WASHINGTON, D.C. --- The wife of the late Ed Thomas started her testimony before Congress in a simple and direct fashion.
“My name is Jan Thomas and the story I have to tell is a nightmare that could have been prevented. My life has not been the same since this tragedy occurred and it changed the lives of my entire family and my community,” she said Friday.
Thomas was speaking about the murder of her husband four years ago as she testified about flaws in the privacy aspects of the Health Information Portability and Accountability Act.
Mark Becker was released from Covenant Medical Center less than 24 hours before he walked into a makeshift gym at Aplington-Parkersburg High School and gunned down Thomas in front of two dozen students.
Law enforcement were not notified he had been released after his psychological exam at the hospital.
Thomas blamed HIPAA for causing crucial information to not be released to law enforcement or Becker’s parents. Covenant officials said at the time that law enforcement did not tell them they needed to be informed when Becker was released.
Thomas’ story and those of two other parents were told to the U.S. House Oversight and Investigation subcommittee of the Energy and Commerce Committee. That group was conducting a hearing titled “Does HIPAA help or hinder patient care and public safety?”
Thomas testified following an invitation from committee member Rep. Bruce Braley.
While Thomas spoke about public safety problems with HIPAA disclosure, the other two parents testified about their inability to get medical information about their children.
One, Gregg Wolfe, of New Jersey, told of how his son died of another heroin overdose. The other, Edward Kelley, of Maryland, spoke of the problems they’ve encountered trying to help with treatment of their son, a paranoid schizophrenic.
Experts at the hearing testified that the actual language of HIPAA already has exceptions that allow medical information to be shared in cases of an imminent threat and also with family, so long as the patient doesn’t request it not be shared and meets conditions to be able to deny access.
However, they say the act is frequently misinterpreted by medical facilities, often in ways that restrict access to information for fear of privacy lawsuits.
“I think it’s abundantly clear from the testimony we’ve heard today that HIPAA is badly mangled in terms of how people interpret it and (are) using it frequently as a shield not to disclose info or because they fear liability, which frankly is not anywhere in HIPAA,” said Deven McGraw, a privacy advocate and director of the Health Privacy Project at the Center for Democracy and Technology.
“For people to blame this on HIPAA is incredibly frustrating,” he added.
Thomas said even Becker’s parents did not know he had been released until Becker called later in the day.
Becker had been brought to the hospital for evaluation after he had threatened a man in rural Cedar Falls and damaged his garage, then led police on a car chase.
After Ed Thomas was shot, the Iowa legislature passed a law that made it clear law enforcement had a right to know when a mental health patient was released if they asked for that information.
However, the Congressional hearing Friday took a broader view.
“How do we get to the point where we are protecting the patients privacy and at the same time making sure that we aren’t blocking the disclosure of information that can protect the public?” Braley asked.
Leon Rodriguez, director of the Office of Civil Rights in the Department of Health and Human Services, said there is more work to do in helping provide information about HIPAA to health care providers and the public, a stance that was also advocated by the three parents who testified and McGraw.
Improving the HIPAA law or it’s understanding won’t bring Ed Thomas back, but Jan Thomas pleaded with the committee to work on it for the sake of public safety.
“So I would ask you is the privacy of one individual more sacred than a life? Is it more important than the welfare of our general public?" Thomas asked.
"Is it more important than allowing our law enforcement to know when a potentially dangerous offender is being released back into the very community they risk their lives every day to protect?” she added.