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.

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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

B&W_Facebook_icontwitterlogoinstagram

 

 

 

Donate Today! Help us accomplish the mission

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

————-

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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