February 1, 2002
Sometimes it's hard to know how to interpret findings like this, especially when it tells you something you don't want to hear," said Meg O'Brien. She is the coordinator of a new study in which most of the HIV-positive individuals surveyed said they don't tell their casual sex partners about their status and don't use condoms.
O'Brien is an epidemiologist at LSU's HIV Outpatient Clinic and a doctoral student at Tulane. The principal investigator of the study is Patricia Kissinger, associate professor of epidemiology at Tulane. The disclosure study is part of a larger, ongoing research project sponsored by the Centers for Disease Control and Prevention. Investigators realized there was a need to look at disclosure and condom use because most previous studies of disclosure were done primarily with populations of homosexual men earlier in the epidemic, before the arrival of antiretroviral therapies.
"The demographics and the epidemiology of HIV have been changing. We're seeing more young African-American women at the clinics, so we know there's a need to look at other affected groups," O'Brien said.
The study looked at 269 people who had been diagnosed with HIV in the last five years, all patients at two clinics in New Orleans. Their ages ranged from 18 to 68. About 55 percent were male and 45 percent female. "We made it completely anonymous and completely confidential," O'Brien said. "As a consequence I think respondents felt free to say what they wanted."
Respondents were asked whether they had disclosed to a main sex partner, casual sex partner, immediate family member, other relative, friend or stranger. About 74 percent said they told their main partner and 70 percent told a member of their immediate family, but only 25 percent of those with a casual partner told the partner, and 26 percent told a friend.
"We wanted to get a picture of how many of our patients are really isolated by this disease," said O'Brien "There's a lot of evidence that people who don't tell anybody miss out on a lot of opportunities for support. That could be emotional support or it could be practical things like rides to the clinic or reminders about taking medication. We found that respondents under the age of 23, those who acquired HIV through heterosexual contact or intravenous drug use, and those who haven't been sexually active since their diagnosis were least likely to tell someone who could provide them support."
The 203 participants who had been sexually active since their diagnosis were asked about condom use in their last encounter. Of that group, 27 percent both told their partner and used a condom. Another ten percent didn't disclose but did use a condom. "Some would say that's okay," said O'Brien. "But condoms can fail. You're still putting someone at risk without their knowledge."
Twenty-three percent disclosed but did not use a condom, which may reflect that their partner is also infected. And then there are the troubling 41 percent who didn't disclose and didn't use a condom. Many in this group told researchers they thought their partner knew anyway, perhaps because the partner saw them taking their medicine or because someone else informed them.
In Louisiana, those newly diagnosed with HIV are asked to name their partners, and public health workers attempt to find them and tell them they've been exposed. "People who did not use a condom were more than twice as likely as those who used a condom to think that although they did not disclose, their partner was aware," O'Brien said. The question is whether or not the partner really does know or whether the respondent just wants to believe they do. Both parties may be indulging in what O'Brien calls "magical thinking."
"A typical scenario is a young woman who was infected by her boyfriend," she said. "She never knew he had it even though she knows he takes a lot of pills and she knows he sees the doctor frequently. She thinks it's for something else. People have an incredible capacity for denial."
They may also be tired of the safe sex message, and AIDS doesn't seem quite as scary since the development of drug therapies that allow many patients to live longer and healthier lives. But the drugs are not a cure.
"The therapies help a lot of patients but they are very expensive and really disrupt your life," O'Brien said. "They don't work for everyone and we don't know for how long they work. And people taking these drugs can still transmit the virus to others."
The bottom line is that people who don't have HIV need to insist on condom use no matter what. The study also has implications for the public health system, according to O'Brien. "We need to do a better job of counseling our patients," she said. "When people test positive for HIV, they are counseled and educated about safe sex and disclosure. But it needs to be ongoing because that message fades."
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