One was named Nigel Shelby. Another Robert Rayford. Both were 15-year-old, young, queer, black men—and both died too soon.
Robert Rayford died on May 15, 1969, of a mysterious illness later identified as HIV, 13 years before the Centers for Disease Control and Prevention (CDC) first reported on the disease in its Morbidity and Mortality Weekly Report on June 5, 1981. Shortly after his passing in June, riots led mostly by transgender and queer people of color at the Stonewall Inn bar in New York City sparked the modern LGBTQ rights movement.
Half a century later in 2019, Nigel Shelby tragically died by suicide after enduring incessant, anti-gay bullying.
As we prepare to celebrate 50 years since the Stonewall riots, it's important that we take some time this month to reflect on why we celebrate and for whom we still fight.
Yes, we've made significant progress for LGBTQ people in the U.S., but Nigel's death highlights the persistent stigma associated with being LGBTQ in our society. And Robert's highlights the intractable nature of HIV-related health disparities and its consistent and disproportionate impact on queer communities of color in the U.S.
The relative anonymity of both tragedies demonstrates how little our nation's narrative includes the experiences of queer youth of color. What stories get told? Whose experiences are uplifted? These questions help us identify who is truly valued by society. Whose lives really matter?
The answers to these questions are especially pertinent in the wake of the Trump Administration's national plan to end new HIV transmissions by 2030. To succeed, we will need to invest significantly in strategies to reach individuals like Nigel and Robert, living with HIV and not, across the country, and offer expanded sexual health, mental health, and other supportive services.
Young black and Latinx queer people continue to bear the heaviest burden of the domestic HIV epidemic, mostly due to the intersection of issues like poverty and access to health services, but also because of the multiple stigmas, from racism to homophobia, biphobia and transphobia, that they so frequently face.
To see how these issues drive HIV vulnerability in queer communities of color, one need only look at the rates of pre-exposure prophylaxis (PrEP) use in the U.S. A relatively recent addition to the HIV prevention toolbox, PrEP is a prevention strategy in which a person without HIV takes a daily pill to reduce the risk of HIV acquisition by up to 92 percent. In the U.S., it's estimated that about 1.2 million people could benefit from this option, but so far only about 200,000 are. And the vast majority are white gay men.
The reason for the low rates of PrEP uptake in communities of color are myriad, but the end result is the same. Queer black and brown people are being left behind yet again, and a tool that has the potential to dramatically reduce HIV transmissions for everyone is instead the latest driver of increased disparities in our domestic HIV epidemic. We must identify ways to better inform queer people of color about PrEP and provide mechanisms to pay for it. This intervention is necessary for reaching our shared goal of ending HIV transmissions within the decade.
We have a history in our movement of remembering the names of those we've lost. We lost Robert and Nigel for the very reasons we are still fighting today. On this 50th anniversary of Stonewall, when we say their names, we remind ourselves that health equity and dignity are a part of our broader fight for equality for all LGBTQ people.
We must acknowledge the hard truths that stigma and mental health challenges too often tear us apart from the inside and out. Just ask one of us who endures bullying or HIV stigma today. So as our nation refocuses its efforts to end the domestic HIV epidemic by 2030, it's important that we shine a light on Nigel and Robert's stories and experiences, and so many others like them who have been marginalized for centuries.
Now, for the first time in the half-century since HIV claimed its first known American in Robert, we finally have tools to end the HIV epidemic in the U.S.
We know that, with treatment, people who maintain an undetectable viral load have effectively no risk of sexually transmitting the virus (undetectable equals untransmittable). We know that PrEP can dramatically reduce the risk of HIV acquisition. We know that, if the political will existed, we could ensure access to healthcare for every last person living in the U.S.
And we know that, together, we can stop HIV stigma, homophobia, biphobia, transphobia, and racism. But only if we lift up those like Robert and Nigel, and we address the needs of queer youth of color like them.
Jesse Milan Jr. is the President and CEO of AIDS United. A person living with HIV for over three decades, Milan is a recognized leader in the HIV community. He brings 30-years of executive experience in both the public and private sectors and has directed multi-million dollar budgets and staff for federal, state, local and global public health agencies. In 2002, he began a five-year term as co-chair of the Centers for Disease Control and Prevention (CDC)/Health Resources and Services Administration (HRSA) Advisory Committee on HIV and STD Prevention and Treatment (CHAC) and in 2007 was designated a Fulbright Senior Specialist in Global HIV/AIDS. Milan has also worked as a leadership development consultant with the Dorrier Underwood firm, and as a subject matter expert consultant for clients including the CDC, HRSA and the Office of HIV/AIDS and Infectious Disease Polic. He is Chair Emeritus of the Black AIDS Institute board of directors, serves on the Scientific Advisory Board for the PEPFAR and on the Dean's Advisory Council for the UNC Gillings School of Global Public Health.
Rea Carey is the executive director of the National LGBTQ Task Force. Rea has served as the Task Force's executive director since 2008 and has advanced a vision of freedom for LGBTQ people and their families that is broad, inclusive and progressive. She grounds her work solidly in racial, economic and social justice. This approach to leadership has delivered results as diverse as: winning an LGBT-inclusive federal hate crimes prevention law; defeating state anti-LGBT ballot measures; winning marriage equality, addressing discrimination against transgender people; building stronger support for fair immigration reform; and serving as a bridge between the LGBTQ and reproductive rights and traditional civil rights movements.
Views expressed in this article are the author's own.
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