Members of Congress listened to tales of tragedy and shared personal stories of family members who had mental illness as they picked apart Rep. Tim Murphy's (R-Pa.) mental healthcare reform bill during an almost three-hour hearing before the House Energy and Commerce's health subcommittee Tuesday.
They also clearly lacked consensus on what health information the federal privacy law allows providers to disclose to patients' family and caregivers.
Murphy, a psychologist who chairs the House Energy & Commerce Committee's oversight and investigations subcommittee, presented the first version of a bill called the Helping Families in Mental Health Crisis Act after the school shootings in Newtown, Conn.
This new version expands mental health services and includes a new HHS leadership post, assistant secretary for mental health and substance-abuse disorders, and establishes a national mental health policy laboratory to develop new models of care.
Murphy says it also addresses concerns that the Health Insurance Portability and Accountability Act keeps family members and caregivers from receiving much-needed information about a patient's treatment and blocks the integration of mental health and medical care. Murphy's bill would loosen these restrictions if six conditions are met.
These include: The information disclosed is limited to topics such as diagnosis, treatment plans, scheduled appointments, and medication-related instructions; disclosure is necessary to protect the health safety of the patient or the public; if it is necessary for the continuity of treatment; and the absence of disclosure could lead to a worsening prognosis.
Paul Gionfriddo, president and CEO of Mental Health America, said his organization supports changing the HIPAA privacy rule, but suggested this “super authorization” was so difficult that many providers would not even try to meet the requirements.
Rep. Doris Matsui (D-Calif.) said amending HIPAA is not necessary and has a bill of her own that would clarify what information can be shared with families.
“I heard horror stories from patients, families, providers about what happened when providers could not communicate with caregivers and information wasn't shared,” Matsui said. “I hear from providers and families alike and the mantra: I couldn't share because of HIPAA. However, the language of the HIPAA law doesn't prevent information sharing in 99% of the stories I hear.”
Matsui argued that “changing HIPAA won't fix anything” because the root problem was awareness of what is and isn't allowed under the law.
Matsui's points were both countered and reinforced by the testimony of Creigh Deeds, a Democratic state senator from Virginia and former candidate for governor, whose 24-year-old son stabbed and slashed him with a knife in November 2013 before taking his own life.
“HIPAA prevented me from accessing the information I needed to keep him safe and help him towards recovery,” Deeds told the panel. “Even though I was the one who cared for him, fed him, housed him, transported him, insured him, I was not privy to any information that could clarify for me his behaviors, his treatment plan, and symptoms to be vigilant about.”
There was much discussion about how lack of mental health funding has resulted in persons with behavioral health problems ending up in the criminal justice system. Gionfriddo suggested this may be an area where money could be found to pay for Murphy's initiatives.
“If you want to find offsets, please look to our jails and prisons,” Gionfriddo said. “That's where we sent the funding we need for mental health services today.”
Murphy stressed the need for the bill to be budget neutral which caused some friction as some new programs he proposed would be financed by cutting the funding for existing programs such as the Substance Abuse and Mental Health Services Administration, or SAMHSA.
Mary Jean Billingsley, with the National Disability Rights Network, said her son's wellbeing had improved under Protection and Advocacy for Individuals with Mental Illness programs administered by SAMSHA. Murphy's bill would not allow groups receiving PAIMI funds to lobby on behalf of mental healthcare patients and would restrict their activities to “focus exclusively on safeguarding rights to be free from abuse and neglect.”
