Do We Want to Stop HIV?
Reflections of a Thirty-Year Veteran of the Fight Against HIV
by Jesus Ramirez-Valles
We have the knowledge to stop HIV—thanks in large part to activists, researchers, and health professionals. We have, in essence, a VACCINE to render a person immune to infection. Pre-exposure prophylaxis (PrEP), when taken as directed, prevents HIV from infecting our bodies. And we have the interventions—from the individual to the system-levels—to prevent and treat HIV.
In the history of public health, these achievements—in research, education, and in drug development—have almost always marked the control, if not eradication, of a disease.
So why isn’t this the case with HIV? Why are we not fully implementing the tools we have created and truly control it? Perhaps it’s because the once burning platform is barely smoldering. Or, maybe, the fact that those most affected by HIV, are already marginalized—and HIV simply pushes them farther into the background. Or, most simply, there is no longer political will and capital in the fight against HIV; not even a moral imperative.
I find myself, as a thirty-year veteran of this fight asking: How is this different from where we were in the 1980s? Have we come out the other side of the epidemic? Or have we simply come full-circle to the beginning of a new, but hauntingly familiar fight?
And there are other questions we must ask ourselves: It is okay to end an epidemic for some, but allow it to continue for others? What is the role of dedicated health professionals and researchers when we’ve come to the end of a disease we’ve spent our lives fighting—yet watch helplessly as the cure is withheld from many? My answer is the same today as it was at the start of the epidemic—we have to ACT. The answer lies in mobilizing communities, unleashing their power again, and demanding the end of HIV for all.
I speak as a brown and queer person, father and husband, community organizer, researcher, and academic. My story of the fight is actually fairly common among us middle-aged gay men. It starts with the beginnings of the virus and the simple fact that HIV work tends to CHOOSE YOU—rather than the other way around. I went to college to pursue my dream of doing films. Public health, research, and organizing communities weren’t on the radar. But it was the late 1980s—and I was also a gay man. HIV, AIDS, the fear of dying, losses, puzzlement, and then the anger, until it became a mandate to DO SOMETHING.
I became an HIV community organizer in my native Mexico-US Border. With a group of determined—angry—gay men, we created a cross-national community to educate, intervene, care for the ill, and provide dignity in death to those falling. I lived the camaraderie of gay, and other, people: poor working-class men, drag queens, transvestites, nurses, social workers, from Juarez and El Paso and beyond. Truly a gift out of an otherwise difficult and nightmarish time.
This route took me to public health, research, and academia in the United States. I have met, worked, and become friends with leading activists and scholars in the fight against HIV, many of them people of color (most of them queer; there are not many of us in the country, so that made it easier). We have supported each other: listening, speaking out, mentoring, and cheering each other up—crafting unique ways to do research and engage with our communities.
That camaraderie—the solidarity, again—comes from creating a safe place; a place where our abilities are not questioned; where our being is validated. Sadly, this is often different from our academic home institutions, where many of us are isolated, a bit lost, and little understood.
Being on the “other side” at this point—I have become a senior scholar. I do more than HIV research. I direct “things”—and try to lead groups of researchers and institutions. I am back in San Francisco, after twenty-plus years in Chicago. I have a husband and our son is in college. I have lost my parents.
The HIV epidemic has come through—and OUT—the other side. There are, however, still fights to be waged—and WON.
The HIV epidemic has come through—and OUT—the other side. There are, however, still fights to be waged—and WON. To begin with, many people living with HIV can live a so-called normal life. An older gay man whom I interviewed for my latest work, on queer aging, told me: I’ve been positive since 1990 and I’ve had this damn diabetes. I hate diabetes! I have a much harder time with that than with HIV! Yet—on the other side of our southern border—I have a dear friend in Mexico City who lost another young friend to AIDS earlier this year. His friend was suffering depression and had stopped taking his medication.
We can end HIV now. We know how to prevent and treat HIV—biomedical, behavioral, and institutional interventions. What we don’t have is power. The barriers are formidable and resilient: public officials and public agencies; the pharmaceutical industry; racism and homophobia.
Racism permeates ALL of those hurdles. Black and brown people are now the most impacted by HIV, they are also at the bottom of our social class system. They don’t have the political power to demand action. Alas, those WITH power, certainly more power than people of color, few of our white brothers and sisters (queer and not) are willing to walk the rest of the road with us.
We live under a white supremacist, capitalist, patriarchal system. That has an actual effect on when and for whom HIV can be stopped. I believe this is the next fight for the epidemic—one which we cannot allow thirty years before we win.
We academics and researchers must continue taking on this challenge. We have the skills and tools to lead and work with community activists. Yet, starting a career as an academic and researcher is harder now, thirty years later. Even TOUGHER for scholars of color. Fully funded, hard money and tenure-track positions are almost extinct. Many young researchers now have to raise their own salaries; hustle for the money. Chasing funds is stressful; makes it difficult to sustain a line of research; and, obviously, cuts the freedom to pursue what we think should be investigated.
The demands have increased: teach more to more students, publish more, get more grants. So many times I find myself arguing—with peers, hiring committees, tenure and promotion committees, and review panels—against the use of any numeric metric to assess someone’s quality of research. We can’t rely on the number of papers, citations, or grants to judge our colleagues’ work. They will not help in the fight.
I have seen women, black and brown, assistant professors, collapsing, literally and figuratively, falling sick and dropping out of their careers. Our academic enterprise is so antiquated and too frequently toxic. They face isolation, misogyny, racism, and the perennial jealousy and competition. Of course, I have seen colleagues and friends succeed in their fields. They, like me, thrive despite their institutions. I have encountered compassionate and talented colleagues; they are the minority. But when I look at the pipeline in public health, I don’t see much future—we are failing to recruit young scholars of color.
Then, we have NIH, one of our main sources of HIV funding. Over the last two decades, the NIH budget has decreased, while the number of researchers seeking funding has increased in significant ways. We all are facing a very stiff competition.
But that’s only part of the problem we, HIV researchers, see with NIH. Another is how the NIH funding is distributed. Certainly—there is no equity. Grant funding is concentrated in a small number of researchers and institutions. What is more, the peer review process we use to rank research proposals is quite biased. It tends to be conservative, keeping the status quo—it does not like risk-takers. Some argue that a lottery system might be a better way to give research grants; or funding centers or groups of researchers, rather than research projects.
We must recall that NIH, like the CDC and the whole HHS, are state agencies. They have pursued and will keep following and protecting the state interests. We all know what those interests are. My question is, to what extent do we want to follow the dictates of the state?
I have taken you through this route with a purpose: to share with you how things are seen from this side and to provide the larger context in which our efforts to end the HIV epidemic take place. What’s next for us in this fight to eliminate HIV?
We need to regroup and revisit the lessons from the civil rights movement, the sexual liberation movement, and ACT UP. We must take the traditional grass-roots route of direct action and be engaged scholars.
As engaged scholars we work in—and WITH—the public’s concerns. The questions we ask, the research we do, emerge from our embeddedness in the public square, in our communities.
As engaged scholars we work in—and WITH—the public’s concerns. The questions we ask, the research we do, emerge from our embeddedness in the public square, in our communities. The products of our work are not finished, but OPEN, and they are shared beyond paywalls; their value rests on their contributions to the public discourse and the public good.
We need collective action. Together is how we might create the power we need to overcome the barriers to fully control HIV. The dominant strategies of diversity and inclusion—in academia, research centers, and NIH won’t do. What we need is diversity of bodies and intellects that could disrupt the system. Diversity and inclusion must lead to disruption; otherwise it is co-option.
Part of our collective action and disruption likely must include reframing health equity, and public health problems—such as HIV. The fact that we have not been able to make many in-roads—at the policy and institutional level—to reduce health inequities could be a problem with our frame. HIV opened a door to talk about social inequities—homophobia, racism, housing, and social class—as determinants of health; as health inequities. Yet, in doing so, we medicalized those social inequities. We allowed medicine (as an industry) to take over and with it individual-based and neoliberal responses. We focus on behaviors and pills, rather than social policies and culture.
It might also be the case that the health inequities frame has “over”-complicated the problem. Solutions require emphasis on multiple root causes and bringing together a myriad of (health and not-health) experts and sectors. Such complexity has led to inaction. And, lastly, we might have created what some scholars call the “imperialism” of health: health dominates and dictates every public sector effort. For this next front in the fight against HIV, we must find our ground, our new ground: activism that disrupts the status quo.
Are we on the other side of the HIV epidemic? I say, “yes.” Have we won the war? No. In fact, I would say the battle coming could be the defining fight of the careers of the generation that follows mine.
A celebrated medical solution—and I am, truly, grateful for these advances—has, unfortunately, created a MORAL dilemma: Is it morally defensible to end an epidemic for some—but allow it to continue for others? Of course it isn’t.
We need to find our voice, once again. Each of us, in our individual and collective paths, must speak up and participate. As public health workers, we must reclaim our time. We must call this next part of the fight what it is: a fight against something that is immoral; indefensible. We must call it A LIE: that HIV is fixed and solved. We must call it RACIST.
As someone coming out the other side of the FIRST fight on HIV and AIDS, I invite us all to DISRUPT the “HIV Industrial Complex,” to hold it accountable for access and demand it join us, the public, to fight those powerful forces that are stopping us from putting an end.
We must craft our talents and direct them differently to set the platform on fire again. I am reminding us that our professions and our careers are at their most rewarding and fulfilling when we lend our voices to those without. Put simply—we must ACT. The answer lies in mobilizing communities, unleashing their power again, and demanding the end of HIV be available to all.
Jesus Ramirez-Valles is a public health leader, scholar, and filmmaker; author of Queer Aging and Compañeros: Latino Activists in the Face of AIDS; and co-creator of the documentary Tal Como Somos. He directs the Health Equity Institute of San Francisco State University and is the Editor-in-Chief of Health Education & Behavior.