From Hospitals to Fitbits: The Fight for Medical Privacy

The Trump administration has issued subpoenas to several hospitals that provide gender-affirming care to minors, requesting personal information about patients including names, home addresses, therapy notes, and Social Security Numbers. Among these hospitals, Children’s Hospital of Philadelphia is fighting back. They have filed a response detailing the harm that releasing this information would cause.

Gender-affirming care for minors is legal in Pennsylvania, and although it is reasonable for the government to request demographic-level medical information for studies, asking for unredacted medical records with personally identifiable information is not standard and not acceptable. The current government statutes allow for medical records to be obtained if there is evidence of a crime being committed, but gender-affirming care for minors is not federally illegal—it’s up to the states to decide.

As people with disabilities, we should take this as a warning sign. The federal government is trying to set a precedent that people with certain diagnoses do not have the right to medical privacy. So far, the administration has targeted people with Autism and our transgender allies, trying illegally to obtain personal health information. This administration has even pushed for information from wearable health devices like Fitbits or Apple watches for all Americans.

Our personal health information should be private. The Health Insurance Portability and Accountability Act of 1996, or HIPAA, covers all “individually identifiable health information.” This means any information that could be used to identify you, or your personal health records, including diagnoses and notes on what treatments you have received.  Your written consent is required for your records to be opened (this is why it’s problematic getting your records transferred from one doctor’s office to another!).  It’s part of the law that protects your medical privacy.

In Massachusetts, legislation was passed at the beginning August to further protect your personal health information. It’s called a Shield Law, and it prohibits authorities in MA from cooperating with any federal investigation into health care services that are legal in MA, including gender-affirming care and reproductive health care.

We are lucky to live in a state where our legislators are willing to fight for our rights to medical privacy. Not everyone is so lucky. This is a good time to check in on your friends in other states and see what supports you can offer them, and also a great time to thank your elected officials for voting in the Shield Law.

For more information on the MA Shield Law check out: https://www.mass.gov/news/governor-healey-signs-updated-shield-law-strengthening-protections-for-health-care-providers-and-patients

Rachael Cowan
Systems Change Advocate, Stavros CIL