Critics worry that government surveillance of HIV could do more harm than it helps

Robert Suttle has seen firsthand the legal risks of having HIV.

In 2008, Suttle said, a former partner accused her of not disclosing that she was HIV-positive. He was charged with “intentionally exposing himself to the AIDS virus” under Louisiana law. Rather than fight the charges and risk a longer sentence, Suttle pleaded guilty, received a six-month sentence in state prison and had to register as a sex offender.

“You can be criminal, of course, for existing as a person living with HIV,” he said.

Suttle, who now lives in New York, said her experience worries her about a new tool being promoted by federal officials to monitor the spread of HIV. With molecular surveillance, public health officials use routinely collected blood samples to track how the virus is spreading among people.

Suttle said such data could be used in cases like his. “Through this surveillance, you can connect to a lot of different people or be considered a referral source to all these other people,” he said.

Molecular surveillance is part of the Centers for Disease Control and Prevention’s HIV Cluster Detection and Response Program. It uses a variety of surveillance data, including the genetic variation of the virus, to identify networks of HIV transmission and tailor interventions to emerging epidemics. HIV mutates rapidly, the CDC says, and finding similar viral strains in people can be a sign of rapid transmission.

Cluster detection and response is a pillar of the federal government’s 2019 plan to reduce new HIV infections in the country by 90% by 2030. Late last year, the Biden administration renewed its commitment to the program and has since pumped an additional $115 million into the effort.

But molecular surveillance has faced considerable opposition since its introduction nationally. Service providers, health equity advocates, and people living with HIV worry that the procedure’s risks outweigh the benefits, and their concerns have grown louder as awareness of the tool has grown. Some have called for a halt to the practice until federal health officials address concerns about patient consent, data protection and the potential for HIV criminalization.

“This program — without the safeguards and guidelines attached to it — has real potential to do harm,” said Andrew Spildener, vice chair of the US People’s Living with HIV Caucus, which has issued a formal call to the CDC to end the practice. .

One of the main concerns of the group involved compliance. It says many people living with HIV don’t know that genetic information about their strain of the virus can be used to link them to other people, and that their personal data won’t be used that way.

“The tension for me as a community member was not individual or community consent,” said Alvan Quamina, executive director of NAESM, an Atlanta health nonprofit focused on serving black gay men.

Viral genetic data has traditionally been used to test for resistance to HIV treatment, he said, and people don’t necessarily know about its use for surveillance. This has led to discomfort and fear about the program among service providers and people living with HIV, Kwamina said. She adds that these feelings can fuel stigma and prevent people from seeking or keeping the treatment they need.

“I think it can have an absolutely chilling effect on care engagement,” she said.

This is a complication that has significantly hampered efforts to slow the spread of HIV due to the Covid-19 pandemic. In May, top CDC officials said the agency could fall short of its 2030 goal, as HIV testing declines and fewer people at risk of contracting HIV are using pre-exposure prophylaxis, or PrEP, drugs that reduce their chances of contracting it. virus.

The CDC began requiring state, regional, and local health departments to fund the collection and submission of HIV genetic sequences from people living with HIV in 2018, although some jurisdictions already do so.

The agency said jurisdictions must meet its standards for data protection and must not use HIV genetic sequences to determine who has infected whom or the direction of transmission between people.

But some advocates worry that the decentralized nature of the U.S. public health system — which places responsibility for running programs in the hands of local agencies — makes that data vulnerable to abuse.

In 2021, the CDC counted dozens of states with laws that criminalize HIV exposure. The agency called many of these rules “outdated” and said they did not reflect current scientific understanding of how the virus is transmitted.

It’s unclear whether surveillance techniques are more valuable than other, less invasive public health methods, said Kathryn Hansen, executive director and founder of the Center for HIV Law and Policy, which has raised concerns about potential criminalization and other risks associated with molecular surveillance. Hansen mentioned options such as campaigns for sexual health literacy and tracking new infections through patient interviews.

He questions whether molecular surveillance is needed in areas where infections are high and public health officials know the groups most at risk. “Is the juice worth squeezing?” she asked.

The CDC says molecular surveillance has helped identify nearly 300 HIV outbreaks across the country, many of which were previously unknown. But some state health officials — even those who see value in the strategy — question whether it’s effective in every jurisdiction.

Don Fukuda, head of the Massachusetts Department of Public Health’s Office of HIV/AIDS, said molecular surveillance helped his agency realize the full scope of an HIV cluster among injection drug users in 2016. There is a more complete picture of the outbreak, Fukuda said, increasing the urgency and scope of the state’s response.

Still, he acknowledged that other states may not see the same benefits from molecular surveillance and may not have the money, manpower or technology to fully implement the practice.

Samuel Burgess, director of the Louisiana Department of Health’s STD/HIV program, said very few HIV clusters in his state are detected using molecular surveillance, because the process of sequencing viral genetic data can take too long to process the data. A quick response. There are sometimes delays in HIV diagnosis and reporting, Burgess said, as well as processing data, sending it to the CDC for analysis and waiting for results.

In his state, Burgess said, public health officials already know who is most at risk of contracting HIV and what barriers they face in getting them care.

Dr. Alexa Auster, who leads the HIV Cluster Detection and Response Program at the CDC, has heard these concerns before. “We are always happy and interested in hearing different perspectives about this work,” he said. “We think that this kind of dialogue and exchange can lead us to a better place.”

Oster said local organizations and individuals involved in the outbreak have been more receptive to molecular surveillance than national HIV advocacy groups, and highlighted a study that showed the technique’s effectiveness in quickly identifying clusters of infection.

Oster called molecular surveillance a “core public health function” and indicated that the practice will not stop. But he said the CDC is open to considering how to allow local jurisdictions to tailor the program to their needs.

People with serious reservations about molecular surveillance feel that engagement is crucial.

Tori Cooper directs community engagement for the Human Rights Campaign’s Transgender Justice Initiative and spent years working with people living with HIV in Atlanta. He said some concerned about the effort could be convinced of its benefits by focused and sustained outreach.

“I believe the onus is now on the CDC to do that, because there are some people — there are a lot of people — who are absolutely horrified,” he said.

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