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

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

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

B&amp;W_Facebook_icontwitterlogoinstagram

 

 

 

 

Donate Today! Help us accomplish the mission

Action Items

Action Items

Tomorrow May 1st Room 101 at approx 4:30p is the hearing for bill H 5165

Please attend this hearing. Even if you need to show at 5p and leave at 5:30p – showing up to the state house makes a huge difference. When legislators see the numbers willing to drive in to support a cause, it matters. (to the right down the hall after going through security)

We hope many will decide to speak at the hearing However if you have not done this before and are not fully comfortable doing so; you can write your testimony and when they call your name you can go up and simply say- “Thank you for your time this evening, I am here to say I fully support bill H 5165, and I have submitted my written testimony for you to read”. You do not need to feel obligated to say more then that.

Your written statement must clearly state your name, and a form of contact whether that be your phone number or an email. The top must be clearly marked with the bill # 5165

Action 1 – CALL The HEW Committee Secretary to take your name and that you support this bill to pass out of committee and you wish it to be passed on to the committee members

Secretary: Lisa Cataldi
Phone: 401-222-2296
Email: lcataldi@rilegislature.gov

Action 2 – Submit your written testimony (if you are unable to attend) to the secretary email and CC to us at admin@nohpvmandateri.com ~ be sure to clearly label the bill H 5165 and your name in support of the legislation.

DO THESE TWO THINGS AS SOON AS YOU ARE ABLE

 

We have a gift set you can win too!! We are fighting hard on your behalf for informed consent, and transparency within the Dept of Health. We need your help to launch an ad awareness campaign across multiple platforms, and fight the Bad Database Bills.

40 People donating $40 is a good start to kick off, and 50 people donating $50 covers the entire campaign to win this fight. DONATE today

doterragift

For every $40 donated between now and May 2nd at 8p EST, your name will be entered to win this brand new essential oil gift set. Give the gift of victory Now 

 

If you have any further questions about the hearing or anything about what we advocate for at all please feel free to email aimee@nohpvmandateri.com or call me 4017410386

Aimee Gardiner ~ Director, Rhode Islanders against Mandated HPV Vaccinations

 

 

For an update on 2019 legislation Click Here

H 5165 has been scheduled

H 5165 has been scheduled

cropped-13595455_1247188778633185_372670439_n.jpg

 

H 5165 has been scheduled for May 1st in Room 101 of the House side of RI Statehouse. “The rise of the house” at approx 4:30p

(Here is the facebook event link https://www.facebook.com/events/415281805870598/ )

 

This bill was the first bill introduced this year that is on our side of the debate of informed consent and medical freedom. This bill will make philosophical exemptions available again in RI (as they once were) for vaccinations. RI Dept of Health has been saying for years if you don’t want the HPV vaccine or any vaccine just fill out the religious exemption form. Which is defined by your personal interpretation of your strongly held belief system. However, what about body autonomy? What about the fact that public education is free and available for all, and if you decide that after evaluating something like the HPV vaccine or the flu shot – you do not wish to get these things – you should not be forced to get the medical procedure. The philosophical exemption allows you to not get a vaccine for the simple fact you control your body (or your child’s body). This is extremely important with the case of the HPV vaccine in RI, as you can not spread HPV in a casual classroom environment to begin with. 

We strongly advocate for informed consent. If your only option not to get a medical procedure and still access the education you are entitled to as a citizen, is a religious exemption…….. than you are not being given true informed consent and the ability to decline appropriately. We encourage you to support this legislation that supports your rights as parents and individuals over body autonomy. Contact your personal legislators to support H5165, come to the hearing on Wed and email the committee to pass this bill.

 

takeaction.jpg

We also want to say a HUGE THANK YOU to our supporters. We did it and the books have arrived! HPV Vaccine on Trial book will be delivered to 26 legislators in RI Statehouse this week. All possible by the help and donations of all of you. Thank you so much.

58374881_1832045596896312_1843256902377537536_o

Please help us continue to fight forward. Give toward the awareness campaign to educate the public about the bad database bill and fight it in RI. 40 people donating $40 will get us a good start. 50 people donating $50 will get us to the full goal of a strong ad campaign across multiple platforms. Help us help you win Today. Donate Now

 

 

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

4017410386

WE RAISED THE FUNDS TO SEND THE “HPV VACCINE ON TRIAL” BOOK TO 26 LEGISLATORS!! Thank you to everyone who supported this effort. To help us keep the fight strong, donate at www.gifts.nohpvmandateri.com

 

 

Bad senate bill has arrived

cropped-13595455_1247188778633185_372670439_n.jpg

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.

takeaction.jpg

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

4017410386

 

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

Next Step for H5541

Next Step for H5541

There was a terrific showing of attendance on Wed last week 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.

Now be sure to let your representative of your district know you do not want them to support this bill. Bring it to their attention. We have access to software for THIS WEEK ONLY 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.

 

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.

Write to Your Legislators

Follow this blog to get notified of new posts