HIV-Related Stigma Remains a Significant Obstacle to Treatment and Prevention
Newly released data show that stronger efforts are needed to ensure that HIV-positive African Americans receive the high-quality care and treatment they deserve. African Americans account for about half of the estimated 1.1 million PLWHA in the United States, according to the Centers for Disease Control and Prevention (CDC). But only 75 percent of HIV-positive Blacks were linked to care in 2010, according to a new analysis in CDC's Morbidity and Mortality Weekly Report.
About half of HIV-positive African Americans remained in care and/or were prescribed ARV medications. And only about one-third of HIV-positive Black Americans have achieved "viral suppression at a level that helps keep people healthy and reduces the risk of transmission," says Donna Hubbard McCree, Ph.D., associate director for health equity at the CDC's Division of HIV/AIDS Prevention.
Accessing Care
"Social and environmental factors such as access to care place us at higher risk than other communities," says Dr. McCree. "We have to confront these and other issues that are fueling the epidemic, such as stigma and homophobia."
"People may be afraid that they will be perceived as being gay, promiscuous, a sex worker or drug user if it is revealed that they are HIV positive. In some cases we are those things, but they are very private," said Laurel D. Sprague, research director of the Sero Project, the advocacy organization fighting HIV criminalization laws nationwide. "We want to be able to disclose on our terms—if we want to disclose."
"Stigma impacts the treatment cascade at every level," says Terrance E. Moore, director of health policy at the National Alliance of State & Territorial AIDS Directors (NASTAD). "Let's say you're a Black gay man living in a community of lower socioeconomic status. You could be very concerned that someone is going to see you walk into an HIV-testing facility. You may not access that test, which is the first line of defense. Or you could you feel your provider is not giving you adequate care after you are diagnosed. Then you are likely not to return for treatment."
Lambda Legal's 2009 survey of barriers to health care (pdf) found that 63 percent of LGBT people living with HIV/AIDS reported experiencing discrimination, including "being refused needed care and/or a health-care professional refusing to touch them or using excessive precautions." Almost 25 percent of people living in temporary emergency housing for PLWHA in New York City reported "experiencing discrimination in the health-care system due to their HIV status."
NASTAD, in partnership with the National Coalition of STD Directors, recently received assistance from the MAC AIDS Fund to quantify stigma faced by Black and Latino gay and bisexual men in public health practices. The survey results show that practices in the South and Midwest convey "high levels" of stigma, says Moore: "There is a direct correlation between socioeconomic status and laws or policies such as gay marriage and expansion of Medicaid benefits. All of these things are a [factor] when a person seeks out treatment."
The U.S. PLHIV Stigma Index is a nationwide implementation of the global PLHIV Stigma Index. Advocates in 50 nations have used the questionnaire to quantify levels of stigma. The implementation will slowly roll out nationwide beginning in Detroit in March 2014, says Sprague.
"Stigma remains a barrier to accessing health care," says Sprague, who has diagnosed about 22 years ago. "It's very difficult for me to see a doctor that I have never seen before," she says. "Sometimes I feel that I would rather go without care than go to an emergency room and not know how the doctors will respond."
Gender-Based Stigma
"My perception of being HIV positive has changed over the years. It no longer bothers me as much," says Byanca Parker, a 21-year-old Dallas woman who has become a popular HIV/AIDS activist on Facebook and YouTube. Parker was born HIV positive. "I get to educate people and change their views. But I still struggle with it."
"There are so many stigmas," she adds, "perceptions that we are going to die, cannot have children or cannot have sex. I have friends who are afraid to share their status with [a partner]. That's why I created several videos on You Tube—one of them is called 'Dating Someone Who Is HIV Positive.'"
African American women account for about two-thirds of all new infections in the U.S. Black and Latina transgender women are severely affected by the epidemic. Many HIV-positive women—especially those of color—remain particularly vulnerable to stigma, gender-based violence and trauma.
The Positive Women's Network USA released a landmark study in 2013 on gender-based stigma and violence. Among the findings: Seventy-two percent of positive women surveyed experienced intimate-partner violence, as opposed to a quarter of all women. Seventy percent had been sexually assaulted, compared with 20 percent of all women.
The tragic case of Cicely Bolden illustrates the dangers faced by many women who disclose their status. The 28-year-old Dallas woman was stabbed to death by her boyfriend, Larry Dunn, in September 2012 immediately after she disclosed. Dunn was sentenced to 40 years in prison in November 2013. So far he has not seroconverted.
Parker has experienced rejection because of her serostatus—but luckily no violence. "I am currently dating someone, and I told him straight up. He was okay with it!" she said. "But I have had problems before. Some [men] did not want to continue dating. It hurts sometimes."
Rod McCullom has written and produced for ABC News, NBC and Fox, and his writing has appeared in Ebony, The Advocate, the Los Angeles Times and many other publications. McCullom blogs on politics, pop culture and Black gay news at rod20.com.