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A number of new surveys show that public and even physician attitudes about HIV infection are surprisingly misinformed two decades into the epidemic. These findings and another body of research about how HIV-infected workers continue to fear disclosure of their infection status despite protection under the Americans with Disabilities Act (ADA) may suggest that HIV stigma could have a negative impact on health outcomes because it affects decisions made by people with the disease.
"The reason people fear disclosure is revealed in a number of surveys done very recently looking at the issue of HIV and stigma," says Catherine Hanssens, a lawyer and director of the AIDS Project at Lambda Legal Defense and Education Fund in New York City.
A recent survey conducted by the Centers for Disease Control and Prevention in Atlanta found that 18.7% of 5,641 people questioned agreed with the statement, "People who got AIDS through sex or drug use have gotten what they deserve." (For a chart on the CDC survey, click here.)The survey also found that one out of four people who stigmatized HIV infection and about 40% of all those surveyed believed that the virus could be transmitted through sharing a drink with someone who is infected or through an infected person sneezing or coughing.1 HIV-stigmatizing responses were more common among men, whites, people aged 55 or older, those with incomes below $30,000 a year, those with only a high school education, and those in poorer health.
This research demonstrates that the public continues to harbor as much misinformation about how HIV is transmitted as people did a decade ago, Hanssens says. "This is complicated by the fact that studies also show that the general public has far less empathy for people with HIV than the general public did a decade ago," Hanssens adds. "Far more people believe that people with HIV who got infected got what they deserved."
The CDC study concludes that it’s important for HIV-infected people to be diagnosed and treated early because this will lead to improved health and productivity, reduced hospitalization costs, and decreased incidence of transmission of HIV by infected people who do not know their HIV status.
"However, HIV-infected persons who fear being stigmatized are typically reluctant to acknowledge risk behaviors, avoid seeking prevention information, and may experience real or perceived barriers to prevention and other health-care services," the study states.
Another recent study highlighted how the stigma, which often is extended to gay men in general, even affects physicians. Cornell University in Brooklyn, NY, asked 324 residents and faculty at a New York City teaching hospital whether they would be reluctant to perform mouth-to-mouth resuscitation (MMR) on various groups of people. This anonymous survey showed that 70%-80% of physicians said they would perform MMR on a newborn or child; 40%-50% would perform MMR on an unknown man; but only 20%-30% would perform MMR for a trauma victim or potentially gay man. A chief factor associated with MMR reluctance was a higher perceived risk of contracting HIV from MMR.2
"These are physicians who apparently are not aware of the fact that giving mouth-to-mouth resuscitation poses a barely measurable risk of HIV transmission," Hanssens says. "It’s purely theoretical and has never been documented."
When surveys like this show how even physicians are vulnerable to homophobia and misconceptions about HIV transmission, then it’s easy to understand how the general public has these same attitudes, Hanssens adds. Stigma and fear of HIV-infected people extend to the workplace, where HIV-infected employees may be risking their own health in order to keep their HIV status a secret for as long as they possibly can.
"The workplace atmosphere is not institutionalized, and that poses a problem with HIV, because too many people are taking their disability leave early, and that hurts their immune systems, because as soon as people get up and have nowhere to go in the morning, depression hits and the body goes," says James D. Slack, PhD, professor and chairman of the department of government and public service and senior scientist in the Center for AIDS Research and the School of Medicine at the University of Alabama at Birmingham.
"HIV-infected employees would rather wait until they qualify for disability leave for six months or a year, and not say anything until then," Slack explains. "Then they take their disability leave, rather than seeking reasonable accommodations that would prolong their stay at work and their lives."
AIDS advocates say it’s only natural that HIV-infected employees are wary of disclosing their infection status, given the apparent stigma and discrimination they might experience once people know they are infected. "Stigma is a very real issue for people living with HIV and AIDS," says Tanya Ehrmann, director of public policy for AIDS Action in Washington, DC.
One study of HIV-infected women found that the women were more afraid of disclosure and stigma than they were of dying.3 "It’s unfortunate that discrimination against people living with HIV/AIDS exists, particularly given all we know about transmission of the virus," Ehrmann says. "But it certainly is a very real problem." Ehrmann says that rather than blaming people with HIV/AIDS for not disclosing their status, governmental, health, and community organizations should work on making it safe for people to make that disclosure.
Slack’s research, which is expected to be published in 2001 in Policy Studies Journal and Public Administration Quarterly, suggests that workplace disclosure can even pose a challenge to HIV-infected employees in areas of the country that are generally seen as more tolerant and knowledgeable about HIV and AIDS, such as the San Francisco Bay area of California.
One HIV-infected California man Slack interviewed said it was harder for him to tell people at work about his HIV status than it was to tell anyone else in his life. When the man finally did tell his company’s personnel director, he described how he felt as though he was going to black out during the discussion. In other cases, employees told how they experienced harassment by management and co-workers after disclosing their HIV status. One man said his manager spread rumors about him at a national corporate meeting. Another man claimed to have been denied three promotions on the basis that his superiors felt that these positions would be harmful to his health.
The U.S. Supreme Court has upheld the rights of HIV-infected Americans to have some job protections under the Americans With Disabilities Act (ADA), but a pending case heard by the court and another ADA court decision have muddied the waters. "We’re waiting to hear from the court on whether the ADA is constitutional," Hanssens says.
It’s difficult to make any general statements about workplace atmospheres based on anecdotal evidence, but it’s apparent that the HIV stigma still thrives, says Ben Klein, an attorney with Gay and Lesbian Advocates and Defenders in Boston. "While there have been some gains in terms of establishing legal rights, there has been only a marginal improvement, and in my view only a very slight decrease, in the stigma attached to HIV," Klein says. "It’s really astounding how much it is still a feared and misunderstood condition on a widespread social basis."
1. Centers for Disease Control and Prevention. HIV-related knowledge and stigma — United States, 2000. MMWR 2000; 49:1062-1064.
2. Brenner BE, Van DC, Lazar EJ, Camargo CA. Determinants of physician reluctance to perform mouth-to-mouth resuscitation. J Clin Epidemiol 2000; 53:1054-1061.
3. Gray JJ. The difficulties of women living with HIV infection. J Psychosoc Nurs Ment Health Serv 1999; 37:39-43.