US: Presidential Advisory Council on HIV/AIDS (PACHA) issues resolution on Molecular HIV Surveillance and Cluster Detection

PACHA Unanimously Approves Resolution to Create Safeguards for People Living with HIV

PACHA UNANIMOUSLY APPROVES RESOLUTION TO CREATE SAFEGUARDS FOR PEOPLE LIVING WITH HIV

Directs CDC to Adapt Surveillance Activities to Better Protect Human Rights for Vulnerable Communities

October 18, 2022PWN commends and applauds the Presidential Advisory Council on HIV/AIDS (PACHA) for their leadership in unanimously passing an historic resolution that is critical to protecting the human rights and dignity of people living with HIV, the Resolution on Molecular HIV Surveillance and Cluster Detection Response.

This resolution responds to concerns raised by public health officials and community advocates, especially networks of people living with HIV and human rights and data privacy experts, and urges the Centers for Disease Control and Prevention (CDC) to change their guidance on cluster detection and response (CDR) activities. Specifically, the resolution clearly and forcefully recommends that the CDC direct jurisdictions funded for such activities adapt their implementation of CDR to account for local conditions, including health data privacy protections and laws criminalizing people living with HIV.

“Basically, PACHA told the CDC that local context matters: if jurisdictions do not have adequate safeguards to protect the human rights and privacy of people living with HIV, the CDC must allow for a moratorium on CDR activities,” said Kelly Flannery, policy director at Positive Women’s Network-USA. “There is still room to create more robust protections for people living with HIV, such as informed consent standards. Going forward, we must ensure that there are no further developments and integration of new public health surveillance technologies impacting people living with HIV absent community input, oversight, and specifically involvement from networks of PLHIV.”

In the resolution, PACHA also urged CDC to work in partnership with networks of people living with HIV to create a stronger system of informed consent around the use of molecular HIV surveillance data. U.S.-based networks of PLHIV have been sounding the alarm about molecular HIV surveillance (MHS) since 2018, when the federal government first required that states and jurisdictions scale up the use of molecular surveillance technologies and activities as a condition of HIV prevention funding. By 2019, MHS was named one of the core pillars of the federal “End the HIV Epidemic” (EHE) Plan.

“As a result of massive mobilization and outcry by networks of people living with HIV and our allies, yesterday, we finally saw a response addressing community concerns,” said Venita Ray, co-executive director of Positive Women’s Network-USA. “Now it’s time for the CDC to take swift action to implement the recommendations from PACHA and networks of PLHIV.”

This resolution is a tremendous step forward for communities that are dually most impacted by HIV and by surveillance and policing – especially Black, Indigenous and People of Color, migrants, queer and transgender people, people who use drugs, those who work in in the sex trade, and those with the least access to quality, affordable healthcare. We are deeply appreciative to PACHA leadership and to the PACHA Stigma and Disparities Subcommittee for their tremendous efforts in response to concerns from networks of people living with HIV.

Now that it has now been unanimously approved by PACHA, what happens next will speak to the character and integrity of the CDC. Failing to implement these recommendations would represent an egregious breach of public trust. We will be closely monitoring the adoption of these important recommendations throughout the federal response.

The full PACHA resolution is available here