By: Kayla Thompson, Eshe Ukweli, Serena Sonoma, and DaShawn Usher
As we continue to celebrate Black History Month, today, February 7th, we turn our focus to National Black HIV/AIDS Awareness Day (#NBHAAD). Today we commemorate and recognize the progress we’ve made in HIV prevention, treatment, and care over the last 40 years. We also highlight that, although we’ve learned so much and made enormous strides towards ending the HIV and AIDS epidemic, there is still more work to be done, especially in Black communities.
The first NBHAAD was in 1999 and began as a grassroots-education effort to raise awareness about HIV and AIDS prevention, care, and treatment in communities of color. Annual observances of NBHAAD continue to raise awareness and provide opportunities to combat stigma surrounding HIV and AIDS. NBHAAD allows us to continue to provide relevant resources to Black communities and the general public including:
- Harm Reduction Practices
- Treatment Options
- Community Engagement
“When we think about the health literacy gaps that exists for people that are living with HIV and the people that are not, relatable education remains key to the information we disseminate and how our communities receive that information,” said DaShawn Usher, Associate Director, Communities of Color, at GLAAD. “NBHAAD remains a day where we galvanize our efforts to improve how we discuss HIV, reduce HIV stigma, and look to the future of HIV research in Black communities. Two HIV prevention efforts everyone should know about are PrEP and U=U.”
Pre-exposure prophylaxis (or PrEP) is medicine taken to prevent HIV in someone who is not currently living with HIV. PrEP is highly effective for preventing HIV when taken as prescribed.
Undetectable=Untransmittable (U=U) indicates that a person living with HIV who is receiving treatment and has an undetectable viral load cannot sexually transmit HIV. Research shows that people living with HIV who were informed of #UequalsU by their health care providers reported better adherence, mental and sexual health, and viral suppression. Awareness days like NBHAAD are crucial in educating the public about HIV facts and information, such as U=U.
There is still much work to be done and numerous barriers to overcome to ensure HIV and AIDS related inequities are resolved and that Black communities have equal access to HIV prevention, testing, and treatment.
HIV Within Black Communities
While Black community leaders, activists and organizers have worked alongside our allies to reduce HIV and AIDS in our communities and mitigate the seroconversions (new HIV diagnoses), Black Americans still remain disproportionately impacted by HIV.
There are currently 1.2 million people in the U.S. living with HIV. Out of those 1.2 million people, about 475,000 of them are Black. Despite making up only 12% of the population, Black Americans account for around 43% of all people living with HIV in the United States. This disproportionate number of Black Americans living with HIV can be attributed to inadequate access to education, testing, prevention, healthcare, racism, discrimination, socioeconomic status, and a number of other risk factors and structural obstacles.
HIV in the South
If we were to focus on the biggest issues facing the Southern United States, we would find that HIV is most heavily concentrated in the Deep South compared to other regions. According to the Center for Disease Control and Prevention (CDC), 51% of all new HIV diagnoses (at any stage of the disease) occurred in the Deep South, with 8 in 10 states having the highest rates of new HIV diagnosis in the region.
Florida leads the U.S. in overall numbers of new HIV cases and has the country’s third-largest highest infection rate.
According to recent data available from the CDC’s HIV Surveillance Report, the state had a reported 4,400 new HIV infection cases in 2019, with the infection rate averaging out to 23.7 cases per 100,000 people, trailing behind only the District of Columbia and Georgia.
HIV continues to disproportionately affect transgender women, in addition to gay, bisexual, and other men who have sex with men (referred to as MSM), with Black and Brown Americans being the most impacted racial minorities. It is in part why National Black HIV/AIDS Awareness Day was created, to shed light on HIV awareness within Black communities.
“Since 1999, National Black HIV/AIDS Awareness Day has been observed to raise awareness about HIV/AIDS prevention, care, and treatment in Black communities,” said Darian Aaron, Communications Director of the Counter Narrative Project (CNP), a grantee of the GILEAD Compass Initiative, in addition to Editor-at-Large of The Reckoning.
“CNP is committed to producing narrative-shifting work on The Reckoning, our digital publication, and Revolutionary Health, our YouTube show, along with other key initiatives such as: the CNP Narrative Leadership Summit, the Narrative Justice Fellowship, and the CNP Leadership Lab. Our vision for our work is to build and elevate Black HIV movement leadership, resist structural violence, and elevate and replicate joy throughout our communities.”
According to current data from the HIV Surveillance Report:
- If current rates continue: 1 in 2 Black gay men who have sex with men will contract HIV in their lifetimes.
- 4 in 10 transgender respondents were living with HIV, with rates even higher among Black transgender women, with 61.9% of respondents being HIV-positive.
- Contributing factors for high rates in transgender women are due in part to social and economic factors – including systemic racism and transphobia.
- Over half (51%) of people in the U.S. living with HIV are aged 50 and older, and although new diagnoses are declining among this demographic, 1 in 6 HIV diagnoses were among this group. However, people over the age of 50 who have HIV are living longer, healthier lives thanks to effective HIV treatment.
- Several states have laws to criminalize people living with HIV:
- 30 states have HIV-specific criminal laws and/or sentence enhancements
- 25 states have prosecuted people living with HIV under non-HIV-specific general criminal laws
- 6 states may require registration as a sex offender as part of punishment under HIV-specific laws
GLAAD’s 2021 State of HIV Stigma, a national survey in partnership with the Gilead COMPASS Initiative measured American attitudes toward HIV and people living with HIV. According to its study, people living with HIV continue to experience stigma which is fueled by misinformation and lack of information “about the remarkable progress science and medicine have made to make HIV not only preventable, but when treated properly, untransmittable.”
The study found that less than half of Americans (48%) feel knowledgeable about HIV, down three points from a year ago, with the highest discomfort levels allocated to the South and Midwest.
It is therefore important to reduce stigma related to HIV by highlighting the stories and voices of people living with it to normalize the disease. Efforts should be focused in the Deep South where HIV has a greater presence, with the highest HIV diagnosis and death rates of any other region. Supporting community organizations in these areas can increase access to HIV testing and care as well as educate populations on HIV prevention.
Work and Organizers You Should Know
Despite the amount of work that still needs to be done, there are many activists, celebrities, community organizers, service organizations, and people living with HIV who have been advocating, pushing for and succeeding in creating greater HIV and AIDS awareness.
This NBHAAD, we want to honor the people who are doing the work for our community, who belong to our community. Battling the HIV/AIDS epidemic and effecting change takes a village, the folks featured below are fighting the good fight.
Black HIV Leaders
Due to societal stigma and structural hurdles, residing at the intersection of Black, queer, and living with HIV can be challenging. Where our healthcare, education, and political systems have failed us and turned a blind eye, Black LGBTQ+ folks have stepped in and helped fill the gaps, providing our community with much needed support and resources.
Below we’ve highlighted some of the Black leaders advocating for HIV awareness, combating stigma, and fighting for the rights and futures of every person impacted by and living with HIV.
- Tori Cooper currently serves as the Human Rights Campaign’s (HRC) Director of Community Engagement for the Transgender Justice Initiative and has been actively engaged in HIV advocacy and service for over 30 years. Her work prioritizes and highlights the challenges that the transgender community faces regarding HIV in the U.S. South. She also mobilizes empowerment, education, and opportunity as tools to prioritize and serve transgender people living with HIV.
- Matthew Rose is the Director of US Policy & Advocacy at Health GAP and an established HIV/AIDS activist. He has long worked on issues regarding how healthcare inequities and HIV affect people of color. He is also currently a member of the Board of Directors for the AIDS Treatment Activist Coalition (ATAC), where he works with other advocates to accelerate HIV research and end the HIV/AIDS epidemic.
- Carmarion D. Anderson-Harvey is the first transgender person of color to occupy a leadership role in HRC’s history. Even prior to joining the Human Rights Campaign, Carmarion worked on HIV/AIDs prevention, and founded National Black Transwomen, Inc, an organization which aims to amplify the voices of Black trans women.
- Marvell L. Terry II is an HIV/AIDS activist, community organizer, and founder of The Red Door Foundation, a non-profit that engages in advocacy efforts to address HIV/AIDS in Memphis and the Southern United States. Marvell has also published work on HIV risk behaviors and risk factors, spoken out about the importance of honoring Southern HIV/AIDS Awareness Day, and works with the Tennessee HIV Planning Group on Tennessee’s HIV/AIDS prevention efforts.
- Kenyon Farrow is a writer, editor, and strategist who currently serves as the managing director for PrEP4All. Through his work, Kenyon tirelessly advocates for health equity and preventing, treating, and mitigating the spread of HIV in the United States.
- Dr. Ron Simmons, was a scholar, community activist, and longtime advocate, role model, and mentor to Black gay men vulnerable to and living with HIV. Dr. Simmons passed away on March 29, 2020, from complications related to prostate cancer. Between 1992–2016, Dr. Simmons served as President/CEO for Us Helping Us, People Into Living, Inc. , an organization that still provides HIV prevention and support services to the African American community in the Washington, DC, area. Dr. Simmons was a strong advocate for Black men living with HIV, and he supported many people who have devoted their careers to responding to the HIV epidemic.
Dr. Ron Simmons
Black People Living with HIV and Leading HIV Awareness Efforts
In spite of the stigma surrounding HIV, structural inequities and the lack of accessible resources offered to Black communities, Black folks living with HIV have consistently shown up for their community. Black folks living with HIV have not only contributed enormously to efforts in HIV treatment and prevention, but have also done the work to fill the gaps which leave black communities more vulnerable to HIV/AIDS. Today, as a LGBTQ+ community and in global kinship, we honor all Black people living with HIV and highlight a few notable faces who are doing this work publicly.
- Stacy Jennings is an advocate, mother, poet and the co-chair of the South Carolina Positive Women’s Network (SCPWN). She has been living with HIV since 1995 and has used her diagnosis to de-stigmatize HIV and motivate and encourage others. Stacy often uses her own poetry and writing to strengthen her advocacy work.
- Bryan Jones has been living with HIV since the 1980s and works tirelessly to mobilize Ohioans to combat HIV stigma, spread awareness and advocate on HIV-related issues. He has founded a support group for men living with HIV, developed his own method for outreach and prevention when engaging communities, and fights against HIV criminalization on local, state, and national stages.
- Tammy Kinney has been living with HIV and advocating for HIV education, prevention, and treatment for around 30 years. She serves as the co-chair for the Georgia chapter of the Positive Women’s Network, is the founder of Rural Women In Action, was featured in the documentary Everyone Has a Story and works on decreasing the stigma surrounding HIV/AIDS in rural communities.
- Tiommi Luckett is a transgender woman living with HIV in Arkansas. She serves on the Community Advisory Board of The Well Project and openly shares her life and experiences living with HIV in The Well Project’s blog A Girl Like Me. Her work raises awareness faced by transgender people of color who are living with HIV in the Southern United States.
- Gracie Cartier, Black model, actress, and trans advocate recently publicly disclosed her HIV status through an essay featured in Newsweek and on the premiere of Transcend. In sharing her story of living and thriving with HIV, Gracie addressed stigma, shame, and the importance of living authentically.
- Trinity K. Bone’t is a drag superstar who publicly announced he was living with HIV on the second season of RuPaul’s Drag Race in 2014. Trinity uses his platform to act as a voice and advocate for those living with HIV, and participated in the Slay Stigma drag tour in 2019, raising awareness and encouraging people to get tested and seek treatment.
- Billy Porter is an actor, singer, author, and entertainment personality who went public with his HIV status in 2021. Porter speaks out about living with HIV and has emphasized the need to diminish the stigma and shame that are associated with the HIV/AIDS epidemic.
- Donja R. Love is a Black queer poet, playwright, and filmmaker who writes openly about people leaving with HIV, for people living with HIV. He is the co-founder of The Each-Other Project, author of play one in two, and creator of Write it Out! (WIO!), a writing program for people living with HIV. Donja also recently launched the WIO! Prize, which awards playwrights living with HIV.
- Jericho Brown is a poet, professor, and director of Emory University’s Creative Writing Program. His advocacy is amplified through his poetry as he publicly addresses his work’s engagement with racism, sex, and HIV.
- Timothy DuWhite is a Black queer writer, performance artist, and organizer living with HIV. Their work addresses topics such as queerness, racism, and HIV stigma, and his one-man show Neptune follows the journey of Wayne, a Black queer person living with HIV, as he tries to navigate both social and personal obstacles.
- Gina Brown is an advocate and community organizer working with the Southern AIDS Coalition. Gina has worked towards de-stigmatizing HIV for nearly 20 years, and has been living with HIV since 1994. She often uses her own personal testimony to raise awareness and educate others.
23 Black HIV Service Organizations You Must Know and Support
In addition to individual leaders and advocates who have dedicated themselves to fostering greater HIV/AIDS awareness and access to resources and treatment, there are numerous HIV service organizations working diligently towards the same goal.
To commemorate the 23rd NBHAAD, these are some of the Black-led organizations across the country that are doing the work and dedicating themselves to HIV/AIDS advocacy, prevention, and treatment.
A Family Affair Living Our Best Life | Orangeburg, SC
Abounding Prosperity | Dallas, TX
Aniz | Atlanta, GA
A Vision 4 Hope | College Park, GA
Beat AIDS | San Antonio, TX
Black AIDS Institute | National and Los Angeles, CA
Brotherhood Incorporated | New Orleans, LA
Griot Circle | Brooklyn, NY
Institute for the Advancement of Minority Health | Flowood, MS
Iris House | New York, NY and Plainfield, NJ
My Brother’s Keeper | Ridgeland, MS
National AIDS Education Services for Minorities | Atlanta, GA
Seeds of Healing | Wilmington, NC
Selma AIR | Selma, AL
Sister Love | International and Atlanta, GA
Women With A Vision | New Orleans, LA
Celebrities Speaking Up For The Community
In addition to Black folks, Black-led service organizations, and Black people living with HIV who are driving advocacy and awareness efforts, Black celebrities have also made efforts to speak out on behalf of the community. The celebrities below have spoken up about the importance of ensuring that resources to combat HIV are accessible for Black communities and have worked towards uplifting the voices and experiences of those living with HIV.
2022 GLAAD Media Award Nominees With Ties To HIV/AIDS Awareness
At least a dozen nominees for the 33rd Annual GLAAD Media Awards highlighted HIV awareness, ranging from Emmy winner Billy Porter to George M. Johnson’s memoir-manifesto, All Boys Aren’t Blue.
Porter, who is best known for the Emmy award winning, FX TV show, Pose, in which he portrayed the character Pray Tell, once said in an interview how the show was a “proxy for my healing” amid opening up as a person who has lived with HIV for the past 15 years.
Other nominees that address HIV/AIDS awareness include the following:
Moving Forward, Together
As we celebrate our triumphs and progress, we must also remember how far we have come and the community members and friends, brothers and sisters, we have lost along the way. We must continue supporting each other and working to end HIV stigma and ignorance, especially as it impacts Black communities.
The future of HIV prevention lies ahead and, with the promising news of early stage HIV vaccine trials on the horizon, we must believe that it is filled with an abundance of life. Our community will continue to work towards accelerating HIV/AIDS education, prevention, treatment, and de-stigmatization. We will continue to move forward together.