Just how powerful — and painful — is the stigma associated with being black and HIV positive in America?
Powerful enough for a black pastor to bury his son, but not share until much later that his child had died from HIV.
“He said, ‘I had to bury my baby and then grieve the truth by myself,’” the Rev. Keron Sadler shared with Healthline in an interview. “There’s a lot of pain out there.”
Sadler works as manager of health programs at the National Association for the Advancement of Colored People (NAACP), which in recent years has stepped up its fight against HIV. HIV impacts the African-American community more than any other broadly defined group besides gay men. Within the black community, men who have sex with both men and women are most affected.
Sadler said the pastor shared his story during a focus group she led. The NAACP began convening focus groups with faith leaders in a dozen cities in 2010, and the initiative has since been expanded to 30 cities.
“One pastor said he has buried more people with HIV than he has brought to Christ,” Sadler said.
A little over two weeks ago, the NAACP spearheaded its annual Day of Unity. For the second year in a row, the organization helped black churches in communities from coast to coast get their congregations talking about an epidemic that still is largely off-limits in many black family living rooms.
The Numbers Tell the Story
Just how prevalent is HIV among African Americans?
According to the Centers for Disease Control and Prevention:
- New HIV infections among African-Americans are eight times that of whites when considering population size.
- African-American women in 2010 became infected with HIV 20 times as often as white women.
- In 2010, 4,800 African American men who have sex with men ages 13 to 24 became infected, more than any other sub-group representing men who have sex with men.
The Black AIDS Institute offers another statistic: “If black America were its own country, it would rank 16th in the world in the number of people with HIV."
“In some of our populations among black gay men, the epidemic looks like that of a third world nation,” Debra Fraser-Howze said in an interview with Healthline.
Fraser-Howze founded the National Black Leadership Commission on AIDS in 1987, when the word “AIDS” could hardly be uttered in the African-American community. She went on to serve Presidents Bill Clinton and George W. Bush on the Presidential Advisory Council on HIV/AIDS from 1995 to 2001. She now serves as senior vice president of government and external affairs for OraSure Technologies, a maker of home HIV testing kits.
By the end of 2010, more than 260,800 African-Americans in the U.S. who had been diagnosed with AIDS had died, according to the CDC.
“Young people don’t see vulnerability to anything,” Fraser-Howze said. “And they’ve also seen the improvements that we’ve made [in HIV care]. They missed the wasting, and the brothers who were here on Monday and gone in six months.”
Clergy Cannot Fight Alone
Fraser-Howze has been involved in the fight against HIV/AIDS almost from the beginning. She can remember chatting with President Clinton in the treaty room of the White House for hours on the issue of HIV in the African-American community. She said the former president would return proposals brought by herself and other members of his AIDS advisory council with questions and detailed notes in the margins.
She says it is going to take enlisting all the leaders of the African-American community, not just clergy, to douse the wildfire of HIV infections among young black men.
She believes President Obama needs to make a statement directly to young black men. Perhaps they would listen to him, she argues. “Obama’s new to the culture, and he is the first black president of the United States,” she said.
She added that black women need to reach out to at-risk young men, too. “They need to tell them all that they love them and we can’t afford to lose another man in our community,” Fraser-Howze said.
Sadler believes President Obama and the CDC are already doing quite a bit to improve the climate of stigma. The CDC, for example, has launched several programs targeting at-risk African-Americans, including the Act Against AIDS testing campaign.
“We cannot expect the president of the United States to be the voice on all issues at all times,” Sadler said. “We as individuals have to take a responsibility for own health and get tested and know our status.”
Test, Test, Test
Fraser-Howze told Healthline she had not planned on leaving the non-profit sector for a for-profit company like OraSure. But like so many others in the African-American community, she firmly believes testing is the most important tool to fight HIV.
Since OraSure launched its home HIV test, about 400,000 units have been sold, the company told Healthline. It recently advertised its product during the Black Entertainment Television Awards recently and also operates a website geared toward black women.
Now, people who may be ashamed to publicly take an HIV test can do so with a home testing kit.
Getting tested is scary, Sadler said, even scarier than a pregnancy test, “For young ladies who have sex unprotected, buying a pregnancy test, it is the scariest thing. Will that line pop up or not? People don’t rush out for something they’re not ready to handle. HIV is a disease you will have for the rest of your life. A baby will grow up and move on.”
Sadler believes black women are difficult to reach because they so often put others before themselves and focus on the role of caregiver and nurturer. “I feel a lot of times the reason why the numbers are so high among the female demographic is because we don’t love ourselves and we look for validation from other people,” she said.
Clergy can help with getting the word out about HIV testing. Amy Nunn, a sociologist at Brown University in Rhode Island runs major initiatives targeted toward African-Americans, such as Philly Faith in Action. She enjoys sharing the story of Rev Alan Waller, a mega-church pastor who appeared on a billboard encouraging the community to get tested.
“The line wrapped around the building and we had 200 people, and it’s because the pastor told everyone to get tested,” Nunn told Healthline.
HIV and Poverty
The problem of HIV in the African-American community is amplified in poor neighborhoods with limited access to healthcare.
Both the NAACP and the Black AIDS Institute are working to break down barriers to healthcare and affect overall social justice, not just among people with AIDS. In fact, the NAACP calls its work to battle HIV the "Social Justice Initiative." The program offers resources to clergy trying to affect change in their individual communities.
The organizations are fighting to enlist as many African-American leaders as possible in the battle against HIV.
In a recent column on the Black AIDS Institute website, Sean Strub, executive director of the Sero Project, wrote about “The Four Waves of U.S. AIDS Activism.” He noted that “networks of people with HIV are on the rebound, with new and stronger national groups, like the Positive Women’s Network and the Sero Project, while local and digital networks, based on geography, shared interests, and even tenure of survival have begun to proliferate.”
Such support groups can help combat stigma, he argues. “Stigma remains the number one obstacle, and it isn’t going to be cured with a pill,” Strub said in his column.
Fraser-Howze likened unlocking the mystery of how to reach young black men to past efforts at understanding the complex social meaning of rap music.
“We’ve missed the boat on this,” she said. “We need to go back in the same way that some of us have had to do, go back and say, ‘What was the rap music saying?’ And figure out what their language is in music. How could we know?”