After the diagnosis

The church across the street from Paulette Hogan’s apartment has long been her rock and so have the friends she’s made there.

It was her friends from ACTS Full Gospel Church of God in Christ who prayed with her when her mother passed away. They visited her in the hospital after she had a heart attack in 1997. When Hogan needed a new apartment, the church helped her find housing in a church-owned building nearby.

Then, three years ago, Hogan discovered she was HIV-positive. Several of her closest church friends stopped talking to her. Others would no longer shake her hand or exchange hugs. Many wanted to know how she contracted HIV, and several bluntly suggested, incorrectly, that she’d been promiscuous or had used drugs.

She soon felt so out of place, she stopped going to church. “This was my family, they were my brothers, my sisters,” says Hogan, 41, a single mother of a teenage son and daughter. “One day I had this beautiful thing and the next day it was gone.” She stayed away for two years.

African American women represent just 7% of the U.S. population but account for 69% of all newly diagnosed cases of HIV and AIDS among women. While they suspect several factors, researchers can’t fully explain the disparity. Poverty is known to increase the chance of contracting HIV, and an estimated one in four black women in the U.S. live in poverty. Nearly 40% of the country’s 2.1 million prisoners are African American men and many contract HIV in prison. There is also speculation that a significant number of black men have sex with other men and continue having intercourse with women, a practice commonly known as “living on the down low.”

Health experts, patient advocates and community activists point to another factor playing an important yet largely unexplored role: the social stigma of being a black woman with HIV. Within the African American community, they say, an attitude of intolerance, denial and silence persists some 20 years after scientists first discovered HIV, the virus that is believed to cause AIDS. This attitude is undercutting government and community efforts to stop the spread of the disease: A significant number of women at high risk don’t get HIV tests or use condoms, for example. Many who know they are HIV-positive keep quiet about their illness.

“These women are very much in hiding,” says Sylvia Drew Ivie, executive director of T.H.E. Clinic in South Los Angeles, a nationally known women’s health clinic that’s currently treating about 140 HIV-positive African American women. “Many can’t tell their mothers, their friends, even their lovers.”

While there is no way to definitively show what effect reducing the stigma in the African American community would have on lowering HIV infections, Ivie and other experts say they believe it could have clear benefits. Men and women could more casually talk to one another about the diseases and its risk factors. More could get tested. And those who are sick could enter the medical system earlier, which has shown to increase survival rates.

The stigma of HIV and AIDS may be less pronounced than it was in the early 1990s, when former L.A. Lakers star Magic Johnson revealed he was HIV-positive and some players balked at playing with him, but it still has profound reach among many groups. Black women face a particularly complex set of issues: They have only recently begun contracting the virus in such large numbers and have yet to organize and talk openly about the disease, experts say. Many are also poor and have inadequate access to medical care.

Some prevention experts also believe new AIDS drugs that can reduce viral loads and many outward signs of the disease may also be giving newly infected people less reason to disclose their illness.

According to the national Centers for Disease Control and Prevention, the number of women diagnosed with HIV has remained stable in recent years, but black women are 18 times more likely to be diagnosed with the disease than white women, and five times more likely than Latinas. The leading cause of transmission among all women is heterosexual sex.

Other social pressures come into play. A report last year from Rand Corp., a research firm in Santa Monica, found that African Americans who are HIV-positive report more discrimination than whites and, as a result, are less likely to adhere to anti-retroviral treatments.

The fact that many churches won’t address the disease is also playing an important role. The African American community has long looked to the church as a central resource for information on many issues, including healthcare. But prevention experts say many pastors regularly speak out against homosexuality and IV drug use and are reluctant to discuss AIDS. The church “is still pretending like HIV doesn’t exist,” says Debra Fraser-Howze, president of the New York-based National Black Leadership Commission on AIDS.

Vickie Mays, a professor of psychology at UCLA who studies the effects of HIV on minorities, says black women often have broader social responsibilities than other high-risk groups, such as gay men, and that may be keeping many of them silent. They are also mothers, daughters, wives and grandmothers -- and they don’t want to risk upsetting relationships by talking about the disease. “These women are part of a different community. It’s a different set of rules,” says Mays.

Hogan grew up in Gary, Ind., the youngest of 14 children and became involved in church and the choir at a young age. Her mother loved jazz and gospel music, and Hogan became a fan of Ella Fitzgerald, Duke Ellington and James Cleveland. She met her first husband while still in high school, when his choir visited her church. They married when Hogan was 22. The couple soon had a son, Quincy, and later a daughter, Terralynn. The couple divorced in 1989.

Hogan got married again in 1993, to a man whom she also met through the church choir, but the relationship ended two years later. Hogan believes she was exposed to the virus through unprotected sex in a former relationship she believed was monogamous.

Sitting in her simply decorated three-bedroom apartment in the Eastmont area of Oakland, Hogan recalls how she learned she was HIV-positive in February 2001 -- and then had to tell her children. At first, Quincy, who is now 18, dropped to the floor and her daughter began sobbing. Over the next few weeks they recovered, and Hogan says her kids are now her biggest source of support.

Life outside the home has been more difficult.

Most people, she says, didn’t start pulling back immediately. It happened gradually, like a candle slowly burning out. Several neighbors would no longer look her way when she passed. Many people stopped coming by. Phone calls slowed, as did social invitations from friends and a few members of her extended family. “You could definitely feel a change in the air,” she says. “There were days when I would pick up the phone to make sure it still had a ring tone.”

More surprises came later. A mother of one of Terralynn’s friends said her daughter couldn’t play at their house anymore, fearful she’d catch the disease. Hogan once had a tight circle of a dozen female friends who would swap baby-sitting duties, cook group dinners and hit the town together on rare nights out. She’s remained friends with only two of them.

This summer, when one of Hogan’s female friends died of AIDS, the pastor at her friend’s church turned away a dozen people who showed up to hold her a memorial service, she says. The group held the service in a friend’s empty office later that day.

A few churches and community organizations are slowly trying to address the stigma around HIV. Some churches in predominantly black communities have begun AIDS ministries, which offer counseling to those with the disease and distribute prevention materials. Others, such as Lily of the Valley Baptist Church in Oakland, offer HIV testing and require couples who are getting married in the church to first be tested.

Hogan, who sees a doctor regularly and has not needed to take any AIDS medications, says she stayed at home for nearly two years after she was diagnosed and spent most of her time with her kids.

But something is changing in her, she says. Slowly, her confidence is coming back. She started dating a friend last year and the two recently got engaged. She now speaks about HIV to local community and high school groups, and views herself as an activist.

Says Hogan, “I tell people: ‘I have kids just like you. I was married just like you. I pray just like you. I am just like you.’ ”

Hogan says her biggest challenge was returning to her church last November. She didn’t want to do it quietly -- she picked the popular 8 a.m. Sunday service and sat in the front row. It worked. After spotting her, an associate minister sent her a note asking if she would sing and Hogan agreed.

Dressed in a black-and-white checked shirt, black pants and her favorite Steve Madden black-frame glasses, she walked to the red-carpeted altar and took a microphone in her right hand. She took a few seconds to say hello to the crowd of 1,500 people. “For those who don’t know, I am a woman living with HIV,” she quickly told them. “And I am glad to be home.” Hogan then began singing Donnie McClurkin’s classic gospel song, “Stand.”

What do you do when you’ve done all you can and it seems like it’s never enough? And what do you say when your friends turn away and you’re all alone? Tell me, what do you give when you’ve given your all and it seems like you can’t make it through? Well, you just stand.

A videotape of the service shows how, by the end of the song, most of the congregation was on its feet and tears rolled down Hogan’s face. The pastor cried and hugged her, and as she returned to her seat, others embraced her. To be sure, life at church hasn’t been perfect, Hogan says. Some of her friendships may have been damaged beyond repair. But things are changing.

Last month, the pastor asked her to help organize a celebration for World AIDS Day and to hand out awards to people involved in HIV-related service activities.

“Maybe,” she says, “we’re beginning to take our heads out of the sand.”