On Juneteenth morning, I was compelled to reflect on what it means to be free. The saying “I am my ancestors’ wildest dreams” is not lost on me. I am the descendant of enslaved Africans, who were forcibly brought to the United States to build a country that was nowhere in their dreams. I am the daughter of a father who served his city for over three decades as a law enforcement officer despite enduring police violence in his youth and a mother who managed to leave public housing and abject poverty to climb the corporate ladder with a GED as her steppingstone. Every day that I arise to my work as a mother and a physician, I give thanks for the shoulders I stand on and for the possibilities I can imagine for my children and the generations to follow them.
Yet even still today, on the heels of Juneteenth festivities and the closing celebrations of Pride month, Black and brown LGBTQ youth cannot fully realize the freedom that is their birthright. Here in Atlanta, I work in a clinic with one of the nation’s largest populations of pediatric patients with HIV. Each week we care for newly diagnosed adolescents and young adults and continue to support many who struggle to stay healthy on their medications. When diagnosed early and when societal barriers don’t interfere with the care process, HIV is a chronic illness that people thrive with. Despite our advances in HIV research and patient care, there are so many lives that are not being spared from this virus that was discovered nearly 50 years ago. Some 95% of our patients in our Family, Youth, and Pediatric Clinic are Black or Latino. Close to 50% between the ages of 13 and 24 identified as LGBTQ at the time of enrollment in care.
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The United States lags behind other developed nations in reducing the rates of new HIV infections and eliminating mother-to-child transmission. In 2017, Black men who have sex with men (MSM) were found to have a higher HIV rate than any singular country in the world, with men living in the southern U.S. being the hardest hit. At our clinic, our staff brings the best of available antiretroviral therapies, comprehensive social services and our hearts together to help our patients surmount the challenges they face living with HIV. But it rarely feels like enough.
For the last several years I have cared for an African American young woman who was diagnosed with HIV in late adolescence, after being brought to the emergency room following an assault she sustained in public for being transgender. She had lapsed in and out of living unhoused because her grandparents, who were her guardians, did not accept her gender transition and put her out of their home. She had a hard time finding employment because of unstable housing and transportation and therefore resorted to sex work to support herself. She suspects this is how she acquired HIV. At the time of her diagnosis, she struggled with poverty, food insecurity and poor health. As she emerged into adulthood, she wondered who in the world saw her and why she was enduring so much pain. My heart ached for her. She could be my younger sister, a neighbor, a student I taught at medical school, or even my daughter.
As a physician trained in and practicing palliative medicine who has cared for hundreds of individuals facing serious illness, I have come to understand that pain is not just physical. Pain can extend from a multitude of social, psychologic, spiritual and physical stressors that impact how one lives with illness.
For young people living in the margins with HIV, it is painful to face a reality in which racism, homophobia, transphobia and age discrimination limit your ability to access preventative health care and support systems that will help keep you safe and living into your fullest potential. It is painful to live in a state and a country where laws and policies are continually being constructed to minimize your existence and deny your freedom. It is painful to walk in a world in which you are continually fighting -- not only to be seen, but to stay alive.
Two years into treatment, my patient is thriving. With access to LGBTQ-positive, culturally responsive care that addresses her total needs, she has been supported in staying on medicines such that her HIV is well controlled; she is working and planning to re-enroll in school and has reconciled with her family. She is living fully into her identity and planning for her future. She shared with me recently that she “finally feels free.”
With June now behind us, may we not speak of liberation and pride without remembering those who are still struggling for both. May we all consider ways in which disparities and inequities show up in the lives of others whose realities may be very different from our own. Nelson Mandela once said, “There can be no keener revelation of a society’s soul than the way in which it treats its (youth).” Let us consider a city, a state, a nation in which all people, especially our youth, are afforded the freedom to be healthy, to love and to thrive as they uniquely and beautifully are.
Khaliah A. Johnson, M.D., is a pediatrician, palliative medicine physician, healthcare advocate and mother who resides in Atlanta. Her opinions expressed in this piece are her own and not reflective of the institutions for which she works.
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