HB 103 was heard in the House Health Committee yesterday. (Check for the live video and full transcript to be uploaded here soon)
Rep. Weaver began by introducing her bill and stating again that it does not remove exemptions, "And one thing I want to clarify is a person will still be free to opt out of receiving a vaccine if they choose. ADPH has made it... You know, we understand that there are some people that fear that ImmPRINT will be used to locate people and forcibly vaccinate their children who have who are not immunized but this is absolutely untrue. Medical and religious exemptions for vaccinations are allowed under AL law and this does not affect this in any way. So those exemptions still will be in place and this bill would not affect that in any way." Chairman Lee allowed four to speak in opposition. Many great points were brought before the committee. Kaycee Cavender clarified her concerns by saying, "It is not ADPH’s ability to access my medical records in any way they choose that is the issue, but rather the type of personally identifiable information that would be collected and the large amount of individuals that would have access to that information. It is the duty of ADPH and the state board of health to protect the integrity of vital records and ensure their proper use."
Natalie Wester also spoke in opposition saying, "Will my private health information be shared with other states? The federal government? Insurance companies? Merck? Walgreens? Who can say because this bill is very vague and not specific."
Two spoke in support of the bill: Linda Lee, the executive director of the Alabama chapter of the American Academy of Pediatrics, and Dr. Beverly Jordan, a family doctor with a practice in Enterprise, Alabama.
Dr. Scott Harris, Chief Health Officer for Alabama spoke again saying much of the same as in the Senate Healthcare Committee hearing that nothing is changing and this is the same system that has been in use for years. Many great points were made in opposition but again, legislators and Dr. Harris seemed to miss the heart of our concerns. This is not about exemptions. This is not about HIPAA. This is not about a new registry. This is not about vaccines themselves at all. This particular bill boils down to issues of government overreach and the importance of maintaining our liberty and right to privacy.
Only two committee members had questions. Rep. Marques asked who would be monitoring the access to this information and verified that the general public would not have access to it. He also asked if Dr. Jordan, for example, were to give out this information would she be violating HIPAA? Dr. Harris surprisingly fumbled for an answer that question saying, "That would be bad behavior, I guess." It's alarming that as a doctor himself with more than 19 years in private practice doesn't know that sharing a patient's sensitive personal and medical information is a violation of HIPAA.
Rep. Weaver added that there would be audit trails to monitor how this information is handled. So are we supposed to take from this that it's perfectly acceptable to force us to participate in this registry, having our personal information collected and shared because they'll be monitoring themselves to make sure it's safe? The point that we don't want this information collected or shared, no matter how "protected" it may be, was completely missed.
Rep. Gray asked just before the vote, "If they just want to opt out of it and didn't want to be in the system, would that be a problem? ... What is the likelihood of an amendment being made to allow that ... for those ones who came up and they don't want to be a part of the database?"
Rep. Weaver agreed to discuss that with Rep. Gray for when the bill goes to the House floor.
The vote resulted in 10-0 in favor of the bill with the assurance of an amendment to opt out.
Several board members and fellow advocates took to the hallways of the State House after the hearing to seize the opportunity to talk to legislators, gain allies, and make progress for our cause. We were successful on more than one front and will update as soon as we learn more but just know exciting things are coming! Some will say that an amendment is not what we should be working for and we should just work to kill the bill instead but... what would that look like? If we kill this bill, we go right back to where we were. We will have the same system. It will still be collecting the same breadth of personal information. It will still be shared with authorized users that are not healthcare providers. This bill would still come back next session. Our right to opt out will still just be a written ImmPRINT policy which you can find here in section 5.2. Role of Public and Private Immunization Providers
Physician and Nurse Providers shall:
· Accept responsibility for the protection of registry information,
· Limit access to ImmPRINT data to authorized office personnel only,
· Ensure the protection of privacy and confidentiality of ImmPRINT data if ImmPRINT data is integrated with other health information systems,
· Ensure that patients/parents/guardians are notified of the existence of ImmPRINT and the information contained in the ImmPRINT database,
· Inform patients/parents/guardians of the purpose and potential uses of ImmPRINT,
· Inform patients/parents/guardians of the types of organizations to which identifiable or unidentifiable information is commonly released,
· Inform patients/parents/guardians of the policies and procedures in place to protect patient privacy,
· Permit patients/parents/guardians to review and change information in ImmPRINT,
· Give patients/parents/guardians the right to request audits of all accesses to their electronic immunization record and to review such logs,
· Inform patients/parents/guardians of their right to refuse to have their immunization history and other identifiable information entered into ImmPRINT and of their right to change their decision at any time, and
· Document in the medical record a patient, parent or guardians decision not to participate in ImmPRINT. Policies can be changed at any time. If this bill passes as is, those policies will absolutely change to remove those requirements and this bill has been assured to pass. As we have said from the beginning, why not take this opportunity to create an amendment that makes this policy part of the law? That would be a huge win for us! Or even better, to make this registry one that you opt into rather than having to choose to opt out? This is our goal and what we are working on with the representatives involved. We will have a Call to Action out to you soon when we know more. Thank you to everyone who attended the committee hearing. It's a sacrifice to travel so far, miss work, and much more and it is so appreciated! No matter what part of this community we work with, we are all in this fight together and numbers will be our strength. You should all be so proud of your work these past weeks. All the reps and senators we spoke to mentioned they had been receiving lots of emails and phone calls in opposition. It can feel like a defeat with a vote like this but the fight is not over! Let's fight for change! Let's fight to solidify into law what we tenuously have now as a right to opt out.
For now we recommend that you all stay in contact with your personal representatives. If you haven't already found yours and reached out to them, now is the time to do that! Find your reps here.