Hands off our health records!

We have been watching HB1003 and fighting to get protections for your health records in the bill.

Rep Brad Barrett made a small concession, but unfortunately, the current changes do NOT protect your medical records. [Read about how your health records are being sold to the tune of $17 million dollars a year...]

The bill will go to "Ways & Means" committee tomorrow for amendments and we have already emailed the committee and been working with Rep. Borders to strengthen the language...

We need your help.

I don't usually ask for emails because they are not as effective as calls. However, ways and means has a TON of members.  I am not going to ask you to make those calls.

If you can spare 5 minutes, please Call Rep Barrett 317-232-9695
and tell him "Amend HB1003 to Provide Hoosiers with TRUE medical record privacy. The current provisions are not enough."

Then email the members of the ways and means committee:

[email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected]

You can also send to Rep. Barrett [email protected]

Copy and paste the following or create your own message. Attachment for the letter below.

Subject: Amend 1003 in Ways & Means to protect Hoosiers Health Records!

Dear Representative,

I am writing to urgently address a concerning issue that has come to light regarding Health Information Exchanges (HIEs), specifically the Indiana Health Information Exchange (IHIE) and its practice of accessing and sharing personal health information (PHI) without patient consent.

This practice has led to several complaints from Hoosiers who feel their privacy has been violated, particularly regarding the sharing of medical records through HIEs.

The attached letter from the Indiana Department of Health (IDOH) outlines how Hooiser information can be shared through the Treatment exception in HIPAA (45 CFR 164.506), without requiring explicit consent from the patient.

As stated in the letter:
"Please note that individual patient health information (PHI) may be shared with the Department of Health without the consent of the patient through the Treatment exception in HIPAA, found at 45 CFR 164.506. This is a referral for treatment, the treatment is the vaccination, from one provider to another. The state Department of Health is a provider for purposes of vaccine administration."

This provision allows the IDOH to access and utilize individuals' health information for vaccine administration without the patients' knowledge or approval.

In this particular case, a constituent reached out to Hoosiers for Medical Liberty (H4ML) after discovering that her personal health information had been shared with the IDOH without her consent.
She was unaware of this transfer of her medical records and did not authorize or wish for the treatment (vaccination) to take place. She expressed feeling that her privacy had been violated, a sentiment shared by many Hoosiers who are unaware of the extensive reach of the health information exchange infrastructure.

Unauthorized referrals and release of information are unacceptable to Hoosiers and this letter has been seen as an underhanded and deceptive means to coerce patients into unwanted medical treatments.
Could a pharmaceutical company do the same if offering a “discount program”, “trial participation”, or another service? Could this be used to pray on vulnerable Hoosiers?

The implications of this practice are significant. By bypassing explicit consent for the sharing of sensitive health data, the current system undermines individual autonomy and medical privacy. Hoosiers must have the right to decide when and how their medical information is shared.

This practice also highlights the broader issue of the HIE system, where patient data can be accessed without patient authorization.

H4ML has received other complaints from Hoosiers about insurance companies knowing their distant medical history, which lead to discrimination. Others have reported seeking care out of state and medical records transfer without consent.

At this time Indiana’s HIE is run by a non-profit entity with no accountability to the individuals whose information they are obtaining. Hoosiers PHI is being shared across state lines. This creates a loophole for potential privacy violations, leaving personal medical information vulnerable to misuse. The Indiana Legislature must act NOW to protect Hoosiers medical privacy.

As such, I strongly urge you to amend HB 1003 to include a provision that requires:

1. Notification to all impacted by IHIE and the IDOH breech of medical Privacy.
2. Opt-in for all IHE, with explicit authorization prior to the release of PHI separate from HIPAA authorization.
3. Opt-out procedure for those who have already had info shared.
4. Transparency & accountability- Hoosiers must have access to their records, who has accessed them, and for what purpose.
5. Violation penalties in line with HIPAA.

This would help restore patient control over their own health data and close the current gap that allows for unauthorized sharing of sensitive medical information.

The current provisions are not enough.

I urge you to take action to protect the privacy of Hoosiers and correct course by developing a comprehensive amendment to HB 1003, rather than catering to vendors with a vested financial interest in obtaining Hoosier records. It is critical that we prioritize the protection of medical privacy in our state.
Thank you for your attention to this urgent matter. I look forward to your leadership in ensuring the privacy and autonomy of Hoosiers' medical information.

Sincerely,


 
P.S. For a background on the issue, 1/28/25- H4ML founder testified on the important issue in the insurance committee. [To watch my testimony, select insurance committee and the date then skip to 1hr 12 minutes]

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