Come World AIDS Day, December 1, 2021, the United States is expected to have a new National HIV/AIDS Strategy—and an opportunity to show people living with or affected by HIV that the government understands that ending the HIV epidemic is about more than just testing and pills.

Ending the HIV Epidemic: A Plan for America,” announced by the previous administration, leaned heavily on testing and pills for HIV treatment and pre-exposure prophylaxis (PrEP), which we know work to control the virus and prevent its spread. What it didn’t acknowledge was that the HIV epidemic is about more than pills, tests and molecular surveillance to identify new clusters of HIV transmissions, said Tami Haught, managing director of the Sero Project. Two years ago, dozens of people living with HIV took the stage at the U.S. Conference on AIDS to protest that the plan was built largely without their input.

“We cannot end the epidemic until all [people living with HIV] are included in [the National HIV/AIDS Strategy], prioritizing sex workers and immigrants,” Haught told POZ. “We cannot end the epidemic until racism and gender disparities are addressed and prioritized. Finally, we cannot end the epidemic as long as [people living with HIV] are at risk of being prosecuted [under HIV criminalization] and there’s a moratorium on [molecular HIV surveillance] until allstates have safeguards in place to ensure that the data collected cannot be turned over to police and prosecutors.”

Yet what will be part of the new plan is anyone’s guess right now. Harold Phillips, the director of the White House’s Office of National AIDS Policy—the so-called AIDS czar—has been teasing the new plan for months. Phillips told POZ that he has been meeting with the Department of Housing and Urban Development, the Department of Labor and the Department of Agriculture, among others, to harness their programs to benefit people living with or affected by HIV. Data show that lack of housing, insufficient food and inadequate income are all associated with a greater risk of acquiring HIV as well as worse outcomes for people living with HIV.

Phillips told POZ that those other agencies could bolster their work to help people affected by HIV even before bringing in biomedical tools, like PrEP or treatment.

“By the time someone becomes HIV positive and reaches our clinic doors, there could have been a whole host of things we did to keep that individual from becoming sick,” Phillips told POZ magazine in an interview for the December issue. “So if we had worked on housing issues, if we had worked on employment issues…thinking about HIV and employment and income inequality issues.”

In addition, it’s likely that the plan may include another move Phillips shared with POZ: harnessing social media platforms to label stigmatizing and false HIV news as such.

In “Demanding Better: An HIV Federal Policy Agenda by People Living with HIV,” the U.S. People Living With HIV (PLWHIV) Caucus, comprising in part Positive Women’s Network–USA, the Sero Project, ThriveSS and Positively Trans, activists call for the plan to center the HIV response around five goals:

  • Create concrete mechanisms to ensure that people living with HIV and communities most impacted guide the new plan.
  • Center human rights by eliminating HIV criminalization laws and putting a moratorium on all molecular HIV surveillance.
  • Attend to racial and gender disparities.
  • Make sex workers and immigrants living with HIV priority populations with action plans through the federal response.
  • Not just commit to reduce new HIV transmissions by 90% by 2030 but also commit to improving the quality of life for all those currently living with HIV. Undetectable viral load isn’t enough.

As for molecular surveillance, it’s unclear whether the administration will waver on that.  In October, the Centers for Disease Control and Prevention issued expanded guidance on how the government plans to collect, use and release HIV sequence data. Those sequences can be used to link new transmissions to existing cases of HIV—and the people living with it.

The CDC guidance state that “there is no documented public health benefit to collecting raw [next-generation sequencing] data through HIV surveillance, and therefore, the risks of collecting these data outweigh any potential benefits.” The guidance also said the data “should not be interpreted as determining transmission direction or proving transmission between individuals.” And it says none of the data should be released to publicly available repositories, such as GenBank, which police have used in the past to tie people with DNA evidence left at the scenes of crimes like murder.

The United States has had a National HIV/AIDS Strategy to guide HIV programming and funding since 2010. The strategy has been credited with impressive drops in new HIV cases in some of the areas most affected by HIV, including a 10% drop in Washington, DC, and an overall 18% drop between 2010 and 2016.

A strategy laid out during the Obama administration continued the initial plan until 2020. That was followed in 2019 by the Trump administration’s “Ending The Epidemic: A Plan for America” (not technically a National HIV/AIDS Strategy), which aimed to reduce new HIV transmissions by 90% by 2030 through targeting testing, HIV prevention programs that made use of PrEP and a broader rollout of HIV treatment to all people living with HIV. The plan also included medical teams that would track molecular data to identify potential outbreaks of HIV. People with HIV have objected to the surveillance, saying it’s especially dangerous for Black and brown people, transgender people and other marginalized people impacted by HIV who are subject more often to criminalization.

Then, in January 2021, a new HIV strategy developed by the Trump administration came out. Spearheaded by Admiral Brett Giroir, MD, assistant secretary for health in the Department of Health and Human Services, the plan largely reflected the previous plan. None of the recommendations made by the PLWHIV Caucus were incorporated into that plan, Breanna Diaz, program director at the Positive Women’s Network–USA, said in a webinar on the “Demanding Better” agenda.

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