, the Pension and Welfare Benefit Administration, the HHS Office for Civil Rights, the FDA, the Social Security Administration, the Department of Education, the Occupational Health and Safety Administration and the Environmental Protection Agency."4 HHS also proposes "to permit covered entities to disclose protected health information to a law enforcement official without individual authorization for the conduct of lawful intelligence activities" 5 and "to permit covered entities to use and disclose protected health information for research without individual authorization� 6 thus making all citizens non-consenting research subjects in a wide variety of federal public health policy experiments. If you can believe it, HHS even proposes to release our private medical details without our consent to banks to process health care payments and premiums.7 According to the comments submitted in opposition to the proposed rule by the Association of American Physicians and Surgeons, ".the Secretary is asserting the authority to circumscribe individual privacy to the narrowest possible realm, which is contrary to the stated purpose of both the statute and the regulations. Neither the statute nor the U.S. Constitution gives the Executive Branch the authority to define national priorities that override fundamental individual rights, or to monitor all medical care." 8 I would like to encourage each individual member of this task force and the task force as a body to submit comments to HHS recommending that this rule be withdrawn and rewritten entirely to conform to statutory and constitutional limitations. HHS will accept public comment on the proposed rule until February 17th. Detailed analysis of the rule congruent with the founding principles of the Texas Conservative Coalition Research Institute and directions for submitting comments can be found at the web sites for The Institute for Health Freedom 9 and The Association of American Physicians and Surgeons 10. EXISTING FEDERAL EFFORTS UNDERMINING MEDICAL PRIVACY Rule Making Authority HHS has a previous history of encouraging the abuse of the rule process to circumvent legislative intent by authorizing the release of protected information on individuals without their consent for inclusion in state and federal medical databases. Even though The Privacy Act of 1974, as passed by Congress, protects a person's Social Security number from certain misuse, the Social Security Administration, under recommendation from HHS, used the rule making process to change the Privacy Act by posting new uses for Social Security numbers in the Federal Register. They enacted this rule for the benefit of states to c reate immunization tracking system files to be linked in a national database on all children without parental consent. The rule states "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."11 The National Immunization Program of HHS's Centers for Disease Control has publicly declared federal plans for expanding these immunization registries to include adults and grow into full-scale medical databases for children centrally operated by the federal government.12 Federal Grant Requirements and Incentives Another justification by state health agencies used for collecting and maintaining personally identifiable and sometimes sensitive private health care information is to satisfy federal grant requirements or to collect available federal grant incentives. In late 1996, a survey of all Texas Department of Health (TDH) programs was conducted to identify health related databases maintained within the agency. Information on more than 190 TDH databases was extracted from the survey results. Many of these databases list that there are no restrictions for access to the data. Additionally, while there is no legislative authority cited for the creation of the vast majority of these databases, a common reason cited to collect and store medical data is to satisfy federal grant requirements.13 One of the reasons given by the TDH for ignoring consent provisions in the state law and mining data for the immunization registry on children cared for by private providers in Texas14 was "Immunization grant guidelines require the department to implement an immunization registry as a condition of receiving federal immunization funds."15 Special interests tried to create a national immunization registry with The Comprehensive Childhood Immunization Act of 1993, but parents and privacy groups successfully defeated the registry portion. However, in September and November of 1993, the Act was quietly 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 additional incentives called the "Performance Based Grant Program" whereby individual states could collect discretionary income awards as high as $100 per two year old child proven to be fully immunized according to federal immunization standards by including them in their state immunization registry.16 CONCLUSION Although cost and "burden" are the most often cited rationalizations by government health program employees for taking our medical information without our consent, we all need to seriously examine what the real costs will be in terms of health care quality and freedom if we continue to allow this to occur. Additionally, we would all be wise to heed the warnings of the experts on the threats to our civil liberties that comprehensive and centralized health databases and registries pose. Agneta Breitenstein, director of the Health Law Institute in Boston, spoke in opposition to registries at the April 6, 1998 CDC Initiative on Immunization Registries meeting in New Orleans. She said, "There are three things that are always true when registries are created: "One, there will always be more information collected than is needed to complete the task; two, it will always be kept longer than we are told; and, three, it will always be used for purposes other than intended." SOURCES CITED 1 http://aspe.hhs.gov/admnsimp/ 2 http://aspe.hhs.gov/admnsimp/pvcsumm.htm 3 http://aspe.hhs.gov/admnsimp/nprm/pvc19.htm 4 http://aspe.hhs.gov/admnsimp/nprm/pvc20.htm 5 http://aspe.hhs.gov/admnsimp/nprm/pvc23.htm 6 http://aspe.hhs.gov/admnsimp/nprm/pvc27.htm 7 http://aspe.hhs.gov/admnsimp/nprm/pvc26.htm 8,10 http://www.aapsonline.org./aaps/confiden/hhsp.htm 9 http://www.forhealthfreedom.org/Publications/Privacy/NeedToKnow.html 11 The Federal Register, March 9, 1995, Volume 60 Number 46, pages 12964-12965 12 Centers for Disease Control's National Immunization Program, National Immunization Registry Clearinghouse Fact Sheet, March 3, 1998. 13 Bureau of State Health Data and Policy Analysis, The Texas Department of Health "Inventory of Health Related Data 1997", 1100 W. 49th Street, Austin, TX 78756, July 1998, p. vii. 14 http://www.vaccineinfo.net/txregistry/outline.htm 15 Letter from Health Commissioner Dr. William R. Archer III to Senator Jerry Patterson dated April 2, 1998. 16 Comprehensive Child Immunization Act of 1993, Sec. 2. Monitoring of Childhood Immunizations, Section 2157 Performance Based Grant Program, (b) Payments to States. PROVE (Parents Requesting Open Vaccine Education) P.O. Box 1071 Cedar Park, TX 78630-1071 (512) 918-8760 [EMAIL PROTECTED] (email) http://vaccineinfo.net (web site) PROVE provides information on vaccines, and immunization policies and practices that affect the children and adults of Texas. Our mission is to prevent vaccine injury and death and to promote and protect the right of every person to make informed independent vaccination decisions for themselves and their families. <A HREF="http://www.ctrl.org/">www.ctrl.org</A> DECLARATION & DISCLAIMER ========== CTRL is a discussion & informational exchange list. Proselytizing propagandic screeds are not allowed. Substance�not soap-boxing! 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