HIV/AIDS and People of Color
Abstract and Keywords
Communities of color are disproportionately burdened by the prevalence of HIV/AIDS. Research has shown that race and ethnicity in the United States are population characteristics that correlate with other fundamental determinants of health outcomes. This entry will chronicle the history of the epidemic, report the disparate impact of the disease affecting communities of color, and acknowledge the social determinants of health that contribute to the vulnerability of risk. A call to address the imbalance of health inequities, with a complement of individual-level interventions and new approaches that address the interpersonal, network, community, and societal influences of disease transmission, is discussed.
As a nation, it is time to determine the direction we will take in fighting this serious—yet preventable—disease. One direction leads to complacency and the injustice of an HIV epidemic that affects the most vulnerable of Americans. The other turns toward a re-energized, science-driven effort to reduce the spread of HIV. Public health and our national conscience require we make the right choice.
Dr. Jonathan Mermin, Director, CDC Division of HIV/AIDS Prevention
The History of an Epidemic
Identifying an Outbreak
What is now known as the Human Immunodeficiency Virus (HIV) epidemic is believed to have been first described in the June 5, 1981 Morbidity and Mortality Weekly Report produced by the Centers for Disease Control and Prevention (CDC), (1981a). The presenting condition, Pneumocystis carinii pneumonia, was diagnosed at three different hospitals in Los Angeles in five previously healthy White males who all identified as homosexual. Though this type of pneumonia is not unknown to the medical community, its presence in five fairly young men who had been in good health, and who shared no known contacts or exposures, was curious enough to be reported to the CDC. The editorial notes of the June report indicate that, in the United States, this pneumonia is almost exclusively found in individuals who are severely immunocompromised. The report then indicated that the shared sexual orientation of these patients indicated a relationship between men having sex with men (MSM) and a sexually transmitted disease that resulted in Pneumocystis carinii infection. Simultaneously, 26 incidents of a rare form of cancer, Kaposi’s sarcoma, were reported to the Centers for Disease Control and Prevention by hospitals in New York and California (CDC, 1981b). This condition was also recorded primarily among young gay men, and it was previously only found in those with profound immunosuppression. Reporting of these two conditions by the Centers for Disease Control and Prevention, and subsequent coverage by major media outlets, resulted in more hospitals across the country recognizing and diagnosing these conditions. By the end of 1981, there were more than 250 cases reported, with a mortality rate greater than 40% (CDC, 1982b).
Nearly one year after the initial reports of Kaposi’s sarcoma and Pneumocystis carinii in previously healthy young White homosexual men, the July 9, 1982 edition of the Morbidity and Mortality Weekly Report indicated a similar cluster of these diseases and other opportunistic infections among 32 Haitian immigrants. Notably, there were four women in this cluster, none of the male Haitian patients reported homosexual activity, and only one patient reported a history of intravenous drug use. Despite the absence of behaviors previously thought to be a predisposition for these conditions, the authors of the report indicate there might be an association between this cluster and the outbreak among homosexual men and intravenous drug users (CDC, 1982a). The CDC added Haitians to the small list of high-risk groups for developing the condition. That is, Haitians were considered at risk because of their ethnicity, as opposed to the behaviors that put intravenous drug users or male homosexuals at risk.
As the epidemic progressed, a change in terminology became necessary. In the early days, the individuals reported to the CDC were identified as gay or homosexual, but those sexual identities are only a portion of the population of males having sex with other males. In an attempt to avoid labeling individuals engaging in male-to-male sexual contact with a sexual identity that may or may not be applicable to that individual, the term “men who have sex with men” (MSM) has been used in HIV/AIDS literature since at least 1990 (Young & Meyer, 2005). This term attempts to refocus on the behavior that puts an individual at risk, as opposed to a sexual identity that does not itself serve as a risk factor.
Prior to the identification of these opportunistic infections in women and other groups, the disease was called a variety of names; one of the most common was the misnomer Gay-Related Immune Deficiency. This term obviously left out those who acquired the same infection through heterosexual transmission, intravenous drug use, blood transfusions, or perinatally. There was a lack of recognition of the impact this disease had on those populations, resulting in the Centers for Disease Control officially naming this grouping of opportunistic infections Acquired Immune Deficiency Syndrome (AIDS) (Grmek, 1990). In the September 24, 1982 edition of the Morbidity and Mortality Weekly Report, the CDC provided an update on the epidemic and officially defined AIDS as a disease, at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease (CDC, 1982b).
Even before the syndrome was called AIDS, there was pressure within the medical and research communities to identify the underlying cause of these opportunistic infections in order to develop a better understanding of the risk factors, develop testing methods, and ultimately treat and cure the disease. In 1983, two years after the first clusters of the disease were recognized, the HIV was identified as the agent that causes AIDS (Montagnier, 2002).
By 1985, a blood test to determine the presence of HIV had been developed. The newfound ability to screen for HIV greatly reduced the risk associated with contracting the virus through blood transfusions; subsequent declines in new infections associated with these procedures were one of the first victories in the fight against the AIDS epidemic. Zidovudine, or AZT, was introduced in 1987 as the first medication approved to treat HIV and associated opportunistic infections (McLeod & Hammer, 1992). The impact of AZT on AIDS cannot be understated; clinical trials have consistently shown decreased incidence and severity of opportunistic infections, improved weight gain, slowed progression from HIV to AIDS, and decreased mortality (National Institutes of Health, 2010).
Outside of the CDC, there was little acknowledgement by the federal government of the health crisis that was quickly moving across the country. Congressman Henry Waxman of California convened the first congressional hearing on HIV/AIDS in April 1982, and pointed out that, if HIV had been discovered in less marginalized populations, the government’s response to this disease would look very different. As it was, President Ronald Reagan did not publicly speak about HIV or AIDS until September 1985, when he was asked about AIDS funding at a press conference. In his response, the President stated that the disease had been a priority of his administration since 1981, and that the upcoming 1986 budget would increase funding for AIDS to nearly a half billion dollars. Though funding for research and services was good news, the four-year silence from the White House did little to convince those impacted that an increased federal response was imminent. The Surgeon General’s Report on AIDS was written in 1986, and a pamphlet on prevention methods was issued in 1988 (Koop, 1987). In 1987, the Presidential Commission on HIV was created, and it issued recommendations for anti-bias laws, increased access to drug treatment, and additional funding for research. It is difficult to identify these recommendations as the direct and only cause for subsequent changes to confidentiality laws, increased funding for AIDS research, and improved protections for individuals with HIV, as there was a great deal of nationwide discussion surrounding these same issues. Regardless of the initiating incident, changes surrounding the issues identified by the commission were finally beginning to be made at the federal level.
In the early months and years of the AIDS epidemic, reports of infections were sent to the CDC based on the loose diagnostic criteria for AIDS included above. The availability of diagnostic blood tests improved the accuracy of HIV cases reported to the CDC and brought a wave of policies requiring the collection of data on AIDS cases. From 1981 to 1986, reporting systems were created in each state, the District of Columbia, and three U.S. territories to collect information on AIDS. Though reporting AIDS cases from states to the federal government is not required, all states currently share data in an effort to better understand and track the progression of the epidemic (Nakashima & Fleming, 2003).
It was determined that HIV/AIDS modes of transmission are by not using a condom when having sex with a person who has HIV; having multiple sex partners or the presence of other sexually transmitted diseases (STDs); sharing needles, syringes, rinse water, or other equipment used to prepare illicit drugs for injection; and being born to an infected mother. Based on the history of this disease in the United States, White non-Hispanics represented nearly 60% of reported AIDS cases in 1985. This trend drove the development and planning of care and services for people with HIV and AIDS, and created systems that responded to the needs of a primarily White MSM client base.
HIV/AIDS Is Still With Us: Populations Carrying the Burden of the Disease
When evaluating an epidemic, data collection is necessary to not only track the disease, but also to determine if there are sections of the population that are disproportionately impacted. This data can help guide prevention and treatment efforts, and also identify areas that may be overlooked. For the purposes of this discussion, it is necessary to differentiate between disproportionality and disparity. “Disproportionality” refers to the over- or under-representation of a particular group compared to its representation in the general population, while “disparity” is the condition or fact of specific population groups being unequal as compared to other groups, due to inequitable treatment or services linked with social or economic disadvantage (Braveman & Gruskin, 2003).
There has been substantial progress made in the care for persons living with HIV/AIDS (PLWHA) since the first cases of AIDS were reported by the Centers for Disease Control in the 1980s. More than 20 approved antiretroviral drugs have contributed to the effective treatment of PLWHA by suppressing HIV-1 replication to undetectable levels (Arts & Hazuda, 2012). Broder (2010) reports that antiretroviral therapy has brought about a substantial decrease in the death rate due to HIV-1 infection, changing it from a rapidly lethal disease into a chronic, manageable condition. More than 1.1 million people in the United States are living with HIV infection in the early twenty-first century, however, and almost one in five (18.1%) is unaware of the infection (CDC, 2012a). Furthermore, there are still 50,000 new infections in the United States each year (CDC, 2012b; Hall, Song, et al., 2008). Worldwide, there were about 2.5 million new cases of HIV in 2011. Even though sub-Saharan Africa bears the biggest burden of HIV/AIDS, countries in South and Southeast Asia, Eastern Europe, Central Asia, and Latin America are significantly affected by HIV and AIDS (World Health Organization, UNICEF, & UNAIDS, 2011).
In the United States, there was, as of 2013, an 89% decline in the estimated rate of transmission since the peak of the epidemic in the mid-1980s, likely due to targeted prevention efforts and the ability of antiretroviral drug therapy to keep viral loads low and decrease the risk of virus transmission (CDC, 2012b). Despite these advances in HIV prevention, late diagnoses, represented by seroconversion from HIV to AIDS within 12 months of initial diagnosis, are missed opportunities for treatment and prevention. Among those initially diagnosed with HIV infection during 2009, one-third (32%) were diagnosed with AIDS within 12 months, indicating they were likely infected for many years without knowing it (CDC, 2012b). It is estimated that only 37% of people with HIV in the United States are retained in regular care (CDC, 2012a). Despite the important advancements made in the fight against HIV/AIDS, HIV/AIDS is still with us, and it is impacting some groups at a greater magnitude than others. There are certain populations and geographic locations at greater risk for contracting HIV/AIDS than others, and that are carrying the greatest burden of the disease. There exist significant racial and gender disparities, with the majority of new infections among MSM, African Americans, and Latinos.
Social Determinants of Health
HIV/AIDS has become a disease of the marginalized; certain groups have an increased vulnerability to contracting the disease. By transmission category, the largest number of new HIV infections occurs among men who have sex with men (MSM) of all races and ethnicities, followed by African American heterosexual women. By race/ethnicity overall, African Americans are the most heavily affected, followed by Latinos (CDC, 2012b). Several studies have shown that Black women and Black men who have sex with men, the two groups severely impacted by HIV/AIDS, have similar numbers of sexual partners and use condoms as often as their White counterparts (Chandra, Mosher, Copen, & Sionean, 2011; Millett, 2006). Hence, behavioral risk factors alone cannot completely explain the HIV/AIDS racial disparities.
Due to the disproportionate impact of the disease affecting communities of color, it has been necessary to look closer at the social determinants of health that contribute to the HIV epidemic in these communities, particularly as they relate to the lack of being linked into or retained in care, the need for adequate insurance coverage, access barriers, and other social-determinant factors of health. The Institute of Medicine (2002) defines social determinants of health as conditions in the environments in which people are born, live, learn, work, play, and worship, and in age, that affect a wide range of health, functioning, and quality-of-life outcomes and risks. Conditions (for example, social, economic, and physical) in these various environments and settings (for example, school, church, workplace, and neighborhood) have been referred to as “place.” For example, a social determinant such as residential segregation influences a community’s access to crucial resources such as housing, education, and health care, and also plays a role in determining with whom, with what frequency, and on what terms people interact with others, both publicly and privately (Chae, Lincoln, & Jackson, 2011; Williams, 1990).
The prevalence data for communities of color underscore the necessity to not only assess personal risk factors, but to also examine those social and economic conditions and their effects on people’s lives that determine their risk of illness.
Changes in Prevalence Over Time and the Social Determinants of Health Inequity
In 1985, African American/Black individuals represented approximately one-quarter of all AIDS diagnoses, despite being less than 12% of the total U.S. population according to the 1980 U.S. Census. This disproportionate trend continues; as of 2010, African Americans represent 44% of new HIV infections (Prejean et al., 2011) and are slightly more than 13% of the U.S. population (U.S. Census Bureau, 2013). Over the course of life, one out of every 16 Black/African American men will receive a diagnosis of HIV, as will one in 32 Black women (Hall, An, Hutchinson, & Sansom, 2008). Addressing the “social determinants of health,” such as poverty, poor access to health care, and unemployment, is now seen as an integral part of tackling the disproportionate impact of HIV on communities of color (CDC, 2010a). A strong contributing factor is that one in five African Americans do not have health insurance (CDC, 2012c), and many African Americans tend to use medical services and treatments less than Whites, which research suggests may be partly related to distrust of the medical system (Musa, Schulz, Harris, Silverman, & Thomas, 2009).
For the purposes of this discussion, and based upon how this population is referred to in the literature, the term “Blacks” includes African Americans, Black Caribbean Americans, Black Africans, and other Black persons who may not self-identify as African American. Nearly three-quarters of new HIV cases in African American men are found in those who have sex with other men (MSM). The CDC states that Black or African American men between the ages of 13 and 24 had the highest number of new infections among all MSM in 2010 (CDC, 2012b). HIV infection rates are higher among Black men who have sex with men (MSM) compared to other MSM. Socioeconomic status and HIV prevalence are also linked among men who have sex with men (CDC, 2010b). Homophobia and HIV stigma can discourage individuals from seeking HIV testing, prevention and treatment services.
Women of color continue to be disproportionately affected by HIV infection, mainly by heterosexual transmission. The unequal status of women means that their capacity to negotiate in the context of sexual activity is severely restricted (Campbell & Soeken, 1999; El-Bassel et al., 2001; El-Bassel, Gilbert, Wu, Go, & Hill, 2005; Rountree & Mulraney, 2010). African American women are disproportionately impacted; in 2010, African American women represented 13% of all new infections, with the rate of new infections 20 times greater than that of White women, and nearly five times that of Hispanic women (38.1 v. 1.9 and 8.0 per 100,000) (CDC, 2010d). Most Black women (87%) were infected through heterosexual sex. While new infections among Black women remain high, in 2010, new HIV infections among Black women decreased by 21%, from 7,700 in 2008 to 6,100 in 2010. This decrease contributed to a 22% decline in new infections among women overall during the same time period (Prejean et al., 2011). Although the trend is encouraging, Black/African women continue to be far more affected by HIV than women of other races/ethnicities.
Social determinants of health inequity, such as social and economic conditions, can make it more difficult for individuals to protect their sexual health (Gonzalez, Hendriksen, Collins, Duran, & Safren, 2009). Furthermore, Laumann and Youm (1999) report that people who struggle financially are more likely to be experiencing life circumstances that increase their risk for STDs. In 2010, the rate of chlamydia among Black women was more than seven times the rate among White women, and the rate among Black men was almost 11 times that of White men. That same year, 69% of all reported cases of gonorrhea occurred among Blacks; this disparity was larger for Black men than for Black women. Approximately 40% of all primary and secondary syphilis cases reported to CDC were among Blacks, and 31% of all cases were among Whites (Prejean et al., 2011).
More Black males and females living with AIDS were infected by injected drug use compared to males and females of any other racial or ethnic group (CDC, 2011a). African American injecting drug users (IDUs) have a high risk of acquiring HIV and not surviving long after an AIDS diagnosis (Valle & Levy, 2008). By far it is critical to address the social and environmental factors, such as poverty, stigma and discrimination, incarceration, and low access to quality care, that are fueling this epidemic in communities of color across the nation (Institute of Medicine, 2002).
Changes in Prevalence Over Time and the Social Determinants of Health Inequity
The 1980 U.S. Census indicated that the Hispanic/Latino population was slightly more than 6% of the total population, but that population represented nearly 15% of AIDS diagnoses in 1985 (CDC, 2013e). By 2010, the Hispanic population had grown to nearly 17% of the U.S. population, with 2010 incidence data showing the group now represents 21% of new HIV diagnoses (CDC, 2013b). In the early twenty-first century, there has been an increased interest in determining the country of origin of Hispanic individuals diagnosed with HIV/AIDS in order to develop more culturally appropriate programming to target disease transmission within these groups. In 2010, the largest Hispanic subgroup in the United States was Mexican, comprising 64% of the Hispanic population, followed by Puerto Rican at 9%, and nearly 8% identified as Central American other than Mexico. South Americans were 5.5%, 3.4% identified as Cuban, and Dominicans at 2.8% (U.S. Census Bureau, 2012b). More than half of all foreign-born individuals in the United States identify Latin America or the Caribbean as their region of birth (U.S. Census Bureau, 2012a).
Men accounted for almost 90% of all new HIV infections among Hispanics, with nearly 80% of those cases occurring in MSM. The HIV infection rate among Hispanic men was almost three times that of White men (45.5 v. 15.8 per 100,000) (CDC, 2011a). Hispanics/Latinos accounted for 19% of people living with HIV infection in 2009, and at some point in life, 1 in 36 Latino men will be diagnosed with HIV and 1 in 106 Latina women will be diagnosed with HIV (CDC, 2013a). Stigma around homosexuality may add to prevention challenges with Hispanic/Latino MSM.
Traditional gender roles may play a role in Latina women accounting for 21% (2,000) of new infections among Latinos in 2009, four times that of White women (11.8/100,000 vs. 2.6/100,000) (CDC, 2011a). Hispanic women are most likely to be infected with HIV as a result of sexual contact with men without awareness of their male partner’s risk factors (CDC, 2013d). Because of cultural traditional gender roles, Latinas may be uncomfortable to talk about, and negotiate, condom use with their partners.
Latinos in the Northeast are more likely than those in other regions to have been infected via intravenous drug use (IDU) (CDC, 2013b). The CDC (2010c) reports that, for Hispanic/Latina females, intravenous drug use is the second greatest HIV transmission mode; the first is heterosexual contact. Of all male injection drug users with HIV/AIDS in 2010, 32% were Hispanic/Latino males, 19% were White males, and 47% were Black males. Of all female injection drug users with HIV/AIDS, 15% were Hispanic/Latina females, 30% were White females, and 51% were Black females (CDC, 2010c).
Sexually transmitted diseases can place individuals at a higher risk for HIV. In 2010, the Hispanic population had nearly three times the rate of reported cases of chlamydia than Whites, the gonorrhea rate was 2.2 times the rate among Whites, and the rate was higher for Hispanic men than for Hispanic women (CDC, 2010d). Approximately 16% of primary and secondary syphilis cases reported to the CDC were among Hispanics. Those who cannot afford basic necessities may have trouble accessing and affording quality sexual health services (Institute of Medicine, 1997). As an example, in 2009, the poverty rates, unemployment rates, and high school drop-out rates for Blacks, American Indians/Alaska Natives, and Hispanics were higher than for Whites, differences commensurate with the observed disparities in STD burden (U.S. Department of Labor & Bureau of Labor Statistics, 2010; DeNavas-Walt, Proctor, & Smith, 2010).
The HIV/AIDS epidemic in this community is fueled by other factors of social determinants of health. The Hispanic/Latino community has disproportionately low access to health care; this is reflected in the number of deaths from AIDS among Hispanics/Latinos, which has remained relatively stable since the beginning of the new millennium despite an overall decline in AIDS mortality in the United States (CDC, 2012b). Although Hispanics/Latinos make up 13% of the U.S. population, they account for 36% of the uninsured, and are nearly three times more likely than Whites to be uninsured (U.S. Census Bureau, 2011a). In addition, the U.S. Census Bureau (2012a) reports across age groups, rates of uninsurance are substantially higher among noncitizen Latinos than U.S.-born and naturalized Latinos. Language barriers, cultural factors, fear of discrimination, stigmatization, immigration and migration patterns have also been identified as barriers to HIV treatment and prevention for the Hispanic/Latino community. Specific to migration, research regarding the incidence of HIV/AIDS in Hispanic/Latino migrant or seasonal farmworkers has identified infection rates that range from as low as 2.6% to as high as 13%, although these numbers have been doubted as they do not fairly encompass the farmworker population (National Center for Farmworker Health, 2011). The range of these numbers alone indicates that this population merits further examination, if we are to truly make an impact on the disease in the Hispanic/Latino population. Furthermore, characteristics of farmworkers’ migrant lifestyle can contribute to an increased risk of contracting HIV, including poverty, sub-standard housing, limited access to health care, limited English proficiency, a mobile lifestyle, and social isolation (Espinoza, Hall, & Hu, 2009).
Asians, Native Hawaiians, and Other Pacific Islanders
Changes in Prevalence Over Time and Social Determinants of Health Inequity
In the 1980 census, Asians and Pacific Islanders were combined in to one racial group, and they were 1.5% of the U.S. population. In 1985, the rates of HIV/AIDS reported in this group were nearly zero. These groups were separated in the 2010 U.S. census, and Asians were found to be 5% of the population, while Native Hawaiian/Other Pacific Islanders were .2% of the population. These small numbers sometimes obscure the diversity of these groups; the October 1999 National Minority AIDS Council report on HIV/AIDS described Asians and Pacific Islanders as very diverse, with many subgroups that reflect variations in historical backgrounds, language, and cultural traditions. Asians in the U.S. represent twenty-nine ethnic and national groups, Pacific Islanders represent 19 ethnic and national groups, and there are more than 100 different languages spoken among all populations (Maldonado, 1999). The largest subgroups of Asians in the United States are Chinese, Filipinos, and Japanese. Hawaiians, Samoans and Guamanians represent the largest subgroups of Pacific Islanders (Maldonado, 1999).
Despite their small representation in the U.S. population, Asians represented 2% of new HIV diagnoses in 2010—a significant increase for this population, and one that is not often discussed. It is also notable that from 2008 to 2011, though diagnosis rates remained stable or decreased for every other racial and ethnic group, the rates increased for Asians. Native Hawaiians and Other Pacific Islanders represented fewer than 1% of new diagnoses in 2010. Of the estimated 814 Asians who received an HIV diagnosis in 2010, 678 (83%) were male and 134 (17%) were female (CDC, 2012d). The two cases unaccounted for in the numbers are attributed to a perinatal case and one “other.”
Among Native Hawaiians and Pacific Islanders, 88% of PLWHA are male, and 12% are female. In terms of routes of transmission, more than 70% of the Asians and Native Hawaiian/Pacific Islanders who are infected with HIV are men who have sex with men (MSM). From 2001 to 2006, the largest proportionate increase (255.6%) in number of HIV/AIDS diagnoses among all MSM groups was Asian MSM aged 13–24 years (CDC, 2008). Asian American women are 20% more likely to be diagnosed with HIV than White women. Though Asians are at higher risk for HIV diagnosis and are less likely to get tested, this population has lower AIDS rates than its White counterparts and is less likely to die of HIV/AIDS (OMH & OMH, 2013a). Sexually transmitted diseases are considered a risk factor for HIV/AIDS infection. Although the Asian/Pacific Islander population did not experience an increase in primary and secondary syphilis infections, the 2010 chlamydia rate among Asians/Pacific Islanders was 115.3 cases per 100,000 population, an increase of 5.1% from 2009 (CDC, 2010d).
Several social determinants of health that impact the steady increase in AIDS diagnoses include economic hardship, citizenship status, distrust of the American health-care system, language difficulty, availability of health services in their communities, cultural avoidance of discussing issues related to sexual behavior, alcohol or drug use, and stigmatization associated with disease (CDC, 2013f). Asians and Pacific Islanders are emerging as a group for which HIV/AIDS is a major public health concern.
Native Americans/Alaskan Natives
Changes in Prevalence Over Time and the Social Determinants of Health Inequity
In the 1980 census, American Indian and Alaska Natives were .63% of the population and, as with the Asian/Pacific Islander population, were nearly 0% of HIV diagnoses. By the 2010 Census, this group had increased to 1.2% of the U.S. population, and it represented fewer than 1% of new HIV diagnoses in that same year. Through the end of 2010, an estimated 3,603 American Indian and Alaska Natives had been diagnosed with AIDS. Of those, an estimated 1,945 have died (CDC, 2013c). Because of their small population size, it is not yet apparent the impact HIV/AIDS has on the American Indian and Alaska Native populations. In 2013, the CDC reported that HIV infection was the ninth leading cause of death among American Indian and Alaska Native men and women aged 25 to 34 years, and compared to other race/ethnicities, they have poorer rates of survival after receiving an HIV/AIDS diagnosis (CDC, 2013c). There were more men than women diagnosed with HIV infection in 2010; American Indian and Alaska Native men accounted for 76% (161) and women accounted for 24% (51). Seventy five percent (120) of the estimated 161 HIV diagnoses among men were attributed to male-to-male sexual contact. Not unlike the routes of transmission among other women of color, 63% (32) of the estimated 51 HIV diagnoses among American Indian and Alaska Native women were attributed to heterosexual contact (CDC, 2013c).
In communities where STD prevalence is higher, individuals may have a more difficult time reducing their risk for infection. With each sexual encounter, they face a greater chance of encountering an infected partner than those in lower prevalence settings (Hogben & Leichliter, 2008). American Indians and Alaska Natives also have higher rates of chlamydia, gonorrhea, and syphilis, increasing their susceptibility to HIV infection. In 2010, the CDC reported that the rate of chlamydia among American Indians/Alaska Natives in the United States was more than four times the rate among Whites, and the gonorrhea rate was 4.6 times the rate among Whites (CDC, 2010d). The disparity between gonorrhea rates for American Indians/Alaska Natives and Whites was larger for American Indian/Alaska Native women (5.0 times) than for American Indian/Alaska Native men (3.9 times), and the rate of primary and secondary syphilis for American Indians/Alaska Natives was 1.2 times the rate for Whites (CDC, 2010d).
Alcohol and substance abuse are also associated with HIV infection because of their ability to reduce inhibitions and impair judgment. Compared with other racial/ethnic groups, American Indians and Native Alaskans tend to use alcohol and drugs at a younger age, use them more often and in higher quantities, and experience more negative consequences from them (CDC, 2013c). Compared with other racial/ethnic groups, American Indians and Native Alaskans have higher poverty rates, have completed fewer years of education, are younger, are less likely to be employed, and have lower rates of health insurance coverage (CDC, 2013c). Social determinants of health inequity impacting the vulnerability of American Indians and Native Alaskans to HIV/AIDS infection include culturally based stigma and confidentiality issues, fewer years of education, and socioeconomic issues including unemployment, limited access to high-quality health care and insurance coverage, poor housing options, and HIV-prevention education. Historical mistreatment of the American Indian and Alaska Native populations may be the basis for mistrust of the government and its health-care facilities; many may avoid accessing what health-care services are available to them.
Geographically, AIDS remains an urban disease, with most individuals diagnosed in 2009 living in cities with more than 500,000 people. Areas hardest hit based on ranking of AIDS cases include Miami and Jacksonville, Florida; Baton Rouge, Louisiana; New York City; and Washington, D.C. (National Prevention Information Network, 2012). When evaluating AIDS diagnoses in 2010 by race and ethnicity, African Americans are the largest group affected in the Northeast (48%), South (62%), and Midwest (51%) (CDC, 2012e). The population in the West with the highest percentage of AIDS diagnoses in 2010 was Whites, with 39%, followed closely by Hispanics, with 34%. As with the total number of PLWHA, these percentages can be deceiving; when rates are calculated, American Indian/Alaska Natives have nearly the same rate of PLWA in the Northeast as that of Whites (86.8/100,000 and 87.6/100,000 respectively) (CDC, 2012e). As noted, the West is somewhat of an outlier, with a greater diversity of populations living with HIV/AIDS than the rest of the country. In this region, Asians comprise 4% of PLWHA, and American Indian/Alaska Natives are 2% (CDC, 2012e). This region in particular would benefit from more targeted culturally appropriate prevention and treatment messages for these populations if there is to be an impact on the disease in those communities.
When examined at a more local level, more than 30% of the nation’s HIV diagnoses were made in only three states; California, Florida, and Texas (The Henry J. Kaiser Family Foundation, 2013). Also important when examining rates of HIV diagnosis for the United States, the District of Columbia, and U.S. territories, Washington D.C. is far and away the location with the highest rate of diagnoses, at 177.9 per 100,000 (The Henry J. Kaiser Family Foundation, 2012). This almost unbelievable rate is followed by a dramatic drop to 39.5 per 100,000 in the U.S. Virgin Islands, with Louisiana (36.6), Maryland (36.4), Florida (32.2), Georgia (31.4), New York (30.1), Puerto Rico (28.6), Mississippi (25.3), and Texas (24.5) rounding out the top ten highest rates in the nation (The Henry J. Kaiser Family Foundation, 2013).
Washington D.C.’s high rate of HIV diagnoses is all the more shocking when the population living with HIV/AIDS is examined by race and ethnicity; though African Americans/Blacks constitute only about half of the total population living in Washington, more than three-quarters of PLWHA there are African American or Black. Rates of HIV diagnoses for African Americans in Washington are greater than 282 per 100,000; more than 6% of Black/African American men and 2.6% of Black/African American women living in the nation’s capital are living with HIV/AIDS (The Henry J. Kaiser Family Foundation, 2012). Other areas with notably high rates of HIV in the African American/Black population include Maine (170.5), Massachusetts (126.7), and Florida (106) (CDC, 2013e).
Areas with the highest rates of HIV diagnosis for Latinos include Washington, D.C. (138), Massachusetts (64.5), New York (53.4), Louisiana (52.7), Pennsylvania (42.7), and West Virginia (40.7) (CDC, 2013e). With the exception of New York, none of these locations reported a Hispanic/Latino population greater than 10% in the 2010 Census. While the numbers of individuals living with HIV in these states might be small, the need for culturally and linguistically appropriate prevention and treatment services in these areas is even greater if a larger-scale epidemic is to be avoided.
Response to the HIV/AIDS Crisis Among People of Color
To address the imbalance of health inequity, there must be a complement of individual-level interventions, intended to influence knowledge, attitudes, and behaviors, with new approaches that address the interpersonal, network, community, and societal influences of disease transmission (Dean & Fenton, 2010). Race, as it intersects with poverty, gender, and sexuality, among other factors, becomes the embodiment of a multifaceted social exclusion and the rationalization for massive health inequities (Gravlee, 2009; Kochhar, Fry, & Taylo, 2011; Meizhu, Barbara, Betsy, Rose, & Rebecca, 2006). To further prevent the transmission of the disease, there is a need for individual behavioral interventions while concurrently addressing the social determinants of health-impacting HIV risk among communities of color.
HIV Prevention and Education Services
HIV testing and linkage to care remains critical to ensuring PLWHA are receiving life-saving medical care and reducing the risk of transmitting the virus to others (Connor et al., 1994). In 2009, 68% of African Americans had been tested, compared to 57% of Latinos and 42% of White Americans (The Henry J. Kaiser Family Foundation, 2009). The paradox is that, although African Americans are tested at a higher rate, they still have higher rates of HIV infection. Likewise, Rountree, Chen, Brown, & Pomeroy (2009), in a study of the HIV testing rates among Whites, African Americans, and Hispanics, found that African Americans report higher testing rates. These authors suggest that testing alone will have limited efficacy in prevention without culturally and contextually relevant prevention strategies and addressing the social determinants of health inequity.
In terms of testing for Asians and Pacific Islanders, despite their risk factors for HIV infections, according to the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System, Asians and Pacific Islanders are significantly less likely than members of other races or ethnicities to have been tested for HIV (Kahle, Freedman, & Buskin, 2005; Zaidi et al., 2005). Furthermore, a greater percentage of adult and adolescent American Indians and Alaskan Natives (25%) were estimated to have undiagnosed HIV infection at the end of 2009. This translates to approximately 1,100 people in the American Indian and Alaskan Native community living with undiagnosed HIV infection at the end of 2009 (CDC, 2013g). Prevention efforts to increase HIV testing and linkage to care specifically for the American Indian and Alaskan Native communities is facilitated by the Office for State, Tribal, Local, and Territorial Support (OSTLTS), which serves as the primary link among CDC, the Agency for Toxic Substance and Disease Registry, and tribal governments. OSTLTS’ tribal-support-activities focus is on fulfilling CDC’s supportive role in ensuring that American Indian and Native Alaskan communities receive public health services that keep them safe and healthy.
Mobilizing broader community-action activities would include Act Against AIDS (AAA), which focuses on raising awareness among all Americans and reducing the risk of infection among the hardest-hit populations: gay and bisexual men, African Americans, Latinos, and other communities at increased risk (CDC, 2013h). AAA uses several concurrent HIV-prevention campaigns and mass media (TV, radio, newspapers, magazines, and the Internet) to deliver important HIV-prevention messages to encourage African American women and African American gay and bisexual men to get tested, and a newer campaign to fight stigma and raise general awareness of the disease. As a natural extension of AAA, the Act Against AIDS Leadership Initiative (AAALI) is a partnership between CDC and many of the country’s leading organizations that represent the populations hardest hit by HIV. AAALI was formed to strengthen HIV-prevention efforts in Black communities, and it has been expanded to include organizations that focus on Black MSM and the Latino community. The CDC expanded AAALI to include three national organizations that focus on Latino populations, placed Spanish-language versions of Act Against AIDS campaign messages on billboards and bus shelters in predominantly Latino neighborhoods, and distributed Spanish-language Act Against AIDS television public service announcements to the Univision, Telemundo, TeleFutura, and NBC en Español television networks.
CDC and its partners are pursuing a High-Impact Prevention approach to reducing new HIV infections (Mermin, 2011). By using combinations of scientifically proven, cost-effective, and scalable interventions targeted to the most at-risk populations in the geographic areas with high HIV prevalence rates, this approach promises to increase the impact of HIV prevention efforts. This approach is designed to maximize the impact of prevention efforts for all Americans at risk for HIV infection, including gay and bisexual men, communities of color, women, injection drug users, transgender women and men, and youths (CDC, 2011b).
Progress has been made with the involvement of African American churches in the fight against HIV/AIDS. The Balm in Gilead is a leader in the education of African American clergy across the nation; this organization focuses on increasing clergy’s involvement in HIV prevention and education in their churches and neighborhoods (Hatcher, Burley, & Lee-Ouga, 2008). Other types of HIV/AIDS-related interventions facilitated by the Black church have included Project F.A.I.T.H. (Lindley, Coleman, Gaddist, & White, 2010), Gospel Against AIDS (2003); Black Church Outreach Project (Runnels, 2011), and the Metropolitan Community Foundation (Metropolitan Community Church of San Francisco, 2012).
Culturally relevant individual, small-group, and community interventions for people who are at high risk for HIV can reduce risk behavior and play an important role in many comprehensive HIV-prevention strategies (CDC, 2006), and people living with HIV/AIDS, or at high risk of infection, need access to condoms and sterile syringes (Cohen, Farley, & Bedimo-Etame, 1999; Fuller, Ford, & Rudolph, 2009). Programming tailored to risk factors such as substance abuse, specifically helping drug users to stop injecting (Drumright & Colfax, 2009; Fuller et al., 2009) and screening and treatment for sexually transmitted infections are other approaches to reducing the risk for infection (Baeten, Strick, & Lucchetti, 2008).
Last, the CDC supports research to develop new, effective behavioral interventions, as well as the adaptation of existing interventions and national dissemination of effective HIV behavioral interventions for communities for color delivered by health departments and community-based organizations (CBOs) around the country. A complete list of the evidence-based HIV behavioral interventions can be found at http://www.cdc.gov/hiv/prevention/research/compendium/rr/complete.html.
Social Determinants of Health
The conditions in which people are born, grow, live, work and age, including the health system, weigh more heavily in the cause and course of every leading category of illness than any attitudinal, behavioral, or genetic determinant (WHO & Commission on Social Determinants of Health, 2012). The World Health Organization (WHO) recommends that we focus on improving daily living conditions, tackling the inequitable distribution of power, money, and resources, and measuring and understanding the impact of interventions to promote health equity (WHO).
Ryan White CARE Act
In 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was enacted by the U.S. Congress. A hemophiliac, Ryan White was diagnosed with AIDS in 1984, when he was only 13 years old. Ryan’s court battle to continue attending school—he was blocked from attending because of his HIV status—had attracted national attention, and he quickly became the face of a changing disease. Ryan White died just months before the legislation that was named after him became law. The Ryan White program is housed in the HIV/AIDS Bureau of the Health Resources and Services Administration (HRSA), a division of the U.S. Department of Health and Human Services.
The legislation was initially established in multiple “titles,” now called “parts,” to address the epidemic in a holistic way. Title I (now Part A) was designed to help areas with a high burden of disease; funding would go directly to these cities to provide care and treatment for HIV/AIDS in a manner that made the most sense for their populations. Planning councils comprising stakeholders were established to ensure that funds were allocated to services that met the needs of individuals living in that community. Title II (now Part B) provided funding for each state and territory; state and territorial health departments would be responsible for providing services to all people living with HIV. Title III (now Part C) aimed to increase the availability of early-intervention services in health-care agencies, and included counseling, testing, and referral services. Title IV (now Part D) established services for women, infants, and children impacted by HIV; demonstration grants for clinical research were allowed under this title, as well as health-care, case management, and supportive services for families.
Added in a 1996 reauthorization of the CARE Act, Part F includes the AIDS Education and Training Centers, Special Projects of National Significance programs, and the Dental Reimbursement Program. AIDS Education Training Centers provide training to care providers on advances in medical care and treatment, as well as targeted assistance to providers in specialized populations (U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), & HIV/AIDS Bureau., 2009). The Special Projects of National Significance program was originally housed under Title II of the original legislation, but it grew to need its own funding stream. Innovative projects targeting specific populations are funded through this program, with funded projects constantly changing to reflect the evolution of the epidemic. A focus on historically underserved populations, as well as replicability in other locations, remains an important factor when applying for these funds. The Dental Reimbursement Program was created out of recognition of the role dentists could play in diagnosing and treating HIV, if they are trained appropriately. The program was initially limited to academic dental institutions, but the Act’s 2000 reauthorization expanded the program to include partnerships between these institutions and local dentists and dental clinics. The increased availability of providers anticipated as a result of this expansion holds great promise for improved access to dental care for PLWHA in more rural areas (HRSA, 2009).
Work to address the disproportionate impact on minority populations and increase the allocation of resources to these communities started in earnest in 1999, through the Presidential Advisory Council on HIV/AIDS and the Congressional Black Caucus (CBC). Initially called the CBC Initiative, funding to address HIV/AIDS in African American and Latino communities was established in 1999. The Congressional Hispanic Caucus and Congressional Asian Pacific Caucus joined the CBC Initiative in 2000 to advocate for increased HIV funding and resources for all minority populations, and the CBC initiative was renamed the Minority AIDS Initiative and expanded to include Asian Americans, American Indians/Alaska Natives, and Native Hawaiians/Pacific Islanders in addition to African Americans and Latinos (HRSA, 2009). Funding for the Minority AIDS Initiative was allocated among all titles of the Ryan White program from 2000, but sustainability concerns and a renewed focus on increasing capacity for providing culturally competent services to minority communities prompted the Minority AIDS Initiative’s inclusion under Part F in the 2006 reauthorization.
The eligibility criteria for receiving services through the Ryan White program varies by location and funding availability, but the program primarily serves the uninsured or other individuals who are unable to afford the expensive medical treatments and services associated with living with HIV. The Ryan White program’s 2010 Progress Report indicates that 68% of clients served were at or below the federal poverty level, with an additional 22% reporting a household income between 101% and 200% of the federal poverty level (U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration, (HRSA), & HIV/AIDS Bureau, 2010). Demographically, the clients served by the program identify as 47% African American/Black; 27% White; 22% Hispanic/Latino(a), 1% American Indian/Alaska Native, 1% Asian, 1% identified more than one race, and fewer than 1% Native Hawaiian/other Pacific Islander (HSS et al.). When viewed this way, it is clear that Ryan White programs must provide culturally competent care to the populations they serve.
The Ryan White program was been reauthorized four times between 1990, most recently in 2009, and is funded through fiscal year 2013. It is expected that, in light of the passage of the Patient Protection and Affordable Care Act, the Ryan White program will look different after the 2013 fiscal year, though complications with implementation of the Patient Protection and Affordable Care Act are expected to heavily influence patient access. Every reauthorization process is a chance to further refine programming to better suit the needs of the population accessing services; the expanded availability of health insurance to PLWHA through the elimination of pre-existing condition clauses and affordable coverage, among other changes, has the potential to completely change the system of care for people living with HIV that has been developed in this country.
In 1992, the AIDS Housing Opportunity Act, part of the National Affordable Housing Act of 1990, established the Housing Opportunities for Persons With AIDS (HOPWA) program. Through increased availability of affordable housing, the program aims to decrease homelessness, the risk of homelessness, and unstable housing situations for people living with HIV/AIDS. The Department of Housing and Urban Development, the agency responsible for the HOPWA program, maintains a database of more than 300 peer-reviewed articles linking the necessity of affordable housing to improved health outcomes for people living with HIV. An examination of the clients served by the HOPWA program shows that nearly 52% of program participants identify as African American/Black, and approximately 20% identify as Hispanic/Latino(a) (HUD & Office of Community Planning and Development, 2012).
The Patient Protection and Affordable Care Act
As mentioned in the Ryan White section, the Patient Protection and Affordable Care Act is federal health-care legislation that has the potential to dramatically alter the way medical care is accessed by PLWHA across the country. Along with an individual requirement to maintain health insurance, the legislation aims to make improvements to insurance plans, in order to make health insurance available to and more affordable for all people in the United States. Many of the changes in the “Patient’s Bill of Rights” are expected to have a large impact on people living with HIV. These include the elimination of pre-existing condition clauses that previously either made the cost of insurance so expensive that many PLWHA could not afford to purchase insurance, or that prevented individuals from accessing health insurance altogether; elimination of lifetime and annual limits on benefits; a requirement that any health-insurance rate increase greater than 10% be justified and approved by state or federal rate reviewers; establishment of Consumer Assistance Programs to advocate for individuals to health insurance plans; inclusion of no-cost preventive services for many routine screenings, flu and pneumonia shots, and counseling on a variety of topics, including substance abuse and treating depression; ending the arbitrary cancellation of health insurance policies; extending eligibility for adult children to stay on their parents’ insurance plans until the age of 26; and a gradual closure of the “donut hole” in Medicare prescription drug coverage (HHS et al., 2010). Though the law has been a point of contention nationwide, there is great potential contained within these changes to positively impact PLWHA, especially in light of the social determinants of health at work in communities of color. Already, the Act has led to improvements in access to and quality of care for people living with HIV, and when fully implemented, it is expected to significantly expand access (Crowley & Kates, 2012).
One population that is not expected to benefit from the Affordable Care Act is undocumented immigrants. By law, these individuals are prohibited from enrolling in Medicaid, and will also not be eligible to purchase insurance through the health insurance exchanges established by the act (U.S. Department of Health and Human Services [HHS], Office of Human Services Policy, & Office of the Assistant Secretary for Planning and Evaluation, 2012). Immigrants who have come to the United States lawfully will have differential access to these services, depending on the length of time they have been in the country (HHS et al.). Given the information discussed earlier regarding the percent of PLWHA who are foreign born, and that in the United States these individuals are already less likely to have access to health insurance, the health outcomes for immigrants with HIV/AIDS are not likely to be positively impacted by this legislation.
National HIV/AIDS Strategy
In July 2010, the White House Office of National AIDS Policy (ONAP) released its National HIV/AIDS Strategy. For the first time since the epidemic started, the United States has a federally created comprehensive approach to addressing HIV/AIDS, with accompanying targets to be achieved over a five-year period. The National Strategy has three main goals; reduce new infections, increase access to care and improve health outcomes for people living with HIV/AIDS, and reduce HIV-related disparities and health inequities (ONAP, 2010). Under the National Strategy, prevention initiatives will strive to reduce the number of new infections by 25% and the transmission rate by 30%. These objectives are rather conventional, and they encourage prioritization of communities most impacted by HIV/AIDS. A third measure of the goal to reduce new infections is to increase the number of people aware of their HIV status by 11%. Though on the surface this measure might not seem closely related to prevention efforts, research indicates that if an individual knows his or her status, he or she is less likely to engage in behaviors that increase the risk of transmitting the virus (Marks, Crepaz, Senterfitt, & Janssen, 2005). In addition to identifying Black men and women as a priority population for this goal, action steps within the plan also specify efforts must be made to improve surveillance in the Asian American/Pacific Islander, and American Indian/Alaska Native populations (ONAP, 2010).
The goal to increase access to care and improve health outcomes for people living with HIV involves the expected focus on linkage to care after receiving a diagnosis and introduces an accountability measure for the Ryan White program in the National HIV/AIDS Strategy Federal Implementation Plan (ONAP, 2010), increasing the number of Ryan White clients who are engaged in continuous medical care to 80% by 2015. The third benchmark for this goal incorporates a cross-systems, holistic, approach by targeting an increase in the number of Ryan White clients reporting permanent housing. Though Ryan White clients will be the variable measured, the administration states that they will serve as a proxy measure for increased access to affordable stable housing for all PLWHA (ONAP, 2010).
Addressing HIV-related disparities and health inequities in the strategy requires an acknowledgement that HIV started, and remains concentrated, in marginalized and underserved populations. Though the Affordable Care Act is expected to begin addressing some of the access barriers experienced by these populations, the strategy incorporates a community-level approach to addressing disparities in treatment and services available to the populations bearing the greatest burden of HIV in the United States. The three benchmarks targeted to be achieved by 2015 are all to reduce the number if HIV diagnosed individuals with a detectable viral load, but they are for distinct populations; gay and bisexual men, Blacks, and Latinos (ONAP, 2010). Achieving these targets will require, as indicated in the action steps for the goal, community-driven strategies that address cultural barriers to accessing care and decrease stigma about HIV and risk behaviors in the community, among others. By empowering communities impacted by the disease, and allowing them to determine what its people need most, the possibility of achieving the national benchmarks is greatly increased. Nearly halfway through the measurement period, ONAP released regular progress reports detailing implementation of the National Strategy. Though change at the federal level can sometimes be painfully slow, the reports indicate that progress is being made.
Robinson, Chae, Chung, Decena, Harawa, and Moodie-Mills state that “we must moved beyond exclusively targeting the so-called risk behaviors of the most vulnerable groups to also address the root causes of those structural inequalities—the distribution of wealth, power, and resources based on real or perceived differences of race, class, gender, sexuality, national origin, and immigration status—that constrain individual and collective agency, generate chronic stress, erode immune system functioning, and block access to effective treatment.” (2012, p. 3) These researchers recommend new directions for research and policy to explore the impact of social determinants such as residential segregation and housing discrimination; education; criminal justice, including HIV exposure laws; and immigration as facilitators of HIV risk among communities of color.
Culturally and Linguistically Appropriate Services
The provision of culturally and linguistically appropriate services (CLAS) is one strategy to help eliminate health inequities. Created by the U.S. Department of Health and Human Services’ Office of Minority Health (OMH), the National Standards for Culturally and Linguistically Appropriate Services (National CLAS Standards) serve as a guide to providing culturally and linguistically sensitive services to diverse populations (OMH, 2013b). These standards go beyond traditional requirements of cultural competency, and they encourage health and health-care organizations to make an effort to understand the unique needs of the populations they serve by tailoring services to an individual’s culture and language preference. Culturally and linguistically appropriate services address the importance of cultural factors that may affect the risk of HIV infection. For example, it is important for those practitioners serving Latinos to know that some may avoid seeking testing, counseling, or treatment if infected out of fear of discrimination, stigmatization, or immigration status. Be cognizant that traditional gender roles and the stigma around homosexuality may add to prevention challenges in serving this community. Greater acculturation into the U.S. culture has both negative (engaging in behaviors that increase the risk for HIV infection) and positive (communicating with partners about practicing safer sex) effects on the health behaviors of Latinos (CDC, 2011c). Due to fear of disclosure, undocumented immigrants may be less likely to access HIV-prevention services, get an HIV test, or receive adequate treatment and care if living with HIV. When serving this population, it is important to note that research shows that Latinos born in different countries have different behavioral risk factors for HIV. Data suggest that Hispanic individuals that were born in Puerto Rico are more likely than Hispanics who were not born in Puerto Rico to contract HIV as a result of injection drug use or high-risk heterosexual contact. By contrast, sexual contact with other men is the primary cause of HIV infection among men born in places such as Mexico and the fifty U.S. states (CDC, 2011c).
Among Asians and Pacific Islanders, there are many nationalities—Chinese, Filipinos, Koreans, Hawaiians, Indians, Japanese, Samoans, Vietnamese, and others—and more than 100 languages and dialects. The subgroups differ in language, culture, and history. Asians and Pacific Islanders living in the United States who are foreign born might experience cultural and language barriers to receiving public health messages. Additionally, many health surveys are administered only in English, and perhaps Spanish, a situation that may cause miscommunication or exclude Asians and Pacific Islanders who do not speak English (Chin, Kang, Kim, Martinez, & Eckholdt, 2006).
There are 566 federally recognized American Indian and Native Alaskan tribes, whose members speak some 200 languages. Because each tribe has its own culture, beliefs, and practices, and these tribes may be subdivided into language groups, it can be challenging to create culturally appropriate prevention programs for each group. Tribal and cultural differences regarding gender and sexuality within these communities of color must be considered in developing culturally appropriate prevention strategies. American Indian and Alaska Native gay, bisexual, or “two-spirit” men (men who have sex with men) may face culturally based stigma and confidentiality issues that may limit opportunities for education and HIV testing, especially among those who live in rural communities or on reservations (CDC, 2013g).
Though culturally and linguistically appropriate services are not required by the federal government, agencies at the state level have started to embrace the importance of these standards, with several implementing laws requiring some degree of cultural and linguistic competency training for health-care workers. Utilizing the CLAS Standards allows a health or health-care agency to examine the populations it serves and to take steps to ensure that policies, procedures, programs, and staffing are appropriate for that group. The provision of health-care services that are respectful of and responsive to the health beliefs, practices, and needs of diverse patients can help close the gap in health-care outcomes (Mayberry, Nicewander, Hauanying, & Ballard, 2006).
Healthy People Initiative/Promoting Health Equity
The Health People Initiative, started in 1970, is a set of 10-year objectives to improve the health of Americans. Objectives for the initiative are based in data and written to be achievable within the ten-year timeframe. When developing Healthy People 2020, the Department of Health and Human Services (HHS) incorporated feedback from stakeholders in public health; local, state, and federal government; and organizations representing various interests, as well as the public. These comments drove the Initiative to consider a broad range of new topics on which to focus, including the social determinants of health. An expansion of previous Healthy People goals focusing on health disparities was included in Healthy People 2020; achievement of health equity and elimination of health disparities was identified as one of the overarching goals for the Initiative (HHS, 2010). General health status, health-related quality of life and well-being, determinants of health, and disparities are the four foundation health measures that were to be used to indicate progress on this and other goals (HHS, 2010). Elevating the social determinants of health to the national level, and making the elimination of health disparities a nationwide goal reflects a better understanding of all the factors influencing disease in our country, and holds promise for improving outcomes for PLWHA.
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Act Against AIDS campaign: A five-year national campaign launched by the Centers for Disease Control and Prevention (CDC) and the White House to combat complacency about HIV and AIDS in the United States. Launched in 2009, Act Against AIDS focuses on raising awareness among all Americans and reducing the risk of infection among the hardest-hit populations—gay and bisexual men, African Americans, Latinos, and other communities at increased risk. http://www.cdc.gov/actagainstaids/
Act Against AIDS Leadership Initiative (AAALI): A partnership between CDC and many of the country’s leading organizations that represent the populations hardest hit by HIV. AAALI was formed to strengthen HIV prevention efforts in black communities, and then it expanded to include organizations that focus on black MSM and the Latino community. http://www.cdc.gov/actagainstaids/partnerships/index.html
AIDS.gov: Comprehensive government HIV resources, including Progress Reports on the National HIV/AIDS Strategy. http://www.aids.gov
AIDSInfo: Information on medical treatment and clinical trials. (1-800-448-0440). http://www.aidsinfo.nih.gov
CDC HIV: The primary access point for HIV science and public health information from CDC. http://www.cdc.gov/hiv
CDC-INFO: Get answers to questions and locate HIV testing sites, information about personal risk, and prevention. 1-800-CDC-INFO (232-4636) or 800 (232-4636). Cdcinfo@cdc.gov
CDC National HIV Testing Resources: Text your ZIP code to KNOW IT or 566948 to locate an HIV testing site near you. http://hivtest.cdc.gov
CDC National Prevention Information Network (NPIN): Technical assistance and resources. www.cdcnpin.org 1-800-458-5231
Centers for Medicare and Medicaid Services, Outreach and Education: Offers customizable resources that community-based organizations, faith-based communities, and other groups can use to educate their constituencies about Health Insurance Marketplaces. http://www.cms.gov/Outreach-and-Education/Outreach-and-Education.html
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention: Maximizes public health and safety nationally and internationally through the elimination, prevention, and control of disease, disability, and death caused by HIV/AIDS, viral hepatitis, STDs and TB. www.cdc.gov/nchhstp/newsroom
HIVHealthReform.org: Developed from a project to inform and educate people living with HIV and service providers about the new health law.
Indian Health Service: The Federal Health Program for American Indians and Alaska Natives assists communities that are providing HIV/AIDS related services to increase their capacity for HIV/AIDS prevention in serving Native Americans (defined as American Indians, Alaska Natives, and Native Hawaiians). http://www.ihs.gov/hivaids/
Kaiser Family Foundation Health Reform Source: Offers reader-friendly information for consumers and employers about health care reform, including information about how the Affordable Care Act affects people living with HIV/AIDS. http://kff.org/health-reform/
The National Association for State and Territorial AIDS Directors (NASTAD) Health Reform Watch. An online newsletter providing information about state and federal health reform efforts and how they may affect people living with HIV/AIDS. http://www.nastad.org/
National HIV/AIDS Strategy: National HIV/AIDS Strategy has three primary goals: (a) reducing the number of people who become infected with HIV, (B) increasing access to care and optimizing health outcomes for people living with HIV, and (c) reducing HIV-related health disparities. http://www.whitehouse.gov/administration/eop/onap/nhas
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention Program, Social Determinants of Health White Paper: National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention paper on establishing a holistic framework to reduce inequities in HIV, Viral Hepatitis, STDs, and Tuberculosis in the United States. http://www.cdc.gov/socialdeterminants/docs/SDH-White-Paper-2010.pdf
National Prevention Information Network, CDC: The CDC National Prevention Information Network (NPIN) is the U.S. reference and referral service for information on HIV/AIDS, viral hepatitis, sexually transmitted diseases (STDs), and tuberculosis. http://www.cdcnpin.org
Office of Minority Health: The office is dedicated to improving the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities. http://minorityhealth.hhs.gov/
U.S. Department of Health and Human Services Off ice on Women’s Health: The Office on Women’s Health provides national leadership and coordination to improve the health of women and girls through policy, education and model programs. http://www.womenshealth.gov/index.html
Whitehouse.gov/healthreform: The Obama administration’s web site on health care reform and what the Affordable Act law means to individuals and families.
Asian & Pacific Islanders Wellness Center: Mission is to transform lives by advancing health, wellness, and equality. http://www.apiwellness.org/home.html
The Balm in Gilead: The Balm In Gilead develops educational and training programs specifically designed to meet the unique needs of African American and African congregations that strive to become community centers for health education and disease prevention, including HIV/AIDS. http://www.balmingilead.org/index.php/home-page.html
Banyan Tree Project: A national community mobilization and social marketing campaign to end the silence and shame surrounding HIV/AIDS in Asian and Pacific Islander (A&PI) communities. http://www.banyantreeproject.org/
The Black AIDS Institute: The Institute’s Mission is to stop the AIDS pandemic in black communities by engaging and mobilizing black institutions and individuals in efforts to confront HIV. http://www.blackaids.org/
Hispanic Federation: The Hispanic Federation provides grants to a broad network of Latino nonprofit agencies serving the most vulnerable members of the Hispanic community and advocates nationally with respect to the vital issues of education, health, immigration, economic empowerment, civic engagement and the environment. http://www.hispanicfederation.org/
Latino Commission on AIDS: The Latino Commission on AIDS (Commission) is a nonprofit organization founded in 1990 dedicated to addressing the health challenges and responding to the impact of HIV & AIDS in our communities. http://www.latinoaids.org/
National Alliance for Hispanic Health: To improve the health of Hispanic communities, and work with others to secure health for all. http://www.hispanichealth.org
National Council of La Raza: The largest national Hispanic civil rights and advocacy organization in the United States works to improve opportunities for Hispanic Americans. http://www.nclr.org/
National Minority AIDS Council: NMAC represents a coalition of faith based and community based organizations as well as AIDS Service organizations advocating and delivering HIV/AIDS services in communities of color nationwide. http://nmac.org/about/mission-statement/
Institute of Medicine. Disparities in health care: Methods for studying the effects of race, ethnicity, and SES on access, use, and quality of health care, 2002. Available from http://www.iom.edu/~/media/Files/Activity%20Files/Quality/NHDRGuidance/DisparitiesGornick.pdf