October 19, 2022
PACHA Approves Resolution Regarding Use of Molecular HIV Surveillance
This week, the Presidential Advisory Council on HIV/AIDS (PACHA) hosted a full council meeting to discuss and vote on the Council’s Molecular HIV Surveillance and Cluster Detection and Response Resolution. As background, PACHA exists to provide “advice, information and recommendations” to the Secretary of Health and Human Services regarding HIV-related programs, policies and research.
The Council had created a workgroup dedicated to exploring the use of molecular surveillance. This workgroup was developed in response to community concern that molecular surveillance does not adequately protect patient privacy as well as the concern that CDC does not consider state-level HIV criminalization laws and the potential misuse of surveillance data at the state and local health department level when funding such activities. The workgroup drafted a resolution that could potentially overcome some of these vulnerabilities.
Readers may recall that in 2018 the federal government first began to require that states and jurisdictions scale up the use of molecular surveillance technologies and activities as a condition of HIV prevention funding. By 2019, molecular HIV surveillance was named one of the core pillars of the federal Ending the HIV Epidemic initiative. People with HIV sounded the alarm on the government’s reliance on data that could potentially identify individuals, as well as the ongoing state criminalization laws potentially affecting people with HIV in some states and jurisdictions.
CDC has responded by saying that there is no evidence that such data has been used in any criminal proceedings and that such surveillance is critical to a nimble response to new HIV clusters. The resolution calls for greater informed consent processes that would allow the patient to make the determination of how their information gets utilized.
PACHA voted unanimously in favor of the resolution which recommends that CDC direct jurisdictions funded for cluster detection and response activities to adapt their implementation to reflect local conditions, including health data privacy protections and laws criminalizing people with HIV. The draft resolution can be viewed here.