The SUSTAIN Wellbeing COMPASS Coordinating Center of the University of Houston Graduate College of Social Work has made a lasting impact in the fight against the HIV epidemic in the Southern U.S. over the past five years, particularly for Black and Latinx-led organizations. The SUSTAIN Center is one of four across the South funded by the Gilead COMPASS Initiative®, an unprecedented 10-year, more than $100 million effort to address the Southern HIV epidemic by collaborating with local community organizations and stakeholders to use evidence-based solutions to meet the needs of people living with and impacted by HIV/AIDS.
Led by director and social work associate professor and Associate Dean of Doctoral Education Samira Ali, the center is focused on mental health, trauma-informed care, substance use (especially harm reduction and the opioid epidemic), telehealth, and wellness in the context of HIV/AIDS. The center provides justice-and community-centered grants, training, coaching, and conducts evaluation and research. The SUSTAIN Center has regranted approximately 60% of its $10 million award to community-based organizations which otherwise might not have had the funding to strengthen their services.
We don't just give the money to folks, we actually work with them, coach them, train them and have difficult conversations with them. The relational aspect of our work has been a highlight."
Samira Ali, director and social work associate professor and Associate Dean of Doctoral Education
The U.S South accounted for 51% of new HIV diagnoses in 2020, although it is home to only one-third of the U.S. population. Black individuals account for 52% of people living with HIV. Ali's team chose to work with primarily Black and Latinx-led organizations in the South, including nine organizations in Houston.
"We know from the data and research that Black-led organizations receive less funding than white-led organizations," Ali said. "Anti-Black racism has a lot to do with it. We want to make sure the money and support are going to the places that need them the most."
Providing trauma-informed care
One of the greatest moments for the team was teaching trauma-informed care to a partner in South Florida that provides care and advocates for transgender and LGBTQ+ individuals.
"The executive director of the Transinclusive Group told us that before learning about trauma-informed care, she thought she had everything figured out," said Marcus Stanley, director of programs and project officer for the coordinating center at UH. "She had been a sex worker, experienced homelessness and had rebuilt herself from all of that. By learning how to provide trauma-informed care, she had a chance to examine how trauma shows up in her own life, so the organization can better serve both clients and staff."
In Gilead Sciences' "Five Years, Five Voices" video series, Transinclusive executive director and co-founder Tatiana Williams said, "the Gilead COMPASS Initiative has helped me create an organization that is sustainable. They gave me the ability and the tools I need to be able to do the work that we do."
One of the changes implemented was the addition of mental health days for staff. Instead of using vacation or sick time, a staff member can request a mental health day that is budgeted into their paid time off.
Case study on combatting HIV in the South
The SUSTAIN Wellbeing COMPASS Coordinating Center at UH led an initiative, "Showing Up for Black Power, Liberation and Healing," that focused on providing a support space, training and funds to Southern organizations to combat anti-Blackness and to identify and address white supremacy work culture.
The team facilitated a participatory case study examining this initiative and published their findings in a supplemental issue of the Journal of Health Care for the Poor and Underserved, "The Gilead COMPASS Initiative®: Navigating HIV in the Southern U.S. by Building Capacity & Bridging Communities" issue. It features 16 articles by COMPASS grantees across the South and details the programs they implemented over the past five years to address the HIV epidemic within their communities.
The UH team writes that effectively combating HIV will require Southern HIV service organizations to support Black staff while they navigate traumas related to structural racism driving the epidemic. They highlight the power of defining and valuing Black-centered spaces to address trauma; reframing self-care from an individualistic responsibility to an institutionally supported, communal means of healing; and the role of the intervention in spurring organizational changes related to dismantling white supremacy work culture in southern HIV service organizations.
Meaningful involvement of people living with HIV
Stanley credits much of the UH SUSTAIN team's success to the meaningful involvement of people living with HIV. SUSTAIN has a paid advocacy group that is comprised of people openly living with HIV.
"This was a big deal for me, because I come from a field where individuals relive and retell one of the most traumatic experiences of their lives for free or for a $25 gift card. We were able to treat these individuals like they matter," Stanley said.
These valued members of the community provided insight when deciding what organizations to fund as well as curriculum and other programming.
"We did not create our grant-making process in a vacuum," Stanley said. "We did a 'listen-in tour' where we went to almost all of the 12 states we're serving. We went to each's state's most populous urban cities as well as rural cities and asked: What is the need? What capacity would be most beneficial for your community? We took that information and developed grants and trainings."
Of the organizations the SUSTAIN Center has worked with, about 90% are grassroots groups with budgets of less than $100,000 and less than three employees. These organizations have since grown to employ multiple people and facilitate multiple programs, made possible by capacity building work the UH team has assisted them with, and funding.
Future work: Continuing programming and public impact
Looking ahead, Ali said her team will continue the project's programming by finding additional funding or additional partnerships to support the work.
She also looks forward to making her team's efforts and research more accessible, what is known in social work as "public impact work in scholarship," that ensures research does not stay in academia, but it is in the world for organizations and policy makers to use.
"The programming of the COMPASS Initiative ® was not something that was just handed to us. No one told us to create specific types of grants to support grassroots organizations to do trauma-informed organizational change," Ali said. "This was all information we collected from the listen-in sessions and from what we learn working on the job. This was created by our team in collaboration with impacted communities."
Historical redlining continues to affect HIV treatment in affected communities