HIV/AIDS in the U.S. South: FCAA Talks to SASI’s Carolyn McAllaster

Home to 44% of all people living with HIV/AIDS in the country, the U.S. South is the epicenter of the national epidemic. At the same time, the region receives less than 20 percent of total HIV-related philanthropy for the US. Funders have made significant investments to support organizations working to provide HIV services and/or advocacy in the South. However, only $31 million in HIV-related philanthropy has been directed to the South per year in 2014 and 2015. This is roughly $59 per person living with HIV (PLWHIV) in the region, as compared to $116 per PLWHIV allocated nationally. Far greater resources will be required to support current and emerging leaders in the field, build capacity for organizations based in the region and support intersectional collaborations with broader social justice allies.

For this first in a new blog series focused on the U.S. South, FCAA spoke with Carolyn McAllaster, project director of the Southern HIV/AIDS Strategy Initiative (SASI), an initiative of the Duke Health Justice Clinic, to discuss this challenge and the role data can play in helping to solve it.

Learn  more about the efforts of the FCAA Funder Working Group on the U.S. South. 

What are the challenges facing the U.S. South, particularly the Deep South, with respect to the HIV/AIDS epidemic?

CM: SASI has been documenting the epidemic in the U.S. South for more than five years and the data we have collected is striking; it’s clear that this region is driving the epidemic in the country.

In the nine “Deep South” states,[i] the conditions are even starker. From 2008 to 2013, the nine Deep South states had the highest HIV and AIDS diagnosis rates and numbers in the country[2]. The HIV-related death rate was also highest in the Deep South in 2013. In fact, between 2008 and 2013, 43 percent of all HIV-related deaths in the US were in the Deep South states. The poverty rates in this region are also higher and it has poorer outcomes and infrastructure.

What are some of the factors driving the epidemic in this region?

CM: One significant factor is stigma. These states are all within the Bible belt and have a legacy of slavery and racism that continues to reverberate. The largest population of those affected by HIV and AIDS are young, gay and bisexual men (MSM), particularly MSM of color. These factors converge to contribute greatly to stigma.

The church, for example, is an extremely important institution in the Deep South. Consider for a minute that the church rejects you because you happen to be HIV positive and gay. Not only are you grappling with the effects of the disease, but the support you have received and the community you have relied upon in the church for your entire life have been taken away as well.

How does the U.S. South fare with respect to federal funding?

CM: When federal funding is distributed using formulas that are based on the number of people living with HIV, the South gets its proportionate share. An example would be CDC flagship funding for state health departments. In those cases, funding follows the epidemic.  The South often gets short changed, however, when funding is discretionary and based on a competitive grant process. Better resourced states often submit more applications that are better written. So on the face of it, maybe it seems appropriate that those states would get higher levels of funding. But many Southern states struggle with poor infrastructure and lack of resources and are unable to successfully compete for funding. Examples of non-formula based funding that has not followed the epidemic are recent CDC direct funding for community-based organizations and Ryan White Part B Supplemental Funding.

When funding follows the epidemic, the South is better served and the goal of delivering high impact HIV strategies will have a far higher return on the investment.

Where do you see cause for optimism?

CM: In the past few years, SASI has been evaluating HIV-related infrastructures in several metropolitan statistical areas with pronounced diagnosis rates. What we found were examples of strong medical infrastructure and dedicated providers doing great, innovative work. We found examples of programs that, with the right resources, could be scaled up and replicated to very good effect.

For example, JASMYN, a Jacksonville, FL-based organization, provides services and advocacy to the young LGBTQ population in the area. Through a partnership with the Duval County Department of Health, JASMYN is bringing HIV and sexually transmitted infection testing and education to United Way Full Service Schools in the area. A clinic embedded within JASMYN’s youth center also provides wrap around services and case management, helping to support prevention and keep young people healthy. Examples of successful programs like JASMYN exist in many states in the U.S. South. But, we need the proper resources to scale them up and leverage them across the region.

Another real bright spot is North Carolina Senate Bill 794, which just recently passed. The bill makes syringe exchanges legal throughout the state. Last Fall’s update to the Housing Opportunities for People with AIDS program is also encouraging. The funding formula for the program had not been updated since it was established in 1992. This update modernizes the funding approach so that the program reflects the number of people currently living with HIV as opposed to cumulative AIDS cases.

Where do you see the philanthropic sector supporting efforts to combat the challenges in the U.S. South?

CM: Attention must be paid to the smaller urban areas and more rural areas where a large part of the epidemic is in this region. We also need to build up CBOs, which are the first line of defense. In some of these places, there are no CBOs. So, we need to look at incentivizing bigger CBOs, like Nashville Cares, to serve counties that they don’t typically serve. Empowering these organizations may be more effective than attempting to build infrastructure from scratch.

With the FCAA resource tracking report and the work that SASI is doing, it’s the first time we have data on the U.S. South. Why is having this data so important?

CM: Data strengthens the argument about where the resources need to go. When funding streams don’t follow a formula that accounts for the number of people living with HIV, the South doesn’t get the resources it needs to effectively fight HIV and AIDS.

Footnotes:

[1] SASI report: HIV/AIDS in the US Deep South: Trends from 2008 – 2013.

[2] Alabama, Florida, Georgia, Louisiana, Mississippi North Carolina, South Carolina, Tennessee and Texas