Comments to HHS on HIV Prevention Medication Distribution Records, CHLP et al. (2023)

In comments to the Department of Health and Human Services (HHS), EPIC, CHLP, PrEP4All, and Patient Privacy Rights urged the agency to reverse plans that would require recipients of free HIV Pre-Exposure Prophylaxis (PrEP) to submit information to a database maintained by HHS.

PrEP is a highly effective medication that prevents infection with HIV, but it is very expensive in the U.S. HHS agreed to administer a donation program by PrEP maker Gilead Pharmaceuticals that runs in parallel to another Gilead donation program, creating the claimed need for a database to avoid double dipping in both programs. The database would collect and store patient names, personal information, records of HIV tests, race, gender, sexual orientation and more. The database would be a rare and possibly unique instance of the federal government compiling a list of people receiving a particular medication, similar distribution programs are run without federal agency recordkeeping.

The coalition comments demonstrated the privacy and safety risks created by a database collecting information from vulnerable populations including LGBTQ+ individuals, Black and Brown individuals, undocumented immigrants, and low-income individuals. 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 the relevant experts.

Summary text courtesy of Epic.org.