At this year's annual U.S. Conference on AIDS (USCA), held Sept. 6-9 in Orlando, Florida, the official theme was "Fight Back, Fight HIV," a nod to the activist history of the HIV movement and the need for advocacy and political will to make progress against the epidemic in the United States and the world.
With that activist message in mind, I attended the USCA this year hoping to learn about the HIV movement's collective high-level strategies to overcome current challenges to HIV prevention, treatment, and care in the U.S. Not least, as we all know, political leaders in the White House, Congress, and state governments are actively trying to defund and dismantle programs and policies related to public health and human rights. As examples:
- State legislators in a third of U.S. states still refuse to expand Medicaid eligibility and are proposing new restrictions on Medicaid programs to limit eligibility and health coverage. The result is that over two million Americans, including tens of thousands of people living with HIV, lack any insurance coverage for their health needs.
- The Trump administration and several Republican politicians in the U.S. Congress are pushing to cut eligibility and payments for the 340B drug discount program, threatening a significant revenue source for hundreds of HIV service providers that use 340B funding to provide patients with free and low-cost medicines and related services.
- Six years after the 2012 U.S. Food and Drug Administration's approval of pre-exposure prophylaxis (PrEP), a highly effective medication to prevent HIV, U.S. government leaders are still not committing to policies and programs to ensure the affordability and delivery of PrEP. As a result, PrEP has been accessed by only an estimated 6% of people at highest risk of acquiring HIV, and the U.S. health care system is paying hundreds of millions of dollars to purchase PrEP at needlessly high prices.
- More than ten years of increasing national rates of opioid overdoses and viral hepatitis are signaling a potential for HIV outbreaks due to unsafe injection drug use. Yet, despite new opioid-related legislation about to be passed by the U.S. Senate, health experts warn that syringe access and other harm reduction and addiction treatment programs remain underfunded and inadequate compared with the needs presented by the opioid crisis.
In this context, I was hoping for a national conference that contained some structured sequence of conversations about coordinated strategies and actions for political change.
Big conferences are challenging to report about. Aside from the one plenary session each day, USCA divided people into 15 to 20 parallel workshop options, located across a sprawling hotel meeting space. Furthermore, the USCA was targeted to a range of audiences, including mostly front-line service providers attending to exchange perspectives about fundamental issues and approaches in their day-to-day work. The conference is not only about national and local political mobilization.
That said, although this year's USCA had good sessions about Medicaid, 340B, PrEP, and harm reduction, I failed to detect at the conference any centrally coherent conversation or momentum toward organizing the "fight." "Injustice" was a common refrain and ever-present backdrop, but many speakers from HIV organizations focused narrowly on their service provision and not on mobilization for better government policies and programs. Speakers from social justice movements such as Black Lives Matter said the words "HIV" and "AIDS" but clearly struggled to link their content with HIV-specific issues. Very little was centered on building local political power and getting out the vote in November.
Related: At USCA 2018, Black Lives Matter Cofounder Alicia Garza Discusses HIV and Building Black Social Justice Power
The conference was also disturbing in the level of its overt pandering to the pharmaceutical industry. Pharmaceutical advertising was everywhere at the conference. Seemingly no expense was spared on materials and media to promote the pharmaceutical sponsors, especially Gilead, Merck, ViiV, and Janssen. [Editor's Note: Gilead is also an advertiser on TheBodyPRO, including within our USCA coverage.] The pharmaceutical industry is an ally of the HIV movement in developing, delivering, and marketing medicines and other products in ways that government often can't or won't, and the private sector is an important partner in both funding initiatives and advocating for policies for better health care. But still, the pharmaceutical industry has a mission to extract maximum profit from its consumers, and as such, it is a direct cause of people failing to access medicines and health care services. The official program and materials of the USCA were silent on this issue.
Fortunately, throughout the conference, there were signs of hope in the work of new, younger leaders who are organizing for health and medicines as an issue of social and economic justice. This new cohort of leaders, experienced in the HIV work of the past decade, is charting innovative new models and approaches for the HIV response. As examples of notable work being discussed at this year's USCA:
- Activists of the Counter Narrative Project, including Charles Stephens and Johnnie Ray Kornegay III, described strategies for supporting black gay and same gender loving men in becoming involved in city, county, and state policymaking related to health and rights, including engagement of people through media projects such as the Reckoning blog, Counter Point podcast series, and Revolutionary Health videos.
- The men of Thrive Support Services, including Daniel Driffin and Larry Walker, shared their work to engage 800 HIV-positive black gay and same gender loving men in online peer support for HIV prevention, treatment, and care, as well as an effort to train and support 200 of these men in HIV advocacy at the local, state, and federal level.
- Organizers of the new Transgender Strategy Center, including Jordan Olsen, presented and discussed their development of a "Strategy Lab" to cultivate new ideas, strategies, and solutions to issues facing trans communities, along with a combination of fellowships, peer mentoring, and coaching, as well as organizational support to build new leaders in transgender networks working for health and rights.
- The activists of the PrEP4All Collaboration, including Nick Faust, James Krellenstein, Jeremiah Johnson, Cameron Kinker, and Christian Urrutia, built new alliances in policy and advocacy work for increased access to PrEP.
The HIV response in the U.S. needs a revolution. From its community-based activist origins, the HIV movement is now led by many competent policy experts and organizational managers who are nevertheless stretched by their obligations to their organizations and the practical work of leveraging marginal gains from a badly flawed health care system.
New waves of organizing are needed to reinvigorate the political struggles for health care reform and human rights and to honestly confront barriers to HIV prevention, treatment, and care. The informal organizing efforts at the USCA were promising signs of energy, innovation, and renewal in the HIV movement.
The news from the USCA is that a new cohort of leaders is finding its footing.
May they save us all.