In 2019, one of America’s top public health officials went on the road, promoting an ambitious plan to slash new HIV infections by 90 percent by 2030.
“We are now on the verge of bringing an end to the AIDS epidemic as we know it in the United States,” Robert Redfield, then-director of the Centers for Disease Control and Prevention, told a Texas audience that July.
Redfield also pushed the plan at the 2019 United States Conference on AIDS in Washington, D.C., an annual meeting that draws several thousand researchers, activists, and people living with HIV. (The conference has since been renamed the U.S. Conference on HIV/AIDS.)
“We need to be disruptively innovative,” Redfield said during the opening session, which was moderated by MSNBC host Joy Reid.
In fact, one particular technological innovation, a centerpiece of the federal plan, had already disrupted the HIV community — just not in the sense Redfield meant.
As his conversation with Reid ended, chanting broke out in the hotel ballroom. A crowd mounted the stage, yelling, “You can’t end this without us.” Protestors surrounded Redfield, and their leaders grabbed a microphone. The plan was flawed, according to the activists, because it relied on a new data collection and analysis program that put them in harm’s way — something they called “molecular HIV surveillance,” and that the CDC now prefers to term “molecular analysis.”
The tool is used to identify groups of people — called clusters in public health jargon — where HIV is spreading quickly. When someone tests positive for HIV, a doctor usually orders a partial sequence of the virus’s genome to check for signs of drug resistance, and the result gives them information on which medicines will work best. But in recent years, public health officials have been analyzing the virus’s sequence data to monitor how the pathogen spreads.
The technique exploits HIV’s swift evolution: As the virus makes copies of itself, it can mutate, producing genetically distinct strains. When two people share similar strains, it suggests they are linked, directly or indirectly, by recent transmission. When routine HIV testing turns up several such cases in a short period, officials know they may be dealing with an outbreak. Public health officials say the tool helps them direct testing, prevention, and treatment efforts to where they’re needed most.
But the program is controversial within the very communities that public health officials want to reach. Back on the D.C. conference stage, activist Naina Khanna, a leader of Positive Women’s Network – USA, explained: “People living with HIV did not know this was happening, and we have not consented. We did not consent to this.” (Khanna now serves as co-executive director alongside Venita Ray.) Another concern — one acknowledged by advocates and public health officials alike — is that law enforcement might access and misuse the data in states where exposing others to HIV can carry stiff criminal penalties.
“We need to be disruptively innovative,” Redfield said.
In June, the U.S. People Living with HIV Caucus, a group of organizations and advocates, published an open letter calling the technology “a double-edged sword.” They demanded, among other things, that use of molecular surveillance stop until new protections for HIV-positive people are put in place, including assurances that data will be kept away from police and prosecutors.
The dispute stems from longstanding tensions over who gets to make decisions about the handling of HIV — public health officials or the communities that take the brunt of the virus. (The latter often overlap with already marginalized groups: Black and Latino gay and bisexual men, trans women, and people who inject drugs are particularly at-risk, and HIV hits harder in poor neighborhoods.) So far, there’s no sign of a resolution. The CDC is adamant that molecular analysis is crucial to stopping the spread of HIV, which infects more than 30,000 people in the U.S. each year. Nearly 300 clusters have been discovered with the tool since December 2015, most of which hadn’t been previously identified, according to Paul Fulton, a CDC spokesperson.
Alexa Oster, acting chief of the CDC’s HIV detection and response branch, said public health officials will work with communities to balance the risks. But public health surveillance has important benefits for local communities and the nation as a whole, she said: “Collecting that information outweighs the risk.”
U.S. public health officials track dozens of infectious diseases, tabulating cases of anthrax, rabies, and Covid-19. But surveillance of HIV has always been especially fraught. HIV often spreads through penetrative sex or needle-sharing, and many of the first publicly reported AIDS cases in the early 1980s appeared among gay men, Haitian immigrants, and people who used heroin. Stigma — fueled by homophobia and racism — was rampant.
It didn’t help that a fearful public knew very little about how the disease spread. In 1983, a New York City co-op tried to evict a doctor — one of the few who would see AIDS patients — simply because he treated people in its building. Adults with AIDS lost homes and jobs, while a 13-year-old with hemophilia, who contracted HIV through a blood transfusion, was blocked from attending school in Indiana.
The stigma complicated public health efforts. In the epidemic’s early years, activists objected to HIV surveillance programs that would store names in government databases, arguing that people’s privacy could be compromised. This claim was bolstered by horrifying stories: In 1996, for example, a Florida health department staffer was accused of taking a list of HIV-positive patients to a gay bar and screening potential sexual partners.
The dispute stems from longstanding tensions over who gets to make decisions about the handling of HIV — public health officials or the communities that take the brunt of the virus.
Despite this, health departments continued collecting names. “We live in a name-based world, in a name-based medical system,” said Eve Mokotoff, a public health expert in Michigan who started the state’s HIV surveillance system in 1986. “If you want to have an accurate count of cases and not duplicate them, you need people’s names.” Names also allowed public health officials to do contact tracing and offer services to HIV-positive people, including treatment when it became available.
Still, the traditional reporting of HIV cases has limits. People often don’t immediately know they’ve been infected. The median lag time between infection and diagnosis was about three years for people diagnosed in 2015, according to one CDC analysis. By the time public health workers realize that seemingly unrelated cases are actually linked, an outbreak may be well underway.
Molecular analysis offers a complement to traditional public health data, which “cannot always pinpoint the leading edge of HIV transmission in a timely way,” Fulton wrote in an email to Undark. It makes what was once unfeasible — detecting and stopping new HIV outbreaks as they happen — a real possibility.
In 2015, a major HIV outbreak in Scott County, Indiana helped demonstrate to the CDC that typical, non-molecular methods for monitoring HIV spread weren’t enough.
That February, state health officials announced a spike in HIV transmission in southeast Indiana. The number of cases linked to the outbreak, which centered on Austin — a city with a population of just over 4,000 — ultimately ballooned to more than 200. “The truth is, no one was prepared for this unprecedented health care disaster, which had left our rural community with one of the highest HIV rates in the world,” wrote William Cooke, the city’s only physician at the time, in a memoir published this year. “The CDC wasn’t. Scott County’s health department wasn’t. I wasn’t either.”
The region was experiencing widespread misuse of prescription painkillers. People crushed pills, dissolved them in water, and injected them. The re-use of needles allowed HIV to spread. “The term that will forever in my mind be associated with that outbreak — that I can never banish from my brain — is the term ‘intergenerational needle sharing,’” Mokotoff said. “Grandparents were shooting up with their grandchildren, if you can imagine such a thing.”
Public health officials and researchers credit the creation of a local syringe exchange as a primary reason that the outbreak was eventually halted, despite initial opposition from then-Gov. Mike Pence. But what if local health officials had recognized the outbreak and gotten state support sooner? A 2018 modeling study in The Lancet HIV journal suggested that, if so, “the outbreak might have been substantially blunted.” If interventions had begun as early as 2011, the researchers estimated, total cases could have been fewer than 10.
With the opioid epidemic raging across the U.S., molecular HIV surveillance promised to provide an early-warning system for other drug-fueled outbreaks. Scott County “was one of the triggers for us to begin exploring the use of molecular data to identify clusters,” Oster said. At the time, the CDC was already collecting molecular data from some parts of the country. But after Scott County, officials decided to scale it up.
In 2017, the CDC announced new funding for HIV prevention and surveillance efforts. The money began flowing in January 2018, and around that time, the agency described the initiative as “the cornerstone of national prevention efforts for the next five years.” To receive the funds, public health departments were required to search for and stop potential HIV outbreaks using multiple methods — including molecular surveillance.
It was in the summer of 2018, at a gathering in Indianapolis, when Andrew Spieldenner first heard the term “molecular HIV surveillance.” His reaction, he said, was something like: “What the hell?”
Spieldenner, who is vice-chair of the U.S. People Living with HIV Caucus, was attending that year’s HIV Is Not a Crime National Training Academy, a gathering of advocates opposed to HIV criminalization laws. He and other attendees organized an impromptu session to sort out whether they should be concerned. “We thought maybe five or six people would show up,” Spieldenner said. “The room was packed with like 40 people.”
Many advocates felt blindsided by the new program. “The reality is this stuff rolled out before anybody who wasn’t in the implementation process knew that it was rolling out,” said Ronda Goldfein, an attorney and executive director of the AIDS Law Project of Pennsylvania.
In the Indianapolis conference room, advocates quickly began to fear the system — intended to slow the spread of HIV — could be misused to help imprison people under HIV criminalization laws. These laws target people who don’t disclose their HIV status to sexual partners, and they sometimes penalize actions that don’t transmit the virus, like spitting. Sentences can be harsh — as many as 30 years in extreme cases.
Many were passed in the late 1980s and early 1990s, before the advent of effective antiretroviral therapy, which today helps people manage HIV and keeps them from transmitting it. More than 20 states still have HIV-specific statutes that “criminalize or control behaviors,” while about a dozen others can prosecute HIV cases under broader communicable disease laws, according to the CDC.
Advocates fear that prosecutors could access molecular data and use it as evidence that a defendant and victim share genetically similar strains of the virus. The data alone can’t prove the direction of HIV transmission from one person to another, but advocates say there’s no guarantee judges and juries will understand the science or interpret data correctly. “We’re not waiting for worst-case scenarios here,” said Alexander McClelland, a Canadian scholar and activist who lives with HIV.
McClelland pointed to an example in his own country where genetic sequencing was used as circumstantial evidence to convict a man of first-degree murder. Advocates also argue that the people most likely to be swept up in the surveillance system — including Black people, immigrants, sex workers, and people who use drugs — are also among those most heavily policed. “The fears of criminalization for people are really real,” McClelland said.
“The reality is this stuff rolled out before anybody who wasn’t in the implementation process knew that it was rolling out,” said Goldfein.
There are no universal protections to keep data away from law enforcement, said Breanna Diaz, policy director for Positive Women’s Network – USA, a nationwide membership organization of women with HIV that is fiscally sponsored by the progressive nonprofit Movement Strategy Center. The CDC itself maintains strict data protections, and the genetic sequence data it receives is anonymized. But data held by state and local health departments have names attached, and state privacy statutes vary widely.
Some laws and regulations governing the release of HIV data leave a lot of room for interpretation, especially when it comes to health departments handling requests from law enforcement, said Amy Killelea, former senior director of health systems and policy for the National Alliance of State and Territorial AIDS Directors. In 2018, prompted in part by the national rollout of molecular HIV surveillance, Killelea helped author a report on data privacy laws in the U.S.
Molecular data is complex, and Killelea is skeptical that the technology in its current form will be relevant to prosecutors. Still, she said, that doesn’t mean people’s fears aren’t real. “I actually would be in favor of laws on the books in every state that would say, ‘Public health data cannot be used for law enforcement, ever,’” Killelea said. The most important thing right now, she said, is to get HIV criminalization laws off the books.
Some states have. In July, Illinois became the second state in the nation to fully repeal its HIV criminalization statute. (The first was Texas, in 1994, though the Center for HIV Law & Policy notes that it didn’t stop people living with HIV from being prosecuted under other criminal laws.)
Michigan revised its laws in 2018 to protect people who are HIV-positive but use methods to reduce risk of transmission, such as antiretroviral therapy. The new laws, which were enacted the following year, are “not perfect, but they’re modernized,” said Jacob Watson, an HIV epidemiologist with the Michigan Department of Health and Human Services. “They account for modern science.” Watson works on Michigan’s version of molecular HIV surveillance, and he says the program has gotten community buy-in, in large part because it was rolled out while Michigan was working to update its criminalization laws.
While activists have been the most vocal objectors, they aren’t the only ones worried about molecular HIV surveillance. According to Stephen Molldrem, a researcher who studies the use of HIV data in public health, some health department staff thought the CDC rushed the national scale-up of the program. “Specifically, public health personnel have expressed to me that they did not have a chance to consult community-based stakeholders in their jurisdictions before the rollout,” he wrote in an email to Undark.
Fulton, the CDC spokesperson, said the agency began talking directly with HIV community members, organizations, and health departments about molecular data analysis as early as 2016.
A perceived lack of consultation and community buy-in, though, has haunted the program, and raised thornier issues about consent. “The bottom line is that this is our physical body, this is our data that is being used without our consent,” Spieldenner said. While he and other advocates insist that people living with HIV must give affirmative approval for their molecular data to be analyzed, public health officials don’t think this can be done without compromising the tool’s effectiveness.
“I completely agree with the community’s concern about this,” Mokotoff said. But, she said, “disease surveillance cannot be done successfully by a consent process. Because if you don’t have reports of everybody who’s diagnosed, you can’t do prevention, you can’t do the work that you need to do.” Still, she said, health care workers can help people understand what’s going on. “You can present this as a good thing,” Mokotoff said.
Despite the call for a moratorium, the CDC doesn’t seem likely to abandon molecular analysis as a tool. Goldfein, the Pennsylvania attorney, takes a pragmatic view. “This train has left the station,” she said. “I applaud all of the incredibly strong advocates who are like, ‘We’re gonna die on this hill, we’re not stopping, this has got to stop, we have to do something different.’ I just don’t see it happening.”
Diaz, of Positive Women’s Network – USA, said advocates want a temporary halt on the practice until community concerns are addressed and adequate protections for people living with HIV are in place, not the complete dismantling of molecular surveillance. “We’re not saying, ‘End it, forever,’”she said. “We understand that that is impossible.”
The recent open letter calls on the CDC and the National Institutes of Health Office of AIDS Research to work with advocates and people living with HIV to create guidelines around informed consent — as well as standards for how officials will consult with people living with HIV when crafting future data programs. The U.S. People Living with HIV Caucus is also asking the CDC to require, as a condition of funding, that health departments commit to end HIV criminalization laws. AIDS United, a nonprofit, has recommended the CDC require state and local health departments to certify that public health officials will only share data with law enforcement when a court orders them to, and will notify the person whose data is being sought. The nonprofit also wants officials to help educate judges, prosecutors, and others in the criminal legal system about the science of HIV transmission and “the scientific limitations of molecular surveillance.”
Now that President Biden is in office, Diaz said, federal officials are taking advocates more seriously. “I believe that we are in a great situation, that this administration is willing to hear those concerns,” she said. “But it’s not enough to hear. We want to see action.”
UPDATE: This story has been updated to make clear that advocates for people living with HIV want protections in place to prevent police and prosecutors from accessing molecular surveillance data.
Tynan Stewart is a freelance journalist based in Kansas City, Missouri. Follow his writing @tynanstewart.
Reporting for this story was supported by the Missouri School of Journalism’s O.O. McIntyre Fellowship.