It’s World AIDS Day, and researchers, advocates and patients are taking measure of efforts to combat the spread of HIV. The Centers for Disease Control and Prevention reports that of the estimated 1.2 million Americans who have HIV, 86 percent are aware of their status. However, just 40 percent are receiving medical care for the virus. One barrier to treatment could be the persistent stigma that many HIV-positive people face.
And HIV disproportionately affects people of color. According to the HIV/AIDS Care Continuum:
“Deeper analysis of the HIV care continuum by CDC has also shown that there are significant health disparities related to both race and age. Among racial and ethnic groups, African Americans are the least likely to be in ongoing care or to have their virus under control. In addition, younger Americans are least likely to be retained in care or have their virus in check; HIV care and viral suppression improve with age, except among those aged 65 and older.”
At this year’s International Conference on Stigma, held recently at Howard University in Washington, D.C., health professionals, activists and HIV-positive people from around the world shared their personal stories of surviving the virus and the bias that they have suffered after being diagnosed.
At one point, activist and AIDS survivor Mary Bowman took the stage to perform her poem “Dandelion.” The piece is dedicated to her biological mother, who she said died from AIDS-related causes in 1992:
A dandelion in the midst of rose
bushes would stick out like a sore
thumb to ignorant souls
But I know the road this dandelion
This weed that all gardeners want to
destroy is more appreciated by
God than any seemingly beautiful
bush of roses.
Born and raised in the Washington, D.C., area, Bowman found out she was HIV-positive in fourth grade, when she overheard a nurse asking her stepmother — whom she calls Mom — “How long has Mary been HIV-positive?” Before that day, Bowman didn’t even know what having HIV meant.
Soon after Bowman found out, she was drawn into a conversation about Ryan White at her school. White was the Indiana teenager who became the poster child for HIV/AIDS in the 1980s after being expelled from school because of his illness.
During the discussion, Bowman decided to reveal her HIV diagnosis with the entire class: “I raised my hand and [told] them that I was HIV-positive and that I was on medicine every day,” she remembered. “My teacher called my mom and told her. Of course my mom told me that wasn’t a good idea. I could get kicked out of school and a whole slew of other things that could happen because I was HIV-positive.”
That’s when other students started treating Bowman differently. “People wouldn’t sit at the lunch table with me; they would call me nasty. It made me just want to go back to that day and not have told anybody. And so after that I stopped telling people.”
Bowman’s experience was common among those who were diagnosed in the mid-’80s and early ’90s. But Dr. Sohail Rana, director of Howard’s Pediatric Hematology and HIV Services Unit, said the ignorance around HIV persists today. He’s been treating children and teens with HIV for 30 years and warns that shunning people with the virus can have serious consequences.
“We destroy people completely when we stigmatize them,” Rana explained. “A young lady I take care of — let’s call her Katrina — she promised me that she’ll take her medication. We wrote up a contract and two weeks later she went to the movies with friends. She said, ‘I got up to go the bathroom to take my medication, and you know how us girls are, I got up and all of them got up. I went into a stall and I was checking to make sure nobody saw me take that medication. I did take it, but it almost killed me.’ She was so scared that someone would see her take that medication.”
But for every Katrina, Rana said, there many others who avoid medication and treatment for fear of being discovered and ostracized by friends and loved ones.
“The first thing people ask when you disclose is, ‘Well, how did you get it?’ ” said Maria Mejia, who has lived with HIV/AIDS for 25 years. “That’s something people with HIV hate.”
Mejia says she fled to streets as a teenager after being abused by family members and foster parents. She eventually joined a gang and started dating the group’s leader. Mejia didn’t know that he was experimenting with intravenous drugs, which how she believes he contracted the virus. She found out she was HIV-positive just before her 18th birthday.
Born in Colombia and raised in Miami, Mejia grew up in a conservative Catholic family. “When I told my mom that I was HIV-positive she said, ‘We’re going to put this in God’s hands.’ But she warned me not to tell the other family members,” Mejia recalled.
She and her mother decided to go back to Colombia. Mejia had come to terms with the notion that she was going back to that country to die. Whenever friends and family asked how she got sick, she told them she had lupus or leukemia.
Mejia tried alternative treatment during her 10 years spent in Colombia, but her HIV progressed to AIDS. That’s when she returned to the U.S. to seek medical care. Even then, she kept her illness a secret. But when her partner’s sister died from cancer, Mejia decided to start publicly disclosing her status.
“A lot of people feel compassion when a person has cancer, and rightfully so; it’s a horrible disease. But I feel like I couldn’t say, ‘I have HIV,’ and get that compassion, because immediately a judgment came with that,” Mejia said. “That made me angry, that I couldn’t say I had HIV and not feel judged or feel like the worst thing in the world. Did I deserve HIV? I don’t think anyone deserves it. None of us asked for this.”
In Kenya, many HIV-positive children and teens have lost their parents to AIDS and are taking care of themselves. “Their own families don’t want to take them in because of misconceptions about HIV and how it’s spread or because they don’t want to be shunned in their communities,” says Pauline Muchina, who works with HIV-positive youth in Nakuru, Kenya.
Her organization, The Future African Leaders Project, provides the young people with necessities like food and hygiene products. It also pays school fees and makes sure the children have the supplies they need for the classroom. And while most of their basic needs are met, many of them are left to deal with the emotional and psychological effects of living with HIV on their own.
“They get very minimal psychological help; social workers don’t have the time to come to the community and provide that,” Muchina said.
After a young man in Nakuru who suspected he was HIV-positive committed suicide, Muchina decided to take some of the youth in her program to a counselor. She said that the mental help many of them needed seemed next to impossible for them to get. “It was $30 an hour. That’s $30 an hour for someone who can’t even buy food for themselves.”
For now, the young people seek guidance from Muchina’s sister, who is a pastor, and other adults in the community. But she knows that might not be enough to help them get past their trauma.
Bowman has also dealt with mental and emotional issues. In high school she started having suicidal thoughts and began to cut herself. That’s when she started seeing a counselor at a children’s hospital. It was the first time she was able to talk about everything that had happened to her.
“My mother was a Christian, very much in the church, so everything was, ‘Take it to God and pray.’ We never really dealt with the actual effects on me,” Bowman says. “I would like to see more mental health providers available that specialize in dealing with the issues that people with HIV have.” But as she points out, even if there were more mental health services catered to the needs of those with HIV, many people don’t have insurance or the money to cover copays when they do.
“All of those babies who doctors thought were going to die, we’re adults now. We need help, we need health insurance, and we need mental health services,” Bowman said.