(April 26, 2013) A curious thing happened at today’s House subcommittee hearing on whether HIPAA helps or hinders patient care and public safety.
Essentially everyone who testified – from a federal civil rights official to heartbroken family members – agreed that HIPAA is getting in the way of treatment of those with the most severe mental illnesses and other psychiatric conditions, including dementia in the elderly.
And they all agreed on one of the reasons why: The privacy rule that medical providers wield like a missile defense shield to keep family members and caregivers in the dark about loved ones in psychiatric care is being widely “misinterpreted and overinterpreted,” in the words of Rep. Tim Murphy, chair of the House Subcommittee on Oversight and Investigations.
The witnesses all agreed that medical providers typically want to talk to family members but don’t because they feel their lips are sealed by Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule and fear punishment.
Experts on the law testified the law doesn’t require this. To correct the commonplace misunderstanding, the federal Office of Civil Rights published a “message to our nation’s health care providers” on January 15 as a heads up that it’s okay to “disclose necessary information about a patient to law enforcement, family members of the patient, or other persons, when you believe the patient presents a serious danger to himself or other people.”
Universally correcting this misconception would be a start, but those of us who live with persistent and severe mental illness know disclosure in the face of dangerousness doesn’t go far enough – and so did several of the committee members.
“The federal government is totally divorced from the reality of an emergency room physician at 3 o’clock in the morning,” declared an openly skeptical Rep. Bill Cassidy (LA), who is a physician.
Rep. Murphy wanted to know whether anosognosia (lack of insight into illness) in deciding when disclosure is in a patient’s best interest.
Cassidy was more blunt. “What if a patient is not lucid?” he asked. “They think there are black helicopters circulating and their mother is the pilot of one of them?”
Family members like Ed Kelly and Gregg Wolfe – fathers who have battled unsuccessfully to help their mentally ill sons get and stay in treatment – who testified know “what if.” They are shut out, their loved ones don’t get the treatment they need, and everyone suffers.
In his summation, Rep. Murphy told the audience, “Not since John F. Kennedy have we had such a focus on mental health in this country.”
The hearing was over, but examination of whether HIPAA is interfering with patient care is not. Members of the Oversight and Investigations subcommittee whose purview HIPAA comes under are listed here. Let them know how HIPAA has affected the care and recovery of your loved one. I will be.
DORIS A. FULLER
Executive director
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