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HIV Sexual Secrecy is Deadly: don't tell
  HIV Sexual Secrecy is Deadly: don't tell
Washington Post
Nov 11, 2003
New Scientist News Service

The HIV Update
Volume 4, Number 52
November 29, 2003

Over the past decade, “unsafe” sexual practices have risen and prevention efforts stalled. And when it comes to being infected with HIV, the truth still remains shrouded in secrecy. Today, many public health experts say that failure to disclose HIV infection to partners, whether unintentionally or intentionally, is a significant but underreported factor in the continued spread of the virus in the United States.
The Centers for Disease Control and Prevention estimates that as many as 33 percent of the 900,000 Americans infected with the virus may not know it.
Dr. Robert Klitzman, a psychiatrist, and Dr. Ronald Bayer, an ethicist, both professors at Columbia, have explored the prevailing range of views and practices concerning HIV disclosure in a newly published book, "Mortal Secrets: Truth and Lies in the Age of AIDS."
Using oral history interviews, the book explores the sexual practices of 49 men and 28 women in New York City. Sixty of the subjects are HIV positive and there is diverse representation of gay men, lesbians, heterosexuals, Asians, Latinos, whites and blacks.
Dr. Klitzman said one of the most disturbing findings was that about a third of the gay men interviewed "admitted that, at some point, they lied about their status, but it is probably a higher number."
"I was horrified by some of the things people told me," Dr. Klitzman continued, "and at the end of each interview we spoke to the subjects about safer sex and the importance of disclosure. But it led us to think about the importance of a code of sexual ethics."
Although the interviews occurred from 1993 to 1996, before the advent of highly active antiretroviral therapy, experts say they believe that little has changed.
Sharon Boyd of the Michigan Department of Community Health said her current research suggested that perhaps as few as 20 percent of infected people living in Detroit had told their partners their HIV status. "Many fear that they won't have sexual partners if they do tell," she said. "Many change partners quite often and are having unprotected sex." In real life situations, of course, the practice of sexual ethics is complicated by many factors.
Dr. Bayer said, "People struggle with moral choices all of the time." "Many of the people we interviewed said that it mattered a great deal if they thought they might be harmed or rejected because of disclosure or if they felt the world was hostile or hospitable to being HIV positive," he added. "Fear and terror often shaped their decisions."
A few case studies from the Klitzman-Bayer research reveal a complex web of secrets, lies and sex. The study's participants are identified only by pseu donyms.
Ginger says she routinely discloses her status to partners, but admits that even thinking about these discussions provokes anxiety.
"Nights have gone by where I've been on a date and 'I'm going to tell him tonight,' and then I didn't tell him. But I just automatically know about myself that if I were to proceed to have sexual intimacy with him and didn't tell them, I would feel horrible for the rest of my life, whereas rejection wouldn't."
Craig, who is gay, felt that knowing a partner's status was unimportant as long as he practiced “safe” sex. "We don't exactly say it," he explained. "It's not really a say. It's a do: a condom is out on the table. You don't really discuss. Things just flow."
Another subject, Patrick, hid his bisexuality and HIV infection from his girlfriend for two years. "I finally started to come to the conclusion that I'm going to lie to her," he said. "I'm going to tell her I just found out. I think it was going to kill me, holding it in." When Patrick did tell her, he was astounded to learn that her greatest fear was that his infection would prevent them from getting married. Although she has tested negative four times, Patrick said he still worried.
Matters become even more difficult when trying to tell past sexual partners. As Nancy, 32, related in the book: "People move, especially in their 20's. I was going to college; they're going to college; phone numbers and things move."
She added: "It's not always easy to talk to an old lover, because why did you break up? I mean, there are problems there."
Mark Barnes, a lawyer and former associate commissioner of the New York City health department in the early 90's, recalled being shouted down in meetings when he urged people with HIV to disclose their status. "It's been woefully lacking in our prevention efforts, although there has been a new push by the CDC and local health departments to encourage people to disclose," Mr. Barnes said.
In the past few years, local health departments' partner notification programs have proved to be effective, some experts say."If someone from the health department comes to your door and tells you that a person you had sex or shared needles with is HIV positive, it sends a potent message," said Eve Mokotoff, chief AIDS epidemiologist for Michigan.
Disclosure can also be connected to the social acceptance of being HIV positive in a given place and time.
Thirty-five states have laws carrying criminal penalties for failing to discl ose HIV status to a sex partner.
Public policies aimed at reining in sexually transmitted diseases are frequently foiled by human behavior, say Dr. Klitzman and Dr. Bayer, the authors of the new book. Still, they add, disclosure is essential in the containment of HIV.
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