A national advocacy movement is calling for reforms to HIPAA privacy rules that currently restrict communication between mental health providers and families when a loved one is experiencing a crisis. The movement, #familiesrightsmatter2, argues that these communication gaps can contribute to preventable harm, pointing to cases like Elliot Rodger, whose documented mental health struggles preceded the 2014 Isla Vista tragedy.
National data underscores the urgency of addressing mental health emergencies. The Centers for Disease Control and Prevention reports that millions of Americans seek help in emergency departments each year for mental or behavioral health concerns, with ED data updated monthly to track crisis-level surges. These visits often occur during periods of sudden psychological distress or acute symptoms requiring immediate intervention.
Recent research confirms that mental health crises, including suicidal thoughts and acute psychological distress, are affecting a growing share of U.S. adults across all demographics. Families are frequently the first to recognize warning signs, yet current HIPAA regulations often prevent providers from sharing essential safety information, even when a patient poses a risk to themselves or others.
"Families are not asking for full medical records," said Leon Shelmire Jr., founder of #familiesrightsmatter2. "We are asking for the ability to intervene before a crisis becomes a tragedy. When families are shut out, lives are put at risk."
The movement highlights H.R. 2646, the Helping Families in Mental Health Crisis Act, which originally included provisions to improve communication between providers and trusted family members. Although the bill passed the House with bipartisan support, key HIPAA reforms were removed in later negotiations. Advocates argue that revisiting these provisions, supported by lawmakers including Senator Elizabeth Warren, could strengthen crisis response and prevent avoidable tragedies.
The need for reform centers on several critical points: families are often the first to notice escalating symptoms; providers may be legally restricted from sharing safety-critical information; communication failures have contributed to tragedies; and limited, safety-focused disclosures could prevent harm and save lives. The movement emphasizes that HIPAA reform is not about reducing privacy but about saving lives, particularly as millions experience crisis-level symptoms and emergency departments serve as the frontline for mental health emergencies.
With a national petition calling on Congress to revisit the intent of H.R. 2646, the movement seeks reforms that balance privacy with safety. More information about their advocacy can be found at https://familiesrightsmatter2.shelmireministries.org. Even modest reforms could enable earlier intervention and prevent tragedies that devastate families and communities, ensuring families are not powerless when a loved one is in danger.
