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The Texas Immunization Registry Controversy

Summary
Chronological Account

Various Media Coverage During Controversy

Summary

You are about to read a chronological account of a bureaucracy out of control. These events will shock you and underscore how important it is for concerned citizens to stay on top of government agencies and to keep their legislators informed.

As you will see, the Texas Department of Health has engaged in numerous questionable and potentially illegal activities in their creation and implementation of a statewide immunization tracking computer registry (ImmTrac). TDH's goals were to undermine parental rights and give themselves control of our children's confidential medical records. Every action and interaction has been recorded on this site to serve as a permanent reference record in case any government agency, physician or insurance trade association, or drug company attempts to change the law to put profits or industry convenience ahead of parental rights and health record privacy.

In 1997, the Texas Department of Health tried to use legislation to legally force ALL Texas children into the statewide immunization tracking system. We worked very hard to get the law amended to require TDH to obtain WRITTEN INFORMED CONSENT from the parent to include their child, and to secure the right of a parent to remove their child if they have previously consented. We also succeeded at getting the law to require the rules to protect the confidentiality of a patient in accordance with Texas's Medical Practice Act.

We could not have succeeded without the help of the many Senators and Representatives who hold equal reverence for parental rights. Without the law change, supported unanimously by both the House and Senate health committees, TDH would have never even listened to us.

In February of this year, TDH wrote their first set of rules to implement the law and opened them up for public comment. We educated the public that TDH was circumventing the legal protections we worked so hard to obtain because their rules called for a tracking system where parental consent could be assumed. They additionally tried to grant themselves authority to release records out of state to other state and national immunization registry programs.

Many parents worked hard with us to help get the word out. We all wrote our letters, testified at hearings, went to our legislators, and the rules were withdrawn thanks to public opposition.

After personally meeting with TDH to relay parental concerns, I found that my daughter's identifying information and mine and my husband's social security numbers were already in their system. TDH violated the law we worked to get passed which required written informed consent before information could be entered into the registry or released from the registry. We had given neither. In fact, phone staff even faxed me a file on my daughter that contained an Immunization Tracking ID number TDH had already assigned to her. I just provided them with my daughter's name, birthdate, my first name, and the place of birth - they did not have any written consent from me on file nor did they verify I was in fact the parent. We later found that the registry employees had illegally helped themselves to the confidential portions of hundreds of thousands of birth certificates to get around the legal requirement of having to obtain parental consent.

This discovery prompted legislative inquiries and my filing of a complaint with the local District Attorney's office. It turned out that TDH had populated the registry with the records of 3.3 million children before legislative authority! Meanwhile, we had received reports from parents all over the state where their children were forced into the registry without their legally required informed written consent. Even though TDH had committed several class A misdemeanor offenses, the DA's office would not cite criminal intent, so to enforce the law, our only option would be to file a civil lawsuit. Fortunately, legislative and parental pressure resulted in about 700,000 of these records being deleted, but TDH kept the rest.

All of this was occurring simultaneously with the CDC's tour around the country promoting a "National Immunization Registry Network". Rebecca attended their April conference in New Orleans along with a state senatorial staff member. I wrote testimony to be delivered to the National Vaccine Advisory Committee and the CDC's National Immunization Program at the May Washington D.C. public hearing in strong opposition to this scheme of limiting health care options and forcing government dictated medical procedures. This was submitted on our behalf by Barbara Loe Fisher, President of the National Vaccine Information Center and is now posted on the CDC's National Immunization Program web site. TDH denied involvement with the federal government on these plans, but we found their employees had attended these national meetings and continue to sit on the national immunization registry workgroups to develop strategies for creating a national registry network.

TDH attempted a second set of rules in August. We launched another letter writing campaign asking people to write to their legislators, TDH, and the Board of Health. Here again loopholes in the rules provided TDH with opportunities to compromise informed consent and the legislative protections governing the security, collection, and release of confidential medical information.

In September, I went to the Texas Board of Health and shared with them the experience of finding my daughter in a registry that legally required consent for her entry and release of her information, to which TDH had ignored both requirements of the law that I helped get passed. I urged them to reject rules that did not address our concerns.

The Board of Health came through and told TDH that their rules had to comply with the law, so TDH would have to revise them again. Additionally, I was told by legal counsel to TDH that staff had been directed to write the rules to comply with the law because this issue was negatively affecting the relationship between TDH and legislators on other issues. TDH finally made some major revisions with very significant improvements.

I had to keep calling TDH and actually drive down there to get a copy of the third set of rules because the decision was made to only present them to the Board, and not open them up for public comment again. After attending another meeting with TDH on November 17th, and speaking in front of the Board again on November 19th, the final rules were adopted on November 20th. These rules went into effect January 1, 1999.

The hard work and diligence paid off. Here is a final summary of the status of the Texas Immunization Tracking System, ImmTrac, in law and rule:

CONSENT ONLY
TDH, doctors, and insurance companies may only submit a child's data to the registry when a parent has given prior written informed consent. It is an opt-in system. No information may be forwarded to the Texas Department of Health if consent is denied, including information relating to the denial of consent.

WITHDRAW ANY TIME
A parent who has previously consented may submit a withdrawal of consent in writing to have their child's entire immunization history and record deleted from the registry and all other files at TDH.

DATA COLLECTION
TDH is still collecting too much personal data (including the child's social security number), but since consent is now clearly implemented by rule, TDH has indicated that parents who don't like it, shouldn't participate.

DATA RELEASE
Children's records may ONLY be released with a parent's written informed consent to the public health district, local health department, child's doctor, child's school, or child's day care. All other recipients attempted by TDH have been deleted.

DATA RE-RELEASE
Data may not be re-released by anyone to anyone. All re-release provisions including other state or national registries and individuals who promote immunizations have been deleted.

NO AGENTS
TDH has removed defining immunization providers as agents for TDH for the purposes of the registry. This is important because it could have shielded providers from their legal liability under their statutory obligation to maintain doctor/patient confidentiality.

RECORDS ARE CONFIDENTIAL
Registry immunization records are confidential medical records and must be protected by all registry users as confidential as defined by Texas Law.

CHILDHOOD IMMUNIZATION REGISTRY ONLY
All definitions now represent that this registry is only legislated and implemented to be for children (patients under 18). It is not authorized to be used for adults. It is not authorized to collect other health information.

Problems with forceful consent forms still exist, and TDH is still getting away with violating the intent of the law with a mere check box of consent on the birth certificate which forces a parent to deny consent in writing. The Board needs to hold TDH to fixing these problems. There are also other loopholes and problems that still exist, but they are not as threatening as the hurdles we have overcome so far. Of course we will follow this.

Considering that 2 years ago TDH introduced a law that would have made this system mandatory for every child in the state and would have released our children's information without our consent to other state registries to help create a national immunization registry network, we've come a long way. However, other interest groups and TDH and CDC employees have had the audacity to publicly state that "parental consent is a burden", and they are interested in changing the laws to undo every consumer protection we have accomplished. All I can say at this point is we will continue to get the word out and follow this to protect parents' rights. The use of government computer surveillance to force private citizens to comply with government determined medical procedures is a threat to the core of our freedom. It creates the foundation for even more intrusive monitoring and compliance programs. The most frightening part of this is that laws and rules are being implemented across the country to force children to be a part of these systems, but for the time being, we are a little safer in Texas.

Chronological Account

3/13/97 - First Legislative Pass at Establishing a Registry

The original version of the Immunization Tracking bill had no provisions for parental consent for inclusion. Inclusion was mandatory for everyone. See H.B. No. 3054 - Introduced Version

6/18/97 - Final Legislation with Consent and Confidentiality Amendment

Legislators, parents, and interest groups expressed the following concerns: 1) Consent should/could never be assumed. The registry should/could only include any information pertaining to a child and their immunization information only if the parent gave written informed consent. 2) Written parental consent should be required to release any information. 3) Personal information needed to be limited to respect privacy and confidentiality concerns. State Senator Jerry Patterson wrote an amendment to reflect these concerns that was passed by the 1997 Legislature and signed by Governor George Bush into Law on June 18, 1997. See H.B. No. 3054 - Enrolled Version

2/20/98 - Proposed Rules for Registry Legislation HB 3054

The Texas Department of Health posts its proposed rules for implementing the Immunization Tracking Registry. See Texas Department of Health Proposed Rules.

2/25/98 - PROVE Asks for Public Support

PROVE requests members and interested parties to write letters during public comment period. See Letter Requesting Support.

2/20/98-3/20/98 - Conflicts Between Rules and Law Are Exposed During Public Comment Period

The proposed rules circumvent the intent of the consent and confidentiality provisions in the amended legislation. Parents, legislators, and special interest groups submit an unprecedented amount of letters outlining concerns to be filed as public record during the public comment period.

Letters from PROVE Founders
Texas Legislative Letters
Letter of Legislative Intent by Amendment Author and Support
Special Interest Letters

3/20/98 - Summary of Parent Meeting with TDH

TDH invited concerned parents of PROVE to a meeting to clarify concerns with the rules We broadcast an email to all PROVE members and interested parties to update them. For excerpts from the email, see Parent Meeting Summary.

3/23/98 - Parents Learn Children Entered into Registry Without Consent and Legislative Authority

Excerpts from an email broadcast from PROVE to its members. See Children Already In Registry.

2/26/98 - TDH Violates State Law - Legislative Press Release

Press Release from a Texas State Representative reveals that TDH violated state law by releasing children's confidential immunization information without written parental consent. See Press Release.

7/1/98 - TDH Under Sunset Review

Every 12 years, each state agency must be reviewed by the Sunset legislative oversight committee. PROVE submits oral and written testimony to be considered in TDH's review. Based on TDH's behavior, PROVE recommends legislation limiting TDH's autonomous rule making authority to require involvement with the individuals or groups their rules regulate and sunset legislation to shut down the ImmTrac program and prohibit the connection of Texas medical databases with other state or federal databases. See PROVE Report to Legislative Oversight Commission.

8/7/98 - TDH Withdraws First Set of Rules and Proposes New Rules Opening them for Public Comment

Due to unprecedented public comment, TDH withdrew their first proposed rules and resubmitted a new set of proposed rules on August 7, 1998. See Texas Department of Health Proposed Rules #2.

8/14/98 - PROVE Posts Alert to Write to Oppose Second Attempt at TDH Rules

Although TDH carefully chose their wording in their second attempt at rules to give the appearance of protecting private information on Texas families, closer examination reveals the included protections are only a smokescreen. The loopholes in the rules provide TDH with opportunities to compromise informed consent and the legislative protections governing the security, collection, and release of confidential medical information. See Urgent: PROVE Request for Letter to Oppose Immunization Tracking.

8/7/98-9/8/98 - Other Letters Written Against Proposed Rules #2

Physician Statement Against Texas Registry
State Senator Jerry Patterson
U.S. Senator Phil Gramm
State Representative Jerry Madden
State Representative Bob Hunter
Rebecca Rex
Texas Conservative Coalition

9/11/98 - PROVE Requests Board of Health to Withdraw or Amend Rules

PROVE Addresses Board of Health

11/19/98 - TDH Submits 3rd Set of Proposed Rules to the Board

PROVE and State Representative Jerry Madden respond to Board

TDH is instructed by the Health Commissioner and the Board of Health to write rules that comply with the law because their unwillingness to follow legislative intent makes many legislators angry. These rules are never made available to the public for comment, however PROVE requests a copy to review. Significant changes are finally incorporated, however, the following problems remain and are presented to the Board.

PROVE Letter to Board of Health
State Representative Jerry Madden's Letter

11/20/98 - Texas Board of Health Approves Final Rules

See Chapter 100. Immunization Registry - 25 TAC 100.1-100.11

Various Media Coverage During Controversy

Lone Star Citizen (Focus on the Family's Texas insert) July 1998
Free Congress May 18, 1998
Austin American Statesman April 25, 1998
WORLD Magazine April 25, 1998
Dallas Television Coverage March 6, 1998
Austin American Statesman March 13, 1998
Houston Chronicle Op-ed September 15, 2002

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