CHLP and Coalition Partners Ask HHS to Reverse Plan to Track PrEP Users

On February 22, CHLP together with partners at EPIC, PWN-USA, PrEP4All, and Patient Privacy Rights authored an advocacy letter to the Department of Health and Human Services (HHS) in opposition to its plan to track PrEP users.

The agency plans to create a database to track participants in a program that distributes Pre-Exposure Prophylaxis (PrEP) to people at high risk of contracting HIV. The database would collect and store patient names, personal information, records of HIV tests, race, gender, and sexual orientation. The request for this unprecedented tracking comes from PrEP manufacturer Gilead Pharmaceuticals. 

The comments from the coalition highlight how the database would create privacy and safety risks and increase the oppression of already marginalized populations, including Black, Brown, and LGBTQ+ people, undocumented immigrants, and low-income people. The coalition also argued that the planned database runs contrary to HIV policy, fails to implement established best practices for medication distribution programs, and was implemented without consulting either impacted communities or relevant experts.

PWN created an online action form so that individuals can register their opposition to the unnecessary and overly-broad surveillance of a PrEP database, which would primarily further Gilead Sciences' corporate interests with no public health benefit.