Subcommittee Furthers Examination of Mental Health System with Look at Federal Privacy Laws

April 26, 2013

WASHINGTON, DC – The Energy and Commerce Subcommittee on Oversight and Investigations, chaired by Rep. Tim Murphy (R-PA), today continued its post-Newtown examination of the nation’s mental health system, focusing on the Health Insurance Portability and Accountability Act (HIPAA) and how its application can help or hinder patient care and public safety. Members expressed concern that the privacy rule may interfere with the timely and continuous flow of health information between health care providers, patients, and families, thereby impeding patient care, and in some cases, public safety.

"HIPAA, as initially conceived and enacted, reflected an effort to replace a patchwork of state laws and regulations impacting the confidentiality of medical information,” said Murphy. “From the start, HIPAA was accompanied by considerable anxiety on the part of providers, or the ‘covered entities.’ Fearful of new penalties for violating HIPAA, doctors and nurses were refusing to even talk about a patient’s illness with caretakers, all of whom were spouses, siblings, or those managing the affairs of their elderly parent.

“Our goal is to peel away the numerous layers of misinformation surrounding HIPAA so that we can ensure patients are getting the right treatment and the public is kept safe. Sometimes this may involve communication with the parents or family of a patient, who often possess unique insight into their loved one’s condition. At other times it involves communication with law enforcement, so providers take the right steps to report threats of violence."

Leon Rodriguez, Director of the Office for Civil Rights at HHS, explained the ways in which HIPAA allows medical providers to communicate with family, friends, and caretakers about the condition, care, or general information of a patient. Examples include a patient who is incapacitated or has explicitly authorized the sharing of information with these people. However, he said, “Historically, providers often have been reluctant to share information with patients’ friends and family members. Although HIPAA provides the avenues I described for disclosures to family members and friends, there may be other professional ethical obligations, Sstate confidentiality laws, or internal policies of a health care organization, that affect whether health care providers are willing or able to share patients’ personal health information with their families, friends, or others.”

Three witnesses shared emotional personal experiences, explaining how the HIPAA rule has made it nearly impossible to care for their family members.

Gregg Wolfe, whose 21 year-old son Justin passed away from a heroin overdose in December 2012, discussed how he and his wife were kept in the dark about Justin’s addictions and treatment due to the HIPAA rule, and that he and his wife believe they could have intervened to help their son had they had access to the necessary information. Wolfe said, “Parents are unable to operate effectively in a vacuum, without knowledge by health care professionals about our drug-induced, or mentally disabled, legally aged children who do not have the wherewithal to reason or think rationally for themselves. The absence of rationale may result in life-threatening decisions or, as in my son’s case, premature death.”

Edward Kelley, whose son is a paranoid schizophrenic, added that he and his wife have been stifled in their attempts to care for, and at times locate, their son due to HIPAA’s privacy rules. He said, “Communities and people are affected by lack of proper treatment when we families cannot help their loved ones: stress and loss of jobs; damage to the brain of the loved one; damage to the loved one’s heart or nervous system; homelessness; substance abuse; victimization; abuse; medical condition decline; isolation; fear; desperation; suicide. And these can, and are, the consequences of not allowing those who want to help their loved ones – help their loved ones – because HIPAA says we cannot.”

Finally, Jan Thomas detailed the way in which HIPAA allowed for a mentally-ill individual to check himself out of a hospital, without any notification to the law enforcement who had brought him there, which eventually led to her husband’s murder. She explained that in some cases, it is necessary for family to be informed of a condition so proper care can be given and safety of others can be protected. She said, “Adults with severe mental illnesses are not always able to make good choices for themselves concerning their treatment or their actions. They may need help of a family member or other responsible parties to be sure they receive required treatment. They may need outsiders to keep them and others out of harm’s way.”