March 18, 1998

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.