'Nobody Can Save Us, But Us:' Saying The Quiet Part Out Loud 41 Years Into The HIV Crisis

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Phill Wilson (Image via Facebook)

I tested positive for HIV in the spring of 1987. I had less than 200 T-Cells, which meant I met the threshold for an AIDS diagnosis. The counselor gave me six months or so to live. There were no treatments for AIDS yet. He suggested I go home and put my affairs in order. I was 30 years old. I didn't have any "affairs" to put in order. In actuality, I probably had been living with HIV for seven years by then. My husband, Chris Brownlie, who I met in 1980, already had AIDS and was experiencing opportunistic infections. Chris died in November 1989. Last month, after celebrating 66 years and four months of life (the required age to receive full social security benefits), I received my first social security check.  

I've started writing my memoir. I've had thirty-six years and four months since that AIDS diagnosis to put my "affairs" in order. I've been thinking a lot about what it means to come of age, live through, and grow old in the age of HIV/AIDS. And more importantly, what we've learned, if anything, over the last 41 years that might be of importance to young Black gay men coming of age today in the middle of three pandemics—HIV/AIDS, COVID-19, and now, Monkeypox.

André Gide said, "Everything that needs to be said has already been said. But since no one was listening, everything must be said again.” Monkeypox has become the new Black Plague. Black and Brown gay, men who have sex with men, and/or same gender loving men represent over 50% of the current cases of monkeypox in the United States.

For someone like me, the déjà vu is traumatizing. We have a 41-year-old and counting HIV/AIDS pandemic today because people ignored the information right in front of their faces, driven by benign and malicious racism. The narrative of HIV being a white gay disease was never accurate. 

Don't buy the hype that the HIV/AIDS pandemic is over for Black people just because of medical advances that have disproportionately benefited white people. Black people and poor people are still acquiring, getting sick, and dying from AIDS in America. The disease was neither white nor gay. Even in the United States, when you look at the early data, you discover that Black people represented 25% of the pandemic in its earliest days. Black women represented over 50% of women with HIV and AIDS in the United States as early as 1986. It continues to be a case of mind over matter. They don't mind, and we don't matter. White men mattered—the fact that they were gay was cause for a pause—Black people, whether in South Africa or South Carolina, did not. 

“Don’t buy the hype that the HIV/AIDS pandemic is over for Black people just because of medical advances that have disproportionately benefited white people. Black people and poor people are still acquiring, getting sick, and dying from AIDS in America.”

— Phill Wilson

I have been living with HIV/AIDS for nearly 43 years. It has been a roller coaster for me, my communities, and the world. I've lost count of the eulogies' I've delivered, the death beds I've sat beside, the hospital rooms I've visited, or the number of times I've comforted someone after they found out they were HIV positive. I would always tell them, "It was going to be OK," even when I didn't believe it.

I know we've made a lot of advances since Michael Gottlieb identified the first AIDS cases at UCLA Medical Center in 1981. We have new diagnostic tools, new surveillance tools, new prevention tools, and new treatment tools. We can diagnose someone within the first 24 hours of exposure to the virus. We can identify the pandemic down to the zip code or census tract. We can prevent HIV transmission and HIV acquisition. We made policy advances in access and fought stigma and discrimination. At the very least, I hoped and prayed that we might have learned something—that if something else were to happen, we would know how to handle it. And then COVID-19 happened. It became painfully clear that no one was listening to our pain, tears, screams, grief, and trauma.

The parallels are scary. First, the denial, then the blaming, the slow response, the missed opportunities, and finally, the disproportionate impact on Black, other POC, and poor communities. All the earliest information about how the COVID-19 pathogen was transmitted said that Black, brown, and poor people would be disproportionately impacted. And yet, those in power did not develop strategies targeting those communities. The opposite happened. BIPOC and poor people were designated "essential workers" and sentenced to put themselves in harm's way to protect the rest of society. And again, the premature declaration of the end of the COVID-19 pandemic places us at continued risk.

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Phill Wilson, 1995 (Photograph by Dr. Ron Simmons)

We Can Save Ourselves 

That brings us to monkeypox. During the early days of the HIV/AIDS pandemic, I used to quote my grandmother—probably your grandmother too, "When white people get a cold, Black people get pneumonia."

I went to get my first monkeypox vaccination about six weeks ago in Van Nuys, California. I showed up at the pop-up vaccination station at about 10:15 in the morning. They didn't open until 11:00 am. There were already 100 people in line. They had 400 vaccines available that day. By the time I left at 3:00 pm, they had closed the line for the day. I counted less than five Black men, four or five Latino men, and maybe one Asian man getting vaccinated. Four hundred, presumably LGBTQ+ people, were vaccinated that day, and less than 3% were BIPOC. I started calling the Black HIV/AIDS organizations in Los Angeles, and none of them were offering monkeypox vaccinations.  

I received my vaccine in the San Fernando Valley. There is a county site in South Los Angeles. I know a few friends who went to get vaccinated there. According to their eyewitness accounts, there were no lines whatsoever. While my process took 4.5 hours, the South Los Angeles site took 30 minutes. The South Los Angeles site is where one would expect to reach a primarily Black population. Yet, most people vaccinated, even at that site, were white. So that tells us something that we should have learned from HIV and COVID-19.

“Nothing happens for us without us. Our survival of the middle passage, slavery, reconstruction, Jim Crow, the AIDS pandemic, the COVID-19 pandemic, monkeypox, police violence, attacks on reproductive rights, and Donald Trump will happen because we know how to save ourselves.”

- Phill Wilson

From the beginning, it was apparent who would be most at risk for monkeypox—people with a history of potential skin-to-skin contact. Think of people with a high risk of STDs and people living in close, insecure, or temporary housing situations. Young BIPOC gay men are certainly at the top of that risk pyramid. Still, I haven't seen an aggressive monkeypox prevention or vaccine campaign targeting this population. I hope I get tons of pushback disabusing me of that notion. Please, anyone, tell me just because I don't see it doesn't mean it isn't happening. Nothing would please me more than to be wrong.

We have seen some leveling off of new monkeypox acquisitions because of the significant uptake of the vaccine among white gay men. Yet, the numbers are continuing to rise among young BIPOC gay men. ​​Nationally, only 11 percent of Americans vaccinated against monkeypox are Black, but they make up 38 percent of new cases — the highest of any racial demographic, according to early September data from the Centers for Disease Control and Prevention and reporting from The Washington Post. 

So now we have three pandemics happening at the same time. If we learned anything from the HIV pandemic, it has to be these five things (in no particular order):

1. They are not going to send the lifeboats to save us.

2. Our active participation and leadership are essential for our survival.

3. The messenger matters.

4. Our lived truth is THE truth for us.

5. We can save ourselves.

Whether it is HIV/AIDS, COVID-19, Monkeypox, or reproductive health, for that matter, we are not top of mind. Even when it is in their best interest to think about us first, we continue to be an afterthought or a footnote. Positive change happens for us when, and only when, we are actively engaged in our survival or forward movement. Who tells the story determines the point of view of the story and articulates what's important and what actions need to be taken. Regardless of what the media or larger society tells us about the state of our union, we are the sole arbiters of our condition. If it's not over for us, it's not over.

We have made every advancement on behalf of Black people because of our advocacy and demands. Nothing happens for us without us. Our survival of the middle passage, slavery, reconstruction, Jim Crow, the AIDS pandemic, the COVID-19 pandemic, monkeypox, police violence, attacks on reproductive rights, and Donald Trump will happen because we know how to save ourselves.

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Editor’s Note: This special editorial from Phill Wilson appears on The Reckoning in observance of National Gay Men’s HIV/AIDS Awareness Day.