During the onset of the HIV/AIDS epidemic in the early ’80s, the disease was somewhat of a mystery. It seemed like no one knew where it came from. Most dubbed it as a rare form of cancer that was affecting gay men — predominantly gay white men. As the virus garnered more national headlines, activist groups began sprouting into grassroots organizations, to help raise awareness and advocate for treatment. There was Gay Men’s Health Crisis (GMHC) , which began in 1982, and AIDS Coalition to Unleash Power (ACT UP), which was founded in March of 1987. But as new discoveries were made in the medical community, by the early ’90s, the disease was affecting African Americans at more disproportionate rates than their white counterparts. It became so extreme that experts predicted if these rates of HIV continued to spike in the Black community, they feared Black people would soon become the face of the epidemic.
“The new evidence about Black mothers follows other troubling statistics about Blacks and AIDS. In New York State, Blacks are experiencing the most rapid rate of increase in new cases of AIDS. Since the epidemic began, more than 16,000 Black people have developed AIDS and 10,480 have died. Blacks are only 14 percent of the state's population, but almost 40 percent of those diagnosed with the disease in 1991,” Celia Dugger wrote for The New York Times in 1992.
Unfortunately, 26 years later, the statistics haven’t changed for the better. In 2016, the Centers for Disease Control and Prevention reported that African Americans account for 44 percent of HIV cases in the U.S., but make up only 12 percent of the total population. The subpopulation hardest hit by the epidemic have been Black men who had sex with men, which in 2016, made up 10,223 newly diagnosed infections — the highest compared to their white and Latino counterparts.Though historically AIDS was a disease often linked to white gay men, as decades pass by, it’s clear that more and more Black people are falling through the cracks.
In an effort to pay tribute to those who have fought hard for the end of the epidemic in the Black community, Blavity compiled a list of seven HIV/AIDS activists from the past and present you should know on this year’s World AIDS Day.
1. Katrina Haslip
Katrina Haslip was diagnosed with HIV in the 1980s while imprisoned at Bedford Hills Correctional Facility in New York. Haslip staunchly advocated and fought for the Centers For Disease Control and Prevention to include the symptoms that HIV/AIDS-positive women were experiencing in the definition of the virus. HIV-positive women were getting vaginal candidiasis, a yeast infection and pelvic inflammatory disease, among other infections. However, at the time, medical tests were performed mostly on men, which meant the CDC was missing concrete evidence for the types of opportunistic infections women were acquiring as a result of the virus. This in turn meant that women weren’t being treated. Ultimately, the CDC had to recognize that these various symptoms qualified as enough to classify HIV-positive women as AIDS patients in their charts, in order to have access to care.
Before her release from prison in 1990, Haslip co-founded AIDS Counseling and Education (ACE) to help other imprisoned HIV-positive women who were navigating the disease. She went on to to serve as a defendant on a case against the federal government, which assisted in changing the CDC’s definition of the virus and helped make treatment inclusive for women. She was also part of the Brooklyn Task Force on AIDS and the Upper Manhattan Task Force on AIDS.
"I am, and have been, a woman with AIDS, despite the CDC not wishing to count me,” Haslip told The New York Times. “We have compelled them to."
Soon after the CDC put plans into motion to make the definition of AIDS more inclusive, Haslip died of complications from the disease. She was only 33 years old.
2. Phill Wilson
In 1999, Phill Wilson founded The Black AIDS Institute, a nonprofit organization based in Los Angeles designed to help African Americans prevent, treat and put an end to HIV/AIDS. Well-respected and revered by other activists and policymakers, Wilson has been an essential proponent in the fight against the epidemic.
“I’ve lived with HIV for most of my life. I never expected to make it to 30, much less 60. I am of a generation that lost scores of friends and loved ones through this disease, and I was given a death sentence on more than one occasion,” Wilson said in an op-ed for NBC News in 2016.“I founded the Black AIDS Institute in 1999 because I was terrified that Black communities were being left behind,” he continued. “We were not getting information about prevention and treatment, and no one was focusing on the unique determinants of health that impact our communities.”
Wilson has also served as the AIDS coordinator for the city of Los Angeles, and later became the director of policy and planning for AIDS Project Los Angeles. Earlier this year, he announced his retirement from the Black AIDS Institute.
Ahead of #NBHAAD, @iamphillwilson announces retirement & vision to "prep for the next gen of Black #HIV/AIDS response": https://t.co/cI7nfHKL9b #blackhistorymonth #blackhealth pic.twitter.com/7ytjry9mjJ— Black AIDS Institute (@blackaids) February 6, 2018
3. Hydeia Broadbent
Hydeia Broadbent is part of the first generation of children born HIV positive. She was abandoned at birth at the University Medical Center of Southern Nevada in Las Vegas, but was later adopted at six weeks old. Since the age of six, Broadbent has been speaking openly about HIV/AIDS. In 1996, when she was just 11 years old, Broadbent appeared on The Oprah Winfrey Show to speak about her journey.
“When I turned five, I’d had symptoms of AIDS. I had fungus in my brain, blood infections, pneumonia. I went code blue a couple of times,” she told Winfrey. “That’s when I was about five — they said I was full-blown AIDS. And right now, I’m doing really good.”
In spite of going through many medical hardships, she continued to remain positive.
“If you stay in your bed, and feel sorry for yourself, and don’t get up with birds — and just sit there and say, ‘Well I’m gonna to die,’ why not get up and try to make a difference? But if you say, ‘Well, today’s another day: I can get up, I can do something,’ you [can] make something positive.” Broadbent added.
Now 34 years old, Broadbent travels nationwide for speaking engagements. She’s appeared in a slew of publications and television shows like Good Morning America, 20/20, The New York Times, Ebony, TV Guide, People and Essence, among many others.
4. Twiggy Pucci Garçon
Twiggy Garçon has been a fixture in the ballroom community in New York City and on stages nationwide for over nine years. In addition to their work in ballroom, they are also a program director at True Colors Fund, an organization devoted to ending LGBTQ youth homelessness.
It’s estimated that 1.5 to 2 million youths become homeless yearly. While there is no concrete measure on HIV rates among homeless youth, according to the American Psychological Association, homeless youth are more likely to engage in riskier sexual behaviors that can expose them to the virus. Twiggy’s activism has also led to a career in the arts. Garçon has been featured in the award-winning documentary Kiki, which is about the ballroom scene in New York City. Additionally, Twiggy serves as a consultant for Ryan Murphy’s FX series Pose. Through storytelling, and their work with the ballroom community they have spread more awareness on the HIV/AIDS epidemic.
“There can’t be a storyline about queer and trans people of color from any time period without mentioning the epidemic, and intersecting the issues that impact our communities,” Twiggy told Blavity in a phone interview. “So there’s always been an intentional part of the story to be told about our past and how that has impacted our present. You see that story very raw in Pose and you see it in Kiki, particularly because the ballroom scene has been impacted in the ’80s, ’90s and into the 2000s with HIV/AIDS.”
5. Gabriel Maldonado
Gabriel Maldonado is the CEO and founder of TruEvolution, a nonprofit organization based in Riverside, California, which is committed to fighting for HIV/AIDS health equity and prevention in communities of color.
In addition to advocating for the end and prevention of HIV/AIDS on stages nationwide, he also served on the Presidential Advisory Council on HIV/AIDS (PACHA) from 2015 to 2017. Initially implemented by Bill Clinton in 1995, PACHA is a committee designed to advise the secretary of health on new policies, recommendations and health initiatives to help prevent, treat and end the epidemic. Maldonado was appointed to serve by the Obama administration.
Unfortunately, all members of the advisory council were fired by President Trump in 2017.The Trump administration’s decision to terminate members of the advisory council highlights a bigger issue in the world of activism. While Maldonado is a young queer man of color who’s living with HIV, it’s that very identity that makes it harder for him to fight for people just like him.
“In starting a nonprofit organization, one of the things that I found was that people took ‘the white gay boy’ more seriously than they took ‘the colored boy,’” he told Blavity. “I actually had to prove that I was qualified to advocate for my own community. That’s a very challenging juxtaposition: On one end, I’m trying to liberate myself and my people. On the other hand, I’m trying to establish myself with people who don’t look like me, and prove that I am worthy of the resources to help out my people."
"You realize that the history of the movement in the ’80s and the ’90s also created a series of power structures and power dynamics where only a select few control resources of priorities or strategies or created spaces,” Maldonado added.
In spite of the marginalization that exists in the world of activism, Maldonado says he hopes more people of color will occupy positions of power in institutions they can create a direct change in for their own communities.
"There are places that bring HIV advocates together. There are places that bring advocacy of people together. But I’ve never seen a unified place where people of color are speaking on behalf of people of color for people of color, and that advocacy results in real changes to our political institutions," he said.
6. Kamaria Laffrey
Kamaria Laffrey found out she was HIV positive in 2003, when she gave birth to her daughter in Florida. Now 15 years later, Laffrey is an international HIV activist and a Florida community organizer at The Sero Project, a committee of people fighting against the stigma that encircles those affected with HIV. Additionally, she participates in speaking engagements, and advocacy work to help ensure that HIV-positive women in her area are equipped with programs they need.
“Where I live, there are not any specific programs for women of color or single moms living with HIV, but I am building relationships and gaining skills to hopefully change that,” she told Healthline.com in 2017.
7. Ken Williams
Ken Williams runs the award-winning video blog Ken Like Barbie, where he discusses living with HIV. Williams was diagnosed with the virus in 2010 at 26 years old. Since then, he’s become a well sought after activist in the field, and has participated in projects with the Centers for Disease Control and Prevention, The Black AIDS Institute, Greater Than AIDS and HIV.gov.
Ultimately, Williams’ goal is to help create a system where Black people are provided with the right resources to help combat the spread of HIV. He attributes the epidemic in the Black queer community as a result of the poor socioeconomic l conditions that often encircle the Black community.
“I think gay Black men are becoming HIV positive at alarming rates because gay Black men are still Black men, who have historically and systematically been disenfranchised in this country,” he said in an interview with amfAR, a nonprofit dedicated to supporting HIV and AIDS research. “Because health care in America is a system of privilege, and more often than not — especially in the South — access to that system is a thing of privilege.”
Now check these out: