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Jun 27, 2020

Why We March For HIV-Positive Black Women And Queer Folks This Pride

On the 50th anniversary of New York City's first Pride March, the women of ACT UP/NY pen a letter explaining why HIV-positive Black women and queer folks must be centered in their movement to end AIDS.

Kena Betancur / Getty Images / Via gettyimages.com

ACT UP has been around since March 1987, and we’re still here. We’re still here because AIDS is still a problem. In the United States, in 2018, an American died of AIDS every 80 minutes. And there are still almost 40,000 HIV diagnoses in this country every year.

We could quote more depressing Centers for Disease Control and Prevention statistics, but as we prepare for this year’s Queer Liberation March for Black Lives and Against Police Brutality in New York City, we want to take a moment to not rehash ACT UP’s heyday by telling the infamous stories of St. Pat’s or the ashes demonstration on the White House lawn.

Instead, we want to use this moment as the country wakes up to the importance of Black lives to recognize that we, as a movement, must begin to focus even more on the challenges faced by ACT UP’s women and members of color over the years.

In the 1980s, it was widely believed women and people of color could not get AIDS — and it wasn’t just random people saying so. From popular magazines to the federal government, it was culturally accepted to believe that only white gay men could get HIV. In fact, the initial diagnostic criteria for AIDS didn’t even include most of the symptoms women were experiencing and dying from. And this definition wasn’t updated until 1992, right after Katrina Haslip, a Black activist for women with AIDS, passed away.

Vintage poster by Gran Fury from 1992 called "Women Don't Get AIDS. They Just Die from It" in response to the lack of women-centered HIV/AIDS work.
Manuscripts and Archives Division, The New York Public Library. / Via digitalcollections.nypl.org

Haslip was one of the main figures in the fight to change the definition. It is largely because of her efforts that the Centers for Disease Control and Prevention expanded its definition of the disease to include more illnesses that affect women with AIDS. And while it's true that being a man who has sex with men was, and still is, the biggest predictor of whether someone would get HIV, being Black has long been the second biggest predictor due to how racism, classism, and other oppressive structures only increase rates of exposure.

Over 40% of all folks living with HIV/AIDS are in the Black community, despite the Black community only accounting for about 13% of the US population. About 1 in 5 people diagnosed with HIV every year is a woman. And in fact, in some states, HIV diagnosis rates in women are rising, even as the rates for men continue to drop, but you would scarcely know women are at risk from the way the media talks about HIV.

But AIDS activists know that HIV has never been just a white gay male problem, and the CDC eventually came to understand that as well — its resources on the virus are now very good. However the vestiges of those dangerous early rumors are with us to this day. All you have to do to find proof of this is read the disclaimer in a Descovy commercial: “Descovy for PrEP has not been studied in people assigned female at birth.”

Worldwide, over half of the people living with HIV were assigned female at birth, so you’d think Gilead Sciences would be interested in the money of half of humanity, if nothing else. They’re certainly happy enough to price-gouge Americans on the other HIV and COVID-19 treatments in their stable; you know, with PrEP costing less than $100 annually in countries like Australia, but up to $24,000 per year in the US.

The lack of doctors recommending HIV testing and prevention to women and people of color is not a new problem. Despite what those very diverse commercials suggest, the vast majority of Americans currently taking PrEP is still only white men.

And there are three likely reasons for this: First, PrEP is expensive, either for the person taking it or for their insurance company; second, doctors have shown extreme reluctance to recommend and prescribe PrEP to women and people of color; and third, women and people of color are often not taken seriously by, and are therefore less likely to trust, the medical establishment. In other words, when doctors do recommend PrEP to women and people of color, we may be reluctant to listen to their advice — especially since HIV is still generally depicted as a white gay male problem in popular media.

Over the last couple of years, ACT UP has worked in coalition with other groups to get generic PrEP on the market, and, hopefully, this year, we will finally get generic Truvada. When that happens, it’ll be a huge victory, but it will only address the first of the above problems.

Without addressing the other two problems — doctors’ lack of confidence in women and people of color; women and people of color’s lack of confidence in doctors — it’s going to be difficult to curb HIV transmissions.

And without changing our society’s ideas about who can get HIV, without changing our social norms around talking candidly about HIV, progress will be slow. What we need, once we’ve finally gotten our generic PrEP, is a culture where everyone who wants PrEP is able to get it, without having to have an argument with a medical professional.

For women and people of color who are living with HIV, we need specialized research, better care, and greater respect, both from the public and from healthcare providers.

But equal access to prevention and treatment isn’t the only thing we’re fighting for. With America currently experiencing the biggest civil rights movement since the 1960s, we couldn’t just sit and watch everyone else do the work. It would be hypocritical of us to stay quiet, since so much of what we've been fighting for over the past 33 years aligns with the goals of the current movement.

We acknowledge that the struggle to end the AIDS epidemic remains inseparable from the fight against racism and racist policing. From the blatant police mistreatment of AIDS activists at the height of the epidemic to the current HIV criminalization laws in 34 states, we know how policing disproportionately affects people living with HIV.

When protests began in NYC just weeks ago, we quickly rallied to see what we could do to help. We didn’t just want to put out an empty statement about why Black Lives Matter. We wanted to do something proactive to help the fight.

And now we will continue to do so.

Last week, we held five days of Virtual Pride programming focused on sharing honest, people-centered HIV education, raising money for the Black AIDS Institute, and highlighting the work of ACT UP’s women and members of color. This week was also the launch of our #voteforharmreduction campaign. We urge everyone to begin talking to all your state and local candidates about simple policy changes that can help end the American epidemic. Our votes are still weapons. We must use them to vote for harm reduction.

Tomorrow our contingent will take to the streets to honor the lives of Black HIV-positive ACT UP alumni, including Marsha P. Johnson, Katrina Haslip, Phyllis Sharpe, and Joanne Walker, by carrying wreaths with their names. Because Black Americans not only account for over 40% of new HIV diagnoses each year, but also over 40% of deaths among people with HIV.

It's been 27 years since Katrina Haslip passed away. Haslip wasn't just a woman fighting for equal HIV treatment. She was a BLACK woman. Though women as a whole started to receive better treatment thanks to her, Black women are still being underserved.

We will speak to these truths as we march in honor of Katrina and every Black sibling who isn't here today due to all of us living in systemically racist country that we can no longer choose to ignore.


ACT UP is a diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis.

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