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
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Fight against Medical Tracking in RI

Fight against Medical Tracking in RI

S676 sub A and H5541 sub A are coming close to being passed in RI statehouse. Keep fighting. It’s not over until its over.

Take a multi step action approach TODAY and throughout this week

CALL the Governor office to Oppose these bills. You won’t get her herself. Leave a msg with staff to oppose S676 sub A and H5541 sub A, and refuse to sign into law if they pass the floor vote. 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

Call Senate President and Speaker of the House that you oppose the medical tracking database and they should also.

**Speaker Nicholas Matiello: 401-222-2466
**Senate President Ruggerio 401-222-6655

Call Senate HHS Committee Members to Vote NO on S676 sub A on Tues June 18th

Chairperson Joshua Miller 401-276-5507
Vice Chairperson Gayle Goldin 401- 276-5568
Senator Elizabeth Crowley 401-725-8526
Senator Thomas Paolino 401-749-6120
Senator Adam J. Satchell 401-615-5170
Senator James C. Sheehan 401-276-5567
Senator Bridget Valverde 401-379-0082
Senator Donna M. Nesselbush 401-728-3244
Senator Valerie Lawson 401-316-5666

Points on these bills;

RIDOH proposes an opt-out system that would require us to opt out, REPEATEDLY. We may be enrolled whenever we see a new doctor. There are no checks and balances of power. The same agency that tracks will also define the opt-out process those who wished to opt out would receive no written confirmation that they had been removed. RIDOH would also NOT be compelled to expunge any information collected while we were automatically enrolled.
This bill violates privacy and informed consent and proposes to legally data mine Rhode Islanders. New York, New Jersey and New Hampshire all have opt-in databases. We should too.

The Rhode Island Department of Health has introduce House Bill 5541 via Representative McNamara and Senate Bill 676 via Senator Crowley, to track the medical data of every person in Rhode Island. According to lines 9 & 10, RICAIR (tracking database) will collect, “data elements nationally endorsed by the Centers for Disease Control and Prevention” Meanwhile, CDC endorses ALL data elements that a tracking database collects, “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.”  – Note the bold wording below the spreadsheet here from the CDC https://www.cdc.gov/vaccines/programs/iis/core-data-elements/CDC-Endorsed-Data-Element-Definitions.xlsx

RI ACLU has opposed this legislation see their statement here http://riaclu.org/images/uploads/H_5541_Immunization_Registry.pdf

 

Send two emails– one to whole house of representatives – one to whole senate.

Use info above to compose your email. You may also keep it to one paragraph like suggestion above for calling Governor.

Example Signature

Aimee Gardiner, RI Parent, Health Advocate, 4017410386

 

Copy and Paste list for House Representatives – BCC whole house in one email

Subject; OPPOSE H5541 subA floor vote on Medical Tracking Database

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

 

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

Subject; OPPOSE S676 subA floor vote on Medical Tracking Database

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

 

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

URGENT ACTION against #BadDatabase bills

URGENT ACTION against #BadDatabase bills

The Bad Database Bills have made it to the calendar of June 12th and 13th ~ OPPOSE H5541 & S676
THIS IS VERY BAD, AND INDICATES THEY COULD PASS IF LOTS OF ACTION IS NOT DONE RIGHT AWAY.

ACTION ITEMS
Please complete ASAP

1. CALL each one of the committee members Plus the Speaker and the Senate President to OPPOSE these bills. (see list below)

2. Sign the petition Database.nohpvmandateri.com ~ this will be printed and distributed to the committee members.

3. Invite as many RI residents in the FB event to be informed as you can, and/or share this blog link. Numbers are the only way we can kill this.

See ACLU testimony against this legislation here http://riaclu.org/images/uploads/H_5541_Immunization_Registry.pdf

Below you will find 26 phone numbers to call to oppose these bills. That may seem like a lot, with how much these bills infringe on our rights and the 4th amendment, we urge you to call all of them. If you truly feel that you can not. Please call the ones we have starred to urge them to OPPOSE the bills.

Sample message “I am calling to urge you to strongly oppose database tracking bills that auto enroll RI residents. RIDOH is exempt from HIPAA laws, I want you to protect my privacy and right to informed consent. Oppose bill [ state which bill ] legislation that infringes on our rights.”

OPPOSE H5541 & S676

Senate HHS Committee Members
OPPOSE S676
**Chairperson Joshua Miller 401-276-5507
**Vice Chairperson Gayle Goldin 401- 276-5568
**Senator Elizabeth Crowley 401-725-8526
Senator Thomas Paolino 401-749-6120
Senator Adam J. Satchell 401-615-5170
Senator James C. Sheehan 401-276-5567
Senator Bridget Valverde 401-379-0082
Senator Donna M. Nesselbush 401-728-3244
**Senator Valerie Lawson 401-316-5666

House HEW Committee Members
OPPOSE H5541
**Chairman Joseph M. McNamara H: 401-941-8319 W: 222-8319
**Vice Chairman Dennis M. Cannario H: 401-683-4926 W:401-222-6595
2nd Chairman Robert D. Phillips H: 401-762-2010 W: 401-222-2466
Representative Mia Ackerman H: 401-658-0981 W: 401-222-2466
Representative Karen Alzate H: 401-663-5600 W:401-222-2466
Representative Greg Amore H: 401-339-9378 W: 401-339-9378
Representative Samuel A. Azzinaro H: 401-596-1434 W: 401-222-2933
**Representative David A. Bennett H: 401-480-4647 W: 401-222-2466
Representative Chris R. Blazejewski H:401-484-8814 W:401-484-8814
Representative Julie A. Casimiro: H: 401-474-7961 W: 401-474-7961
Representative Susan R. Donavan H: 401-253-7837 W: 401-222-2466
Representative John W. Lyle,Jr H: 401-723-6104 W: 401-222-2466
Representative Shelby Maldonado H: 401-340-8833 W: 401-222-2466
Representative Sherry Roberts H: 401-680-0128 W: 401-222-2466
Representative Jose R Serodio H: 401-340-9150 W: 401-222-2466
**Representative June Speakman: H: 401-258-1134 W: 401-222-2466

**Speaker Nicholas Matiello: W: 401-222-2466
**Senate President Ruggerio 401-222-6655

Time Is Short To Protect Your Health Data

Time Is Short To Protect Your Health Data

 

The Bad Medical Tracking Database is making its way through the Rhode Island General Assembly, and it is up to you to stop it.

Your personal private health data could be put at risk, and the privacy of your family is on the line. H5541 & S676 have been heard at the Rhode Island State House, and our people fought back hard. We offered expert testimony on why our lawmakers should vote NO.

We’re not sure it’s enough. 

We must make a final push before the end of the legislation session. We will be canvasing in key lawmaker districts with a message telling them to keep your information safe by voting NO. A geo fencing campaign to cover the RI statehouse and Providence Place Mall will get advertisement in the hands of each person that walks in the door. We need your help to raise funds to print our flyers and execute the campaign. Please donate now.

This legislation expands the Kidsnet database to all adults in RI, auto opting you in to track your private medical choices! 

We must stop it before it is too late!

Please click the link here now or on the button below to donate. Your support makes the difference for Rhode Island.

Click here to donate $25

Click here to donate $50

Click here to donate $75

Click here to donate $100

If you don’t want to be automatically enrolled in a government database that you can not delete your file from then please oppose bills H5541 & S676. We’re counting on you. Thank you.

 

-Aimee Gardiner, Director

 

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

 

To sign the petition against these bills also database.nohpvmandateri.com

 

 

 

Act Today against S676

Act Today against S676

THURSDAY MAY 9TH 4:30P is the hearing for S 676 has been scheduled in the senate lounge. Only three bills are currently on the agenda for this evening. Show at close to 4:30 as you are able – you can text Aimee 4017410386 to ask about status etc if you are running late.

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

Summary of medical tracking bill S 676:
The Rhode Island Department of Health has introduce Senate Bill 676 via Senator Crowley, to track the medical data of every person in Rhode Island. According to lines 9 & 10, RICAIR (Rhode Island Child and Adult Immunization Registry) will collect, “data elements nationally endorsed by the Centers for Disease Control and Prevention” Meanwhile, CDC endorses ALL data elements that a tracking database collects, “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.”

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. 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/423331301562642/

Last year, the ACLU strongly opposed this weak and ineffective opt-out data collection system, citing 5 compelling reasons. Below is a particularly relevant example.
“Finally, and sadly, we have no reason to believe these fears are beyond the pale. In the recent past, the DOH has shown that it does not consider patient confidentiality a priority in its mission. Last year, Committee members will recall, the DOH supported legislation sponsored on behalf of the Attorney General to give law enforcement access to the Department’s prescription drug monitoring database without a warrant. DOH did so only a few years after it got a bill passed to vastly expand the prescription information in that database by agreeing that police would not be able to gain access to the information without a warrant. In the past year alone, the Department has proposed regulations to expand third party access to two other large agency databases with confidential patient information – the health information exchange and the allpayer claims database. There is simply no reason to trust the Department to put the confidentiality interests of patients first once this information is included in a DOH database.”

ARE YOU ALL IN AGAINST THIS INTRUSION OF YOUR MEDICAL PRIVACY AND RIGHTS TO YOUR PERSONAL DATA?! We created a multi step list for those ready to go all in for the fight for your rights. CLICK HERE for that list.

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 15 copies of your statement with S676 at the top, and your name- email or 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;

~ No limit to data tracking as stated in summary paragraph above.

~ 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.

~ The Dept of Health was granted a prescription database with the statement that police officers would not have access to it without a warrant. They later advocated in favor of and a bill passed to allow that very database to be accessible to police in RI without a warrant.

~ The DOH is exempt from HIPAA laws. Once they have the data there is no privacy protection in place.

~ The language for “opt out” of the bill is not defined, and does not guarantee your file will be deleted upon opting out.  The current database for kids has a multi step inconvenient process that does not allow your file to be deleted.

~ 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.

~ 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

 

==== Call Your senator ( can find who that is vote.sos.ri.gov) and tell them to oppose this bill that intrudes on your personal data and does not give any form of privacy guarantee. That you do not consent to the DOH having the ability to track any medical data field they decide. ====

 

We have also created a petition that we will print and bring with us to the committee hearing. You can sign and share the petition via database.NOHPVmandateRI.com

The Dept of Health has shown RI on more then one occasion that they should not be trusted. Stop the database tracking bill!

Take action today.

 

 

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 to as many people as we all can together to be informed about this bill.

 

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

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Donate Today! Help us accomplish the mission

All In Action Items

All In Action Items

This Action Item list is specific to the database tracking bills H5541 & S676

  • Mark your calendar for May 9th at 4:30p to attend hearing on S676 in senate lounge. Personally ask two friends/family members to attend also.
    • Did you already email the Senate Health and Human Services committee?    Yes?! Great.   Either way – Email the whole senate with the emails list below place the list the in BCC field (should be able to copy and paste) Last year it passed the senate floor so fast. We are switching up strategy and having the whole senate be informed on why to oppose this bill. We want to be sure they are aware it is coming and the public is not in favor of it. See some talking points and details here

Mail to full senate     This link will email whole senate but will not place emails in the BCC field, we suggest using the BCC field. Here is the list of emails that you can copy and paste if that link also doesn’t work for you  – scroll past list to see other action items –

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

admin@nohpvmandateri.com

  • Make THREE phone Calls. Senator Crowley (sponsor of the bill)  home 4017258526     politely ask her to withdraw her bill, that it intrudes on your medical privacy and circumvents informed consent. Senate President  Ruggerio  office 4012226655  Say the same, and add that the RIDOH has already shown to not be trustworthy with patient data- that they shouldn’t be allowed to collect more private citizen data elements. Last one is your personal Senator. Say the same as above and add you want them to Oppose this bill if it comes to a vote. You can look up your senator at vote.sos.ri.gov
  • Sign the petition and share on your social media. With this link Database.NOHPVmandateRI.com
  • Hang this flyer around your area on community boards and anywhere that will permit you to hang it up. Don’t forget to pre-cut along dotted vertical lines.
  • Do you have ideas? Thoughts on things that could improve the mission? Send them to us. We love to hear from you and appreciate feedback. Admin@NOHPVmandateRI.com

 

Thank you so much for your support and efforts, we greatly appreciate it.

senate Bad Database Tracking Bill Scheduled

senate Bad Database Tracking Bill Scheduled

THURSDAY MAY 9TH 4:30P is the hearing for S 676 has been scheduled in the senate lounge. Only three bills are currently on the agenda for this evening. Show at close to 4:30 as you are able – you can text Aimee 4017410386 to ask about status etc if you are running late.

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/423331301562642/

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 15 copies of your statement with S676 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;

~ The only illness a vaccine is available for that is sometimes in high numbers, in adults, in RI is influenza. Therefore why are trying to track all adult vaccines in this state.

~ 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

~ 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 language for “opt out” of the bill is not defined, and does not guarantee your file will be deleted upon opting out.

~ 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.

 

We have also created a petition that we will print and bring with us to the committee hearing. You can sign and share the petition via database.NOHPVmandateRI.com

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 kinds 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 to as many people as we all can together to be informed about this bill.

 

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

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