Fighting HIV/AIDS Stigma

Though the enormity and complexity of HIV / AIDS is more than one lesson plan can capture, Dana White has provided an in depth primer on the subject. Art by Sarah Epperson.

TABLE OF CONTENTS

Introduction

“The terms and definitions, recommended language, and historical overview here are intended to provide a basic understanding. Additional external resources should be sought for more depth and breadth of HIV knowledge. It’s in seeking a deeper and broader knowing of the epidemic and those impacted that, hopefully, you’ll find this is a fight to join.”

Dana White

Terms & Definitions

TERMS	DEFINITIONS
AIDS (Acquired Immune Deficiency Syndrome)	The most advanced stage of HIV infection. A person with HIV must have an AIDS-defining condition or have a CD4 count less than 200 cells/mm3 (regardless of whether the person has an AIDS-defining condition) to be diagnosed. There is a severe loss of the body's immunity, significantly reducing its resistance to infection.
ART (antiretroviral treatment)	A combination of drugs prescribed to treat and suppress HIV in the body, helping individuals achieve an “undetectable” viral load.
HIV (Human Immunodeficiency Virus)	The virus that can lead to acquired immunodeficiency syndrome, or AIDS, if not treated or treated improperly. HIV is a chronic condition. HIV is spread mainly by having sex or sharing injection drug tools, such as needles, with someone who is HIV-positive.
HIV Criminalization	Laws and attitudes within the justice system penalizing HIV transmission, with the burden of disclosure and prevention oftentimes falling solely on the person first carrying the virus, even when the risk of transmission is negligible.
PEP (Post-exposure Prophylaxis)	A course of antiretroviral medications (typically three of them) prescribed within 72 hours after a recent possible HIV exposure, to prevent transmission.
PrEP (Pre-exposure Prophylaxis)	An antiviral medication prescribed to prevent HIV infection in people who are at risk, most commonly Truvada. PrEP is for continued, monitored use as long as the prescribed individual feels at risk.
Stigma	Shame, negative attitudes, negative judgements, or disgrace associated with a person, condition, quality, or circumstance. HIV stigma is the pervasive shame, disgrace attributed to the virus and to those who are living with the virus, often resulting in discrimination and criminalization.
Undetectable	An HIV-positive person is said to have an “undetectable viral load, when fewer than 50 copies of HIV per milliliter of blood (<50 copies/mL) are detected by lab test. Reaching an undetectable viral load is a key goal of prescribed antiretroviral therapy (ART) and makes HIV untransmittable.
Undetectable equals Untransmittable (U equals U)	Based on scientific evidence, if an HIV-positive person is on HIV meds with a consistently undetectable HIV viral load, the HIV virus cannot be transmitted to a sex partner. The U.S. Centers for Disease Control and Prevention has said that, "People who take ART daily as prescribed and achieve and maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner."

Historical Context

From its’ recklessly publicized American onset in the early 1980s, Gay Related Immune Deficiency (GRID), which would come to be more accurately known as HIV/AIDS, was associated with life choices and sexuality seen as deviant. It’s this framing of the virus and who it impacts that would eventually veil the truth of its reach. Though it has primarily and most significantly impacted gay communities and injection drug users, particularly Black people and POC, over the years we’ve seen the virus touch the lives of people of all races, genders, sexualities, and from all walks of life. HIV/AIDS is an indiscriminate virus that has changed the way we think about sex. The whole concept and marketing of “safe sex” was, in fact, borne of the AIDS crisis.

For well over 30 years, HIV/AIDS has remained one of the most stigmatized public health concerns. As treatment and prevention tools have advanced, completely changing the trajectory and life expectancy of those living with the virus as well as reducing risk for others, HIV stigma persists.

Learn more

The world saw early on just how cruel and irrational HIV stigma is when 13-year-old Ryan White was diagnosed after a blood transfusion for hemophilia in 1984. Ryan was forced out of school because of his HIV status. With the support of his family, he faced a legal struggle for his right to attend school and became the unlikely face of the epidemic. Until he died in April of 1990, Ryan and his family devoted much of their time raising awareness of the humanity of living with the virus. White contributed so much to public discourse on the issue that, in August of that same year, the Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act, Pub.L. 101–381, 104 Stat. 576), was passed by Congress. It’s the largest federally funded program in the United States for people living with HIV/AIDS, still supporting the medical needs of many.

In November of 1991, NBA legend Earvin “Magic” Johnson’s diagnosis further pushed against the common misconception that this was just a virus of gay men and drug users. The then 32-year old said,

I plan to go on living for a long time. I’m going to be a spokesman for the HIV virus. I want young people to realize they can practice safe sex. Sometimes you’re a little naive about it and you think something like that can never happen to you. It has happened but I’m going to deal with it. My life will go on.

Johnson’s declaration that he would survive was a pivotal moment in the crisis. Yet, not the story of an NBA legend or even of a vulnerable child with hemophilia from rural Indiana has been enough to dispel pervasive HIV stigma.

Nearly four decades since the New York Times reported on the “new homosexual disorder,” it’s important to understand how the continued spread of HIV is partially due to stigma. Sex education, wearing condoms, using other prevention tools like PrEP or PEP, getting tested, seeking and staying in treatment, and disclosing one’s HIV-positive status to a potential lover are all behaviors impeded by it.

A 2017 UNAIDS report on overcoming HIV-related stigma and discrimination, titled Confronting Discrimination, explains:

Stigma towards people living with or at risk of HIV drives acts of discrimination in all sectors of society—from public officials, police officers and health-care workers to the workplace, schools and communities. In many countries, discriminatory laws and policies reinforce an environment of violence and marginalization. This stigma and discrimination discourages people from accessing health-care services, including HIV prevention methods, learning their HIV status, enrolling in care and adhering to treatment.

As the report points out, HIV stigma has influenced law. The aforementioned Ryan White CARE Act actually required that states enact laws enabling the prosecution of people living with HIV for knowingly exposing others to the virus. According to the Center for HIV Law and Policy, 34 states today have HIV-specific criminal laws or sentence enhancements.

A recent example of HIV criminalization is the case of Sanjay Johnson in Arkansas, in which Johnson faces a 30-year sentence for alleged non-disclosure during an encounter where HIV transmission was not only highly improbable at the time but is impossible to prove years later. Documents show Johnson had an undetectable viral load, when the one-time sexual encounter occurred in 2015. Previously, college wrestler Michael Johnson was sentenced to 10 years by the State of Missouri, after an appeal to his 30 year sentence for HIV non-disclosure. He has since been granted parole.

With this public health crisis forever changing the way we think about sexual risk, it also forces us to reckon with our individual sexual responsibility. As people with HIV live full lives and science advances inevitably toward a cure, we’ve been collectively remiss in our responsibility to overcome stigma that’s based in ignorance and bigotry. In a time when no one living with this virus has to die, with our deeper and expanded understanding of the epidemic, overcoming HIV stigma is one of our most crucial duties to human life.

Best practices for talking about HIV/AIDS

When speaking about HIV/AIDS or about people living with the virus, stigma is often unintentionally reinforced or perpetuated. Ending stigma and ending the epidemic begins with how we discuss it. Below is some guidance for affirming and appropriate communication about HIV/AIDS and those affected.

Say This!	Not That...
“I’m HIV-negative,” or “I don’t have HIV.”	“I’m clean,” or “I’m not sick.”
“They are living with HIV,” or “They’re HIV-positive.” *Never disclose someone’s HIV status without their consent.	"They have AIDS," or “They’re infected.” And never, “They’re dying.”
“They use condoms during sex,” or “They have condomless sex.”	“They have safe sex.” or “They have risky (unsafe) sex.”

How to get involved

For more information about how you can join the movement forward in fighting both the stigma and spread of HIV/AIDS, the following organizations and campaigns are a great place for allies to start:

Organization & Website	Mission
ACT-UP actupny.com	the AIDS Coalition To Unleash Power — a diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis.
AIDS Healthcare Foundation aidshealth.org	a global nonprofit organization providing cutting-edge medicine and advocacy to over 910,000 people in 39 countries. Currently the largest provider of HIV/AIDS medical care in the U.S.
Black AIDS Institute blackaids.org	a non-profit charitable organization founded in 1999 by Phill Wilson to promote awareness and prevent the spread of HIV and AIDS by focusing on African American communities.
Center for HIV Law & Policy hivlawandpolicy.org	a national legal and policy resource and strategy center in the United States working to reduce the impact of HIV on vulnerable and marginalized communities and to secure the human rights of people affected by HIV.
Elizabeth Glaser Pediatric AIDS Foundation pedaids.org	a nonprofit organization dedicated to preventing pediatric HIV infection and eliminating pediatric AIDS through research, advocacy, and prevention and treatment programs. Founded in 1988, the organization works in 12 countries around the world.
Greater than AIDS (Kaiser Family Foundation greaterthan.org	through targeted media messages and community outreach, Greater Than AIDS and its partners work to increase knowledge and understanding of HIV/AIDS and confront the stigma surrounding the disease, while promoting actions to stem its spread.
International AIDS Society iasociety.org	an association of HIV professionals, with 11,035 members from more than 160 countries working at all levels of the global HIV response.
National Minority AIDS Council (NMAC) nmac.org	a nonprofit organization located in Washington, D.C., leading with race to urgently fight for health equity and racial justice to end the HIV epidemic in America.
United Nations Programme on HIV and AIDS (UNAIDS) unaids.org	the main advocate for accelerated, comprehensive and coordinated global action on the HIV/AIDS pandemic.

Additional Materials

Take the discussion of HIV and its stigma into your personal network or into your local community. Until there’s a cure, we are all facing this epidemic together. Poets, playwrights, directors and other creatives have documented the history and current complex lived realities of the HIV/AIDS crisis. Many of them lost their personal battles with the virus. From the groundbreaking poetry in Ceremonies by the late Essex Hemphill to the present-day television series POSE, or the Broadway revival of Angels in America, these works can be used to guide impactful conversations with your peers, colleagues, or neighbors. Here is a short list of recommendations:

Literature

In the Life, Joseph Beam (1986)

And the Band Played On: Politics, People, and the AIDS Epidemic (1980–85), Randy Schiltz (1987)

Ceremonies, Essex Hemphill (1993)

Reports from the Holocaust: The Story of an AIDS Activist, Larry Kramer (1994)

Theatre

The Normal Heart, Larry Kramer (1985)

Angels in America, Tony Kushner (1991)

RENT, Jonathan Larson (1996)

Television

Angels in America, HBO (2003)

The Normal Heart, HBO (2014)

POSE, FX (2018 – ongoing)

Film

Philadelphia, Jonathan Demme (1993)

RENT, Chris Columbus (2005)

How to Survive a Plague, David France (2012)

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Meet the Contributor

Dana Vivian White is an Afro-Latinx, HIV-positive, non-binary writer and speaker living in Washington, D.C. They’ve provided keynotes at Wesleyan University, the 2017 Northeast Queer Trans People of Color Conference at Princeton, as well as a TEDx talk at the University of Maryland. Additionally, White has published poems with Vetch Journal, Beltway Poetry Quarterly, and Lambda Literary.