From: PROVE
Date: Sunday, March 22, 1998 10:04 PM
To: PROVE members and interested parties

Subject: PROVE: Meeting with TDH on 3/20/98

Greetings,

Here is a short summary of where we are at in the battle against the proposed rules to the immunization tracking system in Texas. On Friday March 20th, we attended a meeting with TDH officials.

First of all, thank you to everyone who sent in letters. There were so many that it has prevented TDH from submitting the proposed rules for a vote at the April Board of Health Meeting. The soonest will be May, and it could even take longer for them to respond. Remember, they are required to respond to each unique concern in writing to each person and before the board. So they either have a lot of rewriting to do, or a lot of rationalizing why they won't rewrite a section. The lawyer who wrote the rules called the volume of public response "unprecedented". You all really pulled through.

Another benefit to your letters copied to your legislators and Senator Jerry Patterson is that many of our Senators and Representatives filed letters of protest that have become a part of public record regarding the rules. Senator Patterson and Senator Harris drafted a letter of legislative intent and submitted that (legislative intent means how they intended for the amendment on consent and confidentiality to be interpreted). In addition, Senator Patterson and Senator Harris's aide, along with some others (spurred on from your letters) met with TDH on the Wednesday before our meeting to let them know that the legislative intent of HB 3054 is that the registry needs to be entirely an "opt-in" program. How it is set up currently is unacceptable (doctors and insurance companies dumping everybody's info and letting TDH sort it out with parental "opt-out"), and they didn't care how long it would take to implement.

Patterson's aide attended our meeting with us on Friday. These points were made again by Alison, Greg, Rebecca, and myself. People who do nothing are to be transparent to the system; no consent was allowed to be assumed, and only people who gave INFORMED consent were allowed to be in the system. The burden should be on the doctors and insurance companies to maintain medical confidentiality unless they receive written consent that they may release records for the purpose of the registry. Consent status was to follow the record as to not allow those with the ability to update the registry (schools, day care, doctors, etc.) to "accidentally" enter information. We recommended adding a vaccine exemption field as well as all the other concerns brought up in our letters, but we focussed on informed consent in order to protect confidentiality for those who want nothing to do with the registry.

In attendance from TDH were Robert Crider, Director of Immunization, Diane Simpson, Associate Commissioner of Disease Control, Monty Waters, the lawyer who wrote the rules, Vicky Cowling, an administrator to ImmTrac, Mike Messinger, works with the insurance companies to implement the registry with them, and Jim Audette, the government relations representative for TDH. It was expressed multiple times that the law represented some challenges to them. Monty Waters said that the rules were written with efficiency in mind. (my comment - and not the legislation!) When the meeting was coming to a close, Rebecca asked what they intended to do about confidentiality, and Diane Simpson answered that they were honestly not sure yet. In other words, they made a sincere attempt to understand our concerns, but they have given us NO guarantees that they would implement them despite the stance of the legislators. The only thing that was definite is that there will be rewrites to the rules, but we don't know what would be included yet.

What happens next is their lawyers will prepare their NEW rules package after all of the comments have been responded to. The preamble of the rules must address each unique comment and state whether or not they made changes to address the comment or not. This is why your letters were so important. This all needs to be done one month before the Board of Health Meeting so it can be posted on their agenda. The board will review the rules and then vote on them.

What we intend to do next is obtain a copy of all the comments through the Freedom of Information Act because these are open public records. We will make sure that all copies of legislative letters that have been copied to the appropriate parties.

We will watch for the rewritten rules and assemble our comments. Legislative support is our insurance policy. If for some reason these rules get passed by the board, the entire tracking system is up for review before the 1999 legislature. We have had a commitment from our senators and representatives that if these changes aren't made, the registry will be either thrown out or they will write the rules for TDH as an amendment to fix them to insure consent, confidentiality, and privacy.

We still have a long way to go, but we have come a long way. Don't let your pens dry out, we may need some more letters. We'll let you know! Thank you for everything, and we'll keep you posted. Don't ever think that you can't make a difference, because every one of you who voiced your concerns has made a positive impact!

Sincerely,
Dawn

Please forward this to anyone you know who wrote who may not be on our Email list. If they have Email, have them write to us to be included. Thanks.
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Dawn Richardson
PROVE(Parents Requesting Open Vaccine Education)
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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.
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Any information obtained here is not to be construed as
medical OR legal advice. The decision to vaccinate and how
you implement that decision is yours and yours alone.
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April 5, 2008