The racism and biases impacting Black and Brown people at this moment have been an obstacle to progress in fighting HIV/AIDS for decades. Nowhere is this more evident than in the South.
Southern HIV/AIDS Awareness Day, which is today, was created two years ago to bring attention to this alarming issue: The South is the epicenter of the national HIV/AIDS epidemic in the U.S.
Of the 38,000 new cases in the country in 2018, 51% were in the South, according to the Centers for Disease Control and Prevention, though the region accounted for only 36 percent of the population. In Memphis and Shelby County, there were 304 newly diagnosed HIV cases in 2018, while a total of 6,090 people were living with the disease — 85.7% of them black.
The survival rate is lower in the South, too: In 2016, 39% of all deaths (6,045) of HIV-positive people in the U.S. were in “Deep South” states (Alabama, Florida, Georgia, Louisiana, Mississippi, North and South Carolina, Tennessee and Texas), according to a study by the Center for Health Policy & Inequalities Research at Duke University.
The reasons behind this are complicated, but also similar to those we see with COVID-19. In fact, communities that have 13% or greater population of Black Americans, which are largely in the South, have an increased distribution of both COVID-19 and HIV.
Structural issues including inadequate insurance and the absence of Medicaid expansion are a factor. But they are exacerbated by systemic issues including poverty, stigma, homophobia, transphobia, and racism.
I know this firsthand because it is my own experience.
In the early 2000s, I was living in my hometown of Memphis when I was diagnosed with HIV. Funding, from sources like the Ryan White program, was not readily accessible and information was equally hard to come by.
At the time, I had never met another Black gay man living with HIV openly; I had no one to advise me or offer wisdom. I also had no idea how sick I was. Ultimately, I was put in a position that many still are today; forced to choose between medication and rent. Not wanting to become homeless, I chose rent.
My community of friends saved my life, getting me back into care, taking me to appointments, and checking to make sure I’d taken my medicine. But my experience taught me that there was a gap in organizations that understood my experience and those led by people who looked like me.
Because I sought to change this, in 2009 I created The Red Door Foundation, an organization that mobilized Black gay men in Memphis. And in 2013 we launched the Saving Ourselves Symposium (SOS, now hosted by the Southern AIDS Coalition), an annual conference in the South focused on Black LGBTQ health, wellness and social injustice.
Both organizations are also focused on changing stigma around HIV and other health issues facing the Black LGBTQ community in the South.
Funding communities is key
My lived experience as a Black gay man with HIV and a nonprofit leader has taught me that ensuring resources reach the most affected communities is fundamental to progress. Now, working as a funder, that is what drives me.
Funders have the ability to direct resources to grassroots organizations, like AIDS Services Coalition (ASC), that do the work on the ground. ASC is located in rural Greenville, Mississippi, where linking people to care was a challenge even before COVID-19. By using mobile services like Uber, Lyft, and Instacart to deliver pantry items and medication, ASC continues to provide tangible support for its community, even during this unprecedented time.
The need for funding for organizations like ASC in the South is great. Though it is home to 45% of all people living with HIV/AIDS — despite accounting for only a third of the country’s population — this region has never received federal, state, or private funding proportional to its disease burden.
In fact, private HIV-related philanthropic resources have remained relatively flat, with roughly less than a quarter (or $40.3 million out of $200 million in 2018) directed to the South since 2014, according to Funders Concerned About AIDS (FCAA), a philanthropic support and advocacy organization.
In 2017, a group of funders came together to change this. Convened by FCAA, and administered by my organization, AIDS United, a group of corporate and private funder partners began working together to expand our impact in the South. We created a collaborative fund, the Southern HIV Impact Fund, to increase resources to Southern communities that experience heightened health disparities and lack the funds to address them.
The Southern Fund partners with organizations working in the intersecting fields of racial and social justice, gender equality and reproductive rights, LGBTQ rights, immigration, detention, and mass incarceration, among others. In the first three grant cycles, the Southern Fund disbursed about $3 million each year.
In addition to financial support and technical assistance, it has developed a Leadership Development Cohort of grantee partner representatives to cultivate skills needed to grow and remain in the field.
Like the rest of the world, the Southern Fund had to pivot during COVID-19.
Communities know best what they need, and how they should spend resources. With that in mind, the Southern Fund offered grantee partners the option to move current grants from project-specific to general operating support. This change provides grantees flexibility to respond quickly to community needs as they evolve with the pandemic. The next funding cycle will focus on renewing grants, since many organizations are not currently able to focus on non-COVID goals.
Southern organizations rise to the challenge
The issues faced today are not new for Southern Fund grantee partners; these challenges have long been faced in the fight against HIV. It’s not surprising, then, that these organizations have been effective in getting critical resources to their communities, even now.
- SisterReach, a reproductive justice organization in Memphis, adapted its programs to provide safer sex kits through the mail and by home delivery versus in person. So far, it has delivered 1,000 kits that now include protective personal equipment (PPE). SisterReach also provided a mini COVID-19 stimulus package to 21 community partners so that they might stay afloat during this time.
- Black Trans Advocacy Coalition (BTAN)/ Black Transmen, which serves Black transgender individuals in Carrollton, Texas, created the Black Trans COVID-19 Community Response program, providing financial assistance and other resources, based on their needs.
- The Bros in Convo Initiative, an organization serving Black gay, bisexual, and same gender loving men in Central Florida, enhanced its website, allowing users to schedule free, private STI testing by appointment and to request linkage to various services, including HIV care and the Ryan White HIV/AIDS program. It also uses Zoom for emotional and mental wellness support and HIV prevention programs; Facebook groups are used for peer support programming.
Southern HIV/AIDS Awareness Day allows us not only to bring attention to the lack of funding that the South receives, but also to amplify the amazing work of these organizations and many others. It’s a chance to use this moment in time — when the world is focused on COVID-19 — to have difficult conversations around the connections between health and systemic racism.
It is also an opportunity to ensure that, no matter how unprecedented the time may be, we don’t divert attention — or funding — from HIV in the South.
Marvell L. Terry II is the program manager for the Southern HIV Impact Fund, AIDS United.
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