It’s not over. Make your voice heard TODAY

It’s not over. Make your voice heard TODAY

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The medical tracking bill is dangerously close to passing.  This is our last day to stop it!  Please, please Blind Carbon Copy (BCC) one email to the entire general assembly urging them to VOTE AGAINST H 5541A / S 676A.  Simply copy paste the emails listed below into the BCC line of your email. Then leave at message on Governor’s phone line.

 

Sample email:
Subject:  I do NOT consent. Oppose H5541A Floor Vote TODAY
“Distinguished Lawmakers of Rhode Island,
 
I respectfully urge you reject H 5541A. This bill is invasive and dis-empowering.  The database may include an enormous amount of sensitive information that I do not wish to share with unknown entities.  Additionally, if our information is deleted from the registry, we may be auto-enrolled back into it whenever we see a new doctor.  This would require that we opt out repeatedly!   Please do not allow RIDOH to impose medical tracking upon law abiding and largely unsuspecting people.
 

The CDC states these databases should be by choice “Choice – Parents must be allowed to choose whether to participate in the IIS”. (https://www.cdc.gov/vaccines/programs/iis/about.html) This database should be opt-in only with written consent. This is the only way to protect ourselves against invasions of privacy, data sharing, data hacking and a whole host of unforeseen consequences. Opt in also respects the right to privacy in our papers as guaranteed in the 4th amendment of the constitution.

 
Respectfully yours,”

Copy and Paste List for House – BCC an email to full house of representatives

rep-blazejewski@rilegislature.gov
rep-walsh@rilegislature.gov
rep-kislak@rilegislature.gov
rep-Ranglin-Vassell@rilegislature.gov
rep-hull@rilegislature.gov
rep-mckiernan@rilegislature.gov
rep-lombardi@rilegislature.gov
rep-williams@rilegislature.gov
rep-slater@rilegislature.gov
rep-diaz@rilegislature.gov
rep-almeida@rilegislature.gov
rep-mendez@rilegislature.gov
rep-lima@rilegislature.gov
rep-mattiello@rilegislature.gov
rep-millea@rilegislature.gov
rep-jacquard@rilegislature.gov
rep-handy@rilegislature.gov
rep-mcnamara@rilegislature.gov
rep-bennett@rilegislature.gov
rep-Vella-Wilkinson@rilegislature.gov
rep-solomon@rilegislature.gov
rep-shekarchi@rilegislature.gov
rep-Shanley@rilegislature.gov
rep-noret@rilegislature.gov
rep-jackson@rilegislature.gov
rep-serpa@rilegislature.gov
rep-nardone@rilegislature.gov
rep-roberts@rilegislature.gov
rep-caldwell@rilegislature.gov
rep-Casimiro@rilegislature.gov
rep-craven@rilegislature.gov
rep-mcentee@rilegislature.gov
rep-tanzi@rilegislature.gov
rep-fogarty@rilegislature.gov
rep-filippi@rilegislature.gov
rep-azzinaro@rilegislature.gov
rep-kennedy@rilegislature.gov
rep-Price@rilegislature.gov
rep-chippendale@rilegislature.gov
rep-quattrocchi@rilegislature.gov
rep-ucci@rilegislature.gov
rep-fellela@rilegislature.gov
rep-costantino@rilegislature.gov
rep-ackerman@rilegislature.gov
rep-lyle@rilegislature.gov
rep-place@rilegislature.gov
rep-newberry@rilegislature.gov
rep-morin@rilegislature.gov
rep-casey@rilegislature.gov
rep-phillips@rilegislature.gov
rep-Marszalkowski@rilegislature.gov
rep-hawkins@rilegislature.gov
rep-obrien@rilegislature.gov
rep-corvese@rilegislature.gov
rep-maldonado@rilegislature.gov
rep-mclaughlin@rilegislature.gov
rep-tobon@rilegislature.gov
rep-barros@rilegislature.gov
rep-alzate@rilegislature.gov
rep-johnston@rilegislature.gov
rep-messier@rilegislature.gov
rep-kazarian@rilegislature.gov
rep-serodio@rilegislature.gov
rep-amore@rilegislature.gov
rep-cassar@rilegislature.gov
rep-Knight@rilegislature.gov
rep-marshall@rilegislature.gov
rep-donovan@rilegislature.gov
rep-edwards@rilegislature.gov
rep-canario@rilegislature.gov
rep-cortvriend@rilegislature.gov
rep-abney@rilegislature.gov
rep-ruggiero@rilegislature.gov
rep-carson@rilegislature.gov
admin@nohpvmandateri.com
governor@governor.ri.gov

 

Sample email:
Subject:  I do NOT consent. Oppose S676A Floor Vote
“Distinguished Lawmakers of Rhode Island,
 
I respectfully urge you reject S676 A.  This bill is invasive and dis-empowering.  The database may include an enormous amount of sensitive information that I do not wish to share with unknown entities.  Additionally, if our information is deleted from the registry, we may be auto-enrolled back into it whenever we see a new doctor.  This would require that we opt out repeatedly!   Please do not allow RIDOH to impose medical tracking upon law abiding and largely unsuspecting people.
 

The CDC states these databases should be by choice “Choice – Parents must be allowed to choose whether to participate in the IIS”. (https://www.cdc.gov/vaccines/programs/iis/about.html) This database should be opt-in only with written consent. This is the only way to protect ourselves against invasions of privacy, data sharing, data hacking and a whole host of unforeseen consequences.  Opt in also respects the right to privacy in our papers as guaranteed in the 4th amendment of the constitution.

 
Respectfully yours,”

Copy and Paste List for Senate – BCC an email to full senate

governor@governor.ri.gov
admin@nohpvmandateri.com
sen-Quezada@rilegislature.gov
sen-goldin@rilegislature.gov
sen-ruggerio@rilegislature.gov
sen-bell@rilegislature.gov
sen-metts@rilegislature.gov
sen-ciccone@rilegislature.gov
sen-cano@rilegislature.gov
sen-satchell@rilegislature.gov
sen-felag@rilegislature.gov
sen-Seveney@rilegislature.gov
sen-dipalma@rilegislature.gov
sen-euer@rilegislature.gov
sen-lawson@rilegislature.gov
sen-nesselbush@rilegislature.gov
sen-crowley@rilegislature.gov
sen-Paolino@rilegislature.gov
sen-conley@rilegislature.gov
sen-pearson@rilegislature.gov
sen-picard@rilegislature.gov
sen-rogers@rilegislature.gov
sen-archambault@rilegislature.gov
sen-delacruz@rilegislature.gov
sen-murray@rilegislature.gov
sen-lombardo@rilegislature.gov
sen-lombardi@rilegislature.gov
sen-gallo@rilegislature.gov
sen-miller@rilegislature.gov
sen-mccaffrey@rilegislature.gov
sen-mckenney@rilegislature.gov
sen-lynchprata@rilegislature.gov
sen-coyne@rilegislature.gov
sen-raptakis@rilegislature.gov
sen-morgan@rilegislature.gov
sen-valverde@rilegislature.gov
sen-sheehan@rilegislature.gov
sen-sosnowski@rilegislature.gov
sen-algiere@rilegislature.gov
sen-goodwin@rilegislature.gov

 

Call the Governor

CALL the Governor office to Oppose these bills. Leave a msg with staff to oppose S676 sub A and H5541 sub A, and she should refuse to sign into law if they pass the floor vote, by veto. That you want our governor to respect our rights to privacy and informed consent. She should only support OPT IN for such an invasive database.

Calling Governor Phone: (401).222.2080

 

If you don’t want to be automatically enrolled in a government database that the CDC states should be your choice then please oppose bills H5541 & S676. We’re counting on you. Thank you.

 

–Volunteer Team

 

 

P.S. To help us keep the fight strong, Donate at www.gifts.nohpvmandateri.com

 

 

You can still sign the petition against this database being formed in RI

 

 

 

 

 

 

 

Click here to donate $15

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Click here to donate $75

 

 

 

 

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RI DOH calls Advocates of Informed Consent – antivaxxers

RI DOH calls Advocates of Informed Consent – antivaxxers
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PRESS RELEASE

 

June 17, 2019

FOR IMMEDIATE RELEASE

Rhode Island Dept of Health makes statements that do Not match S676 / H5541 bill language. Then calls the citizens of RI, protecting their right to informed consent and medical data privacy, “anti vaxxers”.

Bills S676 sub A and H5541 sub A, are to develop a tracking database for all RI residents of all ages. The bills, if passed, will auto-enroll all citizens in RI, without the ability to remove your file from the database. In addition all Dept of Health agencies are exempt from federal HIPAA regulation. Permitting them to allow third party access as they see fit without the knowledge or consent of those contained in the database.

RIDOH asserts that the database is to track vaccinations received only. The language of the bills do not explicitly outline vaccinations only. “approved CDC data elements” is the language the bill will allow tracking fields to include. The page on CDC website explicitly states this list is not exclusive; “This list does not include all data elements external information systems such as EHRs, vital records, practice management or billing systems are expected to send to an IIS. The list may not include all data elements an IIS produces, stores or sends. Data elements may be derived and architectural solution may differ among IIS.” https://www.cdc.gov/vaccines/programs/iis/core-data-elements/CDC-Endorsed-Data-Element-Definitions.xlsx

Neil P. Hytinen, Chief Public Affairs Officer and Legislative Liaison for RI Dept of Health, had an email exchange with RI Resident  Maddalena Cirignotta . His written statement asserts  “It is important to emphasize, however, that should RIDOH remove all of an individual’s identifiable information from RICAIR at any given point in time, RIDOH has no way of preventing future information from being entered into the database. Should more information be entered after the initial removal of all identifiable information, the individual must make subsequent opt-out requests to RIDOH. ”

Days later Neil Hytinen wrote an email to nurses and medical professionals in RI, calling anyone fighting against this intrusion of privacy “The antivaxxers” and continues by saying, “[antivaxxers] are flooding the inboxes of the House and Senate asking them to oppose our bill.” He proceeded to encourage the medical community to write to legislators using “small but formidable antivaccination lobby” is spreading misinformation in their email. https://nohpvmandateri.wordpress.com/2019/06/17/DOH-statements-do-not-match-bill-language    https://nohpvmandateri.wordpress.com/2019/06/17/ri-doh-calls-advocates-anti-vaxxers

Neil represents the RI Dept of Health. His statements are condescending and incorrect. Citizens like Maddalena, myself, and informed consent advocates, continue to thoroughly vet bill language and question DOH statements. The core of the fight against these bills, is our right to be informed in addition to privacy of our papers as guaranteed in the 4th amendment.

Neil decided name calling and stereotyping was the correct mode of action. RI citizens have a right to know about how officials that represent our state are acting behind the scenes. Discrediting and ignoring educated and important questions.” Emphasized Aimee Gardiner, Informed Consent advocate, and Director of Rhode Islanders against mandated HPV vaccinations.

Everyone should be concerned about this behavior and particularly these bills. Database information collection of any kind should be opt in. Neil’s own words explain how cumbersome the opt out process would be executed.”

Citizens who want to oppose this legislation should contact their personal legislators. The house will vote on H5541sub A this week.

 

MEDIA CONTACT:

Aimee Gardiner
Director, Rhode Islanders Against Mandated HPV Vaccinations
(401) 406.2647

 

About the Rhode Islanders Against Mandated HPV Vaccinations

Rhode Islanders Against Mandated HPV Vaccinations stands to reverse the HPV vaccine mandate in RI. We advocate for informed consent and to place the future process of vaccines considered for mandates in a form of complete public awareness and the ability for citizens to have a voice.  For more information please visit NoHPVmandateRI.com.

RI DOH calls advocates of privacy rights and informed consent “anti vaxxers” Over tracking database

Read email below from Tricia and Neil of RI Dept of Health

 

 

 

From: Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>
Date: Mon, Jun 17, 2019, 3:13 PM
Subject: Adult Immunization Registry
To: Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>

 

Good afternoon Friends and Pro Vaccination Allies,

 

The House will be voting on the 5541  SUB A our Lifetime Immunization Registry bill tomorrow and the Senate Bill 676 will be voted on by their chamber shortly thereafter. Thank you for all you have done to get us to this point and ahead of the votes I have one final ask.

 

The antivaxxers are flooding the inboxes of the House and Senate asking them to oppose our bill. If you could all reach out to your groups and ask them to email the House and Senate to support this legislation that would be extremely helpful. Below please find some standard language which would be great to be reinforced by the pro-vaccination community at large.

 

 

FOR THE HOUSE:

 

Subject line: Please Support the Immunization Registry 5541

 

Body:

 

Dear Representative,

 

My name is ___________ and I am writing to you today to ask you to support the Rhode Island Department of Health’s Lifetime Immunization Registry to be known as RICAIR. At a time when preventable diseases are making a resurgence across the country due to misinformation being spread by a small but formidable antivaccination lobby, we need this tool which 48 other states already have at their disposal in order to prepare and respond to outbreak. The childhood registry has been a huge success since it was established in 1997 allowing us to have some of the best immunization coverage in the nation up to age 18. It is time we establish a tool that allows us to protect our adult and elderly population equally.  The bill provides the ability to opt out of the registry. Opting out is an effective way to balance protecting our community while preserving individual rights and is supported by the CDC and World Health Organization.

 

I ask today that you support science, best public health practices, and our community by voting yes on H 5541.

 

Thank you for your consideration.

 

House of Representatives Emails:

 

rep-ajello@rilegislature.gov;rep-blazejewski@rilegislature.gov;rep-walsh@rilegislature.gov;rep-kislak@rilegislature.gov;rep-Ranglin-Vassell@rilegislature.gov;rep-hull@rilegislature.gov;rep-mckiernan@rilegislature.gov;rep-lombardi@rilegislature.gov;rep-williams@rilegislature.gov;rep-slater@rilegislature.gov;rep-diaz@rilegislature.gov;rep-almeida@rilegislature.gov;rep-mendez@rilegislature.gov;rep-lima@rilegislature.gov;rep-mattiello@rilegislature.gov;rep-millea@rilegislature.gov;rep-jacquard@rilegislature.gov;rep-handy@rilegislature.gov;rep-mcnamara@rilegislature.gov;rep-bennett@rilegislature.gov;rep-Vella-Wilkinson@rilegislature.gov;rep-solomon@rilegislature.gov;rep-shekarchi@rilegislature.gov;rep-Shanley@rilegislature.gov;rep-noret@rilegislature.gov;rep-jackson@rilegislature.gov;rep-serpa@rilegislature.gov;rep-nardone@rilegislature.gov;rep-roberts@rilegislature.gov;rep-caldwell@rilegislature.gov;rep-Casimiro@rilegislature.gov;rep-craven@rilegislature.gov;rep-mcentee@rilegislature.gov;rep-tanzi@rilegislature.gov;rep-fogarty@rilegislature.gov;rep-filippi@rilegislature.gov;rep-azzinaro@rilegislature.gov;rep-kennedy@rilegislature.gov;rep-price@rilegislature.gov;rep-chippendale@rilegislature.gov;rep-quattrocchi@rilegislature.gov;rep-ucci@rilegislature.gov;rep-fellela@rilegislature.gov;rep-costantino@rilegislature.gov;rep-ackerman@rilegislature.gov;rep-lyle@rilegislature.gov;rep-place@rilegislature.gov;rep-newberry@rilegislature.gov;rep-morin@rilegislature.gov;rep-casey@rilegislature.gov;rep-phillips@rilegislature.gov;rep-Marszalkowski@rilegislature.gov;rep-hawkins@rilegislature.gov;rep-obrien@rilegislature.gov;rep-corvese@rilegislature.gov;rep-maldonado@rilegislature.gov;rep-mclaughlin@rilegislature.gov;rep-tobon@rilegislature.gov;rep-barros@rilegislature.gov;rep-alzate@rilegislature.gov;rep-johnston@rilegislature.gov;rep-messier@rilegislature.gov;rep-kazarian@rilegislature.gov;rep-serodio@rilegislature.gov;rep-amore@rilegislature.gov;rep-cassar@rilegislature.gov;rep-Knight@rilegislature.gov;Rep-Speakman@rilegislature.gov;rep-donovan@rilegislature.gov;rep-edwards@rilegislature.gov;rep-canario@rilegislature.gov;rep-cortvriend@rilegislature.gov;rep-abney@rilegislature.gov;rep-ruggiero@rilegislature.gov;rep-carson@rilegislature.gov

 

 

FOR THE SENATE:

 

Subject line: Please Support the Immunization Registry 676

 

Body:

 

Dear Senator,

 

My name is ___________ and I am writing to you today to ask you to support the Rhode Island Department of Health’s Lifetime Immunization Registry to be known as RICAIR. At a time when preventable diseases are making a resurgence across the country due to misinformation being spread by a small but formidable antivaccination lobby, we need this tool which 48 other states already have at their disposal in order to prepare and respond to outbreak. The childhood registry has been a huge success since it was established in 1997 allowing us to have some of the best immunization coverage in the nation up to age 18. It is time we establish a tool that allows us to protect our adult and elderly population equally.  The bill provides the ability to opt out of the registry. Opting out is an effective way to balance protecting our community while preserving individual rights and is supported by the CDC and World Health Organization.

 

I ask today that you support science, best public health practices, and our community by voting yes on S 676.

 

Thank you for your consideration.

 

Rhode Island Senate Emails:

 

sen-goodwin@rilegislature.gov;sen-Quezada@rilegislature.gov;sen-goldin@rilegislature.gov;sen-ruggerio@rilegislature.gov;sen-bell@rilegislature.gov;sen-metts@rilegislature.gov;sen-ciccone@rilegislature.gov;sen-cano@rilegislature.gov;sen-satchell@rilegislature.gov;sen-felag@rilegislature.gov;sen-Seveney@rilegislature.gov;sen-dipalma@rilegislature.gov;sen-euer@rilegislature.gov;sen-lawson@rilegislature.gov;sen-nesselbush@rilegislature.gov;sen-crowley@rilegislature.gov;sen-Paolino@rilegislature.gov;sen-conley@rilegislature.gov;sen-pearson@rilegislature.gov;sen-picard@rilegislature.gov;sen-rogers@rilegislature.gov;sen-archambault@rilegislature.gov;sen-delacruz@rilegislature.gov;sen-murray@rilegislature.gov;sen-lombardo@rilegislature.gov;sen-lombardi@rilegislature.gov;sen-gallo@rilegislature.gov;sen-miller@rilegislature.gov;sen-mccaffrey@rilegislature.gov;sen-mckenney@rilegislature.gov;sen-lynch@rilegislature.gov;sen-coyne@rilegislature.gov;sen-raptakis@rilegislature.gov;sen-morgan@rilegislature.gov;sen-valverde@rilegislature.gov;sen-sheehan@rilegislature.gov;sen-sosnowski@rilegislature.gov;sen-algiere@rilegislature.gov

 

 

I want to sincerely thank you all for all you have done to get us to this point, now let’s get it over the finish line!

 

Best,

 

Neil P. Hytinen

Chief Public Affairs Officer and Legislative Liaison

Rhode Island Department of Health

3 Capitol Hill – Room 401

Providence, Rhode Island 02908

Tel. 401-222-1625

Dept of Health statements do NOT match bill language. Bad Database Bill fight forges forward

Dept of Health statements do NOT match bill language. Bad Database Bill fight forges forward
Read the email exchange below where DOH states comments not actually explicit defined in the bill. Neil also admits that the KidsNet database tracks many forms of information that you are not told is getting entered into a central database. Very concerning situation that everyone should be fighting against such databases. Unless a long term goal is to eventually go door to door, there is zero reason that informed consent shouldnt be the avenue in which to be included in such a database.
This bill will be heard in senate HHS committee Tues June 18th and on the house floor June 19 th to vote – contact as many legislators as possible to oppose. Email whole general assembly.
Sent: Thursday, June 13, 2019 7:45 AM
To: Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>; Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>Subject: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676

Good morning Tricia,
Yesterday afternoon (6/12/19), Neil Hytanin gave lawmakers false information regarding medical tracking bills H5541/S676. He told HEW committee members that the information of Rhode Islanders who opt out, would be removed from the data base. That is false. RIDOH does not currently expunge information nor is there any provision in the bill to compel them to. I’m writing to formally request documentation from RIDOH of his assertion that our medical information will be expunged if we opt-out of the medical registry.
Warmly,
Maddalena Cirignotta
——
From: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>
Sent: Thursday, June 13, 2019 12:44 PMSubject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676

Good afternoon ,
Thank you for your inquiry. The Rhode Island Department of Health (RIDOH) have stated in multiple hearings that it is possible to remove all of an individual’s information from the Rhode Island Childhood and Adult Immunization Registry (RICAIR) should he or she choose to opt out. RIDOH plans to make that an option. We have heard your concerns regarding the accessibility of the form to avail oneself of the opt-out provision. In response to the concern you raised and in maintaining consistency with the current practice of contacting RIDOH, there is language included in the Sub A of the proposed legislation that will mandate an opt-out request form is available and submittable on RIDOH’s website.
It is important to emphasize, however, that should RIDOH remove all of an individual’s identifiable information from RICAIR at any given point in time, RIDOH has no way of preventing future information from being entered into the database. Should more information be entered after the initial removal of all identifiable information, the individual must make subsequent opt-out requests to RIDOH.
There is another option that individuals may want to consider. If there is basic information (name, date of birth, address, phone) for an individual, RIDOH can include a notation that this individual has requested no vaccination data be entered under his or her name.
So that individuals will have the chance to decide which option is best, RIDOH intends to allow the individual to designate on the form which option they choose.
RIDOH reiterates that the information included in the current immunization registry and what will be included in RICAIR is only a subset of the information that is included in KIDSNET. This seems to be a point of confusion. Immunization data is one portion of what is included in KIDSNET. In its totality, KIDSNET is a comprehensive data system RIDOH uses to manage multiple state and federal programs such as newborn screening, WIC, family home visiting, and lead prevention—all of which serve Rhode Islanders and keep them healthy.
RIDOH’s goal is not to just collect data to populate a lifetime registry. RIDOH’s goal is to build an effective registry that allows RIDOH staff to study vaccination rates in the community and guide Departmental strategies to achieve the high levels of immunization coverage necessary to keep Rhode Islanders protected from disease outbreaks. A lifetime registry will also allow RIDOH to better respond to disease outbreaks when they happen. 48 other states are already have authorization to establish lifetime registries (47 of which are already operational). Recently, the states of Washington and New York have experienced large outbreaks of preventable diseases, and public health officials have used the information contained in the lifetime registries to keep their citizens safe, save lives, and prevent unnecessary spending of healthcare dollars. States who have opt- in registries are not able to monitor vaccination rates and respond to outbreaks as effectively and efficiently as states with opt-out registries.
At a time when preventable diseases are making a resurgence around the country it is RIDOH’s duty and responsibility to do all it can to protect and preserve the public’s health.
Best,
Neil Hytinen
————–
To:”Hytinen, Neil (RIDOH)” <Neil.Hytinen@health.ri.gov>,
“Washburn, Tricia (RIDOH)” <Tricia.Washburn@health.ri.gov>
Hi Neil,

As a spokesperson for the Department of Health, it is imperative that you make truthful, fact based statements to lawmakers. Legislatures rely on RIDOH for accurate information.

Yesterday (6/12/19) during the consideration of H5541/S676, you told committee members that RIDOH will remove the information of those who opt out of the medical registry. As I stated in my original email, RIDOH does not currently expunge information nor is there any provision in the bill to compel them to. I’m writing to formally request documentation from RIDOH of your assertion that our medical information will be expunged if we opt-out of the medical registry. What part of the bill requires RIDOH to remove our information?

In response to your assertion that “the information included in the current immunization registry and what will be included in RICAIR is only a subset of the information that is included in KIDSNET,” The bill language removes age limitations for the medical database but does not limit RIDOH to tracking only immunization data. What part of the bill limits data collection to vaccinations?

Provisions requiring the reporting of immunization status and any other relevant information that the director determines appropriate for all persons under the age of eighteen years for the purpose of establishing and maintaining a childhood an immunization registry,; provided, however, that the information collected by the department for the immunization registry will only include data elements nationally endorsed by the Centers for Disease Control and Prevention as necessary to meet standards for immunization information systemshttp://webserver.rilin.state.ri.us/BillText/BillText19/SenateText19/S0676.pdf http://webserver.rilin.state.ri.us/BillText/BillText19/HouseText19/H5541.pdf

The list of data elements is 9 pages long and expressly pre-approves other data elements that individual may collect, again affording RIDOH enormous discretion with what they may collect. https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html

If RIDOH only wishes to collect vaccination data, why does the department refuse to amend the language to vaccination only?

On a final note, you have stated that, “Recently, the states of Washington and New York have experienced large outbreaks of preventable diseases, and public health officials have used the information contained in the lifetime registries to keep their citizens safe, save lives, and prevent unnecessary spending of healthcare dollars.” Please keep in mind that the medical registry for adults in New York is OPT-IN ONLY WITH WRITTEN CONSENT and yet you have just indicated that the registry was effective.

Sincerely,

Maddalena Cirignotta

——-
From: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>
Sent: Thursday, June 13, 2019 3:24 PM
Subject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
Hi,
Yes as mentioned before we will have an option made available to remove information from RICAIR. Please accept this as documentation and the previous email as documentation even if the legislation is silent on the subject there will be that option. We are also fine with including language in statute. We would be happy to include the following language.
“Any person may opt out of the choose to remove their information from immunization registry by contacting the department directly by phone or by submitting a form online which shall be made available on the department’s website.”
As for limitations to what is collected the language in the bill reads as follows:
“information collected by the department for the immunization registry will only include data elements nationally endorsed by the Centers for Disease Control and Prevention to meet standards for immunization information systems.” Which can be found here: https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html
Again RICAIR will be built as a separate database from KIDSNET and immunization data will be removed from both databases if requested.
Also attached are the ACIP recommended vaccines for both adults and children which are limitations that are set in current statute.
Finally, as mentioned before is the most effective way to ensure effective immunization coverage recommended by the CDC and WHO. It is an effective way to balance protecting our community while preserving individual rights.
Best,
Neil Hytinen
——–
Sent: Thursday, June 13, 2019 5:50PM
To: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>; Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>
Subject: Re: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
Hi Neil,
Are you saying that the ONLY documentation you have that RIDOH will remove our information are your emails to me? Keep in mind that you sent them AFTER your statements to HEW and you have acknowledged that “the legislation is silent on the subject.”
Additionally, you mentioned that, “should RIDOH remove all of an individual’s identifiable information from RICAIR at any given point in time, RIDOH has no way of preventing future information from being entered into the database. Should more information be entered after the initial removal of all identifiable information, the individual must make subsequent opt-out requests to RIDOH.”
You are proposing a system which would require that we opt-out repeatedly yet we would receive no written confirmation that we have opted out in the first place. That is unreasonably burdensome to the public and contradicts your promises to lawmakers that the opt-out process would be simple.
Opt-in is the only way to protect the rights of individuals against data mining. I reiterate that the list of CDC approved data elements is 9 pages long and expressly pre-approves other data elements that individual may collect, again affording RIDOH enormous discretion with what they may collect. https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html [cdc.gov]

Again, I ask If RIDOH only wishes to collect vaccination data, why does the department refuse to amend the language to vaccination only?
Sincerely,
Maddalena Cirignotta

Bad senate bill has arrived

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There was a terrific showing of attendance on Wed two weeks ago for the hearing of H5541 against the bad database bill. Thank you to everyone who took the time to show up and wrote to the committee.

The companion Bad Database bill has dropped on the Senate side S676, sponsored by senator Crowley without any co sponsors listed.

Now be sure to let your representative & senator of your district know you do not want them to support these bills. Bring it to their attention. We have access to software for A SHORT TIME that lets you enter your address and send a direct msg to your rep. Do it NOW and then share this message with others too. We need to show that numbers are strong and we do not want this bill to pass. After you send the pre written email, it will give you the phone numbers so you can call and write down for future reference. Please commit to asking two friends to also use this tool to write in opposition of these bills.

Email the Health committee to oppose S 676 for the senate also. We will let you know when a hearing date has been scheduled.

Two emails will take approx 3min or less of your time. Later could become never, please email Now.

 

Additional piece of info that you may not have seen in our previous notices —

HIPAA laws exempt agencies such as a health department from following HIPAA guidelines with data they have obtained. In other words, once the DOH has the data in the database they are exempt from HIPAA laws.

 

Act NOW to stop this database from happening in RI.

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Follow us on social media too, and use hashtag #NOHPVmandateRI

Recent article about the bill

 

Thank you for all your support and continuing to stand for your rights and advocate for informed consent.

Aimee Gardiner

Director, Rhode Islanders against HPV vaccinations

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WE REACHED THE GOAL TO SEND THE BOOK “HPV VACCINE ON TRIAL” TO 26 LEGISLATORS. Thank you to everyone who made this possible.

Database Tracking Without Your Consent

Database Tracking Without Your Consent

Database Tracking Without Your Consent Should Worry Moms

Currently, the Rhode Island Department of Health (RIDOH) has a database, called Kidsnet, and your child’s information is there forever without your consent. This database has all RI resident minor children enrolled in it, and it’s likely you’ve never heard of it. Why is that?

First, it is a robust database tracking things well beyond what you may want tracked, and leave you wondering why such a database needs to be held within the RIDOH.

For instance, it records who lives in the home with the child, and it also tracks blood specimen from birth. Since when is a signature or voluntary consent not needed for DNA data storage? It tracks if you’ve ever enrolled in programs like WIC or Early Intervention.

Mothers may be especially unimpressed to find out that they are tracking if the child was born vaginally, or by c-section. A mother’s level of education, and whether or not the mother was married at time of time of birth are fields in this database.

Is this the kind of data tracking that we want to happen without our consent or approval?

The icing on the cake to this Kidsnet is you cannot delete the file. RIDOH will not remove it regardless of your request. You may only block your child’s file— so that only the RIDOH can see it, and not other signed in accounts.

RIDOH will continue to track and look at your file, while your objections fall on deaf ears. Want to block your file? Well, they go out of their way to make that inconvenient. You need to call the RIDOH then have your doctor witness you signing a form in their office.

We are in the 21st century, using complex databases tracking data without consent, and yet you can not use a online portal or notarized letter to request that our children’s information is blocked. According to the RIDOH, we must call then wait to sign at doctors office to block our child’s data. An electronic file that we should be able to have completely removed and deleted from the system.

Legislation H5541 has been introduced this year, and has a hearing date scheduled for Mar 13th at Rhode Island State House. This legislation expands the Kidsnet database to all adults in RI as part of the National Adult Immunization Plan.

It renames the database Rhode Island Child and Adult Immunization Registry (RICAIR). This database will be set to automatically enroll all adults residing in the Ocean State. This expansion of data mining without consent will now be for every Rhode Island resident no matter the age. When RI has an inflated budget that over spends beyond our revenue, why are we even considering putting more tax dollars to bureaucratic control for something we don’t have an actual need for especially considering the recent UHIP disaster.

National Adult Immunization Plan is an actual plan from HHS, and Goal 3 is increase community demand for adult vaccinations. Goal 4  Foster innovation in adult vaccine development and vaccination-related technologies. This database bill falls into that plan. Do you feel you need multiple more vaccines as an adult? Just a few months ago the FDA approved the HPV vaccine to be expanded to age 45, do you want to be bugged about getting a HPV vaccine? There seems to be a pattern with RI Dept of Health, moving forward with choices that are dollar driven and not driven by a need or want of the RI residents. Rhode Island does not have epidemics for anything a vaccine is available for.

If you don’t want to be automatically enrolled in a government database that you can not delete your file from then please oppose bill H5541. Please attend the hearing at 4:00pm on Wednesday the 13th at the Rhode Island State House. Citizens are encouraged to testify in person in room 101 or submit written testimony to the committee. Secretary of the H.E.W. committee can be contacted via lcataldi@rilegislature.gov

.

Aimee Gardiner

Aimee@NOHPVmandateRI.com

Instagram & Twitter @MyRightsRI

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http://www.health.ri.gov/publications/metadata/KIDSNETDataDictionary.pdf

https://www.hhs.gov/sites/default/files/nvpo/national-adult-immunization-plan/naip-path-to-implementation.pdf

https://nohpvmandateri.files.wordpress.com/2019/02/h5541.pdf

http://www.health.ri.gov/programs/kidsnet/about/confidentiality/#whatparentscando


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H5541 Hearing / Talking Points

H5541 Hearing / Talking Points

 

WEDNESDAY MARCH 13TH 4PM the hearing for H 5541 has been scheduled for Rm 101.

This is the BAD DATABASE BILL that will automatically enroll every RI resident.

We need as many people as possible to show up to this hearing to oppose this bill. Last year it passed on the senate side. This year it is in committee on the house side early in the legislative session. PLEASE attend and bring a friend or two with you. We created a Facebook event also so it is easy to share and invite others on social media. https://www.facebook.com/events/2214858705392691/

When speaking at a legislative hearing you are given 2 minutes to say your testimony. You may also bring written testimony only and not speak if you would prefer. Please bring 23 copies of your statement with H5541 at the top, and your name- address – and phone printed clearly on the documents. The clerk will distribute them to the committee. If you are not able to make it and want us to submit your written testimony on your behalf – please email it to aimee@nohpvmandateri.com.

Talking Points to consider;

~ RI Dept of Health is exempt from HIPAA regulations. No privacy protection.

~ The database itself plus the personnel salaries to maintain it will inflate our already very large RI budget. When we can barely pay for our state expenses, why are we adding to the tally when there is no actual need for it.

~ Automatically opting residents into a database is unethical. Currently this already happens with the child database in RI, and has no option to opt out of it. This should never be supported in this kind of way. If a database was to even exist, each resident should need to sign up that they wish to participate, and voluntarily take part in it.

~ You want the right to make private and non tracked decisions regarding HPV vaccines for your preteens, if they start tracking adults, do you want them bothering you next with getting the HPV vaccine? It was recently approved for through age 45 by the FDA

~ The language for “opt out” in the bill is not defined, and does not guarantee your file will be deleted upon opting out. The current database for kids does NOT allow the file to be deleted.

~ It would continue forward with insurers and pharmacists on the vaccine recommendation committee, without any citizen parent advocates or even immunologists, on the panel.

~ The last two weeks there were topic hearings in congress about vaccination and removing exemptions for all vaccines (this would mean no longer being able to decide which ones you are okay with or not). Tracking you as an adult also means being able to try to later make adults comply to vaccinations without exemption options, and they will have a database to target you from.

~ The language of the bill allows for no restrictions of what gets tracked. They can add any fields in the future, currently they track if a mother was married when child was born – what does that have to do with health? & who are they to decide this is okay to track?

 

Petition located at Database.nohpvmandateri.com

You can use and share www.2019.nohpvmandateri.com for writing prewritten emails to the committee. These are short and generic and we encourage you to add to them.

If the mandate of the HPV vaccine has shown us anything from RI Dept of Health, it is that they are not focusing on public health they are focusing on some kind of plan with a goal that is tied to dollars. In 2014 when the HPV vaccine was added to the schedule for 7th graders, the RI Dept of Health received a grant for over $600,000 to market the HPV vaccine. That’s over a half a million tax dollars spent in just this state to market a vaccine that Merck profits from.

 

Take action today.

See our previous message about multiple RI bills

 

Thank you for supporting the efforts of Rhode Islanders against mandated HPV vaccinations, you are appreciated.

 

Please SHARE THIS MESSAGE with others to help us reach out and get Rhode Islanders to know about this piece of legislation.

Follow us on social media too, and use hashtag #NOHPVmandateRI

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