By Nyla Adams
AFRO Intern
In 2023, The National Association of People with AIDS created Zero HIV Stigma Day to be observed on July 21. The observance serves as a call to action, encouraging people to get tested, learn their HIV status, access the care they need and take action against HIV stigma.
Stigma, particularly among Black people, continues to contribute to disparities in healthcare.
“Zero HIV Stigma Day is about creating a world where people feel empowered to care for their health without fear or shame,” said Naomi Nina, a community outreach coordinator at Johns Hopkins School of Medicine’s Center for Adolescent and Young Adult Health. She added, “At our program, we emphasize this by making it simple: HIV is not the end and it does not define you.”
The day is especially vital for communities disproportionately affected by HIV, such as the Black community.
“There are still deep fears around being judged, labeled or misunderstood. In African-American communities, these fears are compounded by mistrust in the healthcare system, limited access to culturally competent services, and concerns about confidentiality, especially in tight-knit neighborhoods,” said Nina. “For young people, that fear can be magnified, especially when they feel they do not have rights to their autonomy.”
In 2023, the Centers for Disease Control and Prevention reported 4,496 deaths related to HIV, with Black people comprising 43 percent of those deaths.
“There are socioeconomic factors that contribute and are associated with HIV acquisition. One major one is poverty and limited resources,” said Dr. Maria Trent, Bloomberg professor of American Health, Pediatrics and Nursing at Johns Hopkins.
According to the CDC, in 2019, Black people accounted for over 30 percent of the HIV population, nearly three times the percentage of Black people in America.
“Thinking about HIV prevention as a community [and] public health strategy is important. I can recall having taken care of a patient many years ago–newly sexually active, [only] one partner– not someone people might think about having acquired HIV. But the reality is that experience, that early experience really shifted the rest of her life in terms of thinking about how she had to then manage her healthcare moving forward,” recalls Dr. Trent.
The National HIV/AIDS Strategy (NAHS) measured HIV stigma scores from 0 to 100, with higher scores indicating the more stigma a population has experienced. Black people were measured at 30.4 on the HIV Stigma Score in 2022.
“There may be limited access to HIV prevention education, testing and treatment options in some settings, particularly – for example – in rural areas that have high ranks of HIV. Maybe healthcare access or getting to healthcare access, your transportation and also…housing instability can also be a challenge for some people,” Dr. Trent said.
NAHS concluded in 2022 that 21 percent of Black people dealing with HIV are experiencing unstable housing or homelessness.
“I think it’s a great day to keep in mind, specifically for HIV, but also a day that opens up conversation about just healthcare and preventative access in general,” said Leo Sheridan, capacity building assistance manager at HealthHIV. “You know, we are a population that still, in some pockets, have not normalized going for preventative measures.”
HealthHIV is a national non-profit that works within healthcare organizations and communities to advance HIV, sexually transmitted infections (STIs) and LGBTQ healthcare, working to reduce harm and health inequity through education, training and advocacy.
“It’s a reminder that our health is very much in our hands to take the precautions as a population who historically has not been forward with their health care,” said Sheridan.
HIV.org has deemed this year’s Zero HIV Stigma Day’s theme as “Beyond the Label: Redefining HIV Narratives.”
HealthHIV’s Director of Communications and Marketing Marco Winkler urged people to fight the fear of stigma and get tested.
“No matter who you are—man, woman, regardless of sexuality—it’s important to go get tested.”