On June 18, 2014, the White House Office of National AIDS Policy, under the leadership of new Director, Douglas M. Brooks, MSW, held its first ever meeting focused on HIV in the Southern United States. Southerners living with HIV, their advocacy partners, and representatives from several federal agencies gathered at the White House Executive Office Building to hear about the regional challenges the South faces in its fight against HIV and to ask questions. Douglas Brooks, who is living with HIV himself and who grew up in Georgia, kicked off the meeting by letting participants know that one of his top priorities is assuring that resources follow the epidemic.
The South has Poorer Health Outcomes: The HIV death rates are striking in the South. Amy Lansky, with the Centers for Disease Control, highlighted the facts that the Southern region has the highest HIV case fatality rates of any US region and the lowest 3-year HIV survival rates. Case fatality rates in many southern states were twice as great as those in other states. Previous research has documented that 8 of the 10 states with the highest HIV case fatality rates in the US were in SASI’s targeted 9-state region.
Voices of People Living with HIV: Moderated by Joseph Interrante, CEO of Nashville Cares and SASI Steering Committee member. One panelist talked about the pervasive stigma that prevents positive people from seeking care. She talked about those who struggle to come out of the HIV closet in the rural South and the layered stigma based on race, sexual orientation and HIV status. Venton Jones, of the National Black Justice Coalition, speaking on the same Voices of People Living with HIV panel, called on policy makers to align resources and research to the populations at risk and highlighted the need to train positive leadership–particularly among young African-American men who have sex with men.
Challenges: Throughout the day, panelists raised the challenges faced by the south in HIV Prevention and Care. A major concern that permeated the questions from the audience is the fear that the failure of most Southern States to expand Medicaid will result in ever increasing health disparities between Medicaid expansion and non-expansion states. Jennifer Kates of the Kaiser Family Foundation illustrated how the southern states that are not expanding Medicaid also have higher than average uninsured rates. Thirty-six percent of PLWHA (people living with HIV/AIDS) live in the 11 Southern States that are not expanding Medicaid. Because 51% of these PLWHA have incomes below 100% of the federal poverty level, they are ineligible for subsidies in the insurance marketplace and therefore fall in the “coverage gap” if they live in a non-Medicaid expansion state.
We also discussed challenges raised by the more rural and mid-sized city nature of the Southern Epidemic including pervasive stigma, the lack of an adequate network of medical providers and the lack of adequate transportation and housing resources.
Megan McLemore of Human Rights Watch urged policy makers to develop comprehensive services for injection drug users and other vulnerable populations that include safe non-judgmental spaces, health and harm reduction information, testing for HIV and Hepatitis C and linkage to care services. Injection drug use is a significant contributor to both new HIV infection rates and death rates in several Southern states, especially Louisiana, Florida, and Georgia.
Federal Efforts: Federal policy makers across government were in attendance and listening for the entire session. When it was their turn to speak, they highlighted on-going efforts and commitments to address funding inequities, to initiate innovative programs and to partner with community based organizations throughout the South. The Center for Disease Control is in the midst of five-year plan to re-align funding to align with the number of persons living with HIV/AIDS, for example. The Department of Housing and Urban Development has proposed legislation that would modernize the funding formula for the distribution of Housing Opportunities for Persons with AIDS (HOPWA) funds to also count living HIV/AIDS cases rather than cumulative AIDS cases. The Department of Justice is working on guidance to states that currently criminalize HIV through their HIV-specific criminal laws, laws that exist in many of our Southern States.
Local Level Impact: In a final panel, skillfully moderated by SASI Steering Committee member Linda Rigsby of the Mississippi Center for Justice, state health department officials and representatives of community-based organizations talked about successful state and local strategies–everything from Tennessee’s program to use Ryan White funds to wrap around marketplace insurance, to Louisiana’s use of data alerts to re-engage people in care to the Whitman-Walker Health Clinic’s successes in retaining people in care.
Linda Rigsby, Mississippi Center for Justice
Moving Forward: The White House Meeting was an energetic and thoughtful exchange among those present and a good first step. Going forward we must continue to insist on increased resources to provide high-quality HIV care and prevention services to people living in non-Medicaid expansion states. We cannot meet the goals of the National HIV/AIDS Strategy until we meet the challenge of making sure that everyone has access to high-quality HIV care and prevention services, no matter where they live.
Resources must be targeted. The Southern epidemic is similar to the US in that it is centered in the urban areas and among young African American MSM (men who have sex with men). The South differs from the rest of the US, however, in that a higher proportion of the epidemic is in rural and mid-sized cities; among African American Women and, in some Southern States, among injecting drug users. These differences must be recognized when initiatives are funded and funds are distributed.
SASI (Southern HIV/AIDS Strategy Initiative) applauds the prompt steps taken by ONAP Director Douglas Brooks to recognize the Southern epidemic. The White House Meeting and the Listening Sessions held by ONAP in Jackson, MS; Columbia, SC; and Atlanta, GA are great first steps. Southern PLWHA and their advocates look forward to continuing to work together with ONAP on next steps.