Living with HIV, Having Sex Relations
By Deborah L. Shelton
ST. LOUIS POST-DISPATCH
Tell your sex partner if you have AIDS.
It seems simple. But it's not.
Twenty-five years after the first HIV cases were identified, experts say many sexual relationships still fall under the category of "don't ask, don't tell."
Many sex partners don't volunteer they are infected. And many partners don't ask.
Self-disclosure has long been vexing and emotionally charged for HIV-infected people and the health professionals who work with them.
Some studies report that as many as 50 percent of people who know they are HIV-infected don't tell their partners. A significant number of them are having unprotected sex, the studies found.
A St. Charles woman was recently charged with three felonies after allegedly having unprotected sex and not telling her partner she was infected with HIV, the virus that causes AIDS.
People living with HIV worry about possible fallout from the highly publicized case.
"When a story like that comes out, it makes all women who are HIV-positive, who are not out there trying to spread it to anybody, look bad," said a 34-year-old Illinois woman who last week attended a support group for women with HIV and AIDS. She asked the Post-Dispatch not to publish her name because of the stigma she said is associated with being infected.
The support group was run by Project ARK, a network of St. Louis health providers that delivers medical and other services to families and individuals infected, affected and at risk for HIV.
The St. Charles case was not the first locally. In 1997, an East St. Louis man, Darnell McGee, nicknamed "Boss Man," was accused of having sex with more than 100 women, some of them high school students. Authorities said he had infected at least three dozen of them.
There were about 2,500 cases of HIV and about 5,300 cases of AIDS reported in the St. Louis area through 2004, according to Missouri and Illinois health departments.
Health officials estimate about 25 percent of people who are infected don't know it.
Anger and denial
People who don't tell others they are infected fail to do so for lots of reasons. Anger is sometimes one of them.
Newly diagnosed people often go through stages of grieving, much like those experienced by dying people, some experts said. Those stages - denial and isolation, anger, bargaining, depression and acceptance - were first described by psychiatrist Elisabeth Kubler Ross.
In the anger stage, which can last days or years, some people intentionally put others at risk, in part because they feel deceived by the person who infected them, said Joan R. Ferguson, director of HIV prevention services for Community Wellness Project in St. Louis. They may never learn who gave them the virus.
"It's an emotion that people who are positive go through," Ferguson said. "That's why access to mental health services after diagnosis is so important."
She emphasized that not every infected person is out to hurt someone.
"People who are positive face anger, rejection, isolation, loss of a relationship and possible violence," Ferguson said. "Right or wrong, some people aren't willing to lose everything by telling the truth."
One support group participant, a 36-year-old St. Louis woman who moved here from California, said she didn't try to spread the virus but might have put others at risk.
"I didn't know what I was doing, but I wasn't being safe," she said. "I wasn't trying to spread it. I was in denial."
Other factors also are at play when people don't disclose.
Secrecy about HIV and AIDS is widespread. It is not uncommon for people to keep their diagnosis from friends, relatives and others because they fear their reaction.
Social worker Cheryl Nelson sees both sides of the disclosure issue. She has counseled clients who told partners they were infected but were falsely accused of not disclosing.
"After the relationships broke up, the partners told everybody in the neighborhood, filed court papers or found other ways to retaliate," said Nelson, who works for Project ARK.
'Here's the paper'
Nelson sometimes advises clients to get a sex partner to sign a statement before having sex that says they are aware of the client's HIV status.
"That's playing it safe," Nelson said. "If there's a breakup and they say, 'You never told me,' you can say, 'Here's the paper.'"
In 2003, a University City man posted fliers at barber shops, gas stations and liquor stores warning men about his ex-lover, whom he accused of having unprotected sex with him without disclosing she had HIV.
The fliers included a description of her car, how she looked, her address and a list of places where she hung out. He also was interviewed on a local radio station and TV station without identifying himself.
The woman was charged with knowingly exposing him to the virus without his knowledge or consent. A St. Louis County jury acquitted her, and she obtained an order of protection against the man, who was not infected with HIV.
Will Goldstein, the woman's attorney, said, "When the relationship ended, that's when he went after her and used her HIV status as a sword," he said.
The retaliation was devastating, Goldstein said.
"She had disclosed something very personal and had never kept her status a secret," he said. "Every time they had sex, it was protected. He chose to make a public display of her, and it really shook her world up for several years."
Goldstein said it was especially hurtful because the woman had been infected by someone who hid his status from her.
More than half the states have at least one law making it illegal to transmit HIV. The laws range from misdemeanor offenses to charges carrying a life sentence, said Lawrence O. Gostin, professor of law at Georgetown University and director of the Center for Law and the Public's Health. It is a felony in both Illinois and Missouri to knowingly expose others to the virus without their knowledge or consent.
Gostin said such laws can be difficult to enforce "because it involves law enforcement authorities trying to determine what went on in the bedroom."
There also is a question of intent, he said. "Can you prove that they knew they were infected? Did they use a condom? It's a very difficult thing to know and prove."
Nelson, of Project ARK, counsels her clients to disclose their status to sex partners and helps them figure out how and when.
"We role-play a little bit about what they would say," she said.
The prevailing view of public health officials is that all sex partners are responsible for taking precautions to avoid transmitting the virus or getting infected.
"There are extreme cases where the person disregards risks and where use of the law can be justified," Gostin said. "But these laws criminalize common behaviors that most people in the community do. People have sex all the time with varying degrees of risk - they fail to use a condom or they have AIDS and don't tell. I would rather treat it as a public health matter, and counsel people to get tested, always disclose and always have protected sex."
William C. Lhotka of the Post-Dispatch contributed to this report.