About Us 

Parents Requesting Open Vaccine Education
    PROVE Home    |     Donations     |     Subscribe     |     Other Resources

Your Rights and the Law
Vaccines: A Closer Look
Other Resources

PROVE Addresses Board of Health Objecting Second Set of Rules

September 11, 1998

Texas Board of Health
1100 West 49th Street
Austin, TX 78756
Fax (512) 458-7202

Dear Texas Board of Health:

Hello, my name is Dawn Richardson. I appreciate the opportunity to speak with you today as parent who is greatly concerned with TDH's proposed rules implementing a statewide immunization tracking system. I understand that the rules did not appear on today's agenda, however, it would be very difficult for my family if I had to travel to Harlingen next month to speak with you.

The Texas Department of Health's initial attempt to legislate a statewide immunization tracking system in HB 3054 would have mandated the tracking of our children where families didn't have a choice. Doctors and insurance companies would have been required to give TDH our children's confidential medical records for a nationally accessible database regardless of whether the parent had given consent or not. Parents shared their concerns about their freedom of choice in health care decisions for their family and their right to privacy of their children's medical information with legislators. Consequently, TDH's controversial plans were thwarted when the legislature astutely amended the legislation to require parental consent and limit medical record access and release.

Despite the law, TDH has repeatedly circumvented consent requirements. In February, TDH published rules allowing them to "assume" parental consent. TDH wrote provisions which promoted unrestricted data exchange. Objections from parents and legislators led TDH to withdraw the rules and re-write them, and we just completed a second public comment period.

When I found my daughter in TDH's immunization registry on Monday, March 23rd, 1998, I was angry, frustrated and felt betrayed by TDH. Neither my husband nor I had ever given our consent at any time. We had worked hard within the system to protect our rights to keep our daughter out of any immunization tracking database. Now it is evident that TDH employees not only lied to parents and misled legislators, but they actually ignored the consent provisions of HB 3054 thus breaking the law.

Just three days prior, I participated in a meeting at TDH where I represented a grassroots effort by parents concerned about TDH's first set of proposed rules. I sat across a table from the director of the Immunization Division Robert Crider, the Associate Commissioner of Disease Control Dr. Diane Simpson, legal counsel for TDH Monty Waters, ImmTrac Administrator Vicky Cowling, and Government Relations Representative to TDH Jim Audette. My most significant concern at the time was TDH's unwillingness to implement the consent provisions in the law in their proposed rules. TDH employees looked me in the eye and assured me that the "hypothetical" set of circumstances where my child would get into this system without my consent would never occur. Imagine the shock and repulsion I felt when I learned that not only was my daughter already in this registry along with mine and my husband's social security numbers, but the ImmTrac employees had deliberately taken this information without my consent from the confidential portion of my daughter's birth certificate application. All of these employees of TDH knew they already had this information on my child and never told me. If I hadn't found out on my own by calling up and asking questions of phone support staff, I would have never found out.

What occurred to my family concerned State Senator Jerry Patterson enough to write an inquiry letter to TDH to try and ascertain the real status of ImmTrac. The reply letter revealed that TDH had entered 3.3 million children's records since 1995. Furthermore, over 700,000 records had been created from the confidential portion of birth certificate applications without the parents' knowledge or consent like in my daughter's case. The legislature had authorized the creation of the registry unaware of TDH's covert premature efforts.

To make matters worse, TDH faxed my daughter's report to me based on a telephone request where all I provided was my name, my daughter's name, her birthday and the county we live in. Once I found my daughter was in the registry, I wanted to know what was recorded about her and us, so I asked TDH to fax her report to me. How did TDH know it was really me? I hadn't signed a release form like the law requires. Anybody could have impersonated me to get this information faxed to them.

How do I know so clearly that TDH broke the law and misled legislators? Almost a year earlier I had testified before the Senate Health and Human Resources Committee with my concerns that parents needed to be able to protect their children's private personal and medical information. Even though Mr. Crider gave misleading statements concerning TDH's intentions for the registry (please see appendix for my husband's letter submitted in the first comment period), the committee agreed, and Senator Patterson submitted an amendment which required TDH to get written consent from a parent to include their child in the registry and to release data from the registry to anyone. HB 3054 was signed into law on June 18th, 1997 by Governor Bush with these written consent requirements. Despite all this, TDH misled me and "helped themselves" to my daughter's personal records with the intention of releasing them to all registry users. They then faxed it out over the phone to an unverified caller. TDH still needs to be held accountable for this.

My next opportunity to meet with TDH to discuss our concerns occurred on May 26th, 1998 at the state capitol with the Commissioner of Health Dr. Archer, ImmTrac Administrator Vicky Cowling, and Government Relations Representative Jim Audette. Rebecca Rex, another concerned parent, and I were accompanied by Senator Jerry Patterson and his staff including legislative aides Mark Loeffler and Melvin Edwards. This effort by Dr. Archer to make himself available to concerned parents was very much appreciated.

Just prior to the meeting, I was able to review a rough draft of a partial second set of proposed rules which revealed another whole set of concerns. Some of these concerns are even more troublesome in light of the fact that Dr. Archer, in his position of Health Commissioner for TDH, promised us all in our meeting together on May 26th that these problems would be corrected in the new rules. Based on his sincere attempts to listen to concerned parents, I believe he was not even aware that his staff did not make the requested changes to TDH's second attempt at proposed rules. This has dire implications for the agency and the Immunization Division's employees.

A large area of concern to us contained the broad release provisions. When Senator Patterson read the consent language, he picked up the problems with the statements on the form allowing for release of information to the "Commissioner or Designee" and as well the re-release to those who administer and promote vaccines. Dr. Archer agreed. Not only have the rules left in this language, but they've added even more recipients that were never approved by the legislature like DHS and past and current health plans despite the verbal agreements that only the record from a paid claim should be accessed by an insurance company.

Another crucial area of concern was restricting the registry to a Texas database by not allowing for the out of state release of a child's records since TDH could not guarantee the security and confidentiality of a Texan's confidential medical records on a database out of state. This was additionally agreed upon, but left in the rules. I am especially concerned with the implications this has for national database plans. To better understand my concerns, you may review my written testimony against the National Immunization Registry Plan posted on the Centers for Disease Control's National Immunization Registry Clearinghouse web site at This national system is clearly not in the best interest of Texas citizens.

The third area we discussed were forceful consent forms. Mark Loeffler had copies of the consent forms TDH uses for the registry. The forms bundle vaccine consent with registry consent. In other words, as long as you get a shot and have to sign the shot consent form, you are included in the registry by default in spite of your wishes. This was supposed to be taken care of in the rules as well, but it hasn't been.

And lastly, we discussed the vulnerable positions parents are in during the birth process and obtaining consent at birth was not appropriate. It was pointed out by Melvin Edwards that parents are not in an emotional or physical state of mind while in active labor to consent to this system. I feel TDH knows this and is taking advantage of the parent to gain consent by default. Additionally, TDH is only proposing a yes/no check box on the birth certificate application. This is not informed consent. It was originally Dr. Archer's opinion that they could address this by getting parents printed material to take home and read, but after we discussed the other problems with birth certificate consent which are outlined below, he agreed this could be inappropriate.

Unfortunately, at the time of our meeting, we were only provided with a subset of the final proposed rules. During the recent public comment period which just ended Monday, I uncovered many other concerns. Although on the surface this set of proposed rules appears to protect private information, closer examination reveals loopholes which compromise informed consent and the legislative protections governing the security, collection, and release of confidential medical information. In the interest of time today, I will not go through my specific concerns with the rules, but I have provided all of you with copies in an appendix to my letter so that you may read them at your convenience.

My visibility with the public regarding this immunization tracking issue has brought about some surprises. I was recently appointed as Legislative Director for Immunization Tracking Systems for the National Vaccine Information Center. It is humorous and disturbing at the same time because I was not appointed because of my legal training - I don't have any. I was appointed because of my "on the job training" I received while being obligated as a concerned parent to speak up against these actions by TDH. In addition, this visibility has brought parents from around the state to contact me with their personal stories and concerns regarding immunization tracking and forced vaccinations. I am including these notes for your benefit as well. I think they will give you an idea how real families are being treated and not respected. I also have a written statement by another concerned parent who has been involved with this issue since the introduction of HB 3054 as well, Rebecca Rex.

I will close my comments today by respectfully asking you to reject these rules in your upcoming vote until all of these concerns are resolved. I don't know if it means anything to you, but my personal experience with this agency regarding this issue has been very unpleasant and emotionally trying for my family. It will take a tremendous turn around in the behavior and attitudes of TDH employees to restore my trust in this agency. Thank you for your time and willingness to listen.

Dawn Richardson

Appendix A

Objections to Proposed Rules Implementing a Statewide Immunization Tracking System


No Forms for Non-Participation

The fifth paragraph of the preamble to the proposed rules states that doctors will have the added expense of providing forms to patients to decline participation in the registry. This is not an acceptable practice when the law requires the burden of action on TDH to obtain consent to participate, not the burden on the parent to sign a form to decline participation. According to the statute, parents who don't want to have their children in the registry should not have to do anything.


      Too Much Data

      The law defines the information that can be collected by TDH to be: the child's name and date of birth; the types and dates of immunization; and the immunization provider's name and address (Texas Health and Safety Code Section 161.008 (b)). Despite this definition, the proposed rules in Section 100.5 (b) (f) and (g) call for the additional reporting of the provider's business telephone number; the child's gender, address, and social security number; the names and relationships of parent(s), guardian(s), or managing conservator(s); the mother's maiden name; and evidence to immunity to vaccine preventable disease. The Texas Legislature previously rejected the proposed inclusion of such information in the registry when it amended HB 3054 to incorporate the limiting language reflected in Texas Health and Safety Code Section 161.008 (b). I object to TDH's attempt to obtain information through its rules that the Legislature has already denied by statute. TDH must not be allowed to circumvent the privacy protections built into the statute by exceeding its statutory authority to gather information.

      Holding Data Too Long

      The law establishes a "childhood immunization registry" not an adult immunization registry (Health and Safety Code Sections 161.007 (a) and (b)). However, the proposed rules allow TDH to keep children's data until they reach the age of 21, without any option for withdrawing themselves from the registry after they reach the age of 18 (sections 100.1 (10), 100.2 (b), 100.5 (a)). TDH should not be allowed to keep an immunization record on the registry past the child's 18th birthday.

      Optional Data Unclearly Labeled

      Section 100.5 (h) of the rules states that "in addition to data required, optional information which aids in the tracking of children in the immunization registry may be supplied at the discretion of the parent." However, TDH's forms mislead providers and parents by failing to indicate which information is required and which is optional. The proposed rules too often give discretion to providers rather than parents regarding the submission of patients' personal information to the registry. For example, instead of informing parents that certain information is optional and leaving the decision to them, the proposed rules instruct providers to report the information "if available." Most providers will have all the data available and will supply it without parents ever having a chance to decline the optional items. The rules should provide that all unrequired data must be clearly labeled "optional."


      Too Many Recipients

      The law authorizes data to be released only to a public health district, a local health department, the child's physician, and a school or child care facility in which the child is enrolled (Health and Safety Code Section 161.008 (c) (2)). The proposed rules unacceptably expand the list of registry data recipients, to include "the Commissioner of Health or designee" (section 100.2 (a) (2) (E)). This gives the Health Commissioner unlimited discretion to release registry data to anyone. This kind of open-ended authorization must not be allowed.

      The proposed rules have also added past and current health care plans to the list of registry data recipients (section 100.2 (a) (2) (G)) without statutory authorization. A health plan receives all the data it needs to process an immunization related claim from the child's provider, so it is especially unnecessary for a past or present insurance company to be able to access the child's entire registry file.

      TDH is also attempting to give registry access to the Texas Department of Human Services (DHS) (section 100.2 (a) (2) (D)) without statutory authorization. The majority of people in the state are not on public assistance programs, and DHS's public health immunization providers already have access to the registry. DHS, as an agency, was not authorized release privileges by the legislature and therefore should not be allowed release privileges by TDH.


      Unrestricted and Uncontrollable Data Exchange

      Under Texas law, only the Health Department is authorized to release a child's confidential immunization record. Release is authorized only to a public health district, a local health department, the child's physician, the child's school or child care facility , or a parent. However, the proposed rules purport to expand this list of recipients without statutory authority. Furthermore, the law does not authorize any of these recipients to re-release information from the registry (Health and Safety Code Section 161.008 (c) and (d)). Although the law was written this way to protect the private information, the proposed rules attempt to give sweeping authority to all registry users to re-release any child's confidential record to unknown, unlimited and unrestrained "entities and individuals who both administer and promote immunizations and the immunization registries of other states" (Section 100.2 (a) (3)). This includes out-of-state recipients who are beyond the reach of Texas law and TDH rules.

      The effect of these proposed rules is to promote uncontrollable data exchange without security guarantees. I object to this gross, unauthorized and abusive expansion of data exchange under the proposed rules. At a minimum, all registry users should be required to enter an enforceable agreement with TDH that they will comply with all Texas laws and rules concerning the uses of registry information. No data release outside of Texas should be allowed.


      Not at Birth

      The proposed rules and current practice of TDH having a consent "check box" on birth certificates forces parents to make an unrelated decision at a very inappropriate time. (Section 100.2 (b)). Not only are many women emotionally and physically exhausted during and after labor, but most are under the physical and mind-altering effects of pain management drugs and anesthesia. In addition, birth certificates are retyped by hospital staff, and there are documented instances of hospital staff changing a parent's registry consent status from "no" to "yes". This has lifetime repercussions for families who did not want their children's confidential information released. An immunization registry has nothing to do with vital statistic data. Birth certificate consent appears to be an attempt of TDH to push inclusion by catching families at a vulnerable time when they are unlikely to give truly informed consent. Consent at birth is inappropriate and should not be allowed to continue now or in the future.

      Current Forms Force Inclusion

      HB 3054 initiated the statewide immunization registry on September 1, 1997. Even though this law authorizes only a purely voluntary registry, the consent forms TDH continues to use today (C-90, C-97, C-106, etc.) bundle immunization consent with registry consent under one signature. In other words, all parents who consent to having their child immunized are forced by default into the registry. This puts the burden on parents to discover they have the right to withdraw consent and to contact TDH to withdraw. There are documented instances of families being bullied and misled by doctors, nurses and school health staff into believing they had no choice because their consent to the administration of vaccine automatically would include them in the registry. Additionally, the current consent forms do not inform the parent of everyone who will have access to their child's personal information or about their right to later withdraw consent and how to do so. Not only should current consent forms be replaced immediately, but TDH should be required to contact every family forced to be included in the registry in this manner since September 1, 1997 with a new separate registry consent form that includes withdrawal information and release disclosures.

      No "Grandfathering" of Data

      The legislative basis for the registry, HB 3054, which reads "An Act relating to the creation of an immunization registry", did not authorize the registry to be initiated until September 1, 1997. In fact, TDH implemented the registry years before it was authorized to do so by the Texas Legislature. None of the statute's privacy protections were in place during that time. For example, the Texas Health and Safety Code expressly states in Section 161.008 (a) (3) that TDH must have parents' consent before it may add their children to the registry. In fact, since 1995 TDH has entered at least 3.3 million children into its registry wholly or largely without any parental consent whatever. Despite these unauthorized and abusive actions, and although TDH has admitted that it cannot verify the required consent for these records, the proposed rules in section 100.6 (a) state that TDH will keep information in the registry that was entered prior to September 1, 1997. TDH's half-hearted proposal for contacting the parents of these children is to post notices in doctor's offices which state that they may already be in the registry. This is unacceptable. TDH should instead be required to directly contact those families and either obtain truly informed consent in writing or delete those records from the registry.

      Not One Time Only

      Federal law and the Vaccine Injury Compensation Program (VICP) require parents to be provided with printed information about the benefits and risks of a vaccine before it is administered to their child, as well as how to monitor and report an adverse vaccine reaction. Section 161.008 (c) of the Texas Health and Safety Code requires that TDH may obtain or release registry data only with the prior written consent of a parent. However, the proposed rules state that "consent must be obtained one time only and is valid until the child attains 21 years of age" (Section 100.1 (10)). Further, this one-time consent is to include "past, present, and future information" concerning the child's immunizations (Section 100.2 (a) (2)). This proposed rule appears to be an attempt by TDH to force inclusion by default rather than to obtain true informed consent. A "one time only" consent is not adequate as children change providers many times. How will a new doctor know whether consent was obtained at birth or from another provider, or was denied? Since other federally mandated forms are already being distributed at the time of vaccination, it is convenient and necessary for the protection of our children's information that written consent for the registry be obtained at the time of each vaccination. There are over 200 new vaccines being developed, and since no parent knows what future vaccines will be required, consent for registry inclusion and release should be obtained with each new vaccine being administered.


      Inadequate Data Security

      Immunization registry records are confidential medical information (Health and Safety Code Section 161.007 (a) (1)). However, the proposed rules require only "immunization providers, health plans, and TDH" to "maintain the confidentiality of all immunization reports" (Section 100.9 (b)). In addition, the rules require only providers to sign confidentiality statements, register, and be provided with security levels, a user ID, and a password (Section 100.11 (a-c)). Why has TDH left out schools, day care facilities, and other registry users from these security and confidentiality requirements? The way this section of the proposed rules is written allows virtually anyone at a registry user's location to have unsecured access to the personal information in any child's record. All registry users, not just providers, must be required to maintain the confidentiality of an immunization record.

      Missing Penalties

      The proposed rules do not prescribe any penalty for anyone who fraudulently or wrongfully obtains or releases registry information when a parent has not given written consent. Without enforceable penalties, there are no incentives for providers and health plans to take the measures necessary to prevent entries and releases of registry information about children from families who object to being tracked, and other similar abuses. At a minimum, the rules should reflect the applicable penalties provided for in the Texas Health and Safety Code as well as provide for exclusion from access to the registry system.

      No Limits on "Notices"

      TDH drafted the language of HB 3054 which authorizes intrusive notification and compliance measures. The bill states that TDH can provide notices "by mail, telephone, personal contact, or other means" of "overdue" immunizations according to the department's schedule (Health and Safety Code Section 161.007 (e)). House and Senate committee hearing recordings reveal that TDH never informed the legislature of the immunization registry's home telephone auto-dialer machines and CDC sponsored pilot programs where vaccination vans show up on the doorstep of families who don't respond to the automated calls in a "timely" manner. Since the statute does not clearly define or place limits on "personal contact", "other means", or frequency of notices, the rules need to include some protections and limits. Given that the registry does not provide for exemption information, parents declining certain immunizations for medical, religious, or conscientious reasons could be continually harassed.

      Missing Protections for Not Participating

      Since inclusion in the registry is voluntary, the rules should state that parents who refuse consent will not be penalized, retaliated against, or in any way harassed. Families choosing not to participate in the registry must be protected from any backlash by registry users, including, but not limited to: insurance companies, health maintenance organizations, other organizations that pay or reimburse claims for immunizations, physicians, public health offices, employers, schools, or child care establishments.


      No National and International Monitoring of Vaccination Status

      The proposed rules state the HL7 format will be used by the registry for automated data exchange (Section 100.8 (b)). HL7 format has a format specific to immunizations that allows for the sharing of records and monitoring of vaccine status nationally and internationally. This data exchange format was chosen by TDH because of their intentions to release our children's records to databases outside of Texas despite strong parental objections and absence of statutory authority. The HL7 format promotes this.


      No Agents

      There is no statutory authority for making providers the agents of TDH for registry purposes, and the implications of so doing are unclear. Defining providers as agents of TDH could shield them from legal liability under their statutory obligation to maintain doctor/patient confidentiality as well as other wrongful uses of the registry, such as reporting or disclosing private information without securing written consent (Section 100.1 (3)). I request that TDH explain its intentions and the potential ramifications of making providers its agents for registry purposes.

Appendix B

Notes From other Parents Mistreated about the Registry and Immunizations

----Original Message-----
To: <>
Date: Tuesday, August 18, 1998 8:25 AM
Subject: HELP!

>Dear Dawn;
>When (Lisa) enrolled at the local public high school, a school nurse
>began really harrassing her about getting a measles shot.This harrassment
>went on for several weeks as I was tied up and unable to get her to get
>the shot any sooner. She was called out of class and into the
>principal's office and pressed in a threatening way. The nurse wrote me
>a letter, which was the only letter I ever received, yet it said "final
>notice" all over it and it was covered with an almost rediculous amount
>of red pen marks, astericks and yellow highlighting. The letter was
>threatening. ( I still have the letter.) Actually, her letter stated
>that an MMR was required, but I knew that the law only required a measles
>I decided to take (Lisa) to the TDH clinic in Corsicana for the shot. I
>called ahead to ask if I would be required to sign a medical release,
>because I do not believe that I should be required to sign a medical
>release when I am being forced by law to get the immunization against my
>will. I was assured that no such release would be required.
>When I arrived at the clinic, I was questioned as to why I didn't bring
>the letter from the school. (I truly just forgot it!) This seemed to be
>a big problem, and they wouldn't administer the shot at first. The nurse
>that I spoke with checked with first one supervisor and then another,
>each time stating that there was "a problem." I didn't understand what
>the "problem" was. They kept saying that they couldn't "just blindly
>immunize" her without the letter from the school. (I didn't understand
>why they could take the school's word, but not mine as her parent.) They
>tried to call the school nurse but couldn't get her. They finally agreed
>to give her the immunization, but only after I called my home and had my
>son read the letter over the phone.
>Then, of course, I was presented with not only a medical release, but a
>release which contained a statement that said that I gave my permission
>for them to put (Lisa) into a computerized tracking system.I am
>vehemently opposed to my children being entered into any tracking system
>because of privacy issues. I questioned the release and the permission
>statement, and I was treated very unkindly by the attendant. I was told
>that they would not give the shot unless I signed the form. I was told
>that I had no choice in the matter. When I asked if I could line out the
>portion of the release which had the permission statement, the attendant
>laughed and said that it didn't matter how I altered the form, that they
>would just put it into the computer that I signed and gave permission.
>The original form and how I had altered it would be irrelevant. I
>expressed my unwillingness to sign a false statement under duress. The
>entire release was a false statement for me in this situation, because I
>didn't want to get the immunization in the first place. To sign a
>statement that states otherwise is signing a false statement. I
>expressed to the attendant that I didn't want the shot at all, but was
>merely obeying the law. The attendant told me that it really didn't
>matter what I did or didn't do, or did or didn't think, she had orders to
>put the information into the computer, and that was what she was going to
>do, whether I liked it or not. I also asked for a measles shot only, but
>was told that all the clinic had was an MMR. She said that they didn't
>have the measles shot by itself, even though it was listed on the
>clinic's card, so I was forced to get the MMR. I left truly upset, and I
>felt like I had dealt with the Gestapo. I truly couldn't believe that
>this had happened to me in America.
>That's my story. Let me know if you are able to forward my story for me,
>or whether I need to do it myself.
>Thanks very much.


When I was pregnant with my first child, I was asked if I planned to have him vaccinated. It was an issue I had not considered. I began to research and gather abundant literature on the topic. I then made the informed decision not to vaccinate my child because I was very concerned about the potential harm it could cause. I believed the risks outweighed the benefits.

Upon discharge from the hospital, after the birth of my son, I learned he had been injected with the Hepatitis B vaccine. When I questioned why, the nurse showed me a consent form that bore my signature. I did not recognize the form but I had indeed signed it. I was told that I had received it along
with the other forms of consent (i.e. for delivery, blood transfusion, etc. ) all of which I received during active labor.

I was extremely frustrated and angry because the mistake that had been made could not be corrected. The shot could not be taken back. I had made my decision on the matter. I had done my part and educated myself beforehand. I thought I was prepared. What I was not prepared for was to be blindsided
with a consent form while I was in a physically, mentally, and emotionally compromised situation.

I was adamantly opposed to my child receiving that vaccination, however, I was somehow coerced into consenting to it simply by the manner in which the form was presented. That is appalling.

At my son's two-month check-up. I expressed my concerns regarding the vaccinations to my pediatrician. I anticipated a conflict so I merely told him I wanted to wait until my child was a little older. I told him that I was not comfortable injecting numerous toxins in my 12 pound infant son. I was prepared for a disagreement but assumed that since I was educated on the matter that he would respect my decision. He did no such thing. His tone immediately became hostile and agitated. He was extremely condescending and even accused me of abuse and neglect. He then abruptly told me to find another doctor.

I was horrified. I was treated with absolutely no respect. My concerns were not even acknowledged by the very person who is supposedly in the position to guide and educate. I was under the apparently mistaken impression that I, as the mother of my child, was not only capable of, but rightfully entitled
to, making informed decisions regarding his health care. I was faced not with an acceptance of my choice, but rather with bullying and the use of scare tactics in an effort to force me to conform.

After I gave birth to my second child, I filled out the birth certificate form. There was a question requesting consent to release my child's vaccination records to a state registry. I answered no to this question. I was not familiar with this registry and did not want to release any of my child's medical records that should rightfully be kept confidential. As I was proofing the form after it was printed out by the computer I noticed the consent box was checked yes. I promptly requested that it be changed to what
I had answered, "no". Again, I was treated with no respect. I was told "it's really no big deal" in a very condescending manner. Although I was made to feel that my decision was a ridiculous one, I stood my ground and expressed that I was quite capable and responsible enough to keep track of my own
child's records.

This experience was also very frustrating. A woman is expected to make an important decision at a very inappropriate time and place. When decisions are made in an uninformed, hurried manner it inevitably results in conformity. In my experiences it. has become quite clear that we are not merely encouraged but are expected to consent to whatever political agenda is currently on the rise. And the field of health care, by its very nature, is the perfect forum for such agendas because every mother wants to do what is
best for her child. Unfortunately, the information health care professionals provide is limited and our society fosters ignorance rather than free thinking. Has our society digressed so far that we freely support and accept the woman who chooses to end the life of her child while we in turn criticize and alienate the woman who chooses to protect it?


Appendix C

Submitted Public Comments Illustrating TDH Misleads Legislature

Scott Richardson
913 Forest Trail
Cedar Park, TX 78613
(512) 918-9661

March 18, 1998

Robert D. Crider, Jr., M.S., M.P.A.,
Director, Immunization Division
1100 West 49th Street
Austin, TX 78756
Phone: (512) 458-7284
Fax: (512) 458-7288

Subject Proposed Rules on H.B. 3054, Immunization Registry, Not Acceptable (Public Comment)

Dear Mr. Crider,

I have some very serious concerns with the proposed rules. I am offended and disturbed that your testimony before the Senate Health and Human Resources Committee on 5/16/97 reassured parents and legislators that their privacy and confidentiality concerns would be addressed by TDH and yet the proposed rules don't address these agreements despite the amended legislation.

It appears that you deliberately misled legislators and private citizens in order to get this legislation passed. It is becoming clear that TDH never had any intention of addressing privacy and confidentiality concerns. The proposed rules ignore the amendment adopted on May 22, 1997 and look like the first version of H.B. 3054.

In order to clarify my concerns, I would like to revisit the Senate Health and Human Resources committee hearing on May 16, 1997. I have reviewed the tape of this hearing, and unofficially transcribed the testimony given.

The first person called to testify is Rebecca Rex, a parent from Houston, in opposition to the current version of H.B. 3054. Her main concern is that even though a child may be exempt from the registry, TDH still has the ability to access the child's medical records without consent of the parent because the current legislation mandates insurance companies report this data to TDH.

She states that Texas law guarantees her child's medical records with her physician as confidential unless she gives her doctor the ability to release those medical records to her insurance company or somewhere else. She goes on to further clarify that, "We questioned the amendment, we talked to the Texas Department of Health, and we have been told that although we can exempt our child from the registry, the department still has access to our records. That hasn't been clarified. It's my understanding that the registry and the department's access are two very different things. I would like to be able to sign something in my physicians office giving him the ability to release those records to the department just like do when I signed giving him permission to release to my insurance company."

After some brief discussion, Senator Jerry Patterson asks, "My question is, this disclosure, this medical information release without parents knowledge or consent, does it include the name of the patient?"

Immunization director, Robert Crider is called as a resource witness.

Crider answers, "As it is now designed, we would get that information by name. But we recognize, as madam chair outlined, the sensitivity with this. And as senator Moncrief asked, one looks at epidemics that have occurred in the Texas areas, and we would not use that information to recall or remind those people who don't want us to do that - that legislation as it is outlined allows for us to not do that - does not permit us do that. It just gives the department, as well as other providers, the ability to know where there are problem areas. And we at this point in any way would not use that information to contact those parents or as some people might say harass them."

Senator Jerry Patterson asked, "Two questions, #1 Why do you need the name - I can understand demographics, I can understand certain types of demographic information such as age and weight you know height, things like that, that might medically give some indication or a variety of other demographic information. But the name, to me is completely of no significance or interest to you."

Crider responds, "I think that would be negotiable sir, if we could have the other demographic information in terms of ages, birth areas of where they live. I don't see how that would be important to us to know the name."

Zaffirini says, "We could develop a floor amendment that would address those additional concerns."

Crider responds, "Yes, and there is a statement that is required for all providers. It is a vaccine information statement and we've included in there just a simple question 'Do you want your child's information to be included in this registry or not?' We'll have to, through rules and regs, develop that more fully, but the department sincerely understands people's personal desires even though it might be a better benefit for the total population. So it is not our intent to use that information if people don't want us to. We just want the aggregate data so that we know for planning purposes more importantly in tight budget situations where money needs to go to try to help children."

When Senator Zaffirini asks Senator Patterson if there were any additional concerns, he said, "I am willing to vote this out, but of course there are no guarantees, but we have to insure that unless the parent affirmatively offers up the name to be put in the registry, I mean that medical information is private."

Senator Zaffirini asks Crider if that is acceptable to the Department. His reply is "Yes, as long as we could get information that would give us the data ages or whatever."

Senator Zaffirini asks "Will you work with Senator Patterson to develop that amendment that still gives you enough information that you need and satisfies the concerns of those who address the issues of privacy and confidentiality?"

Crider answers, "Yes, if we are talking about non-identification by name, yes."

Senator Moncrief asks Rebecca Rex if this would satisfy her concerns as a parent. She says, "As long the name and address of the child is kept confidential, I believe it would."

Crider interjects, "But I would like to clarify address being not say a specific mailing address or residence, but a zip code or census track area."

Senator Patterson comments, "That's fine. Yes. That gives you some tracking data for certain types of illnesses - a preponderance in certain areas and that's good."

Crider affirms, "Yes."

When Dawn Richardson, another parent opposing the current bill, is called, Senator Zafirini asks her if she heard the previous conversation that took place and if the suggested changes would alleviate her concerns.

Richardson replies, "Some of them, but not all of them. Right now, where my concern is, the way the legislation is written, it is written that the parent has to contact TDH in order to let them know that they do not want to be part of the registry."

Senators Patterson and Zaffirini state simultaneously that they are going to change that.

Then there is some discussion that in the interest of time things move forward, and that the concerned parents work with the author of the amendment to make sure their concerns are addressed. When asked if all of her concerns have been addressed, Richardson answers, "One last concern that I have is that when parents are in the office of the doctor, that they are able to right then and there decide and sign permission. I just want to state that and make sure the parents sign permission in order to release their medical records."

Then all committee members vote H.B. 3054 forward with the agreement that a floor amendment will be presented to cover the concerns that were discussed. Senator Jerry Patterson drafted this amendment with the input of TDH and the concerned parents. HB 3054 was amended on May 22, 1997 to address privacy and confidentiality concerns.

After reviewing the rules, the amended version of H.B. 3054, and the testimony given at the committee hearing, I have concluded that TDH knowingly misled parents and legislators. The agreements made by Robert Crider were never implemented into the rules.

The final version of H.B. 3054 addresses Rebecca Rex and Dawn Richardson' concerns brought forward in their testimony; it was made clear that parents wishing for their children's records to be included in the registry would sign a consent form. They would NOT be required to contact TDH if they did not consent. It was also made clear that TDH would have no access to any personal information about the child without the parent's consent.

Section 161.008 pertaining to the immunization record states that "the department, only with the consent of a child's parent, managing conservator, or guardian may: 1) obtain the data constituting an immunization record for the child from a public health district, a local health department, or a physician to the child."

Section 161.007 section c) states that "An insurance company, health maintenance organization, or other organization is not required to provide an immunization history to the department under this subsection for a person for whom consent has not been obtained in accordance with the guidelines adopted under Subsection (a) or for whom consent has been withdrawn."

Section 161.007 section d) states that "A health care provider is not required to provide an immunization history to the department under this subsection for a person for whom consent has not been obtained in accordance with the guidelines adopted under Subsection (a) or for whom consent has been withdrawn."

The proposed rules violate this. In the preamble to the rules, Robert Crider writes, "Those who wish to decline participation or withdraw consent must communicate this to the department, involving minimal postage." The rules also state in section 100.3 Providers, Health Plans, and Insurance Companies, that insurance companies can assume consent and they "shall" provide an immunization history to the department.

Let's refer back to the testimony cited above given on May 16, 1997. Senator Patterson asked Robert Crider if the release of medical information without a parent's consent included name, and Crider answers in the affirmative. He goes on to say that TDH would not use that information to "harass" parents. This is contradictory to a press release found on the TDH web page from May 30, 1996 which mentions TDH had been awarded a Computerworld Smithsonian Award. "The system also can provide parents with proof of their children's immunizations, and an added feature of the program will be to automatically notify parents by phone when the records show that a child is due or late in getting a required vaccination or booster." Apparently TDH does not consider automated computer calls to homes to be "harassment."

The rules do not provide for vaccine exemption data entry. Since the department has no way to know this, parents of exempt children will be harassed by the department providing "notices by mail, telephone, personal contact, or other means to a parent, managing conservator, or guardian regarding his or her child or ward who is overdue for a particular type of immunization according to the department's immunization schedule." The rules do not state how often the notices will be given or what "other means" could involve.

Robert Crider, in his testimony, agrees that TDH would not need personal data of name and address for non-consenting parents. It is very disturbing that TDH writes rules that REQUIRE the collection of "child's name and address, social security number, gender, child's date of birth, mother's maiden name, and vaccine information," (Section 100.5 Reportable Information) and then allows opportunities for the department to have access to that personal information of non-consenting parents. Senator Patterson's amendment to H.B. 3054 addressed the privacy issues for consenting parents by limiting what data can be collected by the department pertaining to immunizations.

Section 161.008 b) defines an immunization record in the registry to contain:
1. the name and date of birth of the person immunized;
2. dates of immunization;
3. types of immunization administered;
4. the name and address of the health care provider administering the immunization.
TDH has written the rules to usurp the legislation.

In his testimony, Robert Crider also states that TDH has provided a registry inclusion consent statement in the vaccine information statements given by the doctor. The paperwork I have reviewed, provided by TDH to our physician, bundles registry inclusion consent with consent of vaccination and side effect disclosure. These consents need to require unique signatures. TDH should not be allowed to strong-arm parents into an all or nothing vaccine related consent by bundling this all under one signature. They are very different issues.

In conclusion, I would like to state that I am not happy with the continued insufficient actions of this department to protect peoples' confidentiality and privacy rights with regards to immunizations. I understand that TDH's motives include public health, but that does not give TDH the right to mislead legislators and citizens and circumvent the protections in the laws that parents and legislators worked so hard to provide. These proposed rules are not acceptable, and I request the Texas Board of Health consider these comments when voting on this and future rules. The Immunization Division of TDH has demonstrated a pattern of manipulative and deceptive practices with regard to this immunization tracking system. It is time for it to stop.

Scott Richardson

  Contact Us  |  Membership  |  Related Sites

April 5, 2008

 ©2011 Parents Requesting Open Vaccine Education. All rights reserved. Terms of Use | Privacy Statement