I remember the 2016 election like it was yesterday.
I was living in Washington, D.C., working as policy director for Treatment Action Group. I’d decided I was not going to watch the election-night coverage—even then I was growing into the idea that allowing the news media to turn elections into high-drama television every four years was not healthy to consume, and isn’t really healthy for democracy.
I retired to bed around 11 p.m., when several key states seemed too close to call. When I woke up to the news that Donald J. Trump had won—and a text message from Mark Harrington, Treatment Action Group’s executive director, that we were calling an emergency staff meeting—I immediately packed my bags and jumped the Amtrak to New York City.
In that staff meeting, as we discussed what this new administration would mean for the work we were doing to build local plans to end the HIV epidemic across the country, we started asking questions: Was the Affordable Care Act (ACA), which enabled us to imagine that ending the HIV epidemic was possible, now doomed? What would come of our work in moving the U.S. to invest more heavily in global health programs, like the President’s Emergency Plan for AIDS Relief and The Global Fund, now that an “America First and screw everyone else” populist sentiment had ushered Trump into office?
I remember saying to the staff in that meeting that I thought many of our coalition partners and allies would decide to center their efforts on saving things, rather than growing things: saving the Ryan White CARE Act, saving the ACA, stopping any hemorrhaging of U.S. investments in global health. But I felt that, while we would definitely need to do some of that, in fact this was an opportunity to actually go beyond saving what we knew were already underfunded programs—now was the time to begin laying the groundwork for what it is we actually knew our communities needed. And if that meant reimagining our policy goals, so be it.
Four years later, we are hopefully at the end of the Trump presidency. (I say “hopefully” because we need to take very seriously the threats he’s making to not leave office; I’m not convinced it’s just the idle posturing of an egomaniac. Anyone so totally indifferent to custom, decency, or human suffering is capable of anything.) Smart, strategic, and aggressive organizing helped stave off threats to repeal the ACA (in no small part due to HIV activists working in coalition with senior-citizen groups, as well as disability and reproductive-justice organizers). It also somehow got U.S. Department of Health and Human Services Secretary Alex Azar to adopt a federal plan to end the HIV epidemic, in the midst of so much draconian policymaking (family separation at the border, the failure to act decisively on COVID-19, and the direct encouraging of white-supremacist groups to harass—and in some cases, murder—Black Lives Matter protesters) that resulted in lives being irreparably damaged and lost.
But as we look to 2021, with so many challenges ahead of us, what is the role of the HIV movement going forward? I would argue that it’s not the time to just try and restore federal governance to its previous state prior to 2016. The time is now for us to push for more—in public health, in health care, and in research and regulatory regimes.
These Areas Need a New Push From HIV Activists—and They Need It Now
The COVID-19 pandemic has demonstrated how neglected and underfunded our public health systems and workforce have been for decades. We should be looking to demand what our communities need, not just what is most politically expedient to do.
Political conservatives have been consistent for the past 85 years in their demands for gutting social safety-net and entitlement programs, dating back to the passage of the early New Deal programs in the 1930s. In that time, they’ve done a lot of damage to those programs—and they’ve also succeeded in making many Americans distrust the government and other authoritative institutions, which has been a colossal disaster in trying to implement COVID-19 preventative public health measures. Should the Biden administration try to implement any national measures to slow the spread of COVID-19, they’ll likely be met with armed militia movements threatening to overthrow the government.
In this kind of environment, sticking to our business-as-usual advocacy isn’t going to be enough. For example:
The Ryan White CARE Act. While we often tout the success of Ryan White and have been lucky it has maintained bipartisan support, we have to admit that it is underfunded to meet what will surely be a growing need in the wake of so many people losing jobs (and employer-based health coverage) due to the COVID-19 pandemic, not to mention the goals of the Ending the HIV Epidemic plan to increase the number of people with HIV who are in care and virally suppressed.
Barriers to HIV care. People living with HIV still face too many bureaucratic barriers to get their health care covered. Many have to constantly go in and out of various insurance or coverage plans based on their income, and we don’t deal with the fact that people get discouraged, give up, and too often die of AIDS because they get tired of navigating these systems that actually dehumanize people and increase the stigma they face.
HIV prevention. Americans still have not been fully made aware of the role viral suppression plays in keeping people with HIV healthy and preventing transmission of the virus. Meanwhile, we’re eight years into the existence of pre-exposure prophylaxis (PrEP) as an approved form of HIV prevention, and it’s still true that too few people who want it can get it—and too many people really don’t know about it at all.
Furthermore, even with a generic version of Truvada (emtricitabine/tenofovir disoproxil fumarate) now on the market, it hasn’t yet brought down the cost of PrEP, and there are still so many cost-containment measures health insurance companies have implemented that deter use. The HIV community can’t just sit at industry-sponsored events and pretend these issues aren’t really impacting access: All of our current drug-payment assistance programs haven’t done nearly enough to get us to a real spike in PrEP use in the communities that need it most.
HIV Activists Need to Lead in Areas That Go Beyond Just HIV
So, what am I proposing? I think it’s time to go big or go home. For example, with a few exceptions, the HIV community’s refusal to be leaders in the fight for Medicare for All shows just how much the movement has bowed to industry concerns, rather than what would actually be best for people living with HIV. For example, railing against high drug costs in order to negotiate better rebates under the 340B program so HIV service organizations can continue to exist is complicated, and it’s ultimately an unsustainable model.
But I’m not just talking about HIV activists focusing on creating one system for health care coverage, or making health systems more responsive to people living with or impacted by HIV. In order to end the HIV epidemic, we have to think about the other social conditions that drive disparities in the epidemic. From housing and homelessness, to transphobic violence and discrimination, to xenophobia and racism in immigration systems, to policing and prison systems, to poverty, all of these issues have to be taken seriously as drivers of the U.S. HIV epidemic—and because they impact biomedical outcomes such as HIV treatment and prevention access, adherence, and viral suppression.
Or take crystal meth use, which has spiked in most Black and Brown LGBTQ communities across the nation. Our federal Ending the HIV Epidemic plan makes zero mention of this, and instead only raises the opioid crisis (which erroneously is solely viewed as a white, rural problem). We need harm-reduction strategies to be funded over and above criminalization, and we need a research pipeline for medically assisted addiction treatment.
In other words, what we need right now, if we’re really serious about ending the HIV epidemic in America, is a commitment to big-vision thinking and strategies. We should be talking about what a new social contract for people living with HIV and communities most impacted by the epidemic would look like. Scaling up local prevention and treatment programs is only a part of it, and it will ultimately fail if the rest of the institutions that govern people’s lives remain unmoored.
A change in presidential administrations won’t achieve this alone. The HIV movement’s willingness to go big on reimagining what a right to health in America means, and to fight to get us there—that is what will be required.
We aren’t in the America of the Obama years. (It was far from perfect even then.) Rather than pretending that we can go back to that point, let’s take this opportunity to push for a new vision, not a return to the same fractured mirror.