An upcoming Independent Lens documentary tells the story of a one-woman army fighting for access to support and services for her family members living with HIV and AIDS in rural South Carolina.
Through the story of Wilhemina Dixon, the documentary Wilhemina's War shows the devastating toll HIV/AIDS has on black women in the rural South. Shot over the course of five years, the film demonstrates the effects of government bureaucracy, medical apartheid, inadequate education, stigma and intergenerational poverty on the HIV epidemic.
"I'd covered the AIDS epidemic for the PBS NewsHour in the early '80s, and I've done several other documentaries where the main characters ... were living with HIV. So I sort of felt like I knew what the story was," said June Cross, the documentary's director.
Cross is an award-winning broadcast journalist, with documentaries on Hurricane Katrina, the African-American religious experience and a range of other topics. She is also the founder of the Documentary Program at Columbia University's Graduate School of Journalism.
"When I got to South Carolina, I realized [that] there's such a series of systemic obstacles that they are facing," she said.
Each year, approximately 50,000 people are diagnosed with HIV in the United States. African Americans, who make up only 12% of the U.S. population, now account for almost 44% of new HIV diagnoses.
Nowhere is this crisis more acute than in the South. As the Ford Foundation reports, "Southern states have the highest rates of new HIV diagnoses, the largest percentage of people living with the virus, and the most people dying from the disease. For black women living in the rural south, HIV/AIDS is one of the leading causes of death."
South Carolina is a state with severe disparities in health care services generally, not just for people living with HIV. In 2014, the state was facing a primary-care shortage. In Barnwell County, where Dixon and her family live, the county had no obstetricians, so women had to drive at least 37 miles for the nearest available OB/GYN. Nearby Bamberg County lost its only infectious disease specialist. Through the end of 2014, the prevalence of HIV in Bamberg was one of the higher in the state (324 per 100,000); Barnwell County had the fourth highest prevalence (353 per 100,000).
Those stark statistics are what got Cross and her team interested in this story. "I needed to demonstrate why I was in South Carolina because it's a small state and people don't think of the statistics being there," she said.
Compounding the problem, many churches, which have long been a place to get essential information in the black community, have been unwilling to discuss the new face of HIV. This has pushed HIV-positive people in the community to hide their diagnosis from family and sexual partners, Cross said.
Against the backdrop of this silent epidemic, Dixon, 62, is the caregiver for her daughter, Toni, a drug user, and her teenage granddaughter, Dayshal. Both are living with HIV. Additionally, Dixon has three other family members living with HIV or AIDS, a 90-year-old mother with memory loss and a husband struggling with alcoholism.
Dixon is the daughter of a sharecropper and picks peas and peanuts to provide for her family. She did not have formal education and has low literacy skills, yet she taught herself about public policy and caring for people living with HIV and unintentionally became an advocate, improving the quality of services available to the people in her community.
"The world that Wilhemina lives in, of picking peas or growing peanuts, the things that she does in order to make a living is so reminiscent of those images of [the Jim Crow South], of folks picking cotton," Cross said. "I was trying to take the viewer back into the world that South Carolina feels like because it's not like New York's or LA's or San Francisco's. When you're talking about the rural South, you're talking about a different place."
Dixon isn't the only one in South Carolina waging a war against HIV. The documentary also highlights grassroots groups such as the South Carolina HIV/ AIDS Council, which runs the only mobile testing van in the state.
Cross says it's not that the state doesn't have quality health care services, but the complex health care system is not designed for those short on time and money.
"There is good access, but there are all these hurdles that people have to get over in order to get to it," she explained. "The larger issue is the health care system is designed for people who have college educations and can think of how to work their way through it."
"If you're an uneducated person, and unemployed, and don't have a reliable care, the issue is how do you access the care and then how do you develop the stamina to keep going back and working your way through the system? Any of us who have gone through the health insurance process can understand how frustrating it can be, so imagine trying to get through that process if you're not 100% in your ability to read and write," Cross went on to say.
Wilhemina's War premieres on PBS's Independent Lens Monday, Feb. 29, at 10 p.m. Eastern Standard Time. Check your local listing for channel information.
Althea Fung is the community editor for TheBody.com. For her thoughts on the health care industry, food and other random musing, check out her personal website, follow her on Twitter or stalk her on Facebook.