Oppose H98 – “Reportable Disease Registries and Data”

Immunization registry expansion bill H98 passed the House Human Services committee and is expected to go to the house floor this week for vote; it will then head to the Senate. 
 
This bill is troublesome. It calls for the collection and storage of adult immunization data as well as child immunization data, with no permission needed. The bill also allows for sharing of this otherwise private data with researchers. 
 
Citizens have a lot of privacy concerns and questions about H98, such as:

1. Why are citizens not being asked their permission before such data are collected (H98 does not even allow the citizen to review records or request corrections)?

2. Why are there no penalties for breach of data applied equally across all three of the registries in this bill (HIV, cancer, immunization status? H98 only offers privacy (penalty for breach) to HIV positive persons.

3. Which researchers will be accessing our private data and why does the Health Department not make report to the citizens (who accessed their data, how much they paid, who funded the study)? See: Unvaccinated Families’ Addresses Should Be Made Public | TIME.

4. Are you aware of all of the recently documented data breaches (see examples below)?

Health Data Breaches 2010-2015

ACTION:  If you are concerned, please call your Reps and Senators. Find your Senator’s telephone number and contact information, here

  • Follow up your phone call with a letter or email.

3/13/2015 at 4:45 pm (JS)

Thanks to all who took the time to call today. Please stop communicating with the committee members at this time.
Status: H98 passed the House Human Services committee: 9-1 and is expected to go to the house floor for vote next week. We are told we will not win an amendment on the House floor, so it is time to focus on the Senate.
 
ACTION: Please read our testimony, here, and then call your SENATOR to ask for amendment… explain concerns about this bill. Find your Senator’s telephone number and contact information, here
  • Follow up your phone call with a letter.  Sample:

Dear Senator ______________.
My name is _________ and I live in________ Vermont. I am a ________ and a parent. I am particularly concerned with education and healthcare issues that are being considered in the legislature this year.  I am concerned about privacy violations, breaches of information and I oppose H98, Reportable Disease Registries and Data, and urge you to drop it. At the very least, please amend it so that parents must first give permission for their child’s immunization, cancer or HIV status to be collected in a registry. Regardless of what the information will show, this is private information and there needs to be strict penalties for misusing or sharing registry information.
Thank you for your time and hard work.
Sincerely,

___________

 
Documents discussed / submitted: 
 
– VERMONT COALITION FOR VACCINE CHOICE
 
– VERMONT DEPARTMENT OF HEALTH

3/12/2015

Oppose Registry Expansion Bill (H98)

H98*, “an act relating to reportable disease registries and data,” was introduced by Rep. George Till at the request of Health Commissioner Harry Chen. The House Human Services Committee is planning to vote on this bill at 9:30 tomorrow- Friday, March 13th.

H98 expands the immunization registry and we oppose for the following reasons:

#1 – The proposed expansion of the Immunization Registry calls for the collection of adult data as well as student data.

#2 – The second is that privacy issues and security breaches are, unfortunately, not uncommon, costly and jeopardize personal information.

#3 – Everyone is entitled to the same rights and protection of privacy and security of information regardless of disease type or tracking of care.

The Vermont Coalition for Vaccine Choice has requested amendments.

YOUR ACTION IS NEEDED, NOW – 

If you are a constituent of any of the following representatives on the House Human Services Committee,

  • 1 – PLEASE CALL Friday morning ASAP (3/13/2015).
  • 2 – Leave Phone Message: Oppose H98 /Amend it to require permission, remove adult data collection & add protections for data privacy.
  • 3 – Email:  Ask your rep to please oppose the bill or support the changes requestedby the Vermont Coalition for Vaccine Choice. We have uploaded the testimony we provided to the committee, and it can be found here: http://www.vaxchoicevt.com/wp-content/uploads/2015/03/VCVC-H.98-Testimony-3-12-15.pdf.

House Human Services Committee:

*The latest version of the bill can be viewed here: http://legislature.vermont.gov/assets/Documents/2016/WorkGroups/House%20Human%20Services/Bills/H.98/Drafts,%20Amendments%20and%20Summaries/H.98~Katie%20McLinn~Draft%20No.%201.1,%203-10-2015~3-10-2015.pdf