As we roll around to yet another World AIDS Day, it’s clear that the HIV epidemic, which is still very much an epidemic, has faded into the background in a lot of our activism. More than 35 years into the fight, the urgency of years past has faded—in large part because of the gains made through fierce AIDS advocacy. Because of antiretroviral treatment, AIDS is no longer an automatic death sentence; mothers almost never pass the virus to their newborn children; and there is a new prophylaxis, PrEP, which helps to halt transmission.
And yet African Americans are still most affected by the virus. We are still being diagnosed at higher rates and dying at higher rates than any other community, especially young, black gay and bisexual men. Compounding that, in this present moment, as AIDS activist Phill Wilson notes, “We’re getting so much thrown at us, it’s hard to concentrate on just one thing, which I think is part of the strategy.”
Yet on this World AIDS Day, we at The Root are going to bring HIV and AIDS back to the fore. We polled a bevy of AIDS activists and asked them, if they could address one thing in ending HIV and AIDS moving forward, what would it be? In short, “Where do we go from here?”
C. Virginia Fields, President and CEO, National Black Leadership Commission on AIDS: Vaccines
“As we commemorate this World AIDS Day, we celebrate the significant achievements that have been made. But what we recognize is that there is still much to be done. We do not have a vaccine. And that must be an ongoing part of the discussion. One of the noted scientists at the [National Institutes of Health] recently made a statement that we cannot eliminate the disease without a vaccine, and so vaccine clinical trials must be central to the discussion, and that’s where I want to focus my attention moving forward.”
Phill Wilson, Founder and CEO, Black AIDS Institute: Advocacy
“On this World AIDS Day, more so than in recent years, we have to be advocates, because all of the advances we’ve made over the last decade are being threatened. At the end of the day, all of the tools in the world won’t make a difference if people don’t have access to those tools. And they won’t have access to those tools if their health coverage has been taken away, or if those tools are simply not made available. And they won’t be made available if, as the Trump administration is trying to do, there are cuts being made to the [Centers for Disease Control and Prevention] and for [the HIV/AIDS Bureau], which undermines efforts to treat HIV, and if there are cuts to NIH, which undermines efforts to improve on our research efforts.”
Timothy DuWhite, Activist-Writer:
Comprehensive Social Services
“When I think about the spread of HIV and AIDS, I think of social deterrents. So what we know about what causes folks to contract HIV, a lot of it is attached to poverty. Not having money to get tested, or if you are HIV-positive, not having money for medication. So when I think about how we curb the spread of it, it’s in the work that we do around these other issues, like poverty, like access to health care, even like shelter instability. Where we go from here is not pretending that HIV ends with the contact, because if that was the case, it would have ended a long time ago.
“I was diagnosed Jan. 9, 2012. I was a senior in college. Before that, my interaction with HIV was mostly limited to the regular fears of not wanting to get it. But when I did get diagnosed, I spent a long period doing what regular folks do, thinking I was going to die, blaming myself, feeling shameful, all of these things that are, like, attributed to that moment. But after that, I started learning more and informing myself about the spread of HIV, particularly with black people, and not just HIV but other health disparities, like high blood pressure [and] diabetes. .... We have the highest transmission rate in the country, but HIV is not the only thing killing us.”
Vignetta Charles, Ph.D., CEO, ETR: Intersectional Care and Treatment
“A whole-woman/whole person focus is critical to ending the pandemic. Still too often, the programs and strategies for prevention and accessing care focus on one or two aspects of our identities and lives—like being black, or being a woman, or being a mother or not being a mother, or being cis or trans, or living in rural or urban areas, or having experiences of trauma, or having insurance, or this or that or … or … and we are all those things and so much more. Increasingly, we are beginning to see strategies that are more comprehensive—and that makes me hopeful that we can do this!
“These strategies recognize that having accurate information about sex and drugs, addressing trauma, explicitly countering racism, focusing on economic justice, understanding norms about relationships and consent, and framing/reframing our work in the context of people’s lived experiences is essential. The dissection of ourselves and lives to singular experiences or identities (as if they don’t intersect and intertwine) won’t change behaviors, nor systems.”
Monique Tula, Executive Director, Harm Reduction Coalition: Drug-Related Stigma
“It begins and ends with addressing HIV-related stigma. I work for an organization that promotes harm reduction and advocates for people who use drugs and communities affected by the war on drugs. Similar to mental-health issues, substance use is one of the things we don’t like to talk about in the black community. People who use drugs, alongside black folks, are among those who are disproportionately impacted by HIV criminalization laws. These policies promote the spread of a ‘viral underclass’ of people who are often misunderstood as those who lack the moral fortitude or ability to care about anyone other than themselves.
“The cycle of drug-related stigma reinforces stereotypes and labels, which in turn reinforces stigma, which then sets expectations about roles. People who are socially marginalized in this way are less likely to seek treatment and care when they want it and need it. It’s a series of diminishing returns that makes it difficult for drug users—or, really, any marginalized community—to break free from. As a harm reductionist, I believe that we can’t end HIV, or the war on drugs, until we change the narrative about people who use drugs. In the words of British journalist Johann Hari, ‘The opposite of addiction isn’t abstinence, it’s connection.’ The bottom line is that stigma causes shame and fear. Stigma divides. And eventually, stigma kills.”
Yolo Akili Robinson, Executive Director, BEAM:
“If I could choose one thing to concentrate on in the context of HIV/AIDS, it would be addressing the unresolved trauma and fear of the early days of the pandemic. We as black people lost generations of folks. Brothers, sisters, partners and friends. That unresolved trauma and distress has left a mark. It’s left a mark so deep that even though we have had dramatic advances in HIVAIDS treatment—that distress still keeps people from getting tested, taking care of themselves or sharing with their families.
“Even though people living with HIV/AIDS who are undetectable don’t transmit the virus, our communities speak of HIV/AIDS as if it’s 1983. Some of that is education and some of that is passed-down fear. We need to collectively grieve and process this painful history and present. We need rituals and art that helps to bring us into this moment as agents of our sexuality, our health and our futures.”
The Rev. Michael J. Crumpler, LGBTQ Intercultural Programs Manager, Unitarian Universalist Association: Social Stigma
“Stigma is the greatest obstacle to ending HIV and AIDS in the black community. Black people feel stigmatized enough just by being black in a white supremacy culture. The thought of testing HIV positive is not only dreadful as a health risk, but the social risk seems insurmountable. In a subculture that is stratified by one’s relationship to the state, HIV and AIDS is a trapdoor to the bottom tier of the black social order. Whether we be pastors, doctors, lawyers or teachers, the stain of HIV and AIDS seems to rob black people of the dignity and the respect that is otherwise due us.
“Reducing the stigma, by normalizing the experience of testing positive and managing HIV health and wellness, will repeal the guilt, fear and shame. As such, the one thing that we can concentrate on in ending HIV and AIDS is to center the experience of HIV-positive black people and share the stories of black people who are living and thriving with HIV and AIDS. In so doing, we will build solidarity amongst ourselves and restore the dignity of those among us for whom HIV and AIDS is still a death sentence.”
The struggle continues ...