Me, Myself, as Mommy: Government has no right to private medical information

A fairly common scene from childhood — my mother furiously rocking in her chair, the phone cord stretched to its limit, grinding a hole into the floral wallpaper as she sparred with some health insurance company. Spending an hour on hold was just frustrating foreplay before having a dead-end conversation, leaving no one satisfied. Not much has changed with the advent of the internet, smartphones or AI; there's just more options to feel screwed. Case in point: After an ineffective, 47-minute conversation with the CVS Caremark representative who literally said, "I'm not sure what's going on," I marched down to my computer to write.

It's been a long two weeks since Health and Human Secretary Robert F. Kennedy said "autism destroys families" and likened the diagnosis to a "tragedy" that leaves people with autism unable to function. He made these offensive statements as he announced more research on Autism Spectrum Disorder, which could be hard to do with all the mass layoffs and funding cuts happening at scientific research institutions. I shouldn't have worried though. Shortly after Kennedy's speech, National Institute of Health Director Jay Bhattacharya spoke of their plan to start an autism registry. Kennedy may get his wish to have autism cases decline as parents will no longer seek solutions to their children's needs for fear of being on a registry.

With Big Brother ready to comb through my private medical information aiming to add me onto some list, I needed to understand how they could access the information. Would we get to volunteer in the name of science? While the NIH has since said they scraped that idea of a "registry," I've learned a little something in my 41 years of life — the government never really scraps an idea, they just put it on ice until the revolt dies down.

According to the NIH, it would have gotten medical information about people with autism through "pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together." Because our insurance plan only allows us to get prescriptions through king-of-the-chains CVS Caremark, I knew our Protected Health Information, or PHI, was up for grabs so I called Caremark.

Without a rocking chair, a phone cord and no time being on hold, I still felt frustration knowing I wouldn't get a straight, educated answer. Caremark's customer service representative assured me that sharing this information was a Health Insurance Portability and Accountability Act, or HIPAA, violation. Turns out — not so. Listed right in the HIPPA Notice of Privacy Practices, under the heading "Other Uses and Disclosures of Your PHI that Do Not Require Authorization", I found: Under certain circumstances, we may use or disclose your PHI for research purposes. For example, we may use or disclose your PHI as part of a research study when the research has been approved by an institutional review board…We may disclose your PHI in certain situations to help with public health and safety issues when we are required or permitted to do so, for example to prevent disease.

The cynic in me would call it perfect timing when Kennedy called ASD a "preventable disease" during his press conference.

Using vague terminology allows corporations to skirt around the realities of what lines they are willing to cross and who they are willing to cross them for. While it's tragic we live in a timeline yet again politicizing matters of health instead of recognizing most of the public is not equipped to understand medical care, certainly we can all agree personal information should stay that way.

Gun enthusiasts don't want a registry for fear of government overstep. Seems the same idea applies to parents not wanting a registry of their kids' neurodivergences. Right here in Utah, Senator Todd Weiler proposed Senate Bill 155, which would allow registered sex offenders a path off of the registry, yet the NIH thought it appropriate to track people with autism for life. Bright Line Watch, a nonpartisan group of political scientists, has warned that authoritarian tendencies are taking root in the U.S. not through overt power grabs but under the guise of constructive policies like using PHI for autism research.

It's disingenuous when corporations like CVS Caremark wave the HIPAA flag while dedicating an entire page to all the ways they can share your PHI without your say. It's an opt-out system disguised as a patient right. Their "Request a Restriction on Certain Uses and Disclosures" policy allows you to write a letter asking them not to share your info, but the same paragraph states: We are not required to agree to your request except where the disclosure is to a health plan or insurer for purposes of carrying out payment.

It also feels unethical the health insurance I pay for forces me to use a pharmacy that can then legally pass my child's diagnosis to a government study, whether the registry is active, paused or simply renamed after being thawed. While the NIH said no more registry, it plans to go forward with its research using "existing datasets" to support research, meaning it won't troll for new information; it will just use the old pulled from pharmacy records, insurance claims, lab results and wearable device data.

In a time where common ground is no bigger than the summit of Everest, it seems we can all meet there to rebuff government overreach of our private medical information and the transparency of who gets access. They certainly have plenty to use among the social media we update, the smartphones we scroll, the internet we worship, the AI coming for our jobs and the newspaper columns we write.

Meg Sanders worked in broadcast journalism for over a decade but has since turned her life around to stay closer to home in Ogden. Her three children keep her indentured as a taxi driver, stylist and sanitation worker. In her free time, she likes to read, write, lift weights and go to concerts with her husband of 18 years.