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Michael Petruzzelli

, National Council for Mental Wellbeing

National Council Members Highlight Staff Briefing on HIPAA Appropriation

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On Thursday, the Mental Health Liaison Group (MHLG) hosted a briefing for congressional staff on the need for more and clearer information regarding health information privacy laws, including the Health Information Portability and Accountability Act (HIPAA). The briefing brought together providers, consumers and family members to share stories about their interactions with health privacy laws, and in particular, to advocate for funding of the Compassionate Communication of HIPAA provisions authorized in the 21st Century Cures Act of 2016. The National Council is a leading and founding member of the MHLG and was pleased to have two members participate on the panel.


Held in partnership with Congresswoman Doris Matsui (D-CA), Thursday’s briefing highlighted the need to fully fund the $2 million “Compassionate Communication of HIPAA” program in the FY 2019 appropriations process. Authored by the Congresswoman, the provisions directed the Department of Health and Human Services to issue clarifying guidance on HIPAA (issued in December 2017) as well as disseminate training of health professionals, clinics, consumers and families on what can be appropriately shared. Each panelist shared experiences and stories of how unclear and misunderstood rights and responsibilities have hindered access and quality of care for those in their community.

The panel consisted of providers, consumers and family members sharing their stories and their experiences with health privacy laws. Each speaker spoke both of the progress that has been made recently but highlighted that there are great accomplishments still yet to be achieved. The panel included: National Council Board Member Cari Guthrie Cho, President and CEO of Cornerstone Montgomery in Maryland; Lenore Gilbert, HIM Administrator and Privacy Officer at Uplift Family Services in California – a National Council member – and Johanna Kandel, President and CEO of The Alliance for Eating Disorders Awareness in Florida.


Sharing a client success story about a man named James, Ms. Guthrie Cho said, “If there could be some guidance on how families can be more engaged through HIPAA it would be incredibly helpful.  Not all stories end like James’ and there is more we can do to improve. With clearer and simpler guidance patients, providers, and family members have a better chance to engage in the treatment and recovery,’ she continued. “This is why we are urging Congress to include the Compassionate Communication program in FY 2019 appropriations – a set of guidelines that Congress has already authorized and agreed would benefit providers, patients, and family members but has not yet funded. It is the logical thing to do, it is the right thing to do.”