Statistics into Souls

On a sunny December morning in Jacksonville, four kaleidoscopic patchworks were unfurled onto the floors of City Hall as a choir sang overhead. The crowd, pensive and solemn, encircled the quilts, each bearing witness to a multitude of panels containing names, testimonials, pictures, and stories. World AIDS Day 2017 was simultaneously a day of remembrance and sorrow, as well as triumph and hope; mourning for the millions of individuals who have passed away since the beginning of the epidemic, but celebrating advancements in research, treatment, and the fight for a cure.

The AIDS Memorial Quilt- more than 48,000 panels (and growing) in its entirety- serves as a visual reminder of the countless lives lost to the HIV/AIDS pandemic worldwide, and is a symbol of solidarity with the 36.7 million individuals currently living with HIV. Both the Quilt and World AIDS Day, celebrated every year on December 1st, are international efforts to expand HIV/AIDS awareness and prevention efforts by transforming cold statistics into real, immediate, human souls. The Quilt is a legacy to future generations, painstakingly stitched from memories of loved ones by friends, partners and family members. That morning, I finally saw the renowned AIDS Memorial Quilt with my coworkers at JASMYN, where I am serving as a Youth Care Coordinator during the National Health Corps’ 2017-18 term.

 

The Jacksonville area is no stranger to HIV, with its metropolitan Duval County area carrying the 9th highest rate of new diagnoses in the United States. Though the rate of new infections is on the decline overall, progress has been uneven. The LGBTQ community (especially MSM and transgender women), African Americans, and youth between the ages of 13-24 all face a disproportionate risk of infection. Rampant discrimination on the basis of race, gender and/or sexual identity too often culminates in unemployment, homelessness, lack of family support, loss of insurance, stress and a heightened risk for mental illness. As a result, individuals engage in behaviors increasing their risk for HIV, such as pursuing survival sex work to meet their most basic needs of living, like food or shelter. These social determinants also pose significant barriers to accessing testing or care. Fear of harassment and lack of competency from healthcare providers discourages LGBTQ individuals from getting tested for HIV or obtaining treatment through expensive antiretroviral medications; the latter also increases their risk of transmitting HIV to others. Critically, impeded access to healthcare also prevents individuals from accessing preventative measures such as condoms or PrEP- Truvada, when taken by individuals at high risk, can reduce odds of contracting HIV by over 90%.

At JASMYN, every single day is a battle against the HIV epidemic in North Florida, attacked through a broad spectrum of free services to LGBTQ youth. In addition to HIV/STI testing and prevention counseling, JASMYN provides youth with housing and employment assistance, case management, a food and hygiene pantry, community education, social support and developmental programming in a safe, affirming and encouraging space. As a Care Coordinator, I assist youth with navigating multiple arenas of healthcare; I’m responsible for not only HIV testing, but health education, linking youth to health insurance, primary, mental, and dental healthcare services, connecting them to hormone replacement therapy and PrEP, coordinating appointments and helping them with the cost of medication through prescription assistance program enrollment. By addressing the multiple factors driving health outcomes in individuals and communities, JASMYN enacts sustainable improvements in each youth’s multifaceted state of wellness- its effectiveness contingent upon its integrated, multipronged approach. 

 

I joined the National Health Corps with pre-medical aspirations, hoping (among others) to gain clinical experience and insight into HIV testing and prevention. However, my entire understanding of healthcare has been flipped upside down, though I’m less than halfway through my term of service. The biggest lesson I’ve learned so far is the pronounced effect that social determinants have on health outcomes. That health, far from being a singular state of being, or merely the absence of disease, is inextricably tied to every individual’s unique social, economic and environmental context. That helping someone heal means listening to their story, creating and maintaining a trusting relationship with them, and fully attending to the intersectional components of their identity. Too often, healthcare practitioners confine their attentions within the four walls of their clinic, all but ignoring the everyday factors in their patient’s lives that profoundly influence their health. Nowadays, it is possible to lead a healthy life with an HIV diagnosis, but this requires a healthy lifestyle, adherence to medicine, regular access to culturally competent physical and mental healthcare, and a strong support system. Likewise, HIV prevention becomes much more attainable when individuals have access to condoms, health education, employment, basic resources like food and shelter, etc. Simply conducting testing or prescribing medicine is a good start, but never enough.

On World AIDS day I stood with my JASMYN family, reading the names and stories on each quilt, reflecting upon the importance of turning statistics into souls in combatting the HIV crisis. Only by addressing these social determinants, by hearing the full story, can we hope to eliminate health disparities and promote healthy futures, a holistic sense of wellness in the youth we serve. I am so grateful for the opportunity to build relationships with the JASMYN youth, to hear their stories, to sustain them through their obstacles and celebrate their victories together.

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