Imagine if your health insurance company provided your employer with details about your mental illness, including diagnosis and notes. At the same time, your doctor didn’t have to give this information to you.
That was life before HIPAA.
The Health Insurance Portability and Accountability Act of 1996 made it less likely that someone would lose health insurance coverage if they lost their job, and it began the effort to avoid the denial of coverage for those with pre-existing conditions.
But it is most familiar as the privacy law.
Before HIPAA no federal regulations addressed the privacy of an individual’s healthcare information. Some states had privacy laws, but they were not comprehensive and suffered from lax enforcement.
Today health insurance companies routinely provide employers very general information about costs and claims. However, it’s difficult for a company to apply this information to specific individuals, and health insurers don’t provide employers with individual records.
Before HIPAA was implemented in 1996, and expanded in 2000, they often did.
I was an executive at a finance company in the early ‘90s when the symptoms of my as yet undiagnosed bipolar disorder became severe. I was missing work, acting impulsively, and making very poor decisions. I even began hallucinating and became suicidal.
I wouldn’t dare see a psychiatrist, for if I did it would be in my health records and my career would be over.
I knew that companies received detailed updates about employee health insurance claims, and that these updates often made it easy to either directly or indirectly identify the employees making the claims. I didn’t want my employer to know I was going crazy.
The only way to protect myself from the health insurance company sharing this information with my employer was to not have this information available at all. The only way to do that was to not get treated for a mental illness.
Instead I went to a neurologist who diagnosed me with fibromyalgia to cover-up my symptoms. He prescribed an antidepressant. I paid the pharmacy cash for my prescription so the cost wouldn’t appear on an insurance claim that could be shared with my employer.
That led to a disaster as my mania spun out of control.
Misdiagnosed and given an improper medication, I became irrational and applied for a gun permit. On my 31st birthday I changed my voicemail at work to say, “Hello, this was George. I am no longer able to return your call.” I left the office. I was sure I would never be back.
The neurologist realized he was out of his league and arranged for me to be admitted to a psych hospital. I hesitated at first, but checked in before the five-day wait for the gun was up.
At once my life was saved and ruined. Ironically, in acting to prevent my employer from discovering my mental illness I made a choice that led to the end of my career.
Had HIPAA been around then I probably would have sought proper treatment sooner, and I probably would have kept my job and continued in my career.
As it was, I spent the next several years in and out of hospitals and worked at jobs of less and less responsibility and lower and lower income.
Information is powerful, so we seek to control the information about ourselves that is made available to others. HIPAA helps on this front. As the internet was new in 1996 and electronic medical records were rare then, HIPAA was updated in 2013 to make the regulations current in the age of big data. The regulations should continuously be monitored, tightened and improved as technology changes.
HIPAA enables us to see our medical records and fully know, and influence, what our doctors write about us. Before the law this was not the case. It is interesting that while I was going through my early episodes doctors did not have to share with me information that my health insurer was legally able to share with my employer.
We should be able to reveal our experiences with mental illness on our own terms, if we care to reveal them at all. The right to tell our stories certainly shouldn’t be left to health insurance companies. Privacy is that important.
It’s good to have regulations in place that help us present the best self we can be to our employers without being damaged by preconceptions, misinformation or stigma.
Here HIPAA can help.