HIPAA - Don't Get Me Started

The Health Insurance Portability and Accountability Act of 1996, or HIPAA, is a law that, in its early years, had laudable aims. Its primary purpose was to protect the rights and medical interests of people with stigmatized illnesses, most notably AIDS. Remember how AIDS patients were the lepers of the late twentieth century? Just twenty years ago homophobia was undiminished in all aspects of American society. The Reagan administration ignored the epidemic. There was no cure. You could lose your job if you tested positive. Or your insurance.

HIPAA came to the rescue. It gave AIDS victims legal recourse against any insurance company or medical institution that shared medical records without the patient's permission. And this protection extended to all medical records, whatever the disease or medical condition. (See http://www.hhs.gov/hipaa/index.html )

Times have changed. AIDS is treatable and we no longer tread in superstitious fear around its victims. Homosexuality is no longer the social stigma it was, despite the dying gasps of the hyperphobic religious right. The patients' "Bill of rights" is universally acknowledged in medical practice across the country. Patient privacy and patients' rights have been incorporated into the Affordable Care Act, a.k.a. Obamacare.

But HIPAA is still around, and it has mutated into something different from what it was intended to be. It's now the Medical Care Institutions Ass Coverage Act.

You can see how this came about. HIPAA put the tools for successful litigation into the hands of patients and their families. And that tool has turned out to be highly exploitable in many hands.

I live in a long-term resident care facility, what used to be called a nursing home. My paraplegia and the slow degeneration of my condition means that I need full-time care that not even assisted living can provide. I have been at Ladera for nearly four years, and I've had plenty of time to observe the effects of HIPAA on resident care and how things are done on da hall.

I will have to be careful when I talk about my life here; the corporate overlords are seriously frightened that I will say something that will get them in legal trouble with some other rezzie. Can Ladera Care shut me up? No. (See http://www.hhs.gov/hipaa/for-professionals/faq/206/is-a-covered-entity-required-to-prevent-any-incidental-use/index.html )  They can entreat me to not give the names of other patients, or post pictures of fellow residents, or post details of other residents' medical conditions; by doing so, they have covered their own corporate butt. I in turn will comply with those particular demands. No photos of residents. No real names. No medical revelations besides those regarding my own falling-to-bits body.

But I can and will talk about my life and what happens to me. And I will have some things to say about how HIPAAphobia has affected me.