NEW YORK — This Dec. 1, as we mark yet another World AIDS Day without a cure, a vaccine or an intelligently interdependent global response to the crisis, I’d like to propose a thought experiment based on a radical — yet commonsense — proposition: We can end AIDS without a cure for AIDS.
After all, we have learned ways to prevent transmission between mother and child, discovered drugs that bring the viral load down to undetectable levels, and placed a critical understanding of sexual health in the hands of (some of) those who need it most. With proper funding and political will, these advantages can be replicated in every population, in every country, in every corner of the globe. Incurable is not unbeatable — as we already know from polio and smallpox.
So why haven’t we beaten AIDS?
Clearly, it’s not because we don’t need to. In the United States alone, an estimated 1.2 million people are living with HIV. Globally, it’s around 35.3 million people.
For one reason or another — because they are black or brown, gay or transgender, drug users or sex workers, and overwhelmingly because they are poor and disenfranchised — the life-or-death needs of these people do not dictate global policy or move world markets.
Because AIDS has from its very beginning been a disease of the marginalized, we have allowed it to spread like a weed through the cracks in our society. Inaction, more than transmission, is at issue here. HIV causes AIDS, yes, but the AIDS crisis is caused by stigma, oppression, discrimination and apathy. The virus is not our biggest enemy — we are.
And here, the thought experiment begins.
Currently, the popular understanding of HIV/AIDS is that it is a disease that affects certain "high-risk groups": gay men, for instance, or black women. To be sure, rates of infection among these groups are disproportionately high, as any number of depressing statistics show. According to recent figures from the Centers for Disease Control, approximately 30,000 men who have sex with men (MSMs) contracted HIV in 2010 — up a significant 12 percent from 2008.
While infection rates among black women seem to have fallen recently, they are still 20 times higher than those of white women. Such strong correlations between racial or sexual identities and infection rates suggest that this model is informative, that it is an accurate way to understand the AIDS crisis.
But these statistics conceal as much as they seem to reveal. In three distinct ways, the "risk group" approach to conceptualizing HIV actually impedes efforts to end the crisis.
• It pathologizes all people within a broad category, regardless of their actual sero-status or real likelihood of contracting HIV. Under this simplistic rubric, all gay men or black women or injection drug users are treated as likely sources of infection.
• This approach diminishes our ability to properly understand and target the real vectors for the disease by hiding them inside nearly useless categories. After all, there is nothing inherent to being a black woman that makes one more likely to contract HIV. It is the social position of black womanhood in our society that puts these women at risk, not their identities.
• By leading us to believe that these broad groupings have some causal relationship to HIV infection, this model limits our understanding of the crisis to our local context. Because we are actually dealing with correlation, not causation, these groupings do not have the same relationship to HIV in other places. Efforts to work globally — or even in different communities in America — will always be hampered by our own preconceived notions of who is and is not at risk.
But what if we flipped the lens? What if we focused more on marginalization (and its real-world effects) and less on identities? What if we understood AIDS not as a disease affecting certain types of people, but rather, as a disease that affects those living at the intersection of a constellation of conditions, such as poverty, lack of access to education, inadequate health care, stigmatized sexual practices, drug and alcohol abuse (legal or illegal) and political disenfranchisement?
This would not only reduce the stigmatization of identity groups with high rates of HIV infection, it would also allow us to tailor our health remedies to those who really are most at-risk.
For example, in a further breakdown of that statistic regarding rates of infection among MSMs, the CDC notes that the numbers of new infections among white and black MSMs were almost identical — despite the fact that non-Latino whites represent 63 percent of the U.S. population and blacks only 12 percent.
Additionally, the greatest number of infections was seen in the youngest age group. Again and again, it is those who sit at the intersection of marginalized identities — those with the least social capital and political agency — who are most at risk. We must discard generic categorical bromides in favor of health remedies targeted to their specific needs.
Further, this way of understanding the crisis would turn our attention away from prevention models based solely on behavioral change, which studies have shown are often difficult to enact in real life. Though it is tempting to isolate a single action or inaction that could stem the tide of infection, in truth, we are complex social animals whose behaviors arise from our specific circumstances and experiences. Thus, without broader contextual shifts, our actions tend to be change resistant.
For example, behavioral models routinely admonish young women with little education, no access to health care and a cultural lack of sexual agency to make difficult decisions in highly sexual situations. In an (oversimplified) metaphor, it’s like telling someone to use a condom every time they have sex — without considering where they will get the condom, who their partners are, how they will negotiate safer sex acts, what the word sex means to them and so on.
A more successful (and, to be blunt, fair) approach would be to ensure that these women are empowered to enter these situations with adequate support, knowledge and decision-making agency — things marginalized groups often lack. This requires HIV prevention efforts that also work to create political power for marginalized groups; address issues of poverty and social justice; help individuals find or prepare for meaningful employment, housing, and health care; address mental health issues — efforts, in effect, that address a client’s life circumstances as a whole.
Many, many on-the-ground service providers already work in this kind of model. But this is a long and slow process, which requires support from an informed populace and a government that sees the vital connection between civil rights, community empowerment, and HIV/AIDS.
By focusing on marginalization, not identity or behavior, we could begin to address the root causes of inequality that leave certain members of our society more at risk for experiencing any negative life or health outcome, AIDS included.
If we can stop AIDS and have chosen not to, the hard truth is that it is because certain lives don’t seem worth saving: They would cost too much, or have brought it upon themselves, or aren’t our concern or don’t even exist in our worldview. And this is what needs to change. Until we see every life as equal, we will never end AIDS.
Hugh Ryan is a freelance writer and the founding director of the Pop-Up Museum of Queer History.