A demand for bodily autonomy—and data privacy—for people with HIV

When Michael Scarce, an author, researcher and activist living with HIV, learned about molecular HIV surveillance in 2014, he was devastated by what he discovered.

“I was horrified because my blood was being sequenced to identify sexual partners,” he said. As a result, he delayed tests that he needed to be recertified for assistance under the Ryan White CARE Act and fell out of care, losing access to his HIV and mental health medications.

“I went into a spiral it took two years to come out of,” Scarce said. “I felt fundamentally betrayed by the people who were supposed to be helping me.”

His concerns about the privacy of his health information led to his involvement with the Molecular HIV Surveillance Work Group and its successor, the HIV Bodily Autonomy, Surveillance, and Informed Consent (HIV BASIC) Collective, which has just put out a call for protection of health information and an end to criminalization of HIV and other health conditions.

“If surveillance is not built on the core principles of informed consent, bodily autonomy and sufficient privacy protections, it increases the risk that people’s private information will be publicly exposed or used against them,” reads HIV BASIC’s Consensus Statement. “Those risks perpetuate fear and mistrust. Thus, these real dangers directly threaten the entire public health ecosystem by undermining trust from the people that system serves.”

“This is a really important time to be launching this initiative,” said Amir Sadeghi, policy and advocacy manager at the Center for HIV Law and Policy (CHLP). It’s a time of threats to the privacy of health data, cuts to public health funding and politicized attacks on people living with HIV, in addition to those seeking reproductive healthcare or gender-affirming care.

Molecular HIV surveillance, one of the focuses of HIV BASIC, has been around since the early 2000s, but developments in the past few years have increased concern about it. Molecular surveillance for any disease involves genetic analysis to gather information and address outbreaks. When people receive a new HIV diagnosis or change drug regimens, their provider will typically order a drug resistance test, looking for genetic mutations to the virus that might make it resistant. 

The information can then be used in molecular HIV surveillance, without the patient’s consent or knowledge, to track their sexual and social networks. In 2018, the Centers for Disease Control and Prevention (CDC) made molecular HIV surveillance a condition for receiving federal funding for HIV prevention. Grant recipients provide the information to local public health departments, which in turn provide it to the CDC. The requirement was added without any buy-in from people living with HIV, Sadeghi said. 

“That part of the lab results was not explained to individuals so that they could opt out,” said Melanie Reese, executive director of Older Women Embracing Live (OWEL) and co-facilitator of HIV BASIC, along with Scarce. “So they used that information for cluster detection, and that could lead to health status criminalization and erosion of privacy, consent and bodily autonomy.”

In 2022, during Joe Biden’s presidency, the Presidential Advisory Council on HIV/AIDS (PACHA) called on the CDC to advise health departments to get input from people living with HIV and other “key stakeholders” as to whether molecular HIV surveillance should be implemented in their jurisdiction and how to implement it in a way that does not harm the population. The council also said the data should not be available to law enforcement. The CDC largely ignored the recommendations, Sadeghi said.

The CDC argues that this information has been “de-identified”—there are no data that could identify a specific individual. But it can easily be re-identified, Sadeghi said, using voter registration rolls, addresses and other publicly available data.

Reese, like Scarce, was active in the Molecular HIV Surveillance Work Group, but the topic “seemed too scientific and above people’s heads,” she said. So this year it became HIV BASIC, with a more expansive mission and a more accessible message, something for which Reese credits Scarce. Other members of the HIV BASIC alliance are CHLP, Positive Women’s Network-USA (PWN-USA), The Sero Project, Transgender Law Center and HIV Justice Network.

“I’m a woman living with HIV, and I have lots of colleagues and community members that are too, and also those who are vulnerable to acquiring HIV,” Reese said. “And I don’t want them to face criminal charges for their health status. I want them to be aware that their health status is shared and that you want a say in who is getting your health information.”

HIV BASIC seeks a voice for people living with HIV in how their data are used, Sadeghi said. “Data can be and is extremely important to advancing equity,” he said. For instance, to address racism and homophobia, it’s crucial to know what groups of people are disproportionately affected by HIV, he said. “At the same time, collecting more information than necessary by definition puts people at risk,” he said. “We need to be mindful of state power here.”

The Health Insurance Portability and Accountability Act (HIPAA), enacted in 1996, provides some protection for privacy of health information, but it has exemptions, as do state health privacy laws. HIPAA’s privacy rule allows covered entities to disclose health information to law enforcement; the request usually comes through a subpoena or court order. They are not required to comply, but they may face penalties if they don’t. Also, some HIV service organizations, such as those providing housing or case management but not direct medical care, may not be covered by HIPAA and the privacy rule.

Some states allow or even force HIV status to be released to law enforcement, Sadeghi noted, while other states forbid it. HIV BASIC wants to see a strong federal privacy law as well as state laws that would prohibit release of any health information in criminal cases, civil cases and immigration proceedings, he said. 

There has been some progress toward ending HIV criminalization, he said, but it’s still a problem. Thirty-two states still have laws that criminalize HIV exposure and transmission, while 28 have laws that allow for sentencing enhancements based on a person’s knowledge of their HIV status, he said—something that discourages people from being tested for HIV.

North Dakota and Maryland repealed their HIV-specific criminalization laws in 2025, but they still have problematic laws, according to CHLP. North Dakota has a law that punishes anyone who “willfully exposes” another person to a sexually transmitted disease, while Maryland punishes failure to take “proper precautions” against exposure to an infectious disease. HIV is included under the definition of “sexually transmitted disease” and “infectious disease” respectively.

HIV criminalization laws are disproportionately used against Black and Brown people, Sadeghi said. For instance, Nushawn Williams, a Black man in upstate New York, has been detained indefinitely, long beyond his original sentence, for having sex with underage girls while HIV-positive. He was 19 when he was charged. State officials engaged in “an extremely racist smear campaign” against him and “used his HIV status to paint him as a monster,” Sadeghi said. In 2010, when Williams completed his original sentence of 12 years for statutory rape and reckless endangerment, Andrew Cuomo, then New York’s attorney general, filed a petition to keep him confined. He remains in what the state calls a “secure psychiatric facility” and Sadeghi calls “a prison in all but name.”

Reese knows several people who’ve been harmed by criminalization laws, she said. Some have taken a plea deal after being advised by a public defender who doesn’t explain what a plea deal is, and they have to register as sex offenders, she said. “That alters their lives so much,” Reese said. “Because when you’re on the sex registry, you can’t live near a church, a school, a library, anywhere where kids might go. You can’t live around them, and your name has to be given to the neighbors where you are going to live, and it’s humiliating.”

HIV-related arrests and prosecutions are not trending downwards, Sadeghi said. In some states they’re level, in others increasing, according to research from the Williams Institute. Most of the state criminalization laws don’t have provisions recognizing that a person whose HIV is suppressed to an undetectable level can’t transmit the virus through sex, but he and HIV BASIC aren’t interested in creating a “viral divide,” he noted. “We want to end the criminalization of all people living with HIV, not just the people who are virally suppressed,” he said.

The Trump administration’s attacks on healthcare funding, plus its opposition to gender-affirming care and abortion, have made this a crucial time to address privacy, discrimination and criminalization, HIV BASIC’s leaders point out. “That climate and context of politicized attacks were all very top of mind for us when we decided this was the year we really needed to come together,” Sadeghi said.

Reese, who calls the administration a “regime,” said it doesn’t value Black and Brown people, women of any race, LGBTQ+ people or anyone living with HIV. Plus there are still lower-level politicians tapping into HIV stigma, she said, with suggestions that people with HIV be isolated or tattooed. “That mindset is still alive and well,” she said.

Political organizing is part of the key to fighting back, Reese said. “It’s very important to do the canvassing, phone banking, going to town halls, stand up and be heard,” she said. “I was taught 20 years ago if there’s a mic, sit near the mic and stand up and speak right into it when you hear something that is not correct or you have an opportunity to tell them what should happen.” She advises “informed voting,” not voting based on party or popularity.

But also, “we need to have people living with HIV in meaningful leadership positions at the decision-making tables,” Reese added. “They need to be leading those efforts and not just receive the results of those efforts, because we wouldn't have let molecular HIV surveillance roll out the way that it did. We wouldn’t have had cluster detection response roll out the way it did. We who are living with HIV are experts of living with HIV and most things related to HIV, and we shouldn’t have to bear the brunt of the decisions of people who are not living with HIV.”

Scarce acknowledges that putting more Democrats in Congress could help people living with HIV and other marginalized populations, but it wouldn’t solve all the problems, as both Democrats and Republicans are beholden to big donors. “We need some real fundamental change that transcends political parties,” he said. People living with HIV need to “organize, organize, organize” and “lean into intersectionality.”

HIV BASIC is planning a series of quarterly webinars. The webinars will cover, among other things, “the importance of meaningful leadership for people living with HIV, and how subject matter experts need to be used in all phases of decision-making,” Reese said. The first webinar will be held August 10 at 3 p.m. ET, featuring a discussion of the Consensus Statement and laying out the next steps. Register here.