Hello! We aren’t lawyers, just regular people sharing regular-person advice. This template was originally posted on the Legally Autistic FB page, and shared with us via E. Thunderwood on Instagram. Thanks to them for their hard work on this matter.
It’s unclear, given the breadth of the current administrations’ defiance of laws, as well as Medicare/aid’s access to patients’ medical information to a degree already, how effective this request will be. It’s our feeling that it’s worth a shot; your mileage may vary.
Link to NIH press release about moving forward with the Autism Database.
Link to NPR Article about kinds of information that will be integrated into database.
Template:
Part 1 CONFIDENTIAL MEMORANDUM
To: [Doctor’s Full Name]
From: [Your Full Legal Name]
Date: [Insert Date]
Subject: Restriction on Disclosure of Protected Health Information (PHI)
Dear Dr. [Doctor’s Last Name],
I, [Your Full Legal Name], date of birth [MM/DD/YYYY], am writing to
formally exercise my rights under the Health Insurance Portability and Accountability Act (HIPAA), 45 CFR 164.522(a), to restrict the disclosure of my protected health information (PHI).
Specifically, I am hereby directing that you and your practice not disclose any part of my medical records, including but not limited to my autism diagnosis and any related treatment notes, to the U.S. Department of Health and Human Services (HHS) or any of its agencies, except where disclosure is required by law (such as in response to a valid court order or for public health reporting where no waiver is permitted).
Part 2
This restriction applies to:
Verbal, written, or electronic disclosures;
Disclosures for research, audits, or program evaluations not otherwise required by law;
Any sharing of medical records through Health Information Exchanges (HIEs) without my express written authorization.
I understand that under 45 CFR 164.522(a)(1)(ii), you are not required to agree to requested restrictions unless the disclosure
is for payment or healthcare operations and I have paid out-of-pocket in full. However, I am asserting this request as a formal limitation on your voluntary disclosures unless legally compelled.
Please retain a copy of this memorandum in my file and confirm in writing that you will honor this restriction, unless and until I provide express written authorization or legal process mandates otherwise.
Thank you for your attention to this matter.
Sincerely,
[Your Full Legal Name]
[Your Address]
[City, State ZIP Code]
[Phone Number]