Phil Tkacz, President of the Eastern State Hospital Cemetery Preservation Project in Lexington, Fayette County, Kentucky, is confronting the same problems with the federal HIPAA Law that many other concerned groups in the United States are dealing with concerning identification of deceased patients of former State Hospitals (Insane Asylums) and Custodial Institutions. What I find incredible is that many states will now be able to access LIVING INDIVIDUAL’S medical records (profiling) in order to comply with the new gun control legislation but the identities of patients who have been dead for over a century cannot be revealed because they lived with a mental illness, epilepsy, or developmental disability. When these folks were buried in the nineteenth century, the states and counties would not provide the money for headstones and instead marked their graves with numbers. In many cases, the cemeteries have been lost with the passage of time or we discover that the cemeteries and the graves themselves were never marked or recorded. The states spent huge amounts of tax payer dollars supporting and caring for these people while they were alive. In the nineteenth century, government agencies actually had budgets. It would have been considered an extravagance for the states and counties to also provide engraved headstones as this dependent group of human beings were considered to be the dregs of society. My question is, why is this particular group of people still being punished for illnesses over which they had no control? When will someone who knows what they are talking about at the Department of Health and Human Services come forward and explain why these people cannot be honored or remembered with dignity? And, why is this group of people being given more privacy protection than the living? Why?

ESH 1

Phil’s note along with photographs, concerns an iron coffin believed to be from the 1840s that is engraved with a name. The name cannot be revealed because of the HIPAA Law. Why would a family take the time to engrave their loved one’s coffin if they didn’t want anyone to know who that person was? What about the unfortunate individuals who were buried in thin, wooden coffins or just tossed in the dirt wrapped in a shroud? Why can’t we know who they were? Why can’t we have access to their medical records? THEY ARE DEAD AND HAVE BEEN DEAD FOR OVER A CENTURY. The federal government has no problem releasing our medical records, sending them over the internet, and allowing physicians to take home flash drives containing patient information that can be easily accessed or lost. So, what’s the problem? As citizens, we don’t know who is looking into our medical histories or why. This whole issue is ridiculous and the HIPAA Law is a joke! HHS is solely responsible for this fiasco and the stigma that they are perpetuating because no one knows how to interpret the damn law!

ESH 2

“In 2008 the state announced it would convert the Eastern State Hospital into a community college, BCTCS. At the same time, ESH would move to a new facility. Our group began meeting with all involved in order to discuss what would be done when graves were to be found on the hospital property as construction progressed. University of Kentucky Archeology attempted to do a survey of as many areas as possible to find possible graves, but found none. In January of 2011, I received a call from the state, they said 30-50 graves had been found in an area close to the entrance off Newtown Road & University of Kentucky was going to start exhuming the remains soon. Work progressed slowly due to weather, but was finished by late April 2011.

We met with the state, University of Kentucky Archeology, and others, to discuss what they had found later in 2011. The summary was, the actual number was about 170 remains of former patients had been found and that there were more in the same area but there wasn’t enough money to continue into that area. It was decided by them, that they would exhume those remains when construction got to that area. The timeline for re-burial was about 1 year and we would be kept up to date when necessary.

Fast forward to January 2012. I was told by a reliable source that there was an Iron coffin found the year before and there were photos. Also the coffin has a plaque on it with a name, unfortunately the last name is unreadable in the photo. I contacted the person we had been talking to for updates and asked why this was never mentioned to us. We were told that they kept it from the media to “preserve the dignity of the person in the coffin and to protect their privacy.” Why our group was not told was never explained though. Even the University of Kentucky said they could not release the name.

Attempts were made to have the name released but to this day we are told that the name is protected by HIPAA. A request was made to have a headstone erected over the grave where this coffin will be re-interred later this year and were told, again, that it wouldn’t be legal under HIPAA. We are still trying to find a way to have the name released, our main argument is that A) Patient privacy does not apply, and B) Common sense would tell you that having the name put on the coffin was done in case this happened and it was later exhumed.”

ESH 3