An Ounce of Prevention...Where's the Pound of Cure?

Get tested. Always use a condom. Do not share needles. Protect yourself against HIV. It sounds so simple. If only it were! Each year for the past 10 years approximately 40,000 people in the United States have become infected with HIV, according to estimates from the Centers for Disease Control and Prevention. It is hard to believe that these 400,000 people had never heard about AIDS. So what happened? Why has the rate of infections stayed consistent for so long? Some might argue, as an editorial in the Chicago Sun-Times did in July 2002, that those who are now seroconverting just do not 'value their health enough to take the proper precautions to protect themselves.' But to the people who work in the prevention-education field, that sentiment reflects a lack of knowledge of human behavior. 'People think that if you tell people HIV is out there and they should use condoms to avoid it, that will be enough,' says Susan Kegeles, Ph.D., a codirector of the University of California, San Francisco, Center for AIDS Prevention Studies. 'But there has been lots and lots of research indicating that people [who] have unprotected anal sex [are doing it] because they aren't aware of the risks.' They do so'in part'because taking risks is an inherent part of human behavior. In the case of HIV, having unprotected sex does not mean you will become infected. It means you might. And that makes not using a condom a calculated risk'similar, prevention experts say, to smoking or not wearing seat belts. Even children know of those dangers, yet millions of young people and adults light up or fail to buckle up every day. An Immunity to Fear? An additional factor is that for most Americans, HIV does not seem as scary or as much of a threat as it did when lots of people were dying of AIDS complications in the United States. And in the face of this social change'as increases in sexually transmitted diseases among men who have sex with men indicate'pleasure is increasingly trumping risk. In much the same way that HIV can become resistant to antiviral medications, it is clear that individuals can and have stopped responding to the messages that encourage them to reduce their risk. 'There is a growing complacency, particularly in developed countries, and this complacency can be traced to the fact that the incidence rate now is pretty constant,' says Ralph DiClemente, Ph.D., an associate director at the Emory Center for AIDS Research in Atlanta. 'It also may be traced to recent advances in antiretroviral therapy and to a sense of hope and optimism about the advent of a vaccine.' Prevention experts say this optimism and complacency must be looked at as a challenge to be overcome, not as an indicator that prevention has done all that it can. 'You have to think of the broader context,' Kegeles says. There were 150,000 infections occurring each year at HIV's peak in the United States in the 1980s. And that means, she says, 'the kind of behavior change that has occurred is unprecedented for this short amount of time. We've been trying to change smoking habits for 50 years, and I do not think how good smoking feels compares to how good sex feels for people.' In 2001 the CDC appeared ready to face this challenge when it issued an HIV/AIDS Prevention Strategic Plan with the overarching goal of cutting the annual number of new infections in half by 2005. Putting something on paper, though, and making it happen are two different things. 'That goal was based on us having adequate resources,' explains Robert Janssen, MD, director of surveillance and epidemiology at the CDC's Division of HIV/AIDS Prevention. And with the funding that is available for prevention, he says, 'it is a real challenge to meet that kind of reduction.' A Bombardment From All Sides The people on the prevention front lines also say they are increasingly disturbed by the Bush administration's emphasis on abstinence-based education. It is a focus, they say, that not only puts politics above research but also works against the goal of lowering the infection rate. 'Abstinence?' says Jonathan Zenilman, MD, an associate professor in the Division of Infectious Diseases at Johns Hopkins School of Medicine in Baltimore. 'It's completely ridiculous. It's never been shown to work, and it's completely out of touch with what reality is. I think essentially it's depriving a large number of people from effective intervention.' Janssen says the CDC's programs 'have always said that abstinence is the best way to avoid infection' and that 'from our perspective the abstinence message isn't that different from what we have been doing for some time.' But others say they have seen a change. 'For fiscal year 2003,' says Ronald Johnson, associate executive director of Gay Men's Health Crisis, 'Mr. Bush has basically flat-funded domestic HIV intervention funds but nearly doubled the funds for abstinence-based programs.' 'This current administration is obsessed that we not do programs that promote homosexuality,' adds Kegeles. 'Research has shown that one of the major impediments to safer sex for gay men is that they believe that safer sex is boring. This means HIV prevention campaigns and materials should focus on eroticizing safer sex. But you are not allowed to do that now. The messages have to be toned down so that they fit political conservatives instead of being appropriate for trying to change behavior based on research.' A New Plan of Attack Being able to get the right messages out will be especially critical as prevention experts begin implementing programs designed specifically for HIV-positive individuals, something many researchers were initially hesitant to do. 'There was a great deal of worry about not stigmatizing people with HIV and not making them seem like evil people,' explains Kegeles. 'I think there was a lot of worry that if we started focusing on those who were positive, we would be giving ammunition to groups that really hate gay men.' Now, though, it is seen as a necessity. 'I thought that we needed to do this for a long time,' says Zenilman. 'Everyone with HIV got it from someone, and there is good data that goes back 10 years that shows that HIV-positive people keep on having sex 'and having sex often'and that their risk behaviors often don't change that much, especially after onetime counseling. In retrospect, it was a little naive of us to think that people diagnosed with HIV would stop having risky sex or only have protected sex.' To reach those who are positive, the CDC is developing prevention programs designed to teach doctors about ways to discuss risk reduction with their patients. And the need to pull doctors into prevention is clear. A study published in the journal AIDS found that 29% of 839 patients surveyed at six public HIV clinics in California said their doctor had not spoken to them about safer sex practices. About half said they had not had a conversation with their doctor about disclosing their serostatus to sex partners. The researchers also found that when health care providers did talk about these issues, they were more likely to do so with nonwhites and heterosexual men than they were with men who have sex with men. But physicians can reach only those who are receiving care, and many still are not. The CDC estimates that 30% of the people in the United States who are HIV-positive do not know that they are infected and that only 50% of those who know they are HIV-positive are linked to appropriate care and treatment. Missing Pieces of the Puzzle Another problem has been the slow dissemination of prevention research. [See PlusOutlook, 'The Implications of Connections,' in the Related Articles link, below.] Experts agree that the backbone of prevention efforts should be the programs that have been shown to be effective through rigorous research. But getting those programs to the communities that need them has been slow to occur. 'There is a lot of evidence about what works in prevention with the new challenges before us,' says John Peterson, Ph.D., an associate professor of psychology at Georgia State University. Yet only recently, he notes, 'has the CDC begun to establish dissemination packets of effective intervention programs to the health departments and community-based organizations they fund.' But even the available programs can do only so much, which is why HIV prevention appears stymied. 'Education has never been a problem,' says Zenilman. 'The knowledge base is there. The issue is translating that knowledge into action. In some cases it is difficult because people have economic problems or disincentives. If you talk to sex workers, they know about HIV prevention, but they have to keep a roof over their head. In most situations there are tremendous barriers that we still do not understand that keep knowledge from being translated into action.' And those barriers change as people change. As we begin a new year, HIV has become just another fact of life for many'both for people who lived through the worst of the epidemic and for those who have grown up in a world that has never been without AIDS. 'What we failed to take into account is that what we are looking at are very profound and complex lifestyle changes that we are recommending for the course of a person's life,' says DiClemente of Atlanta. 'Even the best-intentioned people who begin to do health-promoting behaviors may not always do them, and we are finding the same thing with HIV. We are human beings'and our best intentions sometimes fail us. And because we aren't perfect, we are still going to engage in behavior that might increase our risk for HIV infection.'