Dec. 06 2016

Inside the Invisible HIV Epidemic in the Rural South

An ICAP-organized screening of the documentary Wilhemina’s War highlights the experience of living with HIV in neglected African-American communities in South Carolina

As an American teen, Dayshal Dicks experiences familiar highs and lows: a budding romance, Facebook bullying. Other circumstances make Dayshal’s life far from ordinary: she is poor and living with HIV in the rural south where health resources are scare.

Wilhemina’s War, a documentary film screened by ICAP on World AIDS Day, tells the story of Dayshal as a way to shed a light on the experience of HIV in the southern United States, where more people live with the virus than in New York and San Francisco combined. ICAP Director Wafaa El-Sadr moderated an expert panel with filmmaker June Cross, a professor at Columbia’s School of Journalism, and members of the Mailman School faculty. 

The film follows Dayshal, who is African-American, and her family, headed by Wilhemina Dixon, her grandmother. At age 15 when we first meet her, Dayshal has lived with HIV her whole life, enduring stigma—she describes people wiping their hands after touching her—and keeping up with a demanding medication regimen: 12 pills, twice daily.

South Carolina, where Dayshal and her grandmother live, has the nation’s highest rates of HIV in rural areas, yet the state has been hesitant in its response to the crisis, even cutting programs to support transportation and housing. Governor Nikki Haley, who was recently tapped to become the next United Nations Ambassador, refused Medicaid expansion under the Affordable Care Act. These facts may contribute to the slow pace of HIV efforts nationwide, especially compared with rapid progress just reported in sub-Sarahan Africa.

In a panel discussion, Terry McGovern, interim chair of Population and Family Health and founder of the HIV Law Project, observed that without expanded Medicaid, many in those states cannot afford their medications. And until recently, federal funding supported AIDS, not HIV—a situation McGovern said that “gave preference to the two coasts, which have older epidemics.”

At one point in the film, Dayshal’s HIV-positive mother, Toni Dicks, stops taking her medications, and after being admitted to hospice care in a poorly run nursing home, dies of AIDS. A cousin with HIV also quits her meds and dies. Sadly this situation is far too common: one-third of those diagnosed with HIV in the south die within five years. (Dayshal too stopped taking her pills, changing her mind only after taking part in an HIV conference that sparked feelings of self-worth.)

Wilhemina’s War follows HIV activists in South Carolina pushing to stem the tide. Through the South Carolina HIV AIDS Council, Vivian Clark-Armstead reaches out to African-Americans across the state, particularly in churches, where her message is that HIV isn’t “a gay disease.” In fact, the state is first in the nation for heterosexual transmission. Speaking to one pastor, Clark-Armstead says, “We need to save their lives so you can save their souls.”

Gina Wingood, director of the Lerner Center for Public Health Promotion, did similar outreach in churches in the south—work she said that took patience and persistence. But once accepted, the church is an ideal platform to reduce multiple, intersecting stigmas, from HIV status to racism and sexism.

According to Wingood, Wilhemina’s War gives voice to communities with HIV in the rural south too often forgotten or ignored. “The film highlights the blatant role of the social determinants of health, HIV stigma, lack of access to care, poverty, and racism,” carrying a message, she says, that “has the potential to push policymakers and the public do what’s needed to end this epidemic.”