Chapter 7: Appendices
HRSA HIV/AIDS Bureau (HAB)
These appendices are population-specific and highlight the particular challenges associated with delivering care to various high-risk groups, and what issues providers should be aware of as they target and tailor their approaches. All of the populations discussed in the appendices section have been targeted through the SPNS initiatives mentioned at the beginning of this training manual.
Appendix A: African-Americans/Blacks*
HIV/AIDS has disproportionately impacted Black women, youth, and gay and bisexual men since the start of the epidemic.65 To put this in perspective:
- African-Americans represent 14 percent of the United States population, but accounted for nearly one-half of all PLWHA in the United States in 2010.66
- From 2007 to 2010, approximately 44 percent of all new HIV infections occurred among African-Americans.†
- The AIDS rate for African-Americans is 10 times that of Whites, and the lifetime risk of HIV infection is far greater among Blacks than any other ethnic group.67,68
HIV in Black communities is fueled, in part, by a variety of economic determinants and health disparities:
- In 2011, African-Americans accounted for 27 percent of people in the United States living at or below the Federal poverty line, and over one-fifth of all Blacks in the country reported not having health insurance.69
- This has resulted in high rates of FISI among African-Americans, who account for a disproportionate number—47 percent—of the country’s homeless population.70
- High rates of STDs, heart disease, and type 2 diabetes also undermine health outcomes of African-Americans, and can complicate HIV/ AIDS treatment.71
- The rate of AIDS among prison and jail inmates— who are disproportionately African-American—is estimated to be about 2.4 times greater than that among the general population.72
- In 2010, 88 percent of new HIV infections among Black women were attributed to high-risk heterosexual contact, which encompasses all unprotected heterosexual activity, including survival sex and sex work.32
- Higher incarceration rates within Black communities leads to a loss of available men, which can disrupt social networks and may lead to risky behavior.
- Because African-American women are less likely than other women to date men outside their racial/ ethnic group, the higher rates of HIV infection among African-American men have important implications for African-American women’s HIV risk, particularly as the majority of infections are a result of high-risk heterosexual sex.74
Black men represented 70 percent of estimated new infections among African-Americans in 2010, with an infection rate approximately 6 times higher than that of White men and over 15 times that of White women.75 Nearly three-quarters of these infections resulted from male-to-male contact.76
Fears of being “outed” as HIV-positive—and, by extension, engagement in stigmatized sexual activity— presents a powerful barrier to seeking HIV prevention, testing, treatment, and care in African-American communities. This is particularly true for Black MSM and young Black MSM.77 They face real and perceived risks of rejection by their family and friends, and often leave home at an early age.
- Young Black MSM are vulnerable to homelessness and earlier sexual debut than other youth, and often depend on older Black MSM partners for housing, food, and other resources to survive.78
- Young Black MSM make up the majority of African-American teenagers living with HIV— who together account for only 17 percent of the U.S. population ages 13 to 19, but represent 70 percent of all new AIDS diagnoses in this age group.65
- Young Black MSM ages 13 to 29 experienced a 48-percent increase in HIV infections from 2006 to 2009, and accounted for 60 percent of new HIV cases among all Black MSM during this time period.68
- This spike reflects, in part, this group’s inexperience negotiating condom use, particularly with older partners, who they may fear will cut off their support. Many older Black men were infected through similar relationships in their youth, and in turn are transmitting HIV to their younger partners, helping to perpetuate HIV across multiple generations of Black MSM.79
Appendix B: Hispanics/Latinos‡
- Hispanic/Latino men living with HIV accounted for nearly 81 percent of estimated AIDS cases among Hispanics/Latinos in 2010.
- Most Hispanic/Latino men who contracted HIV did so through male-to-male sexual contact, followed by IDU and high-risk heterosexual contact.82
- High-risk heterosexual contact accounted for 77 percent of estimated AIDS diagnoses among Latina women in the United States and 6 dependent areas in 2010.82
Health outcomes for Hispanics/Latinos living with HIV/ AIDS are undermined by overall lack of educational attainment, high rates of poverty, rising unemployment, language and cultural differences, immigration status issues, and lack of health insurance.83,84
- In 2010, 27 percent of Hispanics/Latinos lived in poverty, compared to the nationwide average of 15 percent.69
- Nearly 31 percent of all Hispanics/Latinos—the largest of any racial and ethnic group—were uninsured in 2010, compared to 11.7 percent of non- Hispanic Whites.69
- In 2010, only an estimated 63 percent of Hispanics/ Latinos ages 25 and older had graduated from high school, compared to African-Americans, Asians, and non-Hispanic Whites who all have graduation rates in excess of 80 percent.85
- In addition, Hispanics/Latinos, particularly Hispanic/ Latino men, experienced disproportionately high rates of incarceration, which further exposed them to HIV coinfections such as hepatitis and fueled HIV in their communities.
Providing care for and increasing awareness of HIV/ AIDS among Hispanics/Latinos is complicated. Behavioral risk factors for HIV infection among Hispanics/ Latinos can differ based on country of birth,86 and are further complicated among highly mobile subgroups fearing deportation and living in geographic isolation and poverty with limited access to culturally sensitive, high quality health care.87-89 Indeed, research suggests that, depending on their personal circumstances and education levels, some Hispanics/Latinos may be unaware of HIV risks or exactly how it is transmitted. One ethnographic study of Hispanic/Latino men revealed beliefs that over-the- counter drugs from Spanish-language grocery stores could cure HIV.90 Cultural attitudes such as machismo— an exaggerated sense of masculinity commonly found in Hispanic/Latino communities, characterized by sexual prowess, dominance, and aggression—can encourage the acquisition of numerous sexual partners and denial of MSM behavior, undermining safe-sex practices.91
Appendix C: Asians and Native Hawaiians/Pacific Islanders
Asians and Native Hawaiians or Other Pacific Islanders (NH/PIs) (which, until recently, were considered one group called Asian and Pacific Islanders or A/PIs) include a heterogeneous and diverse collection of approximately 50 ethnic subgroups that speak more than 100 languages, and have their origins in the Pacific, and North, South, and Southeastern Asia.92
In 2010, NH/PIs ranked fourth in number of estimated AIDS diagnoses in the United States, after African-Americans, Hispanics/Latinos, and multiple races.32 Of particular concern is the heavy impact of HIV among NH/PI MSM.
- Of the estimated HIV diagnoses among Asian men in 2010, 86 percent contracted the virus through male-to-male sexual contact.93
- Asians and NH/PIs can experience difficulty accessing care due to language and cultural barriers, as well as fears of deportation. These issues may make Western health-care facilities intimidating and communication with clinicians almost impossible.94-96
- Approximately 1 in 5 nonelderly Asians and NH/PIs lacks health insurance, inhibiting their ability to access care.97
Although rates of many diseases, including HIV/ AIDS, are lower among Asians and NH/PIs than other racial and ethnic groups, they are more likely to have HIV coinfections and morbidities, including tuberculosis, hepatitis B, and certain cancers. In some geographic regions, such as San Francisco, rates of HIV/ AIDS has spiked among Asians and NH/PI groups, particularly YMSM.98
Appendix D: Native Americans/Alaska Natives
American Indians/Alaska Natives (AI/ANs) represent less than 1 percent of the U.S. population—and include hundreds of diverse tribes and cultures—but have an AIDS rate 40 percent higher than Whites.68,99 They also are more likely to die of the disease than most other racial and ethnic groups.100
- Of the estimated HIV diagnoses among AI/AN men in 2010, 73 percent contracted the virus through male-to-male sexual contact.93
- Approximately 75 percent of estimated HIV diagnoses among AI/AN women were attributed to high-risk heterosexual contact in 2010.93 HIV can be particularly devastating to AI/AN women, who have higher rates of health and access challenges than women in other racial and ethnic groups.101
- Accessing care is often complicated for AI/ANs. Indian Health Service (IHS) providers tend to be located on rural tribal lands, although over two-thirds of Native peoples live in urban areas. Most are poor and uninsured.102
Native peoples living on the reservation are closer to IHS providers, but still experience barriers around cultural differences, geographic isolation, poverty, fears of unwanted disclosure, and frequent relocation.101 All AI/ANs experience disproportionately high rates of HIV comorbidities and coinfections, such as viral hepatitis, tuberculosis, pneumonia, influenza, depression, type 2 diabetes, and heart disease, as well as suicide, accidental deaths, mental health issues, intimate partner violence, alcoholism, and SUDs.99,103
Appendix E: Women
HIV care also can run counter to many cultural norms in communities hard hit by HIV, especially since it is so closely associated with same-sex behavior and often involves mental health care and treatment for SUDs that are equally stigmatized in communities of color. Women, and women of color in particular tend to perceive themselves at lowered risk for HIV infection than single women. Initiating safer sex practices later in a relationship often proves difficult. Not using condoms is an expression of deep trust; men of color often construe any suggestion of their use to be an admission of guilt or distrust.104 The latter, in particular, can place them at risk for intimate partner violence and disgrace in their families and communities.105,106 This is particularly true for women with histories of childhood sexual abuse, SUDs, and post-traumatic stress disorder.107
Many women feel pressured to obtain HIV prevention, treatment, and care in secret due to these cultural norms and fears. Latina women often defer HIV care altogether, in part because of marianismo, which involves female submission to husbands and other male family members in Hispanic/Latino communities. It can severely limit their freedom of movement, making access to HIV testing, treatment, and care difficult. An HIV-positive test result is often devastating for Hispanic/ Latina women on many levels. Although Hispanic/ Latino notions of machismo encourage Hispanic/Latino men to have multiple female sex partners and deny any same-sex attraction or activity, it is their wives—most of whom are monogamous—who will be blamed if either partner tests positive for HIV.
Similar cultural norms are found in some African- American communities, where the idea of “collective responsibility” defines women as caretakers who must put the needs of their children, husbands, and extended family before their own.108 Women of color, many of whom experience high rates of depression and stress, also may feel pressured to maintain a relationship at any cost, since they depend upon their partners for economic support.109–112 Some Black women will maintain a partner rather than attempt to find a new one in the ever-decreasing pool of available African-American men due to higher rates of mortality and incarceration among Black males than in other ethnic groups, especially in areas of lower socioeconomic status.113
Considering their familial responsibilities, fears of rejection and violence, and economic instability, it is not surprising that many female PLWHA often miss appointments—as do members of other marginalized groups, including the uninsured, minority men, MSM, and youth.114 These issues often play a role in Hispanic/ Latino and Black women being linked to care and prescribed ART later than their White counterparts.6,115-117 Without intervention, these women PLWHA are at considerable risk for progressing to AIDS, which can severely undermine their quality of life, overall health, and, ultimately, their life expectancy.
Appendix F: Incarcerated PLWHA
Incarceration is one of the complex issues facing the HIV community, since it represents both a barrier to, and an opportunity for, engagement in care. Entering a jail or prison takes patients away from their regular care regimen, yet these facilities offer providers an opportunity to identify HIV-positive persons unaware of their status and engage them, along with PLWHA currently out of care, into health education, ART, and other treatment and care services.
The rate of AIDS within incarcerated populations is estimated to be about 2.4 times higher than that among the general population.72 Incarcerated individuals, particularly those who have experienced homelessness and/ or engaged in substance use, often are unaware of their HIV status, and may be more susceptible to coinfections, such as tuberculosis and hepatitis C.118 Inmates often are wary of being tested in prison due to stigma associated with HIV and the possibility that their status may be disclosed to the rest of the prison population due to the general lack of privacy.119 Communities disproportionately affected by HIV/AIDS are also overrepresented within these institutions. More than one-half of all incarcerated persons are African-American and Hispanic/ Latino men and women.120
Of all incarcerated ethnic and racial minorities, African-Americans tend to enter prisons and jails in the poorest health, and prove particularly vulnerable to falling out of care upon release. Compared to incarcerated PLWHA from other racial and ethnic groups, Black HIV-positive men were more likely to be MSM, and experience intense FISI, mental illness, and SUDs. This group of PLWHA, particularly Black PLWHA men, often are more likely to have longer lifetime incarceration histories, be charged with violent offenses, and have higher rates of recidivism.121
Reasons for incarceration differ along gender lines, however, with most women incarcerated for sex work and SUDs. Men, however, are incarcerated for numerous reasons, many of them related to violence and parole violations. The needs of male and female PLWHA, while often different, are not necessary more intense for one gender or the other upon leaving incarceration. Both experience additional difficulties with engaging in care if returning to a previous life situation that led to their arrest in the first place, and most often continued engagement in illegal drug use and sex work. Those not engaged in strong health-care programs focused on SUDs and mental health care experience significantly higher rates of recidivism than other formerly incarcerated PLWHA.59,122
Appendix G: Men Who Have Sex with Men
As noted previously, homophobia has played an integral role in stigmatizing HIV/AIDS and has created substantial barriers to HIV prevention, testing, treatment, and care among MSM, and YMSM in particular. The impact of HIV among gay men and MSM has been devastating. Although they represent only 4 percent of the male population in the United States ages 13 and older, the CDC reported that they accounted for 61 percent of new HIV infections in 2009.
YMSM ages 13 to 29 have been particularly hard hit by HIV, experiencing a 34-percent increase in estimated incidence of HIV cases in their age group from 2006 to 2009.75 This spike reflects, in part, the sense of invincibility common to this age group, but also the realities many YMSM face, which commonly include histories of sexual abuse and engagement in sexual activity at an earlier age and with higher levels of risk.123 They also are more likely to live in poverty, have limited educational attainment, and engage in survival sex and/or sex work.111,124
Perhaps most alarming is that MSM generally do not consider themselves at risk for HIV, even though MSM of color of all ages have accounted for the majority of HIV/AIDS cases among MSM since 1998.33 The CDC’s Young Men’s Survey, conducted from 1994 to 2000, initially showed this disproportionate impact among YMSM of color. The survey found that Black, multiracial, and Hispanic YMSM were diagnosed with HIV at rates five, four, and two times that of their White counterparts, respectively. Of the YMSM of color who tested positive for HIV, 82 percent said they had no idea they were infected, and only 15 percent indicated being connected to HIV primary care and treatment. Most believed they were at little risk for HIV infection in their lifetime.123,125
*Different data sources use different terms for this population. For the purposes of this training manual, the terms African-American and Black are used interchangeably to refer to all people of African descent in the United States, its territories, and possessions.
†Unless otherwise noted, HIV estimates and diagnoses are gleaned from data provided by 46 U.S. States (Hawaii, Maryland, Massachusetts, and Vermont are not included) and 5 U.S. dependent areas (American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, and the U.S. Virgin Islands). U.S. dependent areas, however, are not included in reference to HIV among specific racial and ethnic groups, since the U.S. Census Bureau does not collect demographic information from all dependent areas. AIDS surveillance data are based on reports submitted by all 50 States, the District of Columbia, and 6 U.S. dependent areas (American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, Republic of Palau, and the U.S. Virgin Islands.)
‡For the purposes of this training manual, Hispanic/Latino refers to all Hispanic populations in the United States, its territories, and possessions. Hispanic/Latino populations can represent any racial and ethnic group.