A Time for Building Back Better in The American South

By Sean Black, Telling Our Stories, Through the Lens

The hardships surrounding COVID19 have been unimaginable, particularly for the more than 38 million people living with HIV around the world.  Record-breaking numbers resulting in catastrophic loss of life in recent weeks has shown us once again the deadly power of a global pandemic.

Since the onset of this second virus, tireless efforts have been made on behalf of our resilient HIV community, from individual households and grass-roots organizations to academia and our scientific research and medical communities.

Active members in the aging advocacy community especially, those of us who have survived the early years of AIDS, are all-too aware of this familiar crossroad; beseeching us to work together again in the face of grief, economic insecurity and a wave of social intolerance more apparent in recent times over politics, underscoring deeply rooted systemic racism. Alongside our newly elected leadership, our vibrant community must once again join forces in tackling not only this latest viral behemoth and its aftermath to come but also these unconscionable woes of our humanity.

In her recent opening of the 10th edition of AFRAVIH, HIV & COVID colliding pandemics – From disruption to transformation, UNAIDS Executive Director, Winnie Byanyima remarked, “With [global] health at the top of the political agenda, we must seize this opportunity to transform our world and “build back better” to end COVID and HIV” .

The UNAIDS Programme Coordinating Board recently adopted its new 2016–2021 Strategy in order to reach people “being left behind” and focusing to end the HIV/AIDS epidemic as a public health threat by 2030. Still maintaining 90–90–90 treatment targets which states, 90% of all people living with HIV will know their HIV status, 90% of all people with diagnosed HIV will receive sustained care and 90% of all people receiving care will have viral suppression. These initiatives further aim to close the testing gap and to protect the health of the estimated 22 million people living with HIV who are still not accessing care.

In her call to action, Byanyima points to the necessity of “reimagining systems of health so that they are “agile and inclusive.” She explains, “Resilient health systems mean fully integrating community-led efforts into national responses for HIV and COVID-19 from decision-making to delivery, from planning to monitoring. It is about integration; it is about decentralization; stepping up public investment to ensure universal public healthcare.”

The necessity of ‘public investment’ is key: By taking care of each other we are ultimately taking care of ourselves, as well as and our future.

Byanyima summarizes, “What we need is bold political leadership to get us back on track to end the fight against HIV and to win against COVID. We will have to put human rights, gender equality, and communities at the front and at the centre of all that we do.”

Her message comes at a pivotal time with Joe Biden’s victory as our 46th President along with Kamala Harris our first female vice president-elect; a Black woman of South Asian descent. Regardless of our individual party preferences, the bold leadership Byanyima calls for has been realized and as providers of care we must endeavor towards Byanyima’s reminder to “build back better”.

“When news broke of Biden/Harris’ projected win on Saturday, November 7th, like many, I sought out a place of celebration. Heading to the Freedom Tower in Downtown Miami, I was compelled to be a part of a recommitment of sorts towards humanity.

Amongst a number of successful “Get Out the Vote” (GOTV) strategies, the resulting success of former State Representative Stacey Abram’s work, shows us that change is possible even in deep-seated rural regions like the American South.

Southern states, according to the CDC’s latest surveillance data targeting HIV testing as well as linkage to prevention and services, reports that while the South accounts for 38% of the U.S. population it bears 51% of new diagnoses. With more than half of these new cases occurring in the South, 23% of the cases are in suburban and rural areas. It is estimated that 82,000 people in the South are unaware that they are living with HIV. Not knowing one’s status should not be happening in this day and age and is a direct result of pervasive stigma conflated with inadequate and inaccessible resources for testing, prevention and care. Many people living in rural areas rely and are dependent upon public transportation. Many often find themselves overwhelmed by the arduous or impossible 3-to-4-hour commutes, which ultimately impedes their likelihood for accessing self-care on a regular basis and adhering to treatment regimens.

According to Linda M. Dixon, Esq., Health Law Director of the Mississippi Center for Justice, Mississippi is one of 12 states that has not expanded Medicaid due to fiscal concerns impacting state budgets. Of the 12 states not opting into the expansion under the Affordable Care Act (Obama Care), seven, more than half are Deep South States: Florida, Georgia, Tennessee, South Carolina, North Carolina, Alabama and Mississippi. The remaining states are Wyoming, Texas, South Dakota, Wisconsin, and Kansas.

Dixon, a public interests attorney urges, “Now more than ever, COVID-19 has magnified the health disparities that already existed in Mississippi. More than 100,000 Mississippians fall into the coverage gap while it is estimated that 12% of the State’s total population is uninsured. This places our citizens at grave risk.”

She continues, “In rural Mississippi 42% of hospitals are vulnerable or in jeopardy of closure.” Further speculating in our conversation, Dixon ponders the potential devastation that may ensue with loss of employment and thus employer provided insurance due to the COVID19 pandemic.

Major contributing factors within the care continuum, outside the fiscal and budgetary constraints are those of socio-economic woes that place people living with HIV in rural areas at dire risk such as domestic and street violence toward women, CIS and transgender alike. This year alone has seen at least 34 transgender or gender non-conforming people fatally shot or killed by violent means, mostly Black and Latinx.

“Transgender individuals in the rural South face a myriad of threats and dangers everywhere they go, from the grocery store to the gas station,” shares Katie Willingham, a woman of transgender experience living with HIV in a small town in Northern Alabama with a population of less than 8,500 people.

“The isolation and stress from living under constant attack and derision can cause a transgender person to forego their healthcare while harboring emotional and psychological issues which desperately need attention however more often go untreated.”

Katie became an advocate for people like herself, living with HIV, in 2016 and is now serving as the Alabama State Lead for the Positive Women’s Network USA. She is a blogger and Community Advisory Board member with The Well Project, Community Co-Chair for the Alabama Department of Public Health’s HIV Prevention and Care Planning Committee, Community Advocate with Thrive Alabama, and a U=U Ambassador for the Prevention Access Campaign.

“When I came out as transgender my entire family disowned me, along with lifelong friends, I felt completely alone in the world except for the caring staff whom I found at my local AIDS Service Organization. Were it not for their acceptance and genuine concern for me and all aspects of my well-being, I know that I would not be here today.  Healthcare providers need to provide a space that is caring, accepting and safe because often it’s the only place where a transgender individual might feel safe. Creating that safe space develops trust which then encourages adherence to care.”

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