In the world of HIV, there’s always something for advocates and activists to worry about. Take 2020 alone, for example: Not only did we have to worry that people living with HIV were getting meds, proper care, and other needs met amid the restrictions of the COVID-19 pandemic, we also had to worry, on a more macro level, that COVID was distracting federal, state, and local officials alike from moving forward on plans to end the HIV epidemic entirely by 2030 (now revised to 2025 under the incoming Biden administration).
Well, guess what? There’s something else for us folks living with HIV and our advocates to worry about, and many of us haven’t even heard of it. In fact, it’s something that the community has already protested, including (memorably!) at the 2019 United States Conference on AIDS (USCA), when people living with HIV and their allies stormed the stage to thrust the issue front and center while MSNBC’s Joy Reid was interviewing Robert Redfield, M.D., head of the Centers for Disease Control and Prevention (CDC).
It’s called molecular HIV surveillance (MHS for short). It’s when health departments take blood samples of HIV that they already have and sequence them (basically break them down) into the tiniest components to look for structural similarities in HIV samples from people in a certain community, neighborhood, town, or city.
By doing this—basically by seeing how HIV mutates in tiny ways from one person to the next, to the next, and so on—they can identify possible transmission patterns, or clusters, that theoretically can lead them into a certain community or social network, such as drug users or sex workers, to try to stop the spread.
It’s a bit like if you could do contact tracing—calling people up to tell them they might have been exposed to HIV and to urge them to be tested—if you had not just hearsay and word-of-mouth but hard molecular evidence that there appeared to be some kind of transmission pattern taking place among a group of people: clues that A gave HIV to B, who gave it to C and D, who gave it to E, F, and G, and so on, and so on.
Sounds great, right? Well, it is, strictly from a scientific and public health point of view. But HIV advocates are deeply worried that, in a country where roughly 32 states still have laws that criminalize people with HIV for not disclosing their status to sex partners—even if, as is often the case, they are undetectable on meds and unable to transmit—MHS could be used in criminal cases. Prosecutors could, say, subpoena lab samples to make the case that A did, in fact, very likely pass HIV to B, based on the molecular similarity of their viruses.
“It’s really important that we address this,” says Andrew Spieldenner, Ph.D., a communications professor at California State University San Marcos who is also the vice chair of the U.S. People Living with HIV Caucus, which has been sounding the alarm about MHS the past few years. “As people living with HIV, we know the cost of not having control over our own data, of having our bodies used as research, and we have the right to have control of that.”
To be clear, according to Spieldenner and other sources following MHS closely, there appears to be no evidence yet that MHS has been used to try to criminalize anyone. But, says Spieldenner, that might be because states that are furthest along with using MHS—such as California, New York, and Massachusetts—also have high levels of cultural competency in terms of doing HIV public health in a way that is sensitive to the safety and privacy of people living with HIV themselves. (Those three states also have no HIV-specific criminal laws or sentencing enhancements for people with HIV.)
States not far along with MHS—who are nonetheless being encouraged by the federal CDC to use it more—also overlap with states with the biggest histories of HIV criminalization. Take Missouri, for instance, which has arrested nearly 600 people on HIV charges in the past 29 years under an HIV-specific criminal law—and where health officials are required to turn over health data to law enforcement in such cases.
Worries Beyond Criminalization
But advocates say they also have issues with things like MHS being done without patients’ informed consent, meaning that people with HIV would not know that their HIV molecular profiles, ordinarily used to help determine the best treatment, are being used to detect clusters or even substantiate criminality. Some public health officials said that getting consent from every person with HIV for such purposes is too burdensome and would defeat their goals.
But Matthew Rose, head of U.S. policy and advocacy at Health GAP, says that’s ridiculous. “You want trust? Well, here’s what the community wants you to do to earn their trust. Especially for communities of color, where historically you have taken things from our bodies, then do things to them and make inferences about us as a result of them.” He points to the now famous story of Henrietta Lacks, a Black woman whose cancer cells, unbeknownst to her, became, in the 1950s and beyond, one of the most important cell lines in medical research.
Just as in clinical trials, says Rose, scientists should seek new and specific consent from people with HIV if they want to use their lab samples for anything other than the original, stated purpose. “Just because I said you could do my [HIV] genotype does not mean I said you can run my blood against everybody else’s genotype. It’s your job as the doctor to explain this to me and ask my permission.”
But Spieldenner says that health departments anonymize lab data before they send it on for analysis to CDC, which then sends it back to localities alerting them that a cluster might exist in their area. “So I’m not sure exactly where informed consent would happen,” he says. “The only parties who have a choice as to do informed consent are the individual health departments, and some are just saying they’re not going to do it.”
Beyond the issues of criminalization and consent, says Naina Khanna, executive director of Positive Women’s Network, “We’re also concerned about cluster-tracing investigations, which can perpetuate HIV stigma as well as compromise people’s safety, employment, housing, and survival.”
Spieldenner points to a 2019 Seattle public health announcement that MHS uncovered an HIV cluster of men experiencing homelessness and female sex workers who hung out in a very specific part of town, potentially making them findable, even if it did not name them.
“When you identify an HIV cluster, often it’s among the most marginalized,” he says.
But then again, MHS can have public health benefits. “It’s a great way for us to figure out if a cluster is actually happening somewhere,” says Rose, especially if it’s a drug-use-driven cluster, “because they can move so much faster than sex-driven clusters.”
In Massachusetts, for example, MHS uncovered an HIV cluster among urban drug users, which led to an expansion of needle-exchange services. In Texas, MHS uncovered an HIV cluster among Latinx gay men that, says Spieldenner, led to an increase in anti-stigma and HIV testing efforts.
What Should Happen Going Forward?
Given the concerns, should MHS be used at all? Right now, advocates are asking the CDC and state and local health departments to hold off on it until serious meetings with advocates from affected communities can take place to talk through how it’s used and what its limitations should be. They’re also asking that MHS be removed as one of the four key “pillars” of the federal Ending the HIV Epidemic (EHE) initiative that is being implemented, at various speeds, in states and counties nationwide.
“I think there needs to be a critical review with advocates in the room, to put some sunlight into this process,” says Rose. “If you’re not going to flat-out stop using it, you need to at least tell us what you’re doing to address our concerns.”
Spieldenner points out that the Netherlands and other countries have strong firewalls between health surveillance data and law enforcement. “That’s what we need here, but everyone in the U.S. is so obsessed with law enforcement having access to everything,” he says. “We need the CDC to force health departments to do that level of community engagement where they are thinking about [vulnerable populations like] immigrants, sex workers, and transgender people. They need to build trust so that when a disease intervention specialist comes to people’s doors, they’re not like, ‘Why are you after me?’ And people need to know their rights.”
Spieldenner says he is somewhat optimistic about CDC doing the right thing, even as he wonders aloud if MHS is needed at all, when we have good old-fashioned contact tracing. “We have some strong allies like [incoming CDC head of HIV prevention] Demetre Daskalakis who want to help build in the protections, so I’ve got hope that we’ll be able to meet with CDC about this in the first quarter or maybe half of 2021.”
And Rose points out that officials can look to places like Houston, where public health leaders promptly “started having community meetings about what MHS rollout would look like, how they protect and de-identity [anonymize] data and make sure it won’t be shared with law enforcement. They said that their health department would indeed fight a subpoena [from law enforcement demanding data].”
But with COVID currently raging and the CDC suspended between the Trump and Biden administrations, everything is a bit up in the air for the moment on the issue, which can be tracked via the U.S. People Living with HIV Caucus (which actually has posted a long webinar on the topic from 2019) and the Positive Women’s Network.
Khanna says that incoming CDC head Rochelle Walensky, M.D., M.P.H.—a longtime HIV clinician and researcher generally seen, like Daskalakis, as an ally to the HIV community—will have to make data security, data sharing, and privacy related to MHS a priority.
“We need to make sure that [Walensky] really understands the dangers that MHS poses for our communities,” she says, “and that surveillance and policing related to HIV, not to mention COVID, will always hurt Black and brown communities disproportionately.”