The #familiesrightsmatter2 movement is calling for reforms to the Health Insurance Portability and Accountability Act (HIPAA) privacy rules that currently restrict communication between healthcare providers and families when a loved one is experiencing a mental health crisis. The advocacy group points to the case of Elliot Rodger, whose documented mental health struggles preceded the 2014 Isla Vista tragedy, as an example of how communication gaps can contribute to preventable harm.
National data reveals a rapidly escalating mental health emergency in the United States. 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 typically occur when individuals experience sudden psychological distress or acute mental health 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, with nationally representative studies documenting widespread crisis-level symptoms across demographic groups. Families often recognize warning signs first, yet current HIPAA regulations frequently 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 emphasizes that HIPAA reform is not about reducing privacy protections but about saving lives through timely intervention.
The advocacy group 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 during later negotiations. Advocates argue that revisiting these provisions—supported by lawmakers including Senator Elizabeth Warren—could strengthen crisis response and prevent avoidable tragedies.
With millions of Americans experiencing crisis-level symptoms and emergency departments serving as frontline responders for mental health emergencies, even modest reforms could enable earlier intervention. The movement's national petition calls on Congress to revisit the intent of H.R. 2646 and enact reforms that balance privacy with safety, ensuring families are not powerless when a loved one is in danger. More information about the movement can be found at https://familiesrightsmatter2.shelmireministries.org.
