Chapter 10
Knowledge, Behavior, and Opinion

CONCERNS ABOUT HIV/AIDS

By the early 2000s the American public appeared less concerned about HIV/AIDS and its impact on health care than ever before. According to Gallup polling, in 1988 more than two-thirds of all Americans named AIDS as the most urgent health problem facing the country. In 1993 41% identified AIDS as the most pressing problem, and another 30% named health care costs. But in 1997 29% of poll respondents cited AIDS as the most urgent health problem, 15% named cancer, and another 15% cited health care costs.

The 2000 Gallup Poll marked the first time since 1987 that AIDS did not top the list of Americans' health care concerns. AIDS was third, trailing health care costs and cancer. In 2000 just 18% of Americans considered AIDS the most urgent health problem. Among young Americans ages thirteen to seventeen, AIDS was rated the second most urgent health problem plaguing the country. Fourteen percent of young Americans cited AIDS, while 16% named cancer the number one problem. By October 2001 AIDS had dropped even lower on the list of Americans' concerns, as they focused on the more immediate issues of the economy and unemployment, terrorism, fear of war, and national security.

Over time people have grown less concerned about personally acquiring AIDS. According to Gallup Poll Monthly, in October 1997 30% expressed some concern about getting the disease, down from 42% who felt that way in 1987. A Henry J. Kaiser Family Foundation survey conducted by Princeton Research Associates from August 14 to October 26, 2000 (still the most current data as of mid-2005), explored the attitudes, beliefs, knowledge, and opinions about HIV/AIDS. Using data provided by the Roper Center for Public Opinion Research at the University of Connecticut, the survey of 2,683 adults found only 19% of respondents "very concerned" about becoming HIV infected, and an additional 18% said they were "somewhat concerned." Thirty-nine percent of survey respondents reported that they were "not at all concerned" about becoming infected with HIV.

Some attitudes about HIV have not changed much. When asked if they were more or less concerned about a son or daughter becoming infected with HIV than they were a few years ago, 47% of respondents to the Kaiser Family Foundation survey said they were "about as concerned." A similar proportion (50%) reported that they were "about as concerned" that they themselves would become infected as they were a few years ago. The remainder was about evenly divided between feeling more concerned (22%) and less concerned (25%) about becoming infected.

KNOWLEDGE AND TOLERANCE GROW

During the more than two decades since the virus that is believed to cause AIDS was first identified, aggressive community health education and awareness programs have sought to increase the public's knowledge about HIV/AIDS. Based on the findings of the 2000 Kaiser Family Foundation survey, American adults are better informed than ever before about HIV/AIDS.

The majority of people surveyed (89%) know that there is no cure for AIDS; 88% know that there are no drugs available that cure HIV. Almost as many (79%) are aware that there is not yet a vaccine that protects against becoming infected with HIV.

In 1997 Americans were slightly more tolerant of those who contracted AIDS than they were in 1987. In 1987 43% believed that AIDS was a punishment for the decline in moral standards. In 1997 31% of those questioned felt that way. In 1997 40% of poll respondents said that people have themselves to blame if they get AIDS, down from 51% in 1987.

Further illustrating the decreasing social stigma of HIV infection, the Kaiser Family Foundation survey found that about two-thirds of respondents believed they would not be thought badly of if people found out they had been tested for HIV. Fifty-two percent said they would be "not at all concerned" that people would think less of them if it were discovered they had been tested for HIV. An additional 13% said they would not be too concerned if people found out they had been tested for HIV.

Beliefs about Preventing HIV/AIDS

One of the biggest changes in the way Americans view HIV/AIDS is reflected in the fears and misconceptions people have about catching the disease. In 1987 43% of those surveyed said that they avoided associating with people who might have HIV/AIDS; by 1997 the number had dropped to only 15%. While 28% of respondents in 1987 said that they did not use public rest rooms in order to lessen their chances of coming into contact with the virus, just 12% of those asked in 1997 agreed with the statement. And in 1997 33% of Americans polled said they would avoid elective surgery requiring blood transfusions due to concern over the blood supply in hospitals, compared with the 42% who felt that way in 1987. One of the most extreme measures of preventing the spread of HIV would be to isolate people with HIV/AIDS from the rest of society. Twenty-one percent of those polled in 1987 believed this proposal was a good idea; in 1997 only 7% did.

People who responded to the Kaiser Family Foundation survey expressed support for other measures to prevent the spread of HIV/AIDS. Fifty-eight percent favored needle exchange programs that offer clean needles to intravenous drug users (IDUs) in exchange for used needles, and 60% thought state and local governments should be permitted to use federal funds for needle exchange programs. A comparable proportion (61%) would allow IDUs to purchase clean needles from licensed pharmacists, and 60% said physicians should be able to offer IDUs prescriptions for clean needles.

Preventing the spread of HIV is important to the people surveyed. Nearly all believed that research to develop a vaccine to prevent HIV infection should be a priority of the federal government; 83% considered it very important; and 13% felt it a somewhat important government responsibility. The survey respondents were divided about the top priority for the federal government—44% favored vaccine research and 41% chose AIDS prevention and treatment.

TEEN ATTITUDES

American teens are worried about HIV/AIDS. Indeed, the majority of U.S. teens view HIV/AIDS as a serious problem for their generation. In 2000, 34% of those polled said they were very concerned about becoming infected. This finding is from the Kaiser Family Foundation's National Survey of Teens on HIV/AIDS 2000, which looks at attitudes and knowledge about HIV/AIDS in a representative sample of teens ages twelve to seventeen (as of 2005, the survey had not been repeated). The national survey also found that more African-American and Hispanic teens felt very concerned about becoming HIV infected than white teens. (See Figure 10.1.)

The overwhelming majority (more than 90%) of teens surveyed knew that sharing needles and having unprotected sex place them at risk of HIV infection. This may reflect the fact that more schools, churches, synagogues, youth groups, the media, and parents are teaching kids about HIV/AIDS and informing them about how the disease is spread. Still, not all teens are fully aware of the health behaviors that place them at risk; only 69% identified oral sex as a risk and just 41% knew that having another sexually transmitted disease (STD) increases the risk of HIV infection. (See Figure 10.2.)

Though they may be better informed because they have grown up with the HIV/AIDS epidemic, 48% of teens still wanted to know more about HIV/AIDS and how it is spread, while 55% wanted to know where to get tested for HIV. More than half (57%) of the teens surveyed wanted to learn how to protect themselves from HIV infection, and 46% wanted to know how to talk to a partner about HIV/AIDS. Slightly fewer teens (40%) wanted instruction about how to talk with their parents about HIV/AIDS, and 36% would like to learn the proper way to use condoms. (See Figure 10.3.)

African-American and Hispanic teens and teen girls of all races and ethnicities reported the highest levels of interest in learning more about HIV/AIDS. Although many teens have been touched by the epidemic—overall one in six said they knew someone who had tested positive for HIV, had AIDS, or died from AIDS—one in four African-American and Hispanic teens knew someone affected by HIV.

MISINFORMATION PERSISTS

In 1997 a random telephone poll of 1,712 adults reported at the 12th World AIDS Conference in Geneva, Switzerland, in July 1998 found that about half of American adults erroneously believe that drinking from the same glass as an HIV-positive person can transmit the virus. The study also found that about three-fourths of American adults think that immigrants, pregnant women, and others at risk should be routinely tested for HIV infection.

In 2004 these erroneous beliefs concerning HIV transmission persist, despite massive public awareness campaigns by organizations including the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).

The World AIDS Conference research also indicated that, along with incorrect ideas about how the disease is spread, the stigma surrounding HIV/AIDS might be on the rise. Twenty-nine percent thought that anyone who contracted AIDS through drug use or sex had "gotten what they deserve," up from 20% of people in 1991. Twenty-five percent of respondents believed that people with AIDS are reckless and do not care about infecting others. The percentage of those who thought HIV could be spread by a shared drinking glass actually climbed from 48% in 1991 to 55% in 1997.

Fifteen years after the disease began to spread in the United States, it was still greatly misunderstood. More than one-fourth (27%) of those surveyed said they would be less likely to wear a sweater that had been worn once by a person with AIDS, even if the sweater had been cleaned and stored in a sealed package. One-third said they would not shop in a grocery store owned by someone who had AIDS.

Of course, one cannot generalize from the data of a single small study. But the figures serve as an interesting benchmark of our general societal views and indicate how little we have progressed in our understanding of HIV/AIDS and our compassion for those who are its victims.

One explanation offered for this persisting high level of misinformation is that most HIV/AIDS education is geared toward populations at high risk and not the general population. According to Wes Kennedy, the education coordinator for the AIDS Prevention Project at the University of Texas Southwestern Medical Center in Dallas, people who do not see themselves at risk may not be as receptive to public health education. But he agrees that the fact that so many people continue to believe old myths is frightening.

HISPANICS ARE MORE AFFECTED BY HIV/AIDS

In 2003 Hispanics made up about 13% of the U.S. population but accounted for 18% of all AIDS cases cumulatively diagnosed through that year, according to the CDC. Hispanic women are seven times more likely to become HIV infected than non-Hispanic whites, and almost one in four children under age thirteen diagnosed with AIDS is Hispanic.

In May 1998 the Kaiser Family Foundation conducted a nationwide telephone survey in Spanish and English. One-half of Hispanics surveyed believed AIDS was the United States' most serious health problem, and two-thirds said that HIV/AIDS was a serious problem for someone they knew. When compared to the overall adult population, nearly twice as many Hispanics said that they were "very worried" about becoming infected with HIV (24 and 46%, respectively).

According to the survey, most Hispanics (98%) knew that HIV/AIDS is a sexually transmitted disease, and 92% were aware that a pregnant woman could pass the infection on to her baby. But only 77% knew that there is no cure for AIDS, and even fewer (68%) were aware that there is no vaccine to prevent HIV.

Jane Delgado, the president of the National Coalition of Hispanic Health and Human Service Organizations, emphasizes that prevention strategies and education approaches must be tailored to address HIV/AIDS-related problems particular to individual communities. For example, most Hispanics living in the Northeast were infected with HIV through intravenous drug use, while male to male sexual activity (MTM) was the major cause of infection among Hispanics in Florida, California, and the Southwest. Delgado also expressed the view that there is a need to adapt education and prevention materials so that people from all backgrounds can understand them.

PEOPLE WITH HIV/AIDS

Behaviors chiefly associated with increased risk for sexual transmission of HIV by infected people include unprotected sex and intravenous drug use. But therapeutic regimens for HIV infections seem to be having a positive effect. Speaking at the annual meeting of the Infectious Disease Society in San Francisco in 2002, Daniel Kaswan of the Infectious Disease Clinic at Montefiore Medical Center in New York presented the findings of a survey he and other researchers conducted in 2001. The researchers interviewed eighty men and eighty women who were HIV infected and receiving treatment at the Infectious Disease Clinic. Even among the 60% of survey participants who had been diagnosed with AIDS, 70% said their health had improved over the past year. Two other findings also surprised the researchers: most patients (70%) could accurately predict the results of their laboratory tests and even those with full-blown AIDS rated their health as good.

FAILING TO INFORM A PARTNER

Between 1994 and 1996 researchers at Boston City Hospital and Rhode Island Hospital questioned 203 HIV-infected patients receiving treatment, 129 of whom reported sexual activity in the previous six months. Four out of ten HIV-infected people surveyed at these two New England hospitals failed to tell their sex partners about their condition, and nearly two-thirds of those did not always use a condom.

Those questioned were mostly poor intravenous drug users who did not have a high school education. People with only one sexual partner were three times more likely to have told their partner than those who reported multiple partners. Predictably, those with supportive partners were more likely to disclose their HIV infection. Whites and Hispanics were three times as likely to tell their partners as were African-Americans. Of those who were sexually active, 46% were African-American, 27% were white, and 23% were Hispanic. Of those questioned, 41% were infected through intravenous drug use, 39% through heterosexual contact, and 20% through MTM contact.

Michael Stein, an associate director of the Brown University AIDS Program in Providence, Rhode Island, has noted that previous surveys of MTM produced similar findings, especially the greater likelihood that a person with one partner would admit HIV status than would a person with multiple partners. According to Stein, the problem is not one of knowledge, but of personal responsibility.

Failure to disclose HIV status or delaying telling a sex partner may be related to an HIV-infected person's social support system; those without close family, friends, and established sex partners may be less likely to reveal their HIV status. Researchers Lea Trujillo, Megan O'Brien, and their colleagues at Tulane University's School of Public Health and Tropical Medicine interviewed 269 people treated in New Orleans HIV clinics during the summer of 2000. Of the men and women surveyed, 52% were African-American and 80% reported becoming infected through heterosexual contact.

Nearly three-quarters of those with regular sex partners reported that they had disclosed their HIV infection to their partners, and 70% told their immediate families. In contrast, only one-quarter of people with casual sex partners said they had disclosed their HIV infection to their partners. Furthermore, those who did not tell their partners about their HIV infection were less likely to use condoms than those who had disclosed their HIV status to at least one casual sex partner.

Presenting the study at the October 2001 annual meeting of the American Public Health Association, O'Brien warned that people who look and feel healthy while taking antiretroviral drugs may mistakenly assume that this effective treatment is a cure. O'Brien encouraged health professionals to teach patients about the importance of disclosure and how to tell their sex partners about their HIV infection. She cautioned uninfected people that they "cannot assume partners will volunteer their HIV status" and reminded them that they must assume responsibility for practicing safe sex.