African American and HIV/AIDS Survey – Report
The Kaiser Family Foundation Survey of African Americans on HIV/AIDS
March 18, 1998
“The Untold Story: AIDS and Black American: A Briefing on the Crisis of AIDS among African Americans”
The HIV/AIDS epidemic has seriously challenged our Nation, calling into question many of our approaches to under-standing diseaseits prevention, treatment, and management. Part of the epidemic’s significance has been its magnitude: over 600,000 AIDS cases have been reported, including almost 65,000 1 new cases, since June of 1996, and there are an estimated 650,000 to 900,000 individuals living with HIV in the US. 2 Part of its significance has been its disparity: the HIV/AIDS epidemic is having an increasingly disproportionate impact on already disadvantaged populations, including African Americans.3
The Epidemiology of HIV/AIDS
From the time of the first reports on what would later be defined as AIDS, African Americans have been disproportionately affected. In 1982, 23 percent of the initial cases were among African Americans who represented only 12 percent of the population. 4 / 5 This disparity has continued to grow. African Americans now represent 35 percent of all reported cases and 43 percent of new cases, even though African Americans comprise only 12 percent of the US population. 6 / 7
The impact of AIDS on different subgroups of African Americans has also been striking. African American men re p resent 39 percent of new cases among men and African American women re present 60 percent of new cases among women. AIDS case rates, the number of cases relative to population size , demonstrate further this disparity. The annual AIDS case rate among African American men is 6 times that of white men (186.3 compared to 32.5 per 100,000 population); the annual AIDS case rate among African American women is 16 times that of white women (61.9 compared to 3.8 per 100,000 population ). 8Younger African Americans, including children, have also been disproportionately impacted. African American teenagers and young adults (ages 13-24) account for one third (35 percent) of reported AIDS cases in this age group. Almost two thirds (63 percent) of new pediatric cases are among African Americans. 9
Among African American women, heterosexual contact is the most common mode of transmission, accounting for 38 percent of new cases. Heterosexual contact has surpassed injection drug use as the most common transmission route among African American women, although injection drug use is still significant (32 percent of new cases and half of all cases reported). Injection drug use also plays a substantial role in HIV transmission among African American men, more so than among men in general. Thirtyone percent of new AIDS cases among African American men are due to injection drug use, compared to 23 percent of all men and 11 percent of white men. Sex with men is also a significant transmission route accounting for 32 percent of new cases among African American men. 10
The above trends in reported AIDS cases re present only the tip of the iceberg: if HIV infections, not just AIDS cases, are counted, the numbers are staggering. HIV disease progresses along a continuum from initial infection to a diagnosis of AIDS at an advanced stage of illness. Therefore , the number of individuals with HIV infection greatly exceeds reported AIDS cases. Trends in newly reported AIDS cases reflect more significant underlying patterns in the transmission and epidemiology of HIV.
The Health Gap And Access To Care
Recent treatment advances, particularly the increasing availability of effective drug therapies for AIDS-related opportunistic infections (OIs) and the introduction of new drugs which combat HIV (e.g., protease inhibitors), have positively impacted individuals infected with HIV. Treatment advances have led to some optimism about the future of the epidemic. For example, AIDS-related mortality appears to be dropping as many people are living longer with HIV. However, this drop has not been occurring at the same rate for all populations. Whereas the number of AIDS deaths in 1996 as compared to the previous year declined by 32 percent among whites, the decline was only 2 percent among African Americans. 11
The differential impact of HIV/AIDS on African Americans should be considered within a broader context: there continues to be a health gap between African American and white Americans in general, as shown by the HIV epidemic as well as other health indicators. 12
These disparities in health outcome may reflect differential access to health care services. For example, the estimated AIDS-opportunistic- illness incidence among African Americans is greater than that among whites, although whites still account for more AIDS cases. 13
In fact, preliminary data from the nationally representative HIV Cost and Services Utilization Study (HCSUS) of people with HIV indicate that African Americans are significantly less likely to receive prophylaxis for Pneumocystis Carinii Pneumonia, an AIDS-related opportunistic infection which is preventable yet still accounts for a significant number of new AIDS diagnoses.14
African Americans’ Perceptions Of The HIV/AIDS Epidemic
Given the disproportionate impact of AIDS on African Americans, it is important to examine African American perceptions of the epidemic. What do African Americans think about HIV/AIDS? What are African Americans’ attitudes toward and knowledge of the epidemic? Do these differ from the opinions and perceptions of Americans in general?
From the beginning, the AIDS epidemic has evolved in a climate of strong public opinion. Attitudes and perceptions have shaped not only national and local policy priorities (such as public health endeavors, federal spending decisions and the roles of various institutions) but also the experiences of individuals confronting HIV/AIDS in their own lives . These decisions and experiences, in turn, have shaped what Americans think about issues ranging from HIV/AIDS in particular to public health and disease prevention in general.
Research has been done over time to capture these public sentiments and to measure HIV/AIDS related knowledge and information among Americans overall , including the Kaiser Family Foundation Survey of Americans on HIV/AIDS in 1995 and 1997. 15
Surveys have sought to characterize personal perceptions and worry about HIV/AIDS; understanding of the transmission, course and treatment of HIV and AIDS; attitudes towards testing for HIV; impressions of community and government efforts in fighting the epidemic; and sources of information about HIV/AIDS. Researchers have tried to gauge the role of public opinion and knowledge in shaping the nation’s response to the epidemic as well as the course of the epidemic itself.
Less well characterized is public opinion and knowledge among minority groups, whose views are often overshadowed in surveys of the population at large. Racial and ethnic minorities, for example, are usually sampled in proportion to their numbers with respect to the total American population. While these surveys provide important information about African Americans, they rarely have sample sizes sufficient for detailed analysis. The importance of understanding public opinion and knowledge in the African American community is underscored by the disproportionate impact of the epidemic on this population. Therefore, the Kaiser Family Foundation decided to survey a large sample of African American adults to examine their views and concerns about HIV/AIDS today.
The Kaiser Family Foundation National Survey of African Americans on HIV/AIDS sheds light on the knowledge, values and beliefs of a large sample of African American adults with respect to HIV and AIDS in this country. It describes the perceptions and attitudes of African Americans, as well as subgroups within the African American community including women, young adults, parents, opinion leaders, and those with less education and lower incomes. The survey covers an important period in the fight against HIV/AIDS, especially for African Americans: the potential optimism offered by new drug treatments contrasts with the increasing impact of HIV/AIDS on African Americans. Our hope is that the findings from this survey might inform a better understanding of public knowledge and perspectives among African Americans on this important issue and contribute to more effective efforts of all those working to reduce the social, economic, and individual costs of the AIDS epidemic.
HIV/AIDS Is Seen By African Americans As An Urgent Health Problem Facing The Nation And Local Communities Today
There is a strong sense of urgency about AIDS among African Americans. Over half of African Americans rate AIDS as the most urgent health problem facing the nation today (52 percent), rating it well above cancer (36 percent), heart disease (13 percent) and problems related to health care costs and health care coverage (11 percent). By comparison, 38 percent of the national sample of all Americans 16 say that AIDS is the most urgent health problem today, tying it with cancer (also 38 percent) and ahead of heart disease (16 percent). The disparity in impressions may reflect reality; among African Americans, AIDS is a more acute health problem. Two in five new cases of AIDS among adults and one in three new pediatric cases are African American.
Three in five African Americans (58 percent) also see AIDS as a more urgent problem for the country today than just a few years ago. Although many African Americans believe that the country is making progress in addressing the problem of AIDS (45 percent), African Americans are more likely than all Americans to believe the country is losing ground (36 percent compared to 27 percent).
Many more African Americans also see AIDS as a problem close to home and view AIDS with growing local concern. Forty-four percent say AIDS is a more urgent problem for their communities today than it was even a few years ago, (as compared to 25 percent of all Americans). Just 17 percent of African Americans say AIDS has never been a problem in their local community, (as compared to 25 percent of all Americans).
AIDS disproportionately touches not only African Americans’ communities but also their individual lives. A majority (56 percent) says AIDS is a very serious problem for people they know and almost one in two (49 percent) knows someone who has AIDS, has died of AIDS, or has tested positive for HIV. In contrast, a third of all Americans (34 percent) says AIDS is very serious for people they know and a third (35 percent) reports knowing someone who has AIDS, has died of AIDS, or has tested positive for HIV.
African Americans Are Very Concerned About HIV/AIDS Personally, Both For Themselves And For Their Children
There is also a greater sense of personal worry about AIDS in the African American community, with one in two African Americans (50 percent) saying that they are very concerned about becoming infected with HIV, a proportion twice that of all Americans (24 percent). African Americans also say their concern is growing: forty percent of African Americans report being more concerned about becoming infected with HIV today than they were a few years ago (27 percent of all Americans are more worried today). These findings may reflect the disproportionate rate of infection among African Americans: 43 percent of all new cases.
The heightened worry of African Americans may be reflected in the finding that fifty-six percent of those surveyed have been tested for HIV, including 35 percent in the last year. Among 18-29 year olds, two thirds have tested, one-third has not (by comparison, 51 percent of all Americans aged 18-29 have tested, 49 percent have not).
While the rate of HIV testing among African Americans is relatively high, there is misunderstanding among some about the appropriate timing of HIV tests. One in five African Americans (20 percent) incorrectly states that HIV tests can accurately determine whether someone has been infected with HIV within one week or between one week and one month after possible exposure. Another 20 percent says they don’t know when the tests could accurately determine whether or not someone has been infected with HIV.
Among African Americans who have not been tested for HIV, the reason given by most for not getting tested is that they a re married or in a monogamous relationship (40 percent); a quarter (25 percent) says, “I’m not sexually active.” Epidemiological trends also suggest strong reasons to be concerned about HIV infection among young African Americans. And, indeed, African Americans are particularly worried about their children. Two thirds (68 percent ) of African American parents are very concerned about their children becoming infected with HIV, a concern they say has grown over the last few years.
The Role Of Individuals, Community Groups And Local, State And Federal Governments
African Americans, like all Americans, have mixed feelings about the role played by local community groups in the fight against AIDS. About one in two African Americans feels that local public schools (49 percent) and local churches (54 percent) care “a lot” about the fight against AIDS; three in five (61 percent) say local health care providers care a lot. But “caring” doesn’t always translate into “doing , ” according to African Americans. Only two in five (40 percent) see the health care community (doctors, health clinics and hospitals) actually doing “a lot” in the fight against AIDS. Fewer about one quarter think local public schools and community churches are actively helping a lot.
The perception among African Americans that nobody is doing a lot in the fight against AIDS is seen even more clearly in assessments of local, state and federal governments. Very few African Americans think that government (whether local, state or national) cares a lot or does a lot in the fight against AIDS. When rating how much government cares about the fight against AIDS, fewer than one in four African Americans give the three levels of government credit for caring a lot. And when assessing action, fewer than one in five says any government is doing a lot.
African Americans Expect More Personal Responsibility In The Fight Against AIDS But Are Not Punitive In Their Views
African Americans not only have high standards for action on the part of groups in society at large but also have high expectations for individuals in the fight against AIDS. Most feel strongly that individuals should take responsibility for safeguarding themselves from HIV infection, and for their situation, should they become infected.
Four in five African Americans (84 percent) agree that, by now, all adults should know how to protect themselves from HIV. Most say adults who become infected with HIV today should be held more personally responsible than those infected years ago (67 percent). However, most African Americans do not feel that accountability should extend to increased financial liability. Seventy percent disagrees with the suggestion that people who become infected today as opposed to a few years ago should have to pay more of their medical bills themselves. Similarly, the call for responsibility does not necessarily signify intolerance. Most African Americans (64 percent) say they would personally be very or somewhat comfortable working with someone who has HIV (as compared to 65 percent of all Americans).
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