- Hailey Cooper MPH & Susan Reif PhD
HIV-Related Disparities and Inequities in the United States South
Despite improvements in HIV care and prevention in the Unites States (U.S.), the Southern U.S. region continues to experience a disproportionate burden of HIV. Health disparities and inequities related to policymaking and social determinants of health contribute to the overwhelming burden of HIV in the region. Further, over the past year, COVID-19 has exacerbated health disparities in many Southern communities.  To effectively respond to the Ending the HIV Epidemic Initiative (EHE) goals, diagnosing people as early as possible, treating people with HIV rapidly and effectively, preventing new cases with PrEP and syringe service programs, and responding quickly to potential HIV outbreaks, it will be critical to address health disparities and inequities through program and resource enhancement and development and infrastructure reform, especially in the U.S. South.[3,4]
The HIV Epidemic in the South
Despite progress in addressing the HIV epidemic, disparities in specific regions and populations in the U.S. exist. For the last decade, the Southern U.S. has consistently faced complex, multi-layered challenges that reduce the ability to effectively address the HIV epidemic. The Southern states make up 38% of the U.S. population yet account for 51% of new HIV cases and 52% of new HIV diagnoses. In 2016, the South accounted for 47% of HIV deaths, with some Southern states having death rates up to three times higher compared with other states. Additionally, though urban areas account for the majority of new HIV diagnoses in the U.S., the South also experiences a higher proportion of new diagnoses in suburban and rural areas compared with other regions.
HIV is also more prevalent in specific populations in the South, as in the rest of the nation, including people of color and gender and sexual minorities. For instance, in the South, African Americans accounted for 53% of new HIV diagnoses and Hispanic/Latinx people accounted for 21% of new diagnoses. Among women, black women accounted for 67% of new diagnoses in the South. Further, gender and sexual minorities, specifically same gender loving men and transgender women are at an increased risk for HIV.[1,5] For example, Black same gender loving men accounted for 60% of new HIV diagnoses among African Americans in the region. Further, since 2012, Hispanic/Latinx same gender loving men have had a 27% increase in new diagnoses, while white same gender loving men have had a 9% decrease in diagnoses during the same time period. The South also represents the majority of LGBT people in the U.S.; 32% of all LGBT adults in the U.S. live in this region.
Factors Driving the HIV Epidemic in the South
Health disparities and inequities contribute to the disproportionate burden of HIV in the South.[7,8] Health disparities refer to avoidable differences in the incidence, prevalence, mortality, and cause of disease and related adverse health conditions among groups of people. Health disparities are frequently related to the interconnected determinants of health, each of which pose unique challenges to addressing health equity, which is the opportunity for a person to attain full health potential, despite the individual’s social position or other socially determined circumstance, through the elimination of disparities in health and health care.[10-14] Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on race, ethnicity, religion, socioeconomic status, gender identity, sexual orientation, age, mental health, geographic region, among others.
This essay details health disparities related to policymaking and five social determinants of health including: economic stability, neighborhood and built environment, education access and quality, health care access and quality, and social and community considerations as they relate to health disparities and inequities among people living with or at greater risk for HIV in the Southern U.S.
Policies and laws affecting HIV prevention and treatment vary by state, however several key policies including sexual and/or HIV education, anti-LGBTQ+ laws, and HIV criminalization laws are found throughout Southern states and contribute to health inequities among people living with or at risk for HIV.
Sexual and/or HIV Education
Individual state mandates related to sexual and/or HIV education may contribute to the disproportionate burden of HIV in the South. For instance, nine states have no sexual and/or HIV education mandates and of those more than half (56%) are located in the South. Four of the states with no sexual and/or HIV education requirements rank in the top six states with the highest teenage birth rates, all of which are located in the South. Twenty-two states enforce both sex and HIV education, and of those only eight (36%) are in the South. Thirty-seven states require that when sex education is taught, information on abstinence must be provided. Of those states,  require that abstinence be stressed and 50% of those stressing abstinence are in the South. Researchers analyzed data from all 50 states related to abstinence only education and found a clear association between state sexuality education policies and adolescent HIV. The researchers described that states with higher proportions of at-risk populations (higher adolescent HIV and teen pregnancy rates) were more likely to have restrictive abstinence only education programs, which may provide medically inaccurate and stigmatizing information that perpetuates HIV risk.
Enacted anti-LGBTQ+ laws, which exclude the LGBTQ+ community from protections against discrimination, contribute to stigmatizing environments and inequity. This year, in 2021, there has been an unprecedented number of anti-LGBTQ+ measures introduced, with eight already being enacted into law, six of which come from Southern states - AR (4), MS (1), TN(1). This year, Arkansas passed a law banning transgender youth from accessing gender affirming treatment. Anti-LGBTQ+ bills exacerbate stigma and discrimination against LGBTQ+ people and contribute to anti-trans violence that continues to surge throughout the South and the rest of the country.[18,19] Further, nondiscrimination laws protecting LGBTQ+ people from housing, public accommodations, employment, and credit discrimination are also lacking throughout the South. For example, of 20 states that have no explicit prohibitions for housing discrimination based on sexual or gender identity, 60% (n=12) are located in the South. Further, 17 states have no explicit prohibitions for employment, public accommodations, credit, and housing and of those, 65% (n=11) are Southern states. This discrimination, stigma, and violence can prevent LGBTQ+ people from accessing HIV prevention and treatment services, further increasing health disparities in the community.
HIV Criminalization Laws
Since the introduction of HIV criminalization laws in 1986, 37 states have enacted HIV-specific criminal exposure laws to control behaviors of people living with HIV including prohibiting people living with HIV from engaging in sexual activity, sex work, and needle sharing without first disclosing their HIV status, to presumably reduce HIV transmission and promote safer sex practices.[22,23] These laws were first introduced when scientific information regarding HIV including transmission and treatment options was limited, however, despite advancements in the understanding of HIV and treatment options, HIV criminalization laws have largely remained unchanged.[22,23] As of 2020, throughout the South, two states criminalize or control behaviors through STD/communicable/infectious disease-specific statutes, 12 states criminalize or control behaviors through HIV-specific statues and regulations, and the remaining two states have no specific statutes or general criminal statutes. Since 2014, five states have modernized their HIV criminalization laws, with one being in the South. Research examining the impacts of HIV criminalization generally suggest the criminalization laws do not promote the desired behavioral changes rather they discourage HIV testing and status disclosure, increase stigma, and exacerbate disparities.[22,23]
Social Determinants of Health
Social determinants of health are overlapping social and economic systems and structures that affect health, functioning, and quality of life outcomes. Social determinants of health include social and physical environments, health services, and structural and societal factors.
Poor socioeconomic conditions including unemployment, poverty, homelessness, and food insecurity contribute to poorer health outcomes, substance use, delayed HIV treatment initiation, increased HIV mortality, poorer medication adherence, having a detectable viral load, and unhealthy sexual behaviors.[26-29] Research has shown that areas with concentrated poverty experience poor housing and health conditions, higher crime and school dropout rates, and unemployment. The South experiences higher rates of poverty in both metro and nonmetro areas, a higher number of people living in rural areas, lower median incomes, and higher food insecurity rates compared to other regions.[1,30,31] Further, Black and African American people experience the highest incidence of poverty both in metro and nonmetro areas in the South. The Centers for Disease Control and Prevention (2018) describes that areas where more than 18% of the residents live below the federal poverty line account for the highest HIV diagnosis rates as well as have the lowest rates of linkage to care and viral suppression regardless of gender identity, age, race/ethnicity, and by transmission category. Further, limited economic opportunities, homelessness, and food insecurity have been linked to unhealthy sexual behaviors, which could in turn lead to increased engagement in sex work in exchange for money, shelter, food, and safety.[29,33]
Neighborhood and Built Environment
Under-resourced and impoverished neighborhoods have been implicated as a contributing factor for HIV as these communities are often associated with higher crime, substance use, and sex work. Researchers found that among participants living in urban poverty areas, HIV prevalence was high and that high HIV prevalence rates in these areas were related to lower socioeconomic status. In the South, African American people experience poverty at higher levels, which may be due in part to People with higher levels of education are more likely to live healthier and longer lives and achieve potentially higher lifetime earnings resulting in reduced risk for homelessness and financial and food insecurity.[35,36] Disparities related to education access in the South exist; compared to other regions, fewer adults in the South hold degrees. Another health disparity that is often overlooked as a contributing factor to the HIV epidemic is poor health literacy, especially in the South where poor health literacy is prevalent. Contributing factors to poor health literacy include limited education, lower income, chronic conditions, older age, and being a non-native English speaker. Low health literacy is associated with reduced use of prevention services and access to health care services and treatment, and overall poorer health outcomes.[38,40,41] Reduced access to quality education, resulting in poor literacy and even further poor health literacy, could prohibit someone from accurately interpreting written health instructions or from communicating effectively with providers, leading to negative health outcomes.[41,42]
Healthcare Access and Quality
Access to quality health services in addition to providers that are culturally sensitive and affirming are essential for an individual’s health. Barriers to accessing quality healthcare include lack of insurance coverage, reduced availability of services and culturally competent providers, medical mistrust, and language barriers.[43-45] In the Southern U.S., disparities including lack of insurance coverage, healthcare access, service availability, and culturally sensitive providers contribute to reduced access to HIV prevention and care.
Lack of insurance coverage and healthcare access. Increased access to health insurance and HIV care and prevention services improves overall HIV-related care outcomes for people living with and at greater risk for HIV. The Southern states fall behind other states with less of their population having health insurance; the region comprises of 97% of the adults who are considered in the “coverage gap”, which is when an individual has an income above that for Medicaid eligibility, but below poverty levels. In 2012, states were eligible to expand Medicaid to provide increased access to health care, which is especially important for populations disproportionately affected by HIV. Currently, 12 states have yet to adopt Medicaid expansion, and of those two-thirds are located in the South. Lack of insurance coverage leads to the inability of people who are in need of HIV prevention and care services the ability to seek care, ultimately prohibiting early detection and diagnosis of HIV, rapid treatment, and connecting people to prevention services, three of the four EHE pillars. For example, lack of insurance coverage likely contributes to the fewer number of people who are aware of their status in the South; approximately 50% of people living with undiagnosed HIV reside in the Southern region. Consequently, fewer people in the South receive timely medical care and treatment. Additionally, despite the region having the highest number of new diagnoses, the region accounts for only 27% of all PrEP users. Researchers investigated whether Medicaid expansion facilitated increased identification of HIV and use of HIV prevention services including PrEP and found that that in states that have expanded Medicaid there has been an increase in the percentage of people who are aware of their HIV status and who have general knowledge that PrEP can prevent HIV.
Lack of availability of services and culturally sensitive providers. In addition to the disparities related to the ability to access insurance coverage and healthcare, the South also experiences shortages of culturally competent providers and have fewer providers with HIV expertise. LGBTQ+ people often report experiencing culturally insensitive providers, which has caused medical mistrust in the community. In a 2019 survey of transgender, gender non-binary, and gender nonconforming people (TGNC) across 13 Southern states, 75% of respondents identified primary care and HIV-inclusive health care as the most important issue that they believed needed community change. Additionally, the South has the highest rates of suboptimal accessibility to HIV care, which is defined as having travel time of 30 minutes or more to HIV care services. The South also experiences high prevalence of HIV in rural areas, and in these areas people often experience longer travel time to receive care and these areas often lack transportation, medical, and social services.[1,29,54]
Social and Community Context
Cultural factors, discrimination, stigma, and violence are social and community disparities that can negatively affect people living with or at risk for HIV, whereas positive social support, relationships, and interactions with family, friends, and community members can have a positive impact on peoples’ health and wellbeing and has been shown to mitigate negative effects of stigma.[55,56]
Stigma and discrimination. Intersectional stigma characterizes the layered impact of multiple stigmatized identities within a person or group that can be related to HIV, race, sexual orientation, gender identity, poverty, substance use, sex work, and other conditions. Intersectional stigma is pervasive in the South and contributes to the disproportionate impact of HIV in the region. HIV-related stigma causes stress for people living with HIV, consequently contributing to negative psychological and physical outcomes as well as imposing barriers to HIV prevention and care including limiting a person’s willingness to disclose their status and seek testing and reducing timely diagnosis and linkage to HIV care and prevention services.[1,55,58] People living with HIV can experience internalized, perceived, experienced/enacted, and anticipated stigmas, which may all affect a person and their health outcomes differently. Internalized stigma is defined as negative feelings or thoughts about oneself due to their HIV status; perceived stigma, an individual’s thoughts and observations of community-level stigma toward people living with HIV; experienced/enacted stigma, involves the occurrence of a specific act of discrimination, stereotype, and/or prejudice; and anticipated stigma, is the fear of negative outcomes occurring if one’s HIV status is disclosed or expected outcomes if an individual tests positive for HIV.[59,60]
Several researchers have identified associations between stigma and poor health outcomes in the Southern U.S. For example, research conducted in four Southern states found that higher levels of internalized stigma were significantly associated with missed HIV medical care appointments and poorer HIV medication adherence; additionally, the researchers found higher levels of social support mediated internalized HIV-related stigma. Other researchers, conducting research in Tennessee, found that 75% of participants reported self-isolation from friends, families, and communities due to HIV-related stigma. Additionally, researchers in Louisiana found that people living with HIV were less likely to achieve self-acceptance and may be more likely to develop depression and anxiety and engage in harmful drinking due to perceived stigma.
Cultural Factors. Culturally conservative views and strong religious affiliations are prevalent in the South, many of which associate HIV with social deviance and immorality, condemn homosexuality, and reject normalized discussions of sex and substance use further exacerbating HIV-related stigma in the region.[62,64-66] The region also suffers from a history of systemic racism, which has been linked to inadequate health care, mistrust of healthcare systems, as well as having implications for low wealth accumulation and high poverty rates in Black and African American communities.
Violence. Violence against LGBTQ+ people, especially TGNC is prevalent in the South. The 2019 TGNC report described that 47% of TGNC reported high levels of violence by strangers; violence by strangers was most frequently reported among transwomen and gender non-binary and gender nonconforming people who express themselves in a more feminine way (58%). Further, 41% of TGNC reported experiencing high levels of violence by law enforcement and 40% reported experiencing high levels of violence by health care providers. Gender-based violence has been associated with an increased risk for HIV acquisition.
COVID-19 Related Health Disparities in the South
Throughout the unprecedented times of COVID-19, many people have experienced greater vulnerabilities due to an increased risk for contracting COVID-19 as well as from suffering from economic and health care-related disparities related to the virus.[2,69] Communities across the world have experienced hardship, however people of color, the LGBTQ+ community, and others affected by systemic poverty have been disproportionately affected by the pandemic.[70-73] COVID-19 and mandates set in place to regulate the spread of the virus have caused job loss and reduced work hours, have increased the number of people entering homelessness or at risk for becoming homeless, and have resulted in greater difficulty for people to pay for food and other bills.[74,75] Additionally, though data for the risks of people living with HIV and COVID-19 are still emerging, recent literature shows that people living with HIV may be at increased risk for severe health outcomes associated with COVID-19 compared to those not living with HIV. Further, a survey conducted to determine the impact of COVID-19 on households found that LGBTQ+ people report more serious financial problems, increased challenges navigating working from home and having children at home, greater employment disruption, and more challenges accessing healthcare compared to non-LGBTQ+ people.[71,74] Research has also supported that economic recessions and unemployment increase psychological distress, which can further lead to increased drug use. These overlapping inequities related to COVID-19 and HIV pose complicated challenges for affected communities and for addressing disparities within these communities.
The South as well as people of color and the LGBTQ+ community experience a disproportionate burden of HIV, which can be contributed to interconnected health disparities and inequities including policymaking and five social determinates of health: economic stability, neighborhood and built environment, education access and quality, healthcare access and quality, and social and community context. Policies and laws negatively affecting HIV prevention and treatment are prevalent throughout the Southern region including sexual and/or HIV education laws or lack of thereof, which can contribute to stigmatizing and misinformation; anti-LGBTQ+ laws that discriminate against LGBTQ+ people and may contribute to violence in the community; and HIV criminalization laws, which can discourage HIV testing and disclosure and increase stigma. In Southern states, socioeconomic inequities including unemployment, poverty, homelessness, and food insecurity are pervasive, with Black and African American communities facing even greater incidence, which contributes to poorer health outcomes including delayed HIV treatment and prevention and poorer medication adherence. Lack of education and poor health literacy also contribute to poor HIV-related outcomes. The inability to access quality health services and culturally sensitive providers, lack of insurance coverage, and lack of Medicaid expansion are all significant inequities in the South. In addition, the South has the highest rate of HIV in rural areas, which poses additional challenges to addressing HIV. Finally, stigma, discrimination, cultural factors, and violence all contribute to the disproportionate burden of HIV in the region and among people of color and the LGBTQ+ community.
As seen throughout this essay, health disparities and inequities related to social determinants of health are all interconnected, thus highlighting the critical need for programming and resources that target multiple health disparities and inequities to effectively address the HIV epidemic and improve health outcomes. It will be critical for interventions to also address local, state, and national policies, as policies and laws contribute to stigma, discrimination, violence, and ultimately poor HIV-related outcomes. Programming should also be situated directly within these communities that are disproportionately affected, to effectively address HIV and related disparities in particular cultural climates. For example, 64% of Black/African American people living in the South are members of Historically Black Churches, demonstrating the need to engage faith communities in HIV awareness and prevention efforts.[65,80] Additionally, targeting rural and suburban areas throughout the South is critical to addressing the HIV epidemic.
The disproportionate burden of health disparities across the South must be addressed to effectively target the HIV epidemic. Programs addressing multiple disparities and policy reform will be critical to addressing inequities in HIV care and prevention in the South. Furthermore, exacerbated disparities resulting from the COVID-19 pandemic will likely pose long-term repercussions, thus highlighting the need for efforts that address HIV in the South to also include strategies to address the worsening gaps in health equity and provide resources to support communities during and post-COVID-19.
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