Your medical data is out there and the only way to stop misuse of it is regulatory law.
Avoid using nonsense copypasta letters you find on facebook. Rely on proven sources who know how things work in government for information on how to advocate for yourself.
I saw someone on Bluesky social media circulating an advocacy letter template for autistic people that they found on Facebook that has incredible flaws. A letter that was supposed to be invoking HIPAA rights “so don't send the autism diagnosis to HHS" letter template. Of course everyone seems to misunderstand what HIPAA is for one thing. But this letter actually included the stipulated exception that actively gives permission to your data for public health purposes! And that's exactly what RFKJr's autism database is supposed to be. It doesn’t matter if it’s not scientific or appropriate or if it’s dangerous. He's the head of HHS! He's doing this under his PUBLIC HEALTH AUTHORITY. As the head of HHS he is the top health official in the nation. So if you send a letter saying "don't send my med data to HHS unless it's for public health purposes" you're literally ACTIVELY giving permission for them to send it for whatever official public health autism database they’re doing.
This is SO much like the "right to mask bills" that include a poison pill and actually introduce forced unmasking and mask bans where they don't even exist by including these bonkers "exceptions" that do the opposite to what you actually want. It was like the writer of the letter was trying to be clever and legal somehow and doing this just completely reverses the point of it in the first place. And then unwitting people just assume they’re very clever and use the template.
WIRED - Dell Cameron Dhruv Mehrotra Security May 14, 2025 12:53 PM CFPB Quietly Kills Rule to Shield Americans From Data Brokers Russell Vought, acting director of the Consumer Financial Protection Bureau, has canceled plans to more tightly regulate the sale of Americans’ sensitive personal data. Many people are unaware that data brokers even exist, let alone that their personal information is being traded.
North Korea is heavily into cryptocurrency in order to perpetrate data breaches ransoms on American healthcare systems and hospitals. Sure it's illegal to hack into medical data, but these state actors almost never actually get arrested. And there's curiously there are no laws against buying and selling American personal healthcare data once it's been stolen, so just about anyone can buy your private healthcare data from data brokers.
AP - North Korean charged in cyberattacks on US hospitals, NASA and military bases By NICK INGRAM, MICHAEL GOLDBERG and HEATHER HOLLINGSWORTH Updated 8:21 PM EDT, July 25, 2024 A North Korean military intelligence operative has been indicted in a conspiracy to hack into American health care providers, NASA, U.S. military bases and international entities, stealing sensitive information and installing ransomware to fund more attacks, federal prosecutors announced Thursday.
So the issue isn't about HHS getting its hands on your data and using it for illegitimate purposes. They have access to all this data any way they want through Peter Thiel's Palantir, through government agencies, or they can buy it off the market from data brokers. And RFKJr is the top public health official in the U.S. so they can just say it's for public health purposes, so saying it's ok to use your data for public health purposes completely undermines the entire purpose of trying to persuade healthcare providers to not share your data.
The only way to prevent your medical data from being used against you, for state sponsored eugenics and genocide, or even just prevent bunk science being done, is to do politics and influence elected representatives to do legislation to prevent it. And just don’t send letters you don’t understand on issues you’re not sure about to anyone. Resist the urge to hurry, stop and engage in critically evaluating anything that involves legal requests.