BY DR. ABDUL EL-SAYED
“Rare Cancer Seen in 44 Homosexuals” read a 1981 headline in the New York Times. Few realized that it would herald a pandemic that would become one of the greatest public health challenges in modern history.
HIV has claimed the lives of nearly 40 million people globally. Today, 1.2 million Americans and 6,840 Detroiters live with the disease – an estimated 14 percent of them unaware that they carry it. And while advances in public health and medicine have transformed the disease from a swift death sentence to a manageable, chronic ailment among those with means in countries like the United States, it remains one of the most intractable public health challenges faced by the poor and underserved in the U.S., and globally.
The theme of this year’s World AIDS day is “Getting to zero” – zero new infections, zero discrimination and zero HIV-related deaths.
Although bold, these goals are attainable. However, achieving “zero,” both here in Detroit and globally, will require us to understand and navigate three traits common to all pandemics, and particularly poignant with respect to HIV/AIDS: First, HIV disproportionately affects society’s socially and economically marginalized – being what we call “socially patterned.” Second, it has created and sustained an atmosphere of fear that has ultimately stigmatized those living with it, hampering efforts to prevent and treat the disease, alike. Third, HIV remains heavily politicized.
Among the 1.2 million Americans who live with HIV, a disproportionate number of them are men of color who have sex with men. The same is true here in Metro Detroit. Further, low education and poverty predict higher infection rates, leaving our poorest hardest hit. More troubling still, among those infected, men of color are less likely to know their HIV status. The fact that HIV affects the most marginalized – sexual minorities, people of color and the poor – has made the epidemic harder to prevent and treat.
Why? Those at greatest risk of contracting HIV are less likely to trust institutions, like hospitals, clinics and government, that are best positioned to support them because these institutions have not always been inviting or accommodating to those most likely to have the disease. This distrust hampers efforts to treat those living with HIV, and to encourage preventive strategies among those at risk. One patient I took care of at Harlem Hospital in New York during my medical training summarized it well: when asked why he had waited to get checked until his symptoms because so serious as to require ICU care, he said, “I didn’t want no doctor judging me.”
Underlying this is the deep stigma of HIV. A medical professor of mine once called HIV the “leprosy of our time.” This is because like leprosy in medieval Europe, HIV has been unfairly treated like a curse or a punishment – those living with it shunned and avoided.
Stigma about HIV has had another consequence: politicizing the disease and those who live with it. From the essential denial of the epidemic by the Reagan administration to the President’s Emergency Plan for AIDS Relief (PEPFAR), the pandemic has been shaped by politics throughout its history. Politics has controlled how money and support are allocated to HIV care and prevention. For example, recent conversations about public funding of PrEP medications – scientifically demonstrated to minimize HIV spread – have centered on whether men who have sex with men should “just protect themselves” with condoms, which are known to be less effective, although less expensive.
If we are to achieve our goals of zero new infections, zero discrimination and zero HIV-related deaths, we must counteract the roles that stigma, marginalization and politics continue to play in the evolution of the epidemic.
First, HIV has largely dropped out of our public conversation because most Americans assume that the epidemic is “over.” But 1.2 million Americans still living with HIV suggest otherwise. This belief, however, is allowed to persist because those most likely to have the disease are some of society’s most marginalized – those least likely to have a voice. Public health and medical professionals, patient advocates and activists must therefore continue to use their platform to draw public attention to the epidemic. They must focus, in particular, on the profound social equity challenges that continue to define the epidemic in its current stage.
Second, the conversation about HIV must concentrate on de-stigmatizing the disease. Those living with HIV or at risk for contracting it cannot be made to feel ashamed or unwelcome, particularly in institutions like clinics and hospitals. Rather conversations about HIV must be facilitated, both in public and private – otherwise many will continue to avoid them, and the disease will continue to spread.
Finally, the imperative for prevention must be stressed in all of these conversations about HIV. The cost of HIV prevention cannot be born on the poorest who are most likely to acquire it and least likely to afford the means of protection. Rather, eliminating new infections – and perhaps someday, eradication – is a public good in which we must all, as a society, invest.
At the Detroit Health Department, we are committed to playing our part for Metro Detroit. Building on our work through the Ryan White and Housing Opportunities for Persons with AIDS (HOPWA) programs, we plan in the coming year to build a more robust HIV/AIDS program that can support policies and programs toward achieving zero new infections, zero discrimination and zero HIV-related deaths in our community. But we are only as good as our partners – and we look forward to building and nurturing partnerships toward our shared goals: zero new infections, zero discrimination and zero HIV-related deaths.