This article was originally published in our Fall 2020 print issue.
The Deep South is home to about a quarter of the population of the United States, yet the nine states that make up this region (FL, AL, MS, GA, TX, LA, TN, SC, NC) accounted for more than forty percent of new HIV diagnoses in 2017. Nine of the ten U.S. metro areas most affected by HIV are in this region; so are eight of the ten most affected states. People living with HIV in the Deep South die at higher rates than their Northern or Western counterparts. Such an overrepresentation does not arise out of thin air. Many intertwined issues that have historically plagued the Deep South combine with a religious conservative culture to create the harsh realities of HIV in the region.
According to Elena Wilson, M.P.H., who studies HIV and its impact on the Deep South at Duke Global Health Institute’s Center for Health Policy and Inequalities Research, the biggest difference between living with HIV in the Deep South and other regions of the United States is stigma. She recounted instances of discrimination that she described as unthinkable in other parts of the country. These included examples of people living with HIV being treated as if they were highly contagious – the house being cleaned with Lysol after visits, being made to eat off paper plates – or being yelled at in the street. Wilson explained that people and families also often do not talk about HIV, which causes people living with HIV to feel isolated.
This stigma has a profound impact on health care outcomes in the Deep South. Increased stigma is associated with lower medication adherence, an unwillingness to disclose HIV status to sexual partners, as well as lower rates of testing, which all lead to poorer outcomes for individuals and the population as a whole. Wilson identifies increased visibility as a major factor that would improve the lives of people living with HIV in the region. She would like to see celebrities taking HIV tests, or billboards being erected in rural areas. Other options include educational programs that bring together people who hold stigma and people living with HIV. This option is “really effective to put a face on [people living with HIV], especially for people who may not have a lot of contact”, says Wilson.
Stigma is made into policy through HIV discrimination laws. These laws were originally intended to prevent people purposely spreading HIV, says Wilson. People living with HIV have been prosecuted for biting or spitting – actions that carry negligible risk of HIV transmission. Wilson is worried by the fact that these cases are often heavily covered by newspapers, leading to misinformation about HIV and HIV transmission spreading. Other policies that worsen the Deep South’s HIV burden are abstinence-based sex education (which has proven to be ineffective in preventing the spread of STIs) and a lack of support for needle exchanges.
The struggles of people living with HIV in the South are compounded by many issues that face the region as a whole. Poverty and unemployment in the Deep South are higher than anywhere else in the country, both of which are associated with poorer health and higher death rates. Rates of health insurance are also low, and Louisiana is the only state in the region that has expanded Medicaid (which leaves larger Medicaid gaps in the remaining states).
The Deep South is also the most rural area in the United States and has the highest proportion of rural people living with HIV, which brings with it unique challenges. These challenges lead to even worse outcomes for people living with HIV, such as more progression to advanced stages of HIV and higher mortality. People in rural areas often have to drive long distances to see a healthcare professional who is able to help them. There is also less access to public transit and fewer social services in general. Rural populations also often face more stigma and feelings of isolation, says Wilson, especially if there are only a few people with HIV in the county. This is concerning to Wilson as it leads people to not use the care options and services that may oftentimes be available to them.
Rural populations are not the only group that is in an especially difficult position. Black men who have sex with men made up almost a third of all new diagnoses in 2017. Nearly all the problems that face the general population, such as poverty and unemployment are compounded for this group. However, they also face problems that other populations do not face. Mass incarceration of black men, for example; according to Wilson, incarceration can easily disrupt treatment. The saturation with HIV is also especially high, as Wilson put it, “if you’re a black man who has sex with other men in the South and your condom breaks one time you are much more likely to get HIV than you would be somewhere else in the country”. This saturation is caused by factors beyond the control of individuals. Wilson also explained that black men who have sex with men often “have to come out again and again”, as gay and as HIV-positive, which can be traumatic. Through being who they are, black men living with HIV who have sex with other men, face stigma and discrimination for their race, their sexuality and their HIV status.
Despite all these challenges, Wilson is optimistic. “There are just so many organizations doing really, really amazing work … working in this grass roots way,” and she is excited about increased visibility. While financial help to organizations in the South is good, Wilson says that the best way people outside of the South can help is by engaging with, highlighting and increasing the visibility of HIV through participating in campaigns that are happening online – “anytime you can spread information that is correct you are doing something huge.”