Student spotlight: an essay by Sara Hanshaw
Stigmatization & Isolation: AIDS Infection in Minority Communities
Throughout August, BU Today will publish pieces of student scholarship and creative work. Sara Hanshaw (CAS ’07), of Council Bluffs, Iowa, is studying Sociology with a minor in Political Science. She plans on graduate studies in social work or law. This article appeared in the Spring 2006 Issue of The Journal of the Core Curriculum, an annual anthology of the creative and scholarly work from the Core community. Back issues can be read online at http://bu.edu/core/journal.
Glenn Loury’s The Anatomy of Racial Inequality and Elijah Anderson’s Code of the Street both focus on factors that may explain the disparities between minority and white populations. These explanations prove extremely significant in the rise of minorities affected with the HIV/AIDS virus. No evidence suggests that being a member of a minority racial group increases the likelihood of becoming infected; therefore, these data indicate an underlying social inequality. Racial stigmatization and the social isolation accompanying this stigma exacerbate the effects of infection, especially among African-Americans. These two factors, examined by Loury and Anderson, are closely related to many risk factors: poverty, low education, drug use, and most importantly, limited access to health care.
Although initially thought of as the gay, white man’s disease, HIV/AIDS infection is becoming increasingly prevalent among minority populations. Accounting for roughly 12% of the United States population in 2003, African-Americans represented 49% of the estimated AIDS diagnoses, a rate ten times higher than for whites and three times higher than for Hispanics. Because females come into contact with health care earlier and more regularly, this rate is much more apparent in this cohort. From 2000-2003, rates for black females were 19 times those of whites and five times those of Hispanics. For males, black rates were seven times higher than those for whites and three times than for Hispanics (HIV/AIDS among African-Americans). Alarmingly, 64% of blacks say that they personally know somebody living with or who has died from HIV or AIDS, compared to 42% of whites (Survey of Americans on HIV/AIDS). With disparities as large as these, blacks are definitely more likely to be infected with the disease. A closer look, however, reveals other factors that more often affect minorities and leave them at greater risk for infection.
Poverty has become one of the leading risk factors for HIV/AIDS contraction, and relative to the population, more minorities find themselves living in poverty. Because one in four African-Americans lives below the poverty line, the association between low income and HIV/AIDS infection has become extremely relevant (Survey of Americans on HIV/AIDS). The virus hits most strongly in the highly populated inner cities or urban areas, in which many minorities live. From the CDC’s AIDS Surveillance Branch, Paul Denning responds to this factor by saying, “Because the virus is very prevalent in these communities, the chances or odds that a person’s sexual partner may be infected with HIV are increased” (Greeley). Anderson discusses the negative power of living in the inner city, more often than not in poverty: “The hard reality of the world of the street can be traced to the profound sense of alienation from mainstream society and its institutions felt by many poor inner-city black people, particularly the young” (Anderson 34). Often times when unemployed or on government supplemental programs, people find themselves unaware, unable, or simply unwilling to deal with the dangers they face in their environment.
In addition, 28% of adults infected with the virus have children, and cannot afford health care in addition to the costs of child-rearing.. This is a significant problem as 67% of HIV infected parents participate in one or more government supplemental programs (Researchers Examine Access). Although people living in poverty rely on Medicaid for health care, it does not cover support services for chronic illnesses, like AIDS, or for long term care, which leaves infected people to seek care from expensive private sector care providers (Schoff and Schore). Anderson argues that this fact leaves socially isolated minorities without sufficient HIV/AIDS care. A major concern then becomes what it means to manage the care of people whose lives are so chaotic that health care is not their primary concern, even though they are very ill (Schoff and Schore).
Not only does poverty leave people more at risk for infection, it also leaves them without many options for care. When just getting by is a difficult task, getting by after being infected with HIV/AIDS is almost impossible. Another prominent risk factor of HIV/AIDS is low educational levels, which are also more apparent among minority populations. In one study, John F. Aruffo surveyed various groups about their knowledge of HIV/AIDS, using “yes,” “no,” or “don’t know” options. He found that whites scored the highest, with an average of 78% correct answers. Blacks, however, scored an average of 68% correct, and Hispanics were even lower, scoring an average of 61% correct. The Sheffe range analysis revealed a significant difference between white and black HIV/AIDS knowledge and between black and Hispanic knowledge (Aruffo). One major factor contributing to the lack of understanding in the Hispanic population is the language barrier, because many schools do not offer sexual education classes in languages other than English (Greeley). Anderson suggests that the school system itself is as hurt by its inability to provide an effective education against the negative influence of street life, as the students who suffer for the lack of that education:
Education is thus undermined because the mission of the school cannot equal the mission of the kids. To accept the school would be to give in and act white, to give up the value of the street for some other thing. And the value of that has not been sufficiently explained to the children to make them want to give up the ways of the street and take on the ideology of the school (97).
The fact of differential dropout rates for different races or ethnicities supports Anderson’s argument. Although the gap has decreased, both blacks and Hispanics are more likely to drop out of school than whites, leaving them even more isolated from the system and its points of access for health care assistance. Furthermore, this gap drastically increases when examining the rates for low-income dropouts, which are higher among all races and ethnicities. Because minorities are more likely to be in low-income situations, they also make up a larger relative percent of dropouts. While the total dropout rate for all populations was 22.1%, whites represented 13.9%, blacks 21.0%, and Hispanics 42.4% (ref: Drug Use among Racial/Ethnic Minorities). Anderson also presents negative aspects for those who remain within the school system:
With each passing year the school loses ground as more and more students adopt a street orientation . . . often what is out on the streets is brought into the classrooms (Anderson 94).
Therefore, youth minorities, especially those in low-income neighborhoods, are more likely to be misinformed or under-informed about many issues, including HIV/AIDS transmission, care for the disease, or even the overall dangers presented by their environment.
Although African-Americans do not use illegal drugs more often than whites, they are still more likely to obtain HIV/AIDS from intravenous drug use (IDU). Helen Fox, senior policy analyst of the National Minority AIDS Council, says that early statistics of HIV/AIDS in minority communities are misleading because people just assumed that it was a gay, white man’s disease and did not even think about the risk. Therefore, early statistics are most likely higher than studies indicate. She says,
There was no understanding of the disease or of the relationship of injecting drugs and the transmissions of the virus (Greeley).
This could explain why IDU is the second leading cause of HIV infection for African-American women and the third for African-American men (ref: HIV/AIDS among African-Americans).
Even though they do not use drugs more often, the attitudes that blacks have toward drugs and drug use are much different than those of whites. In a survey from 1999, 74% of black youths say that they associate marijuana with great danger, in contrast to 84% of white youths. Also, fewer black teens (75%) and parents (82%) saw a danger with cocaine/crack than white teens (85%) and parents (92%). Only 45% of youth blacks saw a danger with heroin, while 58% of white youths saw a danger with the same drug (ref: Drug Use among Racial/Ethnic Minorities). Once minority communities obtain less negative attitudes toward dangerous behaviors, it becomes extremely difficult for them to see how this danger affects them. According to Loury, this is because African-Americans are stigmatized by the rest of the population and are no longer able to see better situations:
Black ghetto dwellers are a people apart, ridiculed for their cultural styles, isolated socially, experiencing an internalized sense of despair, with limited access to communal networks of mutual assistance (Loury 77).
Because of this stigma and isolation, the lack of assistance leaves minority communities to grow worse instead of better. Because attitudes are less negative towards drugs, the prevalence of drugs in these neighborhoods increases. The same survey showed that 28% of black parents thought that cocaine/crack was easily attainable for their children, where only 16% of white parents agreed. Also, in 2000, 27% of black teens thought that it was acceptable to sell drugs for money, while 17% of whites said it was acceptable (ref: Drug Use among Racial/Ethnic Minorities).
Compounding the direct risk of infection through IDU, the use of any intoxicant, including alcohol, increases the likelihood of engaging in risky behaviors while under the influence. Having sex without using a condom and having multiple partners in a period of three months are indicated as high risk behaviors (ref: Drug Use among Racial/Ethnic Minorities). A study of HIV-infected women shows that drug use also influences medical care. Drug users among the women were less likely than nonusers to take their antiretroviral medicines as prescribed, which greatly affects its potency (HIV/AIDS among African-Americans).
One of the most significant factors contributing to the disparity between minority and non-minority HIV/AIDS infections is due to the limited access of minorities to health care. As discussed above, more minorities are under the poverty line, which immediately reduces their access to health care services. Many inner city minorities do not routinely visit available medical care providers, which also reduces their chances of discovering HIV/AIDS infections (Greeley). Because there are often no distinct unique symptoms, people frequently confuse HIV/AIDS infection with the flu, and are not concerned enough to seek medical care (Emerging and Re-Emerging Infectious Diseases). Although more advanced antiretroviral therapy has decreased HIV/AIDS mortality rates in the United States overall, the reduction in mortality for minority groups has been less sharp than for whites. From 1998 to 1999, the rates for whites fell by 15% but only 3% for blacks. Both delayed medical care and limited access to quality care are cited for this difference in mortality rates (Swindells et al.).
The consequences of a disconnect from organized health service go beyond the deficit in diagnosis. The finacial burden and logistical complexity of treatment is an added obstacle to effective care that is especially problematic for poor minorities. In the United States, the common treatment is an extremely expensive “cocktail” of medications—approximately $15,000 per patient, per year—administered according to a regime that is difficult to follow perfectly. With a minimum of eight pills daily, some to be taken with food and some to be taken on an empty stomach, people with hectic or non routine schedules find it difficult to abide by the strict rules of the medication. In addition, the treatment often leads to side effects, such as nausea, diarrhea, rashes, higher cholesterol levels, and headaches. Side effects place a heavy burden on inner city workers, who depend on their jobs, and cannot miss work due to side effects of their medication without the risk of getting fired. However, as soon as the strict regimen is stopped, the virus immediately returns to its original danger level. Even missing single doses can lead to an incomplete suppression of the virus. In these lapses, a new strain can arise, resistant to current drugs. These resistant breeds will multiply extremely quickly since the medication is stifling the other types of virus, thus eliminating the viral competition. Despite the high cost and degree of sophistication, this cocktail is not an overwhelmingly successful treatment; the average time to death after diagnosis is only ten years in the United States. Without treatment, the average time to death is two years (Emerging and Re-Emerging Infectious Diseases).
Other studies show other disparities in health care treatment between minority populations and white populations. The introduction of highly-active antiretroviral therapy (HAART), was a huge advance in HIV/AIDS treatment. It has improved both the function of the immune system and survival rates for HIV patients. HAART also reduces costs for care because patients spend more time in outpatient care than in normal hospital visits. One study showed that mean cost per month in outpatient care was $168, while in hospital care was $423. When HAART first became available, a smaller amount of people insured with State Medicaid programs or uninsured people were provided with the drug (ref: Researchers Examine Use).
Early access to the drug was initially based on level of need, as in HIV/AIDS patients with the lowest CD4 counts. However, after adjusting for need, female IDUs were 41% less likely to have early access to HAART than homosexual males, and patients with less than a high school education were half as likely to receive HAART as those who had completed college or graduate education . . . blacks were much less likely to have early access to HAART than whites (Researchers Examine Access). This gap, though, has narrowed in more recent years (ref: Researchers Examine Use).
Along with the introduction of HAART, many experimental drugs show the same disproportional access between some groups. Both black and Hispanic HIV patients are only half as likely as non-Hispanic whites to attempt to participate in new medication trials. This reflects the lack of awareness in many minority communities of these clinical trials (ref: Black and Hispanic HIV Patients), or the lack of an effort by the research community to make these trials accesible to minority participants. One study showed that patients from minority communities exhibited more advanced stages of the disease when diagnosed. Once these patients entered care, increases in CD4 T counts and a reduction in viral loads did not differ based on minority status. This study suggests that if equally provided for, HIV/AIDS patients would not vary so extensively from race/ethnicity (Swindells et al.). This study supports Loury’s argument that people must move away from the belief that “the essential nature of the race-marked subjects precludes development” (Loury 163).
One of the most alarming aspects of health care disparity is the fact that youth populations are so negatively affected. HIV/AIDS health care for youth minority populations is important because a substantial amount of those infected with the virus are minorities. In 2003, of the 59 children younger than 13 years old diagnosed with the virus, 40 of them were African-American. Of the 90 infants diagnosed, 62 were black (HIV/AIDS among African-Americans). Statistics also show that from the ages of 13-19, blacks and Hispanics together make up 62.3% of HIV/AIDS infected males and 83.5% of infected females. Relative to population, this number is extremely large (“HIV/AIDS and Adolescents”).
The strength of younger immune systems often reduces or completely eliminates detectable symptoms of the virus. Because of this, many people are diagnosed with HIV/AIDS in their twenties, even though they contract the disease as adolescents. This most likely is connected to the fact that many minority children are not educated enough about the dangers of the problem and how to avoid them. Among sexually active young people who have not been tested for the virus, about half of them do not consider themselves at risk for infection. The fact that they do not see themselves in danger is demonstrated in a national youth survey that found that one-third of sexually active adolescents and two-thirds of young adults had sex without a condom at least once. In addition, less than half of the respondents knew “for sure” where they could go to get an HIV/AIDS test (“HIV/AIDS and Adolescents”).
Even of those who know for sure that they are infected, many do not enroll in care. While a total of one-forth of HIV infections occur in people under the age of 21, it is predicted that only 11% receive sufficient health care. One of the major causes of this alarming percentage is the fact that one in seven youth live in poverty. This number is higher for minorities at one in two. In addition to the lack of health care coverage in many instances, many adolescents, just like adults, are afraid of the stigma attached to being infected with HIV/AIDS. Embarrassment and shame are both linked to ignoring the virus in its early stages, when medication is most effective on the strong immune system of adolescents (“HIV/AIDS and Adolescents”). Since minority youths find themselves alienated from the health care system, they are not able to respond with trust to future efforts by that system to assist them. Their distrust reinforces alienation in the next generation.. In this way, a cycle of inadequate care is developed.
The differences among health care between minorities and whites must have underlying causes because even individuals of similar insurance and income display disparities in care. Even though there have been efforts to increase the amount of health providers to minority communities, they are still more likely to report little or no choice in where they go for care: 28% of Hispanics, 22% of blacks, and 15% of whites. The eradication of these disparities is “challenging in part because their causes are intertwined with a contentious history of race relations” (Health Care & 2004 Elections). Loury suggests that underlying problems of race relations will never disappear if people refuse to look at the problem as one of the entire society:
Entrenched racial disparity in developmental opportunities is an intractable, often neglected moral problem—one that gives rise to unavoidable conflicts between cherished values and challenges settled institutions about social justice (Loury 94-5).
Many people do not even acknowledge a treatment gap, let alone recognize the underlying social causes; 67% of whites and even 69% of physicians believe that blacks receive the same quality of care as whites, regardless of their race/ethnicity (Loury 94-5). Acknowledging the problem is the first step to equality in health care, which if brought about would drastically reduce the amount of HIV/AIDS infection in minority communities. Cherylene Showell, the executive director of the Intergroup Minority Project, AIDS Consortium and Trust, addresses this issue when she says,
In most public health practices, once you know that there is something dangerous, you let the community know. And they can take whatever measures they need to protect themselves. But with HIV people don’t treat it like the flu, because it is tied to all these ‘isms.’
For this reason, “HIV becomes invisible with devastating results” (Greeley).
A parallel can be drawn in the involvement of the U.S. in the AIDS crisis domestically and globally, which both point to stigmatization of black populations. The United States was unwilling to provide sufficient aid for African nations that hold the largest burden of the AIDS pandemic. Some argue that throughout the 1990s, the U.S. was merely tired of providing foreign aid. Also, HIV/AIDS was still a crisis domestically, which seemed more important. However, “through the 1990s, if global AIDS had a face, it was an African one. The distinction would have an enormous bearing on the U.S. response” (Behrman 65). Behrman admits that there is no evidence to believe legislation has been struck down for lack of support for black Africans with AIDS, he argues that the fact that the majority of global AIDS cases are in Africa did weigh heavily on the United States’ willingness to act (Behrman 67). Furthermore, Patsy Fleming, federal AIDS Czar in 1994, said,
At the beginning of the epidemic in the former Soviet Union countries, I thought, well, maybe now they’ll pay attention to it, they are white people (Behrman 68).
Domestically, this pattern can also be seen, but in reverse order. Because by the mid-1990s AIDS rates had begun to decrease, many people wanted to move on from the issue (Ibid. 74). In the early 1980s, most of the reported AIDS cases were white, and it is these cases that began to wane by the mid-1990s. However, by 1996, there were more African-American cases than any other racial group (ref: MMWR). When AIDS started to become a “black problem,” the country’s concern declined in hopes to move on. Here again, Loury’s theory of “us versus them” is very important:
By failing to consider how our policies, in conjunction with racially influenced patterns of social interaction, may be generating an unfair outcome, we act in effect as though the problem here lies with THEM and not—as is, in fact, the case—with all of us (82).
It is reasonable to conclude that an underlying social factor has produced the disparities between African-Americans and whites. It is true that being black does not lead to a higher risk of being infected with the HIV/AIDS virus. Nonetheless, blacks are more often inflicted with poverty, low education levels, drug use, and limited access to health care, which do lead to higher risks of being infected. Loury and Anderson both agree that these differences have root causes in the institution of slavery, which created a distinct separation between blacks and whites. This “social otherness” of African-Americans persists even after the Civil Rights Movement of the 1960s. Loury explains,
both formal and informal social relations mediate the provision of nearly all the resources necessary for human development (99).
Though the U.S. has passed legislation attempting to provide equal opportunity and better conditions for black populations, it appears legislation is not enough. While 61% of African-Americans say that there is a lot of discrimination against people with AIDS, and only 42% of whites think so, it is clear that there is still work to be done (ref: Survey of Americans on HIV/AIDS). This discrimination difference is most likely associated with what Loury calls “entrenched racial disparity.” It is apparent that the stigmatization and social otherness of blacks is transferred to many aspects of life, even the contraction of a deadly disease. However, only with the elimination of stigma and social isolation will blacks be fully able to benefit from all the institutions protecting people from the HIV/AIDS virus.
Agency for Healthcare Research and Quality. HIV/AIDS Research: Black and Hispanic Patients are Less Likely than White Patients to Get Experimental Medications. 2005. <http://www.ahcpr.gov/research/may02/0502RA6.htm>
Agency for Healthcare Research and Quality. HIV/AIDS Research: Researchers Examine Use of Highly Active HIV Medications and Their Effects on Costs and Access to Care. 2005. <http://www.ahcpr/gov/research/aug02/0802RA28.htm>
—–. Researchers Examine Access to Care, Symptom Prevalence, and Health Care Services for Patients with HIV Infection. 2005. <http://www.ahcpr.gov/research/-sep00/0900RA20.htm>
Anderson, Elijah. Code of the Street. New York: W.W. Norton, 1999.
Andersen, R., Bozzette, S., Shapiro, M., and others. “Access of vulnerable groups to antiretroviral therapy among persons in care for HIV disease in the United States.” Health Services Research 35(2), June 2000.
Aruffo, John F. “AIDS Knowledge in Low-Income and Minority Populations.” Public Health Reports, Mar. – Apr. 1991.
Behrman, Greg. The Invisible People. New York: Free Press, 2004.
Greeley, Alexandra. “Concern About AIDS in Minority Communities.” FDA Consumer Magazine, Dec. 1995.
“HIV and AIDS — United States, 1981-2000.” Morbidity and Mortality Weekly Report. 2004. <http://www.cdc.gov/mmwr>
“HIV/AIDS and Adolescents: From Prevention to Care.” HRSA Care Action, May 2004. <http://www.hab.hrsa.gov/publications/may04/may2004.htm>
HIV Research Network. “Hospital and outpatient health services utilization among HIV-infected patients in care in 1999.” Journal of Acquired Immunodeficiency Syndromes 30(1), May 2002.
Kaiser Family Foundation. Survey of Americans on HIV/AIDS — Part Three: Experiences and Opinions by Race/Ethnicity and Age. Public Opinion and Media Research Program, 2004. <http://www.kff.org>
Kaiser Family Foundation. Health Care and the 2004 Elections, 2004. <http://www.kff.org/minorityhealth/7187.cfm>
Keruly, J.C., Conviser, R., Moore, R.D. “Association of medical insurance and other factors with receipt of antiretroviral therapy.” American Journal of Public Health 92(5), May 2002.
Marcus, M., Freed, J.R., Coulter, I.D., et al.. “Perceived unmet need for oral treatment among a national population of HIV-positive medical patients: Social and clinical correlates.” American Journal of Public Health 90(7), July 2000.
Mathews, W.C., McCutchan, A., Asch, S., and others. “National estimates of HIV-related symptom prevalence from the HIV Cost and Services Utilization Study.” Medical Care 38(7), July 2000.
National Center for HIV, STD, and TB Prevention. HIV/AIDS among African-Americans. Centers for Disease Control and Prevention, 2005. <http://www.cdc.gov/hiv/ pubs/Facts/afam.htm>
National Institute on Drug Abuse. Drug Use Among Racial/Ethnic Minorities. U.S. Department of Health and Human Services, 2003. 22 Mar 2005 <http://www.drugabuse.gov/pdf/minorities03.pdf>
National Institute of Health. Emerging and Re-emerging Infectious Diseases. National Institute of Allergy and Infectious Diseases, 2005. <http://science.education.nih .gov/supplements/nih1/diseases/activities/activity5_aids-database.htm>
Schoff, Jennifer and Jennifer Schore. “The Role of Home and Community-Based Services in Meeting the Health Care Needs of People with AIDS: Literature Review.” U.S. Department of Health and Human Services, Mathematica Policy Research: Jan 1997. 21 Mar 2005 <http://www.aspe.hhs.gov/daltcp/reports/adislit.htm>
Schuster, M.A., Kanouse, D.A., Morton, S.C., and others. “HIV-infected parents and their children in the United States.” American Journal of Public Health 90(7), July 2000.
Stein, M.D., Crystal, S., Cunningham, W.E., and others. “Delays in seeking HIV care due to competing caregiver responsibilities.” American Journal of Public Health 90(7), July 2000.
Swindells, Susan, Daniel G. Cobos, Nancy Lee, Elizabeth A. Lien, Ann P. Fitzgerald, Jennifer S. Pauls, James R. Anderson. “Racial/Ethnic Differences in CD4 T Cell Count and Viral Load at Presentation for Medical Care and in Follow-up After HIV-1 Infection.” AIDS: Vol 16 (13), 2002.